So glad I found you guys! [Archive] - National Scoliosis Foundation Forums

Elisa

11-11-2010, 10:15 AM

Hello all. I just found this forum a few days ago and have been reading a lot of the posts and finding them so informative and have so many questions that I don't even know where to begin.

I live on Vancouver Island off the coast of British Columbia and I have a fourteen-year-old son who has been diagnosed with scoliosis. About a year ago, my husband noticed a strange bump on the right side of his back and we were sure it was from his poor posture while at his computer and we didn't look into it for several months after that until his bump became more noticeable.

Took him for a doc appointment, got x-rays done and it was confirmed he definitely has scoliosis. There are no pediatric orthopedic surgeons on Vancouver Island so he is waiting to see Dr. Riley over on the mainland at BC's Children's Hospital. The wait is LONG and my husband calls often and talks to the secretary there and the other day she told my husband that they are going to fit him in between patients otherwise he won't get in until 2012!

I don't know what degree his curve(s) are but I am going to find out asap from the doc here. I know he told me what they were but honestly it didn't mean much to me at the time but I do remember the doc saying that it was not mild, more moderate.

Now that I've looked at other pics of people on the Net, I feel as though my son's scoliosis is bordering on severe b/c his spine not only looks crooked but looks like it's twisting and making the whole right side stick out and his left side looks caved in. I also noticed the other day that he has stretch marks over his lower ribs on the right side, like the skin is way too tight there.

He does have some back discomfort and is constantly applying a muscle rub. We have just recently bought him a much better bed as well as a better more supportive computer chair as he is not an athletic kid at all and is more a computer nerd type.

I'm taking him to a chiropractor on Monday who also has scoliosis so hopefully he'll be able to give me more info as well as some exercises etc. that my son can do at home while he waits to see Dr. Riley in Vancouver.

Questions:

Anyone familiar with BC Children's Hospital and Dr. Riley?

Do you think he's too old for a brace? Since he's a boy, he's got a lot more growing years ahead.

What can I do to help my son in the meantime while we're waiting for him to be seen?

Thanks so much for reading and thanks in advance for any responses.

Elisa

11-11-2010, 05:20 PM

This really freaked me out when I first read it and I sent the link to my husband who promptly freaked out soon thereafter. Now after spending a few days reading posts here and elsewhere, I'm beginning to think this site is very one sided and perhaps is designed to scare people away from surgery and direct them to chiropractors instead??

http://www.scoliosiscorrectioncenter.com/theuntoldtruth.html

Pooka1

11-11-2010, 05:56 PM

Wow that site is a masterpiece of self loathing... I scanned several pages and couldn't find a single place where Hersh admits he is only a chiro. This is an area where places like the UK (and Canada?) are way ahead of the US... chiros are not allowed to use the "Dr." title.

Chiros are not trained to treat scoliosis FULL STOP.

Chiros shouldn't be treating kids AT ALL FULL STOP.

http://www.scoliosis.org/forum/showthread.php?t=11146

Elisa, welcome. I am sorry to hear about your son's diagnosis.

Time is a double-edged sword in the case of a 14 y.o. boy. The curve might be progressing but the child is growing.

I suggest you immediately apply to a Shriners hospital in the US near you. As I understand it, they take foreign patients. If you are accepted, you will likely be seen much earlier.

As for your questions...

Anyone familiar with BC Children's Hospital and Dr. Riley?

Not me.

Do you think he's too old for a brace? Since he's a boy, he's got a lot more growing years ahead.

That's for an experienced board certified pediatric orthopedic surgeon to answer.

What can I do to help my son in the meantime while we're waiting for him to be seen?

I'd apply to Shriner's ASAP if I were you.

Good luck.

Pooka1

11-11-2010, 05:57 PM

By the way, it should go without saying that people like chiros who don't have a lick of training in surgery should not be commenting on surgery.

Elisa

11-11-2010, 06:07 PM

Thanks for your reply Pooka. Now that you mention it, there is no "Dr." title in front of chiropractors' names up here. I'll read that link you posted.

I am going to look into the Shriners for sure. Thing is, when my husband talked to Dr. Riley's secretary a while back and mentioned the Shriners she was very quick to tell him that IF we went the Shriners' route they (BC Childrens) would have nothing to do with his followup. What do you guys think about that? I think the closest Shriners' hospital to us is in Oregon which of course is two states below us and out of Country. So confusing and so many decisions to make.

LindaRacine

11-11-2010, 08:04 PM

Pooka1

11-12-2010, 04:22 AM

This is another example of taking all the small, negative outcome studies, and ignoring all of the big, positive outcome studies. This is intentional deception. How do these people live with themselves?

Chiros are not trained in research or even anything resembling rigorous science and therefore don't understand that how they speak about studies is naive, ignorant, and misleading to themselves and others.

Chiros know they have a credibility problem which accounts for the fact that the word "chiropractor" or "chiropractic" doesn't appear on that web site although Hersh is a chiro. But he uses the title "Dr." This is a very good argument to disallow chiros from using the doctor title. They have the lowest average GPA of any of the allied medical professions and it shows. I would never bring a child to a chiro though I was helped as adult by one... he did some adjustments but admitted that PT and time would solve the problem. Honest.

Still there are top shelf thinkers and evidence-based chiros like Mark Morningstar. Morningstar clearly understands how to do research and how to write it up. He should have gone to medical school in my opinion. That is NOT the case with the Clear types and you can see this on some recent threads Fix's site. Morningstar is eating their lunch scientifically, logically, intellectually, etc. etc. etc.

mamandcrm

11-12-2010, 07:13 AM

I think Gayle (leahdragonfly) has experience with the Oregon Shriners Hospital. You might try PM'ing her to ask her about it.

Elisa

11-13-2010, 12:58 PM

Thanks for the input guys.

I have done so much reading these past few days and although it's overwhelming it is also good to know I'm not as alone as I thought I was and am now feeling somewhat better about dealing/managing my son's scoliosis.

Overall, he is doing great, feels great, other than a bit of backache which he isn't complaining about but I know he feels it b/c he likes to put that muscle rub on after a full day of school and walking to and from as well.

I'm going to keep that chiro appointment on Monday after school, mostly b/c I'd like to learn about some exercises that he could do at home, if for nothing else than to improve his muscle tone. As mentioned, he is not in any way shape or form an athletic kid and probably spends too much time playing computer games, reading and watching TV.

In a weird sort of way, him having scoliosis is/would be easier than if my other boy or my daughter had it b/c my oldest son is much more active and sporty and my daughter would be so concerned about her body image. She is the one that gets most upset about his crooked back and his hump that has developed. Scolio boy hardly seems phased at all and he is a genuinely happy and content kid.

Today him and I are going shopping for some new jeans and a few new sweaters etc. In a strange sort of way, this diagnosis has brought not only my son and I closer but has brought our family closer. That said, I need to be very careful that I don't "dote" as my husband has pointed out, and let him do things by himself, or splurge on him b/c 'I' feel sorry for him and his diagnosis. Does this make sense?

Elisa

11-14-2010, 06:30 PM

The jeans shopping didn't go all that well. First off, he's bigger than I thought he was so he's now in the men's section but for some reason all of the jeans looked so short on him. I'll take him to some different shops this week and hopefully the salesperson will help me find some jeans that look better on him. I did buy a hoodie he liked though. He was looking at a bunch of slinky sweaters and I'm glad he decided against them b/c all I could think of was that anything slinky would accentuate his back hump and high right shoulder but didn't have the heart to tell him that.

I'm kinda looking forward to this chiro appointment tomorrow b/c other than our family doc, no one has actually looked at his back. I just want a bit more feedback from others I guess. I don't know what his curve(s) is but as mentioned, 38* sticks in my head but my husband said he recalls been told 47* so I'm curious to see what the chiro says as well as I'm going to call the doc's office tomorrow and make an appointment so I can get the actual results of the x-rays. He's had two sets done about five months apart. I'm going to write down all the numbers from both sets and will post them here.

I would really like to take pics of his back and post them here as well but I don't want to make him feel self-conscious so I'll hold off on that for now.

Sherie

11-14-2010, 09:11 PM

Hi Elisa

My dd isn't the athletic type, she's also a computer "nerd" and has decided on a career in history. I was glad that at least the surgery hasn't had a huge impact on her in terms of what she likes to do. Not to say it hasn't affected her but it could have been worse.

I totally agree that our experience with her scoliosis brought us all closer together, that's one thing that I feel was a positive outcome. I wouldn't worry too much about doting or spoiling your son, if you don't do it now, I don't think this will change anything. My dd is now in college, driving and pretty much leading a normal life.

I dealt with 3 chiropractors prior to surgery. At the time, the first one we saw was the only provider of Spinecor in Houston so we went to him for the brace. It wasn't successful and his "program" that he promoted in conjunction with the brace (therapy and nutrition supplements) was very costly. I don't doubt that some kids had good results with the Spinecor, but Sheena's curves were already too high for it to work.

The 2nd chiro, I sought out specifically because he had some special equipment that he used for his regular back patients and I wanted to try. He did not deal with scoliosis patients and was very honest and frank with me that he didn't know if the therapy I had in mind would work. We put a time limit on the therapy and after several months with no improvement, we both agreed it was time to quit. He's one of the good guys in my opinion and didn't do anything to take advantage of us.

The 3rd chiro was Dr. Woggon of Clear. To be honest, I was very desperate to find something to avoid surgery, especially with the length of fusion my daughter needed, I had to resolve in my own mind that there was nothing left to do. It wasn't successful and was also very costly.

I guess what i'm trying to tell you is to be careful about chiros. I think they have their place with back pain management but not with scoliosis. I also found that they're very friendly and draw you in. We had a very bad experience with the first surgeon we met so the chiro was like a breath of fresh air in comparison.

I was wondering if you can get an appt. any sooner at another hospital. I realize Canada has a completely different healthcare system, but we went to 4 surgeons (not including the 1st one) before making a decision. Do you have that option?

leahdragonfly

11-15-2010, 08:08 AM

Hi Elisa,

I would most certainly go to Shriners in Portland if at all possible, for the sake of a second opinion if nothing else. Your canadian insurance does not need to know, and I am appalled that a secretary would threaten you that they wouldn't see your son if you went to shriners. I would demand to see that policy in writing before worrying about it.

We ultimately discontinued care in Portland because we felt strongly that we wanted Leah to have vertebral stapling (VBS), which they do not offer in Portland. But If your son needs a brace and you were to decide to try that route, they do have a great orthotics guy, Don Hayhurst, who is a fantastic brace maker. And, amazingly, all care at Shriners is free of charge, and you do not need a sponsor.

If I was in your shoes I would not be very happy waiting some long, indeterminate length of time to be seen by the orthopedist. Especially if the curve is 38 degrees and you want to pursue bracing. If the curve is well into the 40's, you would still get a thorough evaluation in Portland.

You can PM me if you'd like to hear more about our experiences in Portland.

Gayle

majo

11-16-2010, 10:34 AM

Dear Elisa, I have read your post. I am 36 now, and diagnosed at 14, like your son. I wasted my time in chiros, until the scoliosis was very advanced.
So I suggest contact an specialist asap. In the mean time I strong suggest practising sports specially swimming.
The most important thing that I have learnt is to do sports, in order to put my body stronger than it was.
I had surgery at 27, and from it I have been practising swimming and pilates. I really think that the most important thing is to conect with the own body, doing yoga, pilates, and others.
Please be free to ask anything.

jennilynn

11-16-2010, 11:27 AM

I would love to find out what degree he's at. My daughter is at 66, has a lumpy spot where her curve is and her right shoulder sits much higher than the left...

We did a brace, it didnt' help at all. Even though she's only 12, her ortho said surgery MUST HAPPEN fast, because in 3 months she progressed 10 degrees on her curve.. she will have some growth in her lower back, legs, etc. but the section he fuses of course will not grow. We're good with that and so is she...

Definately, find a second opinion!! Be wary of Chiro's. Our chiro's in our area won't touch a scoliosis patient (one will I think, but the one I see for my back adjustments, said that with progressed curves, that adjustments and such are not helpful and can possibly harm a child). Therapy may help any pain, but it wont' change the curve(s) according to our ortho surgeon.

Explore your options and definately advocate for your child... only YOU are going to do that the best! :D Keep at it!

good luck!!

Jen

Angele1

11-17-2010, 08:24 AM

leahdragonfly

11-17-2010, 08:54 AM

Hi Angele,

with all due respect, this type of post is NOT what Elisa needs right now with her son's new diagnosis. This type of post is very inflammatory and will ignite a huge flame war, and Elisa will probably want to run away screaming from the forum.

May I suggest that if you wish to share your point of view about chiropractic, you start a new thread so that Elisa's thread does not get hijacked and ruined.

Since you are also new to the forum, it would be very educational for you to read back into the archives to understand the history of the discussions here about chiropractic and Clear. You are of course entitled to your opinion, but those of us who are here for support and to support others absolutely hate seeing these flame wars about these two controversial subjects reignited.

Now, back to Elisa.

Best regards,

Gayle

Angele1

11-17-2010, 09:39 AM

Absolutely not intended to start a flame war! There were comments here with regards to chiropractic so I chimed in. I am sensitive to these issues and am a mother of three. I know what it is like to get a diagnosis for one of your children and to tear yourself apart over the choices.

My sincerest apologies...wasn't trying to start anything.
Perhaps if time warrants I will go back and start a new thread.

Please believe that my intentions were pure and not set out to upset anyone.

I will go back and check out the multitude of archives...

Elisa

11-17-2010, 01:45 PM

Thanks again for the input guys. I am a fairly easygoing and open minded person so I can handle pretty much most things that people post and am in no way offended by anything I've read here today.

I haven't been online in a couple of days b/c I got called back to work. I thought I was laid off for the winter but things are picking up again and I'm glad to be back working b/c I really do enjoy my job.

Okay, I took my son the chiro on Monday and it was a very interesting visit to say the least. The chiro has mild scoliosis as does his teenage daughter so is definitely familiar with this disease. At first he was telling me all the negative things about surgery: risks, rigid spine, nasty metal rods as well as my son wouldn't be able to do contact sports, ski jumping or horseback riding etc. I listened to everything he said and explained to him that my son really has no interest in sports so that's not a huge issue but of course I'm concerned with the risks of surgery as well as potential problems down the road with the rods etc.

Then he got my son to take off his shirt so he could take a closer look at his back and he immediately said that it was a lot worse than he thought and said he has kyphosis-scoliosis and there's no way he could do anything about the curve or kyphosis and that in his case he thinks that surgery is probably the right thing to do. He suggested being a "squeaky wheel" and keep on bugging the BC Children's Hospital or possibly contact Shriners. When I mentioned the problem with followup afterward he seemed to think hounding Dr. Reilly's office was probably more realistic.

I really appreciated his honesty and told him that I wasn't expecting him to cure my son's scoliosis, just perhaps relieve some of his back pain while we were waiting to be seen by an ortho in Vancouver. He did a few things to my son's neck and back and was quite gentle and all in all my son felt good and interestingly enough, it's Wednesday and he hasn't been putting on that A535 rub like he usually does. He's going back this Thursday and again on Monday/Thursday.

Under BC Medical, he can have ten visits per year and each visit costs me $7 so it's certainly not costly. He also has access to his x-rays online so he is going to look at them which is great b/c now I won't bother with that doc appointment if the chiro can tell me exactly what his measurements are. Hopefully I'll know by tomorrow's visit.

No, I don't believe that I can just pick a surgeon of my choice here in Canada but I'm trying to find out. There is a Shriner's hospital in Montreal but it's a LONG way across this huge country and I'm almost sure Shriner's would recommend the one in Portland Oregon b/c it's much closer. I did print off their application in case we decide to go that route.

Yes, Dr. Reilly's receptionist DID tell my husband that if we went the Shriner's route then there would be no followup(s) from their end. I too find that appalling.

My son is in really good spirits and is handling all of this with ease at the moment so that is such a relief. The chiro suggested that I take pics of his back on a regular basis and keep a diary so to speak. I asked my son if he'd mind if I did this and he said: "sure mom." He's such a great kid.

Angele1

11-17-2010, 02:35 PM

Hi,
I am glad that your visit went well at the chiropractors office! One thing I would recommend is to find a doctor that utilizes techniques such as Pettibon if at all possible. They have extensive training in spinal biomechanics and restoration of curves in the neck and low back from the side view. To take it one step further, and only if you are open to the idea, I would encourage you to take a closer look at the CLEAR program..just to gather information, talk with these doctors...it may open your eyes to other possibilities. I am a true believer in knowledge is power. We all have choices to make but how can we make them if we don't have all the info?

This goes back to my earlier post to you that each chiropractor is different, just like each surgeon, pediatrician is different. I know you are happy with this doc but it can't hurt to learn more.

Wishing you all the best!

Pooka1

11-17-2010, 02:39 PM

If they were such "quacks" why would licensure even be allowed?

I don't know but my guess is to generate a list so that the BBB can set up their files ahead of time so as to be ready for any complaints. :D

Elisa

11-17-2010, 02:53 PM

I was asking on the forum about CLEAR and how much it cost but I don't think I got any responses on that one. I had read somewhere that it was quite costly and honestly right now our finances are not the best. We are in a recession here as well as with the winter coming on, both my husband and I are not working all that much b/c he is in the construction industry and I work at a hotel and both really slow down this time of year. I'd still be interested in knowing how much this CLEAR program costs b/c I doubt very much it would be covered in our regular medical insurance.

Elisa

11-17-2010, 03:11 PM

Forgot to mention that Dr. Reilly's receptionist did say that he had looked at both set of x-rays that were taken about five months apart and that "he could be a candidate for surgery" and will be fitted in between appointments. This is good news as well as bad news b/c now I know that he feels his current condition is quite severe and needs to be seen asap. The chiro the other day confirmed this also and has basically suggested being a "squeaky wheel" as mentioned already. If I get the numbers tomorrow, I will post them as soon as I can.

I really want to take pics of his back and post them also but a part of me just doesn't want to post them for fear I'm going to be told that I'm a negligent mother b/c I didn't notice his condition sooner and thereby should have been doing something proactive about it. I can honestly tell you though that one year ago his back looked a bit off and six months ago it did not look nearly as bad as it does right now. I believe this is a very rapid growing kyphosis-scoliosis case unfortunately.

michael1960

11-17-2010, 03:50 PM

Elisa

Do not be too hard on yourself. Syd was at 23 degrees and doctors suggested us just keeping an eye on it. And in 3 months she was 36 degrees. It happens very quickly. I wish I would have done something sooner. The fact that you are looking into everything you can do for him right now makes you a very good mother!

Get to the Shriners as soon as you can, even if you have to travel a ways to make it happen. I drive about 9-10 hours every time I take Syd to Shriners in Philadelphia and about 12 hours every time I take her to a chiropractor in Manhattan. It is worth it.

I have found it an incredible bonding opportunity for my daughter and me. And one of my older sons always goes with us too. And the last time we went to Manhattan my mom joined us for two weeks. We have made the most of these long trips. We always drive to keep the cost down.

Regarding Clear. Because there is no Clear chiropractor near us we have to travel and do the two week intensive program. It is usually about $5,000-$6,000 for the two weeks (plus travel/hotel expenses). Syd was in treatment about 6-8 hours per day, and about 4 hours each day on the weekends. It is a lot of work. My insurance did not cover it.

My daughter is only 9 so her treatment and what works for her is probably much different than that for your son. But we have combined a treatment program of Clear, SpineCor brace, and Boston brace. And we periodically visit a Shriners' VBS pediatric orthopedic surgeon to monitor Syd, just in case her curve increases and she needs VBS.

I think you mentioned SpineCor brace. I will give you my personal thoughts on it. While it is great for Syd at 9 yrs. old, I don't know how much the SpineCor will hold the curve for a young man of 14, especially during a growth spurt. I would not use it to try and hold an aggressive curve.

I would assume that most doctors would suggest a hard brace of some type to try and hold the curve from progressing. That is your first goal, stop the curve progression. If you can stop it, it will give you some time to evaluate your options. However, if VBS is being considered, it is critical to see a VBS doctor ASAP due to his age and size of curve.

Every child/patient is different so only a qualified pediatric orthopedic surgeon, specializing in scoliosis (and ideally VBS) can give you the best advice.

Most important is to take action and do as much as you can right now. The people at Shriners are wonderful and there is no charge. At our first visit to Shriners we were fitted with a Boston brace, and picked it up 2 weeks later, and there was no charge for it.

Regards
Michael

Elisa

11-17-2010, 04:26 PM

Thanks for the input Michael. Maybe I am being a bit hard on myself or maybe I was a bit in denial as well. I had somewhat heard of scoliosis before but I guess I thought it was an old persons' disease or something and that my son's bumpy back was b/c of spending too much time on the computer sitting in a bad position. I just wish they still did the school screening b/c I'm sure they would have confirmed scoliosis much earlier. Yeah, they check for lice but not for serious diseases like scoliosis. :rolleyes:

I was just looking up Marfan's Syndrome b/c he's such a lanky boy but I do not think he has that disease as well b/c he is very well proportioned, his hands and feet are normal, no eye issues, unusual chest, crowded teeth etc. Yes, he is lanky but so am I, his brother (6' 3") and sister (we're 5' 9" and slim) but don't have the other symptoms.

I will post his measurements tomorrow if I get them and I do hope I get them and if not I will snap some pics of his back and post them here. I will also call the Shriner's directly and talk to someone asap.

Angele1

11-17-2010, 04:28 PM

I agree with Michael. You are doing everything you can to help you son. Try not to be too hard on yourself. As far as CLEAR goes, even if you can't afford the program it is worth learning about as the approach is very different. I am sure Michael can fill you in on that one as he has been through it. Just looking at scoliosis from a neuromuscular standpoint than from simply a Cobb angle number may give you some insight on how to help your son.
Once again, just my two cents. But as mothers, we all have things that we feel bad about. But the reality is we do the best we can...that is all you can do..that and be there when our kids need us!

If you are interested in learning more about Cobb angles and what they really mean and what they are measuring you can surf the net to find some good info. Not sure if this forum has it as I haven't seen any yet as I am relatively new but the fixscoliosis.com site just recently put some interesting articles up from The American Academy of Orthotists and Prosthetists. You may find it an interesting read...
Best to you and your son!!!:)

Elisa

11-18-2010, 06:38 PM

Argg, I just typed out a bunch of details and then somehow I lost it all. Short story... am back from the chiro and he accessed my son's x-rays online and gave me a photocopy of one pic and wow my son's spine is snaky. The chiro basically wants me to keep pounding on Dr. Reilly's door as well as possibly getting in touch with the Shriner's. He suggested one more set of x-rays, which would mean three sets in about a year and then have the hospital put them on a disc for my use.

His spine is bad. Very bad. It has progressed (why do they call it progression when it's a regression?) from a 47* thoracis curve about six months ago to... I almost feel this warrants a *drum roll*... to 75*. I wanted to know the degree of the lumbar but he didn't have it and he tried to access his x-rays again from his laptop but it was not cooperating. :/

Elisa

11-19-2010, 03:06 PM

Needless to say I didn't sleep all that well last night and felt so spaced out at work today. So glad I got through this day and am looking forward to having tomorrow off. I just can't believe my son is functioning so well with that kind of twisted spine. I knew it was looking worse lately but am pretty surprised that it's at 75* b/c he carries on normal daily activities, doesn't have any breathing difficulty and only minor aches.

I wonder if the chiro misread the info on his x-rays. I think I will go in and see our family doc on Monday and get a confirmation from him b/c he would have gotten a copy of the results from the hospital. And if he did get the results and he actually looked at them, you'd think he'd have his secretary call me in to discuss them eh? Then again, he probably feels he's done his part by referring us to Dr. Reilly in Vancouver so it's basically out of his hands now.

Well at least we are pretty convinced now that he will be heading into surgery in the near future, and as someone here said, not having a choice to make will be easier. Or something like that.

LindaRacine

11-19-2010, 03:24 PM

Hi Elisa...

First, I would not trust that the chiropractor, or even your family doctor, can correctly measure the films, so your best bet is waiting until they can be measured by a qualified scoliosis specialist. Also, while 75 degrees is a large curve, it's far from being disabling. Believe it or not, there are people walking around with curves well over 100 degrees (I've seen curves close to 200 degrees), who are perfectly functional.

Regards,
Linda

Elisa

11-19-2010, 03:40 PM

Thanks for that comment Linda, it is somewhat encouraging. I too am not taking the chiro's word on the measurement either b/c on our first visit he was guessing that my son's curve was somewhere in the 20's and I'm sitting there shaking my head and thinking he's nuts if he thinks that b/c I 'know' it's more than that and why is he even 'guessing' when my son hasn't even taken his shirt off yet to be looked at. Of course when he looked at his back he straight away said it was a lot worse than he thought. I mean really, why would someone guess at something like that anyway? That was weird. Also he didn't have a lumbar measurement at all which I found odd b/c since I've started reading posts, I always see two measurements. Correct?

I thought about going back to the family doc b/c I was thinking that he would have a copy of the x-ray info and that he could read out the measurements to me, not actually try to measure him himself.

Totally off topic here but I was wondering if you might be able to change my user name to Spiny Mouse. When I first joined this forum I came up with the handle Elisa b/c it is a feminine name but is close to my son's name Elias but now I'm thinking that it's going to be very confusing b/c those two names are too similar and I'd like to use my actual name in a signature someday so this would be even more confusing, lol.

Pooka1

11-19-2010, 04:26 PM

Second the motion to change "Elisa" to "Spiny Mouse." :)

Elisa

11-19-2010, 04:52 PM

Pooka1

11-19-2010, 05:01 PM

Some forums such as ProBoards lets you change your display name but VBulletin doesn't. I really should have put more thought into my handle but I was anxious to start posting. :p

I am a huge fan of small furry critters, especially rodents (have seven chinchillas) and of course spiny mice are really cute and this is all about the spine... so... it fits.

So cute!

Here's one I like...

http://cuteoverload.com/2009/12/26/ill-take-a-whiskey-sour-and-hold-the-sour/

Did you know Syrian hamsters have no limit when it comes to alcohol? It's true!

Also, hamsters cook jello...

http://www.flickr.com/photos/victoriabelanger/4187319905/in/set-72157622864971354/

I am a huge fan of rodents. I have guinea pigs. More specifically I take as many pigs as I can from rodent rescues and animal shelters. I have five at the moment, 4 from a rodent rescue and one from the shelter in Calgary, Alberta that we adopted in 2004 when we lived there. He's a Canadian citizen (never renounced his citizenship) and sometimes pines for the Rockies I suspect. :D

There are too many pigs in need of homes. Adopt, don't shop.

leahdragonfly

11-19-2010, 06:14 PM

Hi Elisa,

I am sure you can re-join with another name. Then you can start signing in and posting under that handle. There are others here who have changed their handle for whatever reason. It is not a problem I do not believe (Linda will correct me if I'm wrong).

BTW, I LOVE your photo of the cute little mouse! I am definitely an animal lover too. We have 3 dogs, 3 cats, 3 chickens (egg hens), 4 parakeets, and a parrotlet.

Take care,

Elisa

11-20-2010, 12:13 PM

Nice to see other animal lovers out there. Those pics of the hammy are so cute. Love the Jello one, lol.

All seven of my chinchillas are rescues. A couple I took in about a year ago b/c they had been quite neglected, a couple more were about to be fur coats but were spared b/c the guy surrendered all his herd to the SPCA, one other I had flown over from the mainland b/c he was sitting in a shelter there and it was unlikely he'd be adopted any time soon b/c of the remoteness of the place. And my first guy was found wandering around outside so we captured him, no one claimed him so we kept him. He's the one that started all this craziness and I still have him. It's been about five or six years now. Might as well mention the three lady kitty cats that are all rescues as well: Alice, Molly and June. That's it!

Still reading and reading and thinking but in a bit I'm taking my son shopping again to see if we can find some jeans. We tried last week but I left it too late in the day and neither of us were in the mood to shop anymore.

I'd like to take some pics of his back and post them but I think I'll wait a bit b/c we've been obsessing over his back lately with the chiro visits and all and I want to give him a bit of a break before I do a photo shoot b/c I don't want him to feel self-conscious. I will take a pic of the photocopy x-ray and post it but it isn't the best quality but you can definitely get the idea.

I'm starting to feel I have to watch what I say to him. We had a bit of snow yesterday morning and it was a bit icy and I told him to be careful not to slip on the ice otherwise he might twist his back. Then I stopped myself and told him to just be careful of the ice. Kinda like the guy who's working in the garden with one hand and you ask him if he needs a hand. :rolleyes:

Elisa

11-20-2010, 02:02 PM

I just took these three pics of a photocopy of one of his x-rays. Obviously not the best pics but it does give a good idea of how curvy he is. Comments?

http://i241.photobucket.com/albums/ff196/Carol-Anne_01/Scolioboy/003.jpg

http://i241.photobucket.com/albums/ff196/Carol-Anne_01/Scolioboy/002.jpg

http://i241.photobucket.com/albums/ff196/Carol-Anne_01/Scolioboy/001.jpg

Edit: This x-ray was taken from the front as his twist and hump are on his right side, but you guys probably have that figured out already b/c you're way more familiar with x-rays than me.

Elisa

11-20-2010, 10:17 PM

I really enjoyed having today off and I pretty much spent the whole time reading and researching scoliosis. I really found the u tube videos interesting and most of them were of girls. I was hoping to view a few boy videos but I couldn't find much. I even watched videos of the actual operation and metal work and early recovery and was touched by their stories.

That said, it seemed most of these surgeries were for mainly obtaining a straight back, cosmetic so to speak and yes some of their backs were extremely twisted and contorted and some complained of pain, but mostly it seemed that people got this surgery for cosmetic reasons.

I'm looking at my own son's spine/body and thinking that yes he has a big curve and a right rib hump, but he's functioning fine and no one other than the family suspects anything is really wrong.

I'd hate to put him through this surgery if in the end it's only for cosmetic reasons b/c that's way too much of a risk that I/we are willing to take right now.

And the pendulum swings.

LindaRacine

11-20-2010, 10:47 PM

Elisa

11-20-2010, 10:52 PM

Other than the way their back/body looked they didn't complain about anything else. Like I said, every video pretty much was of girls and they complained about how they looked. I didn't hear them say anything much about how they felt physically and that worries me. I would like to see some videos of boys, particularly young teens.

LindaRacine

11-20-2010, 10:58 PM

The vast majority of juveniles, adolescents, and teens with scoliosis, do not have pain. Usually, surgery is undertaken to stop the progression of curves.

michael1960

11-21-2010, 03:27 AM

Hi Elisa

I agree with Linda. A curve can progress 1-2 degrees per year through adult life. I know everything I am trying to do for my daughter is all about trying to help minimize the impact of scoliosis on her for the next 70+ years.

Since I have a 9 yr. old girl, I am in no position to make any recommendations for a 14 yr. old boy. The only thing I can say is that he may or may have not gone through his growth spurt. If not, there may be a sense of urgency to get him in a brace or VBS (with hybrid rod). His curve may be too large for VBS/Hybrid Rod.

It is very important to get every option on the table.

Let's discuss CLEAR for a moment. And I have been doing a lot of research myself on CLEAR (even though we have done it a couple times) and other techniques (Pettibon, ARC3D, etc.). I have learned that CLEAR, ARC3D, and other "methods" are really programs or names created for a non-surgical treatment of scoliosis. Often, these different programs use some of the same techniques. For example, someone in a post mentioned Pettibon. I know when we did CLEAR we did a lot of Pettibon exercises using weights.

Here is a site I found that I like: www.scoliosis3d.com. It discusses several different methods very similar to CLEAR. However, I like this site (Dr. Morningstar) because he also supports bracing (with Cheneau brace).

I cannot give you advice on what to do with your son, but I will tell you what I would do if it was one of my sons. I have 4 sons, 3 of them older than your son (and I have 3 daughters). I would do the following for my son:

1. Brace him immediately with the best brace I can afford, maybe a Rigo-Cheneau brace, or some hard brace (definitely not the SpineCor brace), and stop any curve progression, and maybe get some curve reduction, but at this point the immediate goal would be to stop any further progression, especially if he is growing. When he is growing is when the curve can progress significantly. Please don't assume the curve is stable.

2. I would consider seeing a chiropractor who specializes in scoliosis, maybe from CLEAR or ARC3D. I would find one that supports bracing (therefore it would not be CLEAR). I would have my son in a 2 week intensive program (not sure if ARC3D offers it, but CLEAR does) and wearing a hard brace. Based on the stiffness of his back, they may be able to get it down 10-20 degrees, and then use bracing to hold it along with some home exercises. There are no guarantees it will work, like there are no guarantees with surgery.

3. Seek the advice ASAP of 2-3 pediatric orthopedic surgeons specializing in scoliosis.

I am sure some on this forum will disagree with me. So please understand, I am just telling you what I would do. It may or may not work. But I think there is a sense of urgency due to your son being only 14.

My daughter is only 9 and will hit her growth spurt around 11 (maybe). I feel an incredible sense of urgency to get her curve reduced and stable as much as I can before she is 11. And I will have her in the best hard brace I can afford when that time comes.

Unfortunately, cost of treatment plays a role in all of our decisions. If I could afford it I would have my daughter at the Manhattan chiro doing CLEAR/Pettibon every 3-6 months for an intensive 1-2 week treatment program. But I cannot afford it. So, we have to rely on a brace (not the one I really want, but again, an issue of paying for the one I want) and we have to rely on home exercises. After the initial investment of some equipment, for the most part, the home exercises are free.

Please let me know if you have any questions.

Mike

michael1960

11-21-2010, 03:36 AM

Hi Elisa

On a different note, I don't know if you read my PM, or ever received it, that I worked and lived in Vancouver for a year. One of the most beautiful places I have ever been.

And I used to go to Vancouver Island a lot, taking the ferry over to the island. Maybe from Horseshoe Bay (I don't know if that is right, or it was some other bay). I had my family in Vancouver with me for awhile and we lived on Robson street.

You are fortunate to live in such a beautiful place. We used to go to Vancouver Island because there was place we would rent a cabin and we would kayak all around. The kids loved it.

I do wish I had taken the time to ski while I was there, but never did. This was probably about 10 years ago. I went back one time with the family.

I just wanted to let you know that I have lived there and miss it very much. My wife who has never wanted to leave our home in Columbus, OH, said for the first time, that we could sell the house and move to Vancouver.

Please let me know if you have any questions, or you just need someone to bounce off some ideas. We can do it on the forum, in a PM, through email, or over the phone.

Mike

scoliboymom

11-21-2010, 07:09 AM

I think whats most important right now is to find out from a qualified orthopedic surgeon what his true curves are and see what the progression has been and go from there.

Regarding bracing, and I say this only from my own experience, my sons surgeon said to him that at the point he was at bracing would actually do more harm then good. Its been a while but I think the thinking was that because the curves had reached a high degree a brace would push the curve into the vital organs. Of course this could also be related to the amount of rotation and my sons rotation was high. My own feeling from seeing photos of your xrays is that they do look very similar to my sons xrays as in the curves are quite significant.

Regarding cosmetic reasons for doing surgery, that only becomes a bonus from having it done. I would never have allowed it if that was the only reason for doing it. It's the long term future benifits that you must consider.

And by the way I realize its a long way but the doctors at Sick Kids in Toronto are terrific if you are looking for more options.

leahdragonfly

11-21-2010, 08:47 AM

[QUOTE=scoliboymom;111816]I think whats most important right now is to find out from a qualified orthopedic surgeon what his true curves are and see what the progression has been and go from there.

Regarding bracing, and I say this only from my own experience, my sons surgeon said to him that at the point he was at bracing would actually do more harm then good. Its been a while but I think the thinking was that because the curves had reached a high degree a brace would push the curve into the vital organs. Of course this could also be related to the amount of rotation and my sons rotation was high. My own feeling from seeing photos of your xrays is that they do look very similar to my sons xrays as in the curves are quite significant.

Elisa,

I totally agree with scoliboy mom's post above. I know posters above are sincere in their interest in giving advice for certain types of treatment, but you must remember, lay advice from non-medical professionals and/or lay parents is not what you need. Your son's curve looks very significant, and you need to discuss it with a qualified pediatric orthopedic surgeon. No one else is qualified to give you advice on your son's treatment. I am glad that your are researching and educating yourself as much as possible. You are a great mom, and you are doing the best possible job for your son.

Take care,

Pooka1

11-21-2010, 09:26 AM

That said, it seemed most of these surgeries were for mainly obtaining a straight back, cosmetic so to speak and yes some of their backs were extremely twisted and contorted and some complained of pain, but mostly it seemed that people got this surgery for cosmetic reasons.

At the cost of these surgeries, there is not a single chance insurance companies would pay out just for a cosmetic procedure.

So that can't be right from that standpoint.

Further, Josh Woggon, head of "research" at Clear and resident "genius," claims that promises from surgeons that there will be any cosmesis gains from surgery are lies. So whatever reason surgeons are doing this surgery, they do NOT include cosmesis. :D

Pooka1

11-21-2010, 09:37 AM

I seriously doubt you will find a board certified orthopedic surgeon who would brace a curve much of 50*. That doesn't occur.

Certain Spinecor providers will brace very large curves per at least one video on youtube. It's outrageous.

Elisa

11-21-2010, 09:51 AM

Thanks again for all the input. The information out there especially on the Net about scoliosis is SO overwhelming. I spent the entire day yesterday researching and reading and by the end of the night when I had finished watching twenty or more surgery videos my head felt like it was going to explode again.

Since this disease affects girls four times more than boys the Net is filled with videos of girls' stories and they came across as being mostly concerned with their new straight back which led me to believe these girls were either being pushed into surgery by their parents or they themselves were forcing the issue. I really would like to have seen and heard some teenage boys' stories but I just didn't come across them last night.

I know my son has to see a specialist ASAP BUT you guys have to understand that living here in Canada and especially in BC, there are only TWO specialists that are available to look at and properly diagnose my son. I keep reading that I should get a second or third opinion but I'm having a hell of a time just getting in to see ONE! This is so frustrating and it makes me want to cry. That's our wonderful medical system for you. Yes, it's basically free and can walk into any clinic any time and be treated without cost but if you our your child needs to see a specialist then it takes forever it seems. I am envious of you guys in the US who have more specialists floating around than you know what to do with.

Michael, I am glad you and your wife like Vancouver. Yes, it is a beautiful place for sure. Too big and busy for me so I prefer to live on a much quieter Vancouver Island. I spent most of my life in Victoria but that became too busy and too expensive so we moved up to Campbell River which is a three hour drive north of Victoria and we absolutely love it here and I doubt we'll ever move.

Pooka1

11-21-2010, 10:03 AM

I know my son has to see a specialist ASAP BUT you guys have to understand that living here in Canada and especially in BC, there are only TWO specialists that are available to look at and properly diagnose my son. I keep reading that I should get a second or third opinion but I'm having a hell of a time just getting in to see ONE! This is so frustrating and it makes me want to cry. That's our wonderful medical system for you. Yes, it's basically free and can walk into any clinic any time and be treated without cost but if you our your child needs to see a specialist then it takes forever it seems. I am envious of you guys in the US who have more specialists floating around than you know what to do with.

I winced for you when I read that. I lived in Calgary for three years and know the score in re the medical system. We were US ex-pats and so had private insurance. But with long wait times, I was simply going to move back to the states if we needed any serious or immediate medical care. Or drive 2 hours down to Montana or something. Luckily, my girls had not developed scoliosis when we were living in Calgary.

That's why I immediately suggested Shriners to you. I really think it is probably your best option at the moment. You son's curve appears to be at least 80* and likely between 80* and 90* to my UNTRAINED eye and you need to get in somewhere soon. I hope if you send the radiographs along with the Shriners application, you will go towards the head of the line.

Good luck.

Elisa

11-21-2010, 10:05 AM

My husband also reminded me that girls are very social and tend to take a lot of pics of themselves and make little videos whereas boys tend to not advertise their condition and generally aren't as social. I think that's why I had a hard time finding any boys' stories. Well, I am going to start taking pics and keeping notes and someday if/when my son has surgery I am going to make a slide show and post it so other parents with boys with scoliosis can view it.

michael1960

11-21-2010, 10:10 AM

Elisa

I agree with everyone telling you to see an orthopedic surgeon and that you should not follow the advice of others, like myself. However, with that said, you should use it as input into your research of scoliosis. Use it to help you understand what options you should research or consider. It is better to be aware of all options sooner than later. I wish I had been on this forum and learned about some non-surgical methods as well as some new surgical methods (VBS) much sooner.

It was almost a 9 months after my daughter was first diagnosed at 7 yrs. old that we started any treatment. She was 23 degrees @ 7. We were told to just watch it, and for the most part do nothing. Then, before we knew it she was 36 degrees.

At 23 degrees we could have started night-time bracing and some other non-surgical methods to get it back down to 10 degrees or less. But instead we have spent the past year and significant time and money to get it back down close to 23 degrees (maybe we are at 18-20 deg or less).

Too often orthopedic surgeons only recommend two solutions: bracing and surgery. It is pretty black and white with surgeons. I don't expect surgeons to know everything about non-surgical methods. We should all be thankful they spend all their time on surgery, and research into new surgical methods. So when surgery is required, they can be the best.

There are many other options out there and the reason I mention them in my previous post is so that you are aware of them, and do not have to spend days, weeks, etc. reading through the internet and forums to find possible treatments for your son, and maybe come up with the same list. Also, the more you know, the better prepared you will be when you meet with a surgeon, to ask a lot of good questions.

While I trust surgeons with my daughter, you will find that they differ on their treatment. We have been told all of the following from surgeons: wait and watch, brace with Charleston, brace with Boston brace, don't brace at all because bracing does not work, surgery now, surgery later, no surgery, etc. It is very difficult as a parent.

The best you can do, and I know you are doing it, is to learn as much as you can, keep an open mind, and consult with professionals, both non-surgical and surgical.

In the end, considering the size of the curve, surgery is very much a possibility, so, seeking the advice of a surgeon (specializing in scoliosis) is critical. And this surgeon can give you an accurate measurement (but so can a chiropractor specializing in scoliosis).

If you plan to see more than one professional (surgical or non-surgical) I would recommend you get a copy of the x-rays (films) so that you can take them with you to visit others. I haul our films with us everywhere we go.

If a doctor wants to put them on a disk for me, I always take my laptop, load the disk, and make sure I can display them, before I leave without the x-ray films.

I wish you and your son the best.

Mike

Elisa

11-21-2010, 03:37 PM

Another detailed post lost. :mad:

Just wanted to let you guys know that I really appreciate the time and thought you put into your responses; it means a lot to me. I'm also glad that I am back working part time again b/c it gets me out of the house and away from my computer otherwise I keep obsessing over all of this and it literally gives me a headache.

I did go on a rant about how pathetically slow BC Children's Hospital is about seeing my son but I'll spare you my rant and just say that I will be contacting Shriners ASAP and go from there.

Are you guys telling me that there's people out there that never ever recommend scoliosis surgery under any circumstances and instead recommend PT and exercise etc.? Call me naive but I do find this hard to believe.

Elisa

11-21-2010, 05:52 PM

I have written my letter to Shriners and was wondering if anyone knows if they have an email address b/c I cannot find one. Thanks.

leahdragonfly

11-21-2010, 07:22 PM

Hi Elisa,

Shriners has a short application form on their website--did you send that in or just a letter?

Here is a link to the application: http://www.shrinershq.org/Hospitals/Main/Admission

Their website says to return the application to the nearest Shriners Hospital, which I believe is Portland:

3101 S.W. Sam Jackson Park Rd.
Portland, OR 97239-3009

Telephone: (503) 241-5090
Fax: (503) 221-3701

BTW, you do not need a Shrine sponsor or affiliation. Just leave section 9 blank.

Good luck!

Elisa

11-21-2010, 07:27 PM

I've already printed off the application Gayle, I was just thinking of sending them an email as well but can't seem to find an address. I did call and the girl said to call back tomorrow and speak to HR and they'd have an email address for me.

I tried not to bash BC too much, just a tiny bit and focused more on his x-ray results.

Pooka1

11-21-2010, 07:29 PM

Elisa

11-21-2010, 07:31 PM

That was a question I had Pooka. How do I get these? Michael mentioned something about bringing in my laptop but am wondering if I need a CD or DVD? I'm so not good with electronics.

leahdragonfly

11-21-2010, 07:32 PM

Elisa,

I added more info to my post above. Here is an e-mail for inquiring about applications:

For information about a completed application or for other questions, please e-mail patientreferrals@shrinenet.org, or call (800) 237-5055 or (800) 361-7256 in Canada. Both lines are staffed weekdays between 8 a.m. and 5 p.m. EST.

Sharon has a good idea about including copies of the x-rays.

Elisa

11-21-2010, 07:36 PM

Thanks Gayle! Must run now and tend to all my chinchilla kids and will check back in tomorrow. Like I said, so glad I found you guys!

Pooka1

11-21-2010, 07:36 PM

That was a question I had Pooka. How do I get these? Michael mentioned something about bringing in my laptop but am wondering if I need a CD or DVD? I'm so not good with electronics.

You posted them as attachments here. You can email them or print them out and send them or fax them.

Pooka1

11-21-2010, 07:39 PM

Also mention the wait you were quoted to see a pediatric orthopedic surgeon in Canada. And then say something about that is just the first consult and that the wait for surgery is likely way longer, a statement which I believe to be true but you should ask maybe.

The most commonly cited surgical trigger angle is 50* plus progression.

titaniumed

11-22-2010, 01:43 AM

I would send the radiographs if I were you. I bet they get you in very soon.

I concurr.

Ed

jrnyc

11-22-2010, 04:32 AM

hi Elisa
scoliosis can be very sneaky...looking back, i realize i had scoli in my teens, but it wasn't diagnosed til i was 31 yeas old, so please don't beat yourself up...and thank goodness you found it now! you are your son's advocate, and a good one...you will become a better one the more you learn...
i agree with those saying that no good surgeon will operate for cosmetic reasons...i just think girls are more obsessive about their looks than boys are, so they discuss that aspect of the surgery much more...but really, prevention of curve progression is so important when kids are young!

my sister has lived in Montreal for decades...she says she has no problem with the medical system there, as emergencies are seen immediately...but i dont buy it...i prefer paying our doctors here in the States the way we do, expensive as it is, compared to waiting for "non emergency visits"...i hope the new system the U.S. is adopting wont lead us down the path of wait and wait and wait, and you have my sympathy on your struggles to get your son in to see a good surgeon!!

sorry, but i just cant call you "spiny mouse"...i am a huge animal lover...but i am unable to love rodents...perhaps it is from growing up & living in NYC most of my life...because in NYC, they are seen as a major threat to the health of children and adults.....perhaps i just feel creeped out when i look at pix...i belong to several animal help organizations, love my puppy beyond reason, etc..but rodents are for others (sorry if i offend any of you guys)
so i will refer to you as Elisa for now...and wish you all the luck in finding the best care for your boy...i hope you can get him a specialist in the States, if that is what is needed...

best regards
jess

Pooka1

11-22-2010, 05:03 AM

sorry, but i just cant call you "spiny mouse"...i am a huge animal lover...but i am unable to love rodents...perhaps it is from growing up & living in NYC most of my life...because in NYC, they are seen as a major threat to the health of children and adults.....perhaps i just feel creeped out when i look at pix...i belong to several animal help organizations, love my puppy beyond reason, etc..but rodents are for others (sorry if i offend any of you guys)
so i will refer to you as Elisa for now...and wish you all the luck in finding the best care for your boy...i hope you can get him a specialist in the States, if that is what is needed...

That's okay Jess. Not everyone sees the magic of rodents. :)

By the way, speaking of rats, they are thought to be conscious. Certain experimental results are consistent with the claim that they know when they know something and know when they don't know something. Metathinking (thinking about thinking) is considered a sign of consciousness.

http://www.cell.com/current-biology/abstract/S0960-9822%2807%2900931-1

Plus rats are cute as buttons!!!!!!!!!!

Elisa

11-22-2010, 09:17 AM

Hahaha, that's funny about the rodent aversion. I feel the same way with reptiles, especially snakes. I'm practically phobic when it comes to snakes. :eek:

Now that I have an actual email address I'll have no trouble attaching the x-ray pics otherwise if I had to send them I'd attempt to scan them for now but would be looking into having them put on a disk and sending that instead. I'd still like to do that b/c the pics I posted were just a copy of a photocopy. I did take them with my brand new little camera though and I'm surprised they actually came out as clear as they did. You guys seem to have no trouble getting a good idea about how crooked his spine is so I'm assuming those who do have a trained eye will have no problem?

Jess, you can't possibly lump chinchillas into the same category as mice and rats can you? I have a hard time even thinking of them as rodents b/c they're just do beautiful and oh so soft. :p

http://i241.photobucket.com/albums/ff196/Carol-Anne_01/Pip.jpg

http://i241.photobucket.com/albums/ff196/Carol-Anne_01/004.jpg

http://i241.photobucket.com/albums/ff196/Carol-Anne_01/100_4971.jpg

Elisa

11-22-2010, 10:21 AM

YAY!

I have spoken with Shriners Montreal who put me in touch with the BC Shriners who put me in touch with someone in my own town and he is coming by tomorrow to help me fill out the papers. I also emailed him the letter I had written along with those three pics I posted here.

Looks like me and my boy will be heading down to Portland in that big cushy Shriners' bus soon. I am crying but they are tears of joy. :eek:

Today will be such a good day at work.

jrnyc

11-22-2010, 11:26 AM

hey Elisa
what great news!!
hope Portland proves to be the answer for the help your son needs...

sorry...i know you love your pets...but chinchillas look pretty much the same to me...i'll just stick with my sweet puppy, and the cat (from up the street) who comes to visit me every few days...:)

Sharon...metacognition...seriously?! then i cant believe doggies dont have the same....knowingness!
Sparky said to tell you i am not prejudiced, either...

woof

Elisa

11-22-2010, 01:54 PM

It's wonderful news! At least he'll finally get a professional to actually look at his back b/c so far only our family doc and this recent chiro has looked at it and they are by no means scoliosis specialists but even they believe he needs to be seen by a specialist ASAP.

I really hope we'll get some straight (no pun intended) answers as to what the heck is going on with his spine and what to do from there. I have been so disappointment by the waiting game from BC Children's as well as I fear they are just too swamped to handle all their caseloads b/c there's only two pediatric ortho specialists in the entire province. What if one gets sick or the other takes a holiday, then what? This is really worrisome for us and I'm not sure in the end we trust these guys to perform back surgery on our child b/c they're coming across as overworked and somewhat disorganized. They couldn't even find his x-rays for six months! :o

Pooka1

11-22-2010, 04:41 PM

Pooka1

11-22-2010, 05:10 PM

http://i241.photobucket.com/albums/ff196/Carol-Anne_01/Pip.jpg

http://i241.photobucket.com/albums/ff196/Carol-Anne_01/004.jpg

http://i241.photobucket.com/albums/ff196/Carol-Anne_01/100_4971.jpg

Cute as buttons! So nice. :)

Elisa

11-22-2010, 06:08 PM

The whole entire population of Canada is about the same as that of California. The actual population of BC is about 4.5 million. Hard to believe there's so few people here in this massive country and hard to believe there's only TWO pedi/ortho specialists for 4.5 million people.

http://www.bcstats.gov.bc.ca/data/pop/pop/BCQrtPop.asp

I might be getting ahead of myself but I'm already planning to do some shopping in Oregon b/c the selection is so awesome compared to what we have here AND there's no tax. :cool:

The Shriner fellow is coming over tomorrow so I will let you guys know what he says. I'm very excited and probably won't sleep well tonight but for different reasons than being frustrated and angry.

Pooka, glad you like my chinny pops. That is just three of them and I have four more to post pics of but of course I'll spare that b/c Jess doesn't like them, lol.

These guys all have huge cages (most my husband built) as well as wheels from the US and their very own room set up that they can come out each evening and run about. They are very spoiled lil puff butts.

Pooka1

11-22-2010, 06:15 PM

The whole entire population of Canada is about the same as that of California. The actual population of BC is about 4.5 million. Hard to believe there's so few people here in this massive country and hard to believe there's only TWO pedi/ortho specialists for 4.5 million people.

http://www.bcstats.gov.bc.ca/data/pop/pop/BCQrtPop.asp

I might be getting ahead of myself but I'm already planning to do some shopping in Oregon b/c the selection is so awesome compared to what we have here AND there's no tax. :cool:

Canada is the second largest country in the world but 90% live within 100 miles or 2 hours or something of the US border I think is the statistic.

The Shriner fellow is coming over tomorrow so I will let you guys know what he says. I'm very excited and probably won't sleep well tonight but for different reasons than being frustrated and angry.

Good. You need a break from your whirlwind.

Pooka, glad you like my chinny pops. That is just three of them and I have four more to post pics of but of course I'll spare that b/c Jess doesn't like them, lol.

These guys all have huge cages (most my husband built) as well as wheels from the US and their very own room set up that they can come out each evening and run about. They are very spoiled lil puff butts.

"Chinny pops" and "lil puff butts." Excellent descriptors!

My pigs are "fatty cakes" or "The Cherubims." :)

Elisa

11-22-2010, 06:19 PM

Forgot to mention that my son had his chiro appointment today and I talked to him about my conversations with the Shriners and he seemed REALLY impressed. As far as the chiro visits go, my son has had about four I think and he has been feeling a lot better. Since he's been going to see this chiro he hasn't been complaining of back aches recently and hasn't been slathering on that stinky muscle rub which is encouraging.

Pooka1

11-22-2010, 06:22 PM

Elisa

11-22-2010, 06:26 PM

Pooka1

11-22-2010, 06:32 PM

Not only did we find a chinchilla outside under our van, we found a guinea pig too a while later! I did post an ad in the paper as well as a memo on the bulletin board of our town home complex in Victoria but no one claimed him/her, didn't find out for sure but a neighbour assured us it was a female. We kept Miss Piggy for five years before she passed. Now we have three female cats that we've adopted. Animals just seem to find us for some reason. I guess I need to take in that 'welcome all stray creatures' off our front doorstep, lol.

Well people are either part of the problem or part of the solution. You are clearly part of the solution, picking up the pieces.

The less wanted and the less cherished, the more important these stray animals are in a cosmic sense in my opinion. People who go to a shelter or rescue and adopt the oldest, least beautiful animal in the place recognize this. We can judge society by how we treat animals.

Elisa

11-22-2010, 06:40 PM

I feel as though someone is going to pinch me and I'm going to wake up from this nightmare only to find that no one is coming to my house tomorrow and no one is going to be looking at my son's spine anytime soon. I was so distracted at work today that I totally forgot to put everything away and my boss called me at home and we laughed. I haven't laughed for a long time b/c I've been so stressed out over this whole thing and mostly I cry or get really angry. I keep telling my husband that it's probably a good thing I live on this island otherwise I'd be at BC's Children's and making a huge scene where they'd escort me away or I'd be standing outside with a picket or something and ending up on the news only to embarrass my son.

I also have not been eating as well as I should and taking way more Advil for my daily headaches than I should and have had to rely on deep breathing to calm me down as well as too much red wine probably. I do feel a somewhat at peace when I head downstairs to tend to my chinchillas b/c they are relaxing, entertaining and their softness makes me feel good.

Pooka1

11-22-2010, 06:50 PM

I also have not been eating as well as I should and taking way more Advil for my daily headaches than I should and have had to rely on deep breathing to calm me down as well as too much red wine probably. I do feel a somewhat at peace when I head downstairs to tend to my chinchillas b/c they are relaxing, entertaining and their softness makes me feel good.

As is often repeated around here, you as a parent need to take care of yourself also. You need to be at the top of your game to deal with this, to understand what they are laying down, to know what to do and why, etc.

And I completely dig the rodent effect you mention. It is like magic. They are so compelling.

When my kids were in the hospital and I was staying there with them, my husband would come in and I would come home for a few hours each day to shower and unwind for a little while. This is also when I would deal with the Cherubims. I looked forward to it.

You can do this and you will be a star.

ps. The guy really is coming tomorrow so make sure you're dressed. :)

Elisa

11-22-2010, 06:51 PM

The less wanted and the less cherished, the more important these stray animals are in a cosmic sense in my opinion. People who go to a shelter or rescue and adopt the oldest, least beautiful animal in the place recognize this. We can judge society by how we treat animals.

^^ So true. Being very involved with the chinchilla community I see a lot of really really sad cases. People pick up chinchillas here and there and throw male/female together with intentions of breeding them and making money but then realize there really is no money. Then they lose interest and neglect the animals and they become sick or pregnant and then they have a bunch of animals that are unhealthy and uncared for. It is sad sad situation indeed.

All of my boys are rescues and I've given them the best possible life I can give them and I have helped them restore their health and they seem very happy. I cannot bring anymore fuzz butts into this house though b/c my chin room is so cramped with huge cages that I swear I cannot squeeze a blade of grass between cages, nor if I gained an ounce could I turn around in the room, lol.

Elisa

11-22-2010, 07:06 PM

ps. The guy really is coming tomorrow so make sure you're dressed.

Oh, don't worry, I only wear my housecoat for about a half hour while drinking coffee at seven am and then I'm showered and dressed for the day. He said he'll call me first before he comes over.

He said that my son will first visit the medical team in Vancouver for testing and they will determine whether he will be going down to Portland for further review. I am almost positive they will ascertain that he needs to be seen by the specialist(s) in Portland as his spine is bad according to his family doc, the chiro and you guys.

He sounded so sincere and sympathetic on the phone and of course I cried I told him my frustrations and worries and he was so reassuring and kind and a good listener. However, he's not so good with the Net and did give me his wrong email address three times and did have to call me and apologize. Yes one 'dot' does make a difference. :p

Pooka1

11-22-2010, 07:11 PM

Actually we here on the forum are just lay folks spitting in the wind. There could be all kinds of aspects to any given case that we don't know about and wouldn't know to ask about.

The orthopedic surgeon will know what to do and take great care of your son. There is no substitute for that.

Elisa

11-22-2010, 07:25 PM

Yes, I realize that Pooka and I am in no way depending on you guys as experts but I also know that people here either have spine issues themselves or have kids with spine issues and that isn't something to dismiss. A picture is worth a thousand words and y'all have said that my son's spine has significant curves and should be seen by a pro so I believe that wholeheartedly.

Off topic, but has anyone ever heard of the disease: "henoch schonlein purpura"? My older son contracted that disease ten years ago and that was just the most stressful time of my life. It's a disease that affects about one in every one hundred thousand kids and it comes on fast and furious and can basically kill the kidneys. My son spent one month in the hospital and it pretty much took him two years to fully recover. He made a full recovery but boy was it stressful. If anyone would like to ask me about this disease, I'd be more than happy to discuss our ordeal with this particular disease.

titaniumed

11-22-2010, 08:18 PM

Elisa

Just wanted to say congrats on moving foward....Remember deep breaths!

The hampster sidetrack reminded me of an old post(#66) I made. Sharon will remember. Start reading from post#61.

http://www.scoliosis.org/forum/showthread.php?t=9797&highlight=kitty&page=5

We are coming up on Christmas time again. Ho ho ho. Love that eggnog!

Ed

Elisa

11-22-2010, 09:48 PM

I still feel as though I'm going to wake up and everything was the same as it used to be, but at the same time I know it's all different. I am so happy my boy is finally going to be looked at seriously.

titaniumed

11-22-2010, 10:15 PM

Elisa
Its necessary for peace of mind.

All scolis need to be seen by a scoliosis specialist. Funny, I should feel that way.

Ed

Pooka1

11-23-2010, 05:02 AM

The hamster sidetrack [...]

I'm not sure hamsters are ever completely off topic though. :)

And yes it's exciting for a hammy to have their first Christmas!!!!

Elisa

11-23-2010, 10:03 AM

Elisa

11-23-2010, 01:17 PM

The gentleman from Shriners came by and we had tea and visited for about an hour. What a wonderful man and a great sense of humour too. I have all the papers I need and he explained how Shriners work and it was all so fascinating.

So basically I'll be faxing the paperwork to the office in Vancouver (Burnaby actually) along with the letter I wrote to him and the pics of the x-rays that I posted here. Then I will wait for a call to set up a run time on the bus to Portland. My son doesn't have to go to Vancouver like I thought, just the x-rays need to be sent over. They will do all the testing in Portland apparently.

He doubts the bus will make a Portland Run in December b/c of the holidays and such but thinks it will make a run in January. That would be awesome! I feel like I just won the lottery. Actually it's better than winning the lottery b/c money doesn't mean all that much to me but my boy's health and happiness means everything. :)

I am absolutely starving and cannot wait until my sister and BIL get here b/c I am taking them out for lunch and will fill them in on everything.

Pooka1

11-23-2010, 01:21 PM

Great news! Glad things are going your way.

You can do this.

Elisa

11-23-2010, 01:38 PM

Yep, things are FINALLY going my way for a change and a huge burden has been lifted off my shoulders and I can probably cut down on my handfuls of Advil for a while b/c I'm sure my headaches will decrease somewhat.

When I talked to him on the phone he asked if I was at home (cell phone) and I said yes and he wanted to come by straight away and I'm like "uhhhhh, sure, I'm just tidying up at the moment" then he said to stop cleaning and I'm "okay, just give me fifteen minutes so I can brush my hair and teeth" and he says "yes do make yourself beautiful" and then I said "well that's going to take me a lot more than fifteen minutes then." Hahahaha!

jrnyc

11-23-2010, 05:20 PM

so pleased for you, Elisa!

here is what cute looks like...a little angel puppy named Sparky...

jess

http://i1085.photobucket.com/albums/j439/jrrnyc/Quintessential_XSjpg.jpg

Pooka1

11-23-2010, 05:24 PM

so pleased for you, Elisa!

here is what cute looks like...a little angel puppy named Sparky...

jess

http://s1085.photobucket.com/albums/j439/jrrnyc/?action=view&current=Quintessential_XSjpg.jpg

Okay that is off the scale cute! Such a good little baby!

Thanks for posting that.

jrnyc

11-23-2010, 05:36 PM

my pleasure, Sharon...thanks for the compliment
he is our little Pookie Doodle :)

woof

http://i1085.photobucket.com/albums/j439/jrrnyc/SparkyBlinkyBody.gif

http://i1085.photobucket.com/albums/j439/jrrnyc/Img_0177-1.jpg?t=1290645453

Elisa

11-24-2010, 09:06 AM

Pookie Doodle scares me. :eek:

Okay, just kidding, he's definitely adorable and reminds me a lot of our little poodle cross we used to have some years ago and she was our little baby for thirteen years.

Now that I have the day to myself I'm going to finish filling out the forms and faxing them over as well as attempt to get this house back in order and fold about six loads of laundry before I head back to work tomorrow through Monday.

Elisa

11-24-2010, 10:55 AM

Check out this bus! Just wow!

http://www.shriners.bc.ca/bus/article.shtml

jrnyc

11-24-2010, 05:33 PM

Sparky has a heart of gold...
he doesn't scare anyone...but HE thinks he is a big rottweiler...
actually, he is my little angel...who stays in bed with me all day long when i am in really bad pain...

Elisa, so glad things are proceeding well for your son...

Happy Thanksgiving!
woof

http://i1085.photobucket.com/albums/j439/jrrnyc/sparkydoggles_S.jpg?t=1290644536

Elisa

11-24-2010, 05:38 PM

Just talked to my son about the "cushy bus" and he right away said: "it's not really cushy is it, it's a small rickety bus with wooden seats right?" For half a second I gave him the look like he was right and he said: "thought so" and then I laughed and told him that each seat was like one of our Lazy Boy recliners and it had video games and stuff and then he asked how long the ride was from here to there and I said I think about six hours and he said: "can they drive slower?" He really does have a great sense of humour, lol.

I am just so grateful that someone who actually is a specialist in scoliosis is going to actually LOOK at him!

Elisa

11-24-2010, 05:44 PM

Jess, our little dog Casey was such a lap pup and she too slept in our bed and she was our bebe. We only have cats now and two out of three often sleep in our bed or when I bring my laptop to bed during the day usually one of the kitty girls snuggle up with me and it feels so good.

Back to chinchillas, I need to dig up some really cute pics people have posted on one of the chin sites I frequent of chinchillas wearing Santa hats, Hallowe'en chins and Christmas chinnies. I know you'll just love them. :D

michael1960

11-27-2010, 05:47 AM

Elisa

I have been away for a few days. It is great to read your update. I am so happy for you and your son.

I love the pictures of the bus. It will be like riding in your living room sitting in a recliner. What a great way to travel.

Keep us posted.

Mike

Elisa

11-27-2010, 09:08 AM

Thanks Michael. I'm just so anxious to get going on this and have a full and proper diagnosis and go from there. It's so difficult to decide what to do when you don't even know exactly what's wrong. Very frustrating. And yes, I was really surprised to see those recliners in the bus and how comfy it looked. I knew it was going to be somewhat "plush" but I had no idea it was a motel on wheels. :eek:

Elisa

11-28-2010, 04:46 PM

I got a call earlier today (Sunday) from the Shriners' gentleman checking in to see how things were going and if I'd filled out all their paperwork yet as well as the passport papers and I told him yes but I'm still waiting for a copy of my son's health record which I should be able to pick up tomorrow. Turns out the community nurse I spoke to on the phone says my son has missed one of his grade six immunizations and when asking her about it, it seems my son missed one shot b/c we moved at the exact same time they were giving them at his former school.

Just thought it was very nice of the man to call me on a Sunday afternoon to see how things were going. Oh, I did mention about my 'falling on my head' incident and he thought it was pretty funny. I'm going to finish up all the paper details tomorrow as I got a co-worker to come in for my shift. :)

Elisa

11-30-2010, 04:53 PM

I was in Shopper's Drug Mart after work today and I noticed they had all their heating pads on sale. I bought one of those king-sized ones that can be used either dry or moist. I used to have a little heating pad that I often used on my lower back when it went out but of course practically a year to the day after I bought it, it stopped working and the warranty had expired. This one is a bigger, better one (apparently) and it has a five year warranty so we shall see.

Do you guys use heating pads on your backs when they get sore and does it make a difference? I know that it sure felt great for me but I don't have scoliosis, my son does. He just got home from school and hasn't tried it yet but I'm anxious to see if it does in fact soothe his achy back.

Besides heating pads, deep cream muscle rub and hanging upside down on an exercise bar, what else do you think we could do at home to help with his backaches?

Elisa

11-30-2010, 07:23 PM

Sometimes I feel as though I'm talking to myself here b/c I keep replying to myself but I know you guys are listening even if you're not speaking. I was wondering if someone could change my handle to 'Pendulum'?

The decision to make on my son's back is probably the biggest decision we've had to make yet. I so want a proper diagnosis, but I am telling you that we, especially me is so scared of surgery. It's like you can't go back. I bet that's a cliche but it's true.

jrnyc

11-30-2010, 09:26 PM

hi Elisa
moist heating pads are great...and easy...i used to use a hydroculator (splg?)...but you had to BOIL it, then wrap it in a towel, then wait for it to cool off enuf to not burn you!! so i really appreciate moist heating pads..i have a big one also...i need it for lumbar...entire lumbar area, as no shots, blocks, nerve killers, etc, have worked (i once got completely pain free for 3 whole weeks...from sacroiliac joint injections...it was heaven...and so sad when it disappeared, and the pain was back, full force!)
i have not found anything else that soothes the pain a little bit, no rubs, creams, etc...so i have no suggestions for you...
hot showers help me pretty much the same way the heating pad does...

just remember that what you do for your son will lead to a better life for him...all you can do is consult the best surgeons, weigh the pros and cons, ask their opinions as to how his future would be without surgery, and go from there...you are his number one advocate...you and your spouse....no one else in the world cares more about his well being...so that will lead you to do the best thing for him!

best regards...
jess

leahdragonfly

12-01-2010, 08:54 AM

Hi Elisa,

I read every day but sometimes don't have time/energy/helpful thoughts to share. Keep posting--you are not alone!

I love my heating pad, I used it every night before my surgery and I lay on it for awhile each day now at 7 weeks post-op. I think heating pads are great for achy muscles. See if your son likes it.

I understand how monumental the decision is for surgery for your son. I think however that things will seem much clearer once you have all the info, and have met with at least one qualified pediatric orthopedist. I think this lag time after diagnosis and before seeing the ortho is extremely difficult--I know it was torture for me (we had to wait 9 weeks--seemed like eternity). You are doing a great job using this time to learn as much as you can about scoliosis, which will allow you to understand what the doctors tell you. Knowledge will make the decisions seem a little easier...still extremely scary when it's you baby, to be sure.

Hang in there, and keep posting here. We're listening! Have you read any of the scoliosis books (by Michael Neuwirth or Dave Wolpert)? If you have not heard of them I can get the exact titles for you. They are worth reading.

Take care,

Elisa

12-01-2010, 09:49 AM

Jess, Gayle, thanks for the input and yes please do post the title of the books and I'll look into getting and reading them. I didn't mean to imply that you guys have to reply to everything I post, I was just rambling on and then I noticed I was the only one saying something but hey, at least I don't talk to myself in real life. At least I don't think I do. :o

I probably am obsessing over this whole thing and it's way more complicated than I first thought and so much conflicting information. Overwhelming. It's just that. I can't stop thinking about it and researching and reading and then worrying and then feeling so confused and more overwhelmed.

"A twisted spine is better than fusion."

^^ This is the quote that won't leave me alone.

The heating pad I bought yesterday doesn't seem as hot as my old one so I'm going to pick up a different one today and see if it's a bit hotter. Maybe I just remember my old one being better, not sure.

Pooka1

12-01-2010, 10:16 AM

"A twisted spine is better than fusion."

^^ This is the quote that won't leave me alone.

Tell that to the following people:

1. folks on oxygen because their lungs were crushed from the curve
2. folks in constant debilitating and harrowing pain who could be helped with fusion
3. folks who have much earlier and worse degeneration in the spine due to simply having a curve over the years leading to great pain (might be the majority of non-fused scoliosis folks)
4. folks who could look and feel completely normal with fusion
5. folks who are in a wheelchair because they refused fusion (for good reason prior to the present surgical approaches or for not so goods reasons now that there are good surgical approaches)
6. folks who are DEAD from their curves. N.B. this crowd won't be too responsive nor are there very numerous luckily.

I'm sure the pediatric orthopedic surgeon will have the statistics for you.

It is easy to get the wrong idea around here that the main difference between folks who get fusion and those who don't are in the same boat physically and simply came to a different concluson. That is simply not the case.

Rather the actual situation is that most of the people who get fused do it for valid medical reasons and often have no choice. This group includes virtually all the kids. I had no choice with either of my kids and I think that is the rule rather than the exception with kids.

People who don't get fused for the most part do have an actual choice or who could be helped with fusion but are too afraid. This group is dominated by adults though there are a few parents of kids who are clearly in surgery territory.

There either is or is not a valid medical reason to fuse a patient. When there is, the weight of the evidence in hand is that fusion is a better choice than no fusion. This is obvious from the fact that insurance pays for fusions which are extremely expensive.

The rest is commentary (and ignorance and fear).

Elisa

12-03-2010, 11:05 AM

Yes, those are all good points Pooka but the fear is definitely the main factor for me... fear of the unknown and fear that I make the wrong decision somehow.

I'm going to try and not obsess over this too much and maybe give myself a break by doing something entirely different. My brother and SIL will be here today around four and I'm going to spend some time with them b/c I haven't seen my brother in years. I think this will be a good diversion.

Also, I talked yesterday with the gal from Shriners who is taking over my son's case and she felt pretty confident that we'd be heading to Portland some time in January. I'm going to try and remain calm and not freak out or scare myself to death until I actually talk to a specialist and get all the proper tests done. That is my rational mind talking but I know I can instantly flip back to being completely irrational and full of fear. One day at a time is what I need to do, just have trouble doing that.

Pooka1

12-03-2010, 03:07 PM

One advantage to not being seen until January is that the surgeon can measure the curve on the first radiograph and see if there has been progression between the two time points. With a large, non-painful curve in a boy pre-growth spurt, the surgeon might not recommend surgery right away, especially if no progression is noted. People, including kids, do get to surgery territory and hang there for decades. I'm just saying that you son's curve might or might not hang where it is.

The wildcard is that you say your son is experiencing pain. Still with that, I suspect the surgeon will want to wait for as much growth as possible.

Nobody on this group can guess what the surgeon will say. The only people who can come close are mothers of boys who are your son's age with large curves.

Your case is really something that ideally you need a few opinions from top shelf pediatric surgeons who specialize in spine. If you do get another opinion somehow, do not be surprised if it is different from the first one.

Finally, I do think you will feel better after talking with a surgeon. They are the only people trained to help kids like your son.

Elisa

12-03-2010, 05:01 PM

I will definitely feel much better when I finally get to talk to a spine specialist b/c it's been about nine months, maybe more, I'm losing track here but it's been a ridiculously long wait with absolutely nothing from their end. I keep reading about people getting upset and frustrated b/c they have to wait nine weeks! I wish.

Apparently not much happens at Shriners in December b/c they like to send as many kids home for the holidays as they can. Makes sense. January is fine. Seems really really close to me compared to... infinity and beyond!

Those x-rays that I posted were actually his second set and they were taken just over two months ago and he looks a bit worse now I think, but then again it could be all in my head. What's not in my head though, is that he has bright red stretchmarks across his rib hump which he did not have two months ago. His first set of x-rays were taken about nine months ago and his Cobb angle was either 37* or 47* I honestly can't remember.

I think the achy back might be caused b/c of his rotation rather than his curve but what do I know. The chiro did say that his back (on the concave side) is really tight so I'm assuming that's why he has an achy back. His pain is very minimal though and does carry out his daily routing at school including PE but when he gets home he turns on his heating pad and of course starts eating. I am SO glad that he finally has a good appetite and isn't as fussy as he used to be. I think he's gained about ten pounds in two months but he still looks scrawny to me.

I just came across a young Canadian girl from Ontario who has the worst case of scoliosis I think I've ever seen. She was waiting for so long to see a specialist but it wasn't happening so her mom contacted the news and then got a call to contact Shriners so now she's going to the Shriners hospital in Montreal. It was really disturbing. What's going on with our Canadian system!?

Here's the facebook page of the girl with the worst back. Click on the two videos and check it out. I'm glad that poor girl is FINALLY getting some help from the Montreal Shriners.

http://www.facebook.com/home.php?#!/pages/Micheala-Holmes-One-Brave-Girl-with-a-Crazy-Ass-Back/112751008756843

Pooka1

12-03-2010, 05:58 PM

Those x-rays that I posted were actually his second set and they were taken just over two months ago and he looks a bit worse now I think, but then again it could be all in my head. What's not in my head though, is that he has bright red stretchmarks across his rib hump which he did not have two months ago. His first set of x-rays were taken about nine months ago and his Cobb angle was either 37* or 47* I honestly can't remember.

Well, the curve two months ago is at least 75* just eyeballing it and as the chiro told you. Let's call it 77* for ease of calculation.

So that's either 30* or 40* progression in about nine months or ~3* - 4.5* per month average progression rate over 3/4 of a year. That's pretty high, pretty sustained progression rate if these numbers are at all close to accurate. And you'll have a 3-4 month time point when you get another radiograph in January. It will be interesting to see if the progression rate is the same.

Bring all the radiographs you have to the appointment. This is very important.

Elisa

12-06-2010, 02:18 PM

I went to the hospital where my son had his two sets of x-rays and have requested they put the images on a CD and they will call me when it's done. I explained a bit about our situation and she seemed very understanding and put a little note on the request to hurry things along. This is why I LOVE living in a smaller town b/c everyone seems so much friendlier, not so stressed and a lot more helpful.

Also got all ready for my passport pic to be taken: hair all fixed up in and up-do and makeup on and the lady at London Drugs told me she couldn't take my picture b/c I was wearing a 2" cream coloured hair band. What!? Apparently you can't wear any head gear at all unless it's for religious reasons. Ack, there's no way I'm going to pull out twenty five hairpins and just to take off my hairband not to mention all that hairspray, I'd look a fright. I'll try again tomorrow. :(

jrnyc

12-06-2010, 03:23 PM

hey Elisa
i sure hope...from what you wrote i guess it is so...that Canada doesn't make their citizens wait 3-6 months for a passport the was it is here in the States!

sounds like things are moving along...

jess

Elisa

12-06-2010, 03:27 PM

I've talked to different people up here and it takes about two to three weeks for a passport. I believe you can have a passport in about seven to ten days if you pay the 'rush' fee which I'll do but I need to get those pics first.

Jess, here's the website I was looking at: http://www.ppt.gc.ca/cdn/service.aspx?lang=eng&region=Canada

Elisa

12-06-2010, 05:26 PM

I am back with passport pics! Man, they really are very picky about these pics. She must have taken four shots and was still not happy b/c there was a "glare" on my forehead and nose so she asked if she could put some powder on me and I said sure and then she took another one and said my lipstick was too bright and could I rub it off. I asked if I could try some powder on my lips too and she said okay but she still didn't think it was perfect so she asked if I'd like black and whites instead. Yes, I don't care what colour they are just get them done so I can get out of here. I'm so not photogenic. My son's picture was "perfect" with ONE shot. ;)

I've decided not to mail all the info in but instead will take the paperwork to the next town over b/c they have a Service Canada Centre there and I can apply in person which is better I think. That way I can also do a pickup there when they're ready and visit with the mother-in-law as well.

My son had a chiro appointment again today, every Monday after school and he does seem to be helping him somewhat with his backaches so we'll keep going.

jrnyc

12-06-2010, 06:10 PM

hi Elisa
yes, i forgot about "rush" services...but they must be very helpful!
i never had problems in the States with any of the passport photos...sounds as if they are very fussy up there...

i hope things come thru quickly and you can come to the States, get some definitive answers, and make some more plans...

jess

Elisa

12-06-2010, 06:19 PM

Apparently they have been extremely fussy with pics since 9-11. Understandably so I guess. Yes, one more loose end getting tied up. I can't wait to get my son looked at by someone who actually knows something about this disease. You wait, I'll get everything in order and ready to go and then... BC Children's will call. It's just the way things seem to go. :rolleyes:

Elisa

12-07-2010, 04:52 PM

Picked up the CD today with my son's images but I can't seem to open it. Any suggestions? I guess I'll take it into work tomorrow to try on one of their computers and ask someone who is better with computers than me. Dang, I was so curious to see his actual x-rays. :(

Am really glad the local hospital was so quick to help get his images on a CD for me though. LOVE this town! Everyone is being so helpful.

Pooka1

12-07-2010, 04:59 PM

It probably has to be unzipped or is otherwise in a program that you have to run to read the radiographs.

I have dealt with two separate programs that allow viewing of radiographs, one for my horse's shots and one for my kids' shots. They were both obvious in term of what to do and(or) came with a readme file with instructions. You may have yet another one so I probably can't advise other than to just run any executable file on the disk.

Can you type out the file list here?

Elisa

12-07-2010, 05:05 PM

Yes, it is a 'zipped file'. What exactly do I have to "type out"? I really only have a bit above basic knowledge of the computer. :/

Pooka1

12-07-2010, 05:12 PM

I was just asking you to type out the names of the files in the directory so we can help you figure out what to run to unzip the files.

If there is a file with an extension of

.exe

then double click that.

If the files are zipped then see if there is an unzip executable file on the disk. I strongly suspect there is. If not, just double click what you think is the data file and your computer might know it is a zip file and unzip it for you.

Elisa

12-07-2010, 05:25 PM

Okay, I managed to open the file and there are three x-rays on it but I clicked 'file' and tried to save them but nothing is happening.

Pooka1

12-07-2010, 05:35 PM

Try copy/paste to a word document and then save that.

Elisa

12-07-2010, 05:46 PM

I managed to save them in Word. Here they are.

I did save them in Word but I don't see an attachment. This has been a tad frustrating but I'll get it eventually. I would have deleted the post but I can't.

Elisa

12-07-2010, 05:58 PM

delete delete

Elisa

12-08-2010, 09:25 AM

One more try. If it doesn't work then no big deal. The images are pretty much what I already posted earlier only clearer. The best I could do was save them in Paint as a jpg.

http://i241.photobucket.com/albums/ff196/Carol-Anne_01/Scolioboy/Eliasx-rays.jpg

Elisa

12-08-2010, 05:50 PM

Finally getting all those loose ends tied up and am planning on heading to Comox (next town over) on Friday to get those passports ready. I know it's not a big deal for a lot of you who travel on a regular basis but for us who live on 'the rock' here on Vancouver Island and who rarely travel it IS a lot of paperwork to fill out and get authorized. Used to be that we could pop over the border no problem with just some photo ID but not now.

Showed my co-worker today my son's images and her jaw dropped. Yes, his spine is extremely twisted and I bet it's one of the worst you've seen here and it still shocks me to know that he 'seemed' pretty much normal about a year ago. He's got scoliosis bad, real bad but he's walking around like nothing much has happened other than a bit of backache at the end of his school day.

I know you guys aren't surgeons, but taking a look at his twisted spine, what do you think the surgeon will recommend as to his fusion? It looks like a big one to me. :/

JenniferG

12-08-2010, 06:05 PM

I can't help Elisa but I agree, it looks like a big curve. But your son is young and you will be amazed at what surgery can offer. He will have before and after x-rays that will amaze everyone who sees them. I'm glad he's not suffering too much at this stage.

Pooka1

12-08-2010, 06:16 PM

It is truly, truly impossible for any of us to guess at what the fusion will be. A surgeon can't even do it without bending films which you don't have.

That said, I don't think you need assume it will be a particularly long fusion just because it is large. It seems well confined to the thorax and so hopefully the fusion won't go into the lumbar much if at all.

The decision about surgery might possibly hinge on if there has been progression in the last few months. If no progression, I think they will delay to allow for more growth. If the progression between the first and second set has continued between the second and third set they will take at Shriners then that might matter to when to schedule.

You need to bring both sets of radiographs to Shriners. It looks like you just posted the ones from 2 months ago and none when he was at 37* or 47* several months ago. Bring ALL of them to Shriners.

Elisa

12-08-2010, 06:23 PM

Hmmm, you're right Pooka, the x-rays that I got yesterday ARE the more recent ones. I wonder why they didn't include the first set which were taken about five months before that. I wonder if they're on the disc but I just overlooked it? I'll play around with the CD some more.

I honestly feel as though his progression is BAD. I can tell you for sure that by looking at him about a year ago his back looks nothing like it does today. It's like some sort of alien Sci-Fi warp-speed deformity has happened. Shocking. And he continues on almost normally. Weird.

Pooka1

12-08-2010, 06:57 PM

Call the hospital and ask if they put the earlier series on there.

You can probably call now... the imaging office at the hospital where my kids went is open 24/7.

Elisa

12-08-2010, 07:08 PM

I had a good look through the CD and I found no other images. Not sure why they call them a "series" when there's only ONE set. They've been very helpful so far so tomorrow I will go and ask for the first ones. It's nice that everything is so close in this town and most people are oh so helpful.

I do believe now that the first set taken about nine months or so or maybe a bit more was showing 47*. I say that b/c our GP read out the results, lowered and shook his head and gave us the options of: 23/hr bracing, possible surgery, go see Rielly at BC Children's OR he said something about Shriners' in Oregon. I was unhappy that there was no one on this whole Island that could 'see' my son but as time went on, Vancouver sounded good but they're maxed out so then I tried Shriners and now I get what my doc was talking about. His is a bad case and it was obvious nine or more months ago. I just didn't know it.

Elisa

12-10-2010, 09:37 AM

Off to get passports this morning and visit with the MIL and shop a bit as well in the next town over.

I was thinking of getting something healthy to help my son bulk up a bit just in case he ends up having surgery in the next while. His appetite is great but he is naturally slim so he doesn't seem to putting on any extra pounds at all. We rarely (husband never) eats junk food or fast food etc. so I'm looking for a nutritious supplement to give my son so he can have a few pounds to spare b/c I've been reading about how people lose a lot of weight after surgery and I can't really picture him being any thinner than he already is.

Any suggestions?

Elisa

12-10-2010, 06:25 PM

Such a busy day but I feel as though a HUGE weight has been lifted off my shoulders by getting all this passport stuff finally done. Paperwork is definitely not my forte and am really glad I decided to drive the 45 minutes to Service Canada where a wonderful woman fixed the few mistakes that I made on both applications. She even suggested getting a social insurance number for my son while we were there. I never ever got such great service when I lived in Victoria which is a much larger city and everyone seemed so cranky, rude and unhelpful which of course brought out the worst in me.

Got the boy the vaccination that he missed somewhere along the way as well so I have to send the completed health record to Shriners. All I need now is that first set of x-rays put on the CD and we are done.

I wonder when Shriners will call me. I hope it is soon.

Oh, when I went to pay for the passports by Visa, my card was declined which really ticks me off b/c this is a brand new card (replacing my old one) and I just activated it the other day but it didn't work. Good thing I didn't throw out the old one b/c it still worked. It's annoying b/c the woman on the phone who activated it spent more time trying to sell me 'balance insurance' and I listened to her whole spiel and just wanted my card activated. Obviously she screwed that part up, grrrrrr.

Pooka1

12-11-2010, 06:54 AM

With all due respect to those and their opinions of chiropractors and I mean this sincerely, so please don't attack me :). I have noticed quite a bit of chiropractic bashing on this forum. Now, I do agree that there are many chiropractors out there that have given the profession a bad name. More than I care to admit but just like in all professions there are good apples and bad apples.

No actually it's not like other professions because the basis of chiro (subluxations) has been shown to be nonsense. Unless the evidence-based chiros come up with something, it is not obvious that there is a "there" there with chiro. So far it is as imaginary as homeopathy to the extent the claim is it is any different from PT.

Now Clear has broken considerably away from its chiro base in my opinion (for example I have never heard one of those guys mention "subluxation" to their credit) but they have to start ponying up some evidence soon. It's an uphill battle though give the piss-poor training at chiro schools (see other thread) but it can be done... people Like Morningstar can think and write clearly and J. Woggon can write clearly but tends to include demonstrably counterfactual material in his writings. To his credit he admits some of this but he needs to check his facts far more carefully going forward.

Chiropractors are not trained in surgery, just like surgeons aren't trained in chiropractic. And in all fairness to the opinions on this forum, I do agree that the general chiropractor without any further training in scoliosis treatment shouldn't be treating scoliosis patients. But beyond the basic education, there are a multitude of continuing education classes, seminars and certifications that these doctors, yes, they are doctors, can obtain after their chiropractic education is done.

But unless the continuing education is evidence-based it is nonsense. If it isn't you are going to end up with another subluxation situation on your hands and therefore another black eye on chiro.

I saw the post about comparison about medical education and chiropractic and I don't think it is a fair comparison in that both fields are completely different so how can you compare?

Well, aren't chiro schools constantly claiming they are comparable to med school? Don't they claim to have a huge overlap in classwork? I can send you a link showing this. I don't want to post it because it contains a lot of nonsense.

I do believe that alot of animosity towards the profession is a fear of the unknown and/or understanding the profession.

It's unknown because nobody has ever ponied up any evidence for it. And folks SHOULD be fearful of non-evidence-based modalities else they end up with chanting and voodoo and such.

I have seen references to "subluxations" and curing the world...blah blah blah..but have any of you spoke with a chiropractor that is biomechanically based with backgrounds in physics, human kinetics and neuromuscular reeducation?

If this is real training then do orthopedic surgeons also get this training or only chiros?

The CLEAR Institute, I have noticed, is really trying to make a difference within the scoliosis community. And even though you may see websites that steer you away from surgery, I am sure you will see surgical sites that promote it. A surgeon is going to want to do surgery. A chiropractor is going to want to utilize non-invasive means to achieve an outcome.

Ah but the reasons are different. If a surgeon suggest surgery it is because the EVIDENCE tells him that that is the best hope for the patient.

A chiro suggests a non-invasive approach DESPITE a LACK of evidence because they are not trained in the only modality that has evidence of efficacy - surgery.

Huge difference.

Everyone, not only Clear chiros, want an effective non-invasive approach. Do you have evidence Clear alters the natural history? If not, do you tell people you are experimenting on them and that there is no evidence yet?

Why are some on this group so steadfast against a group that is only trying to find a better way to deal with scoliosis and to truly understand the nature of the condition?

Because you are charging huge prices for an experimental modality that you don't know can change the natural history. It might but it hasn't been shown yet.

A group that is trying to control the curve in its early stages so that it won't progress to surgical status...is that so wrong? Isn't that what we all want? Do we really want our kids going through surgery if we don't have to? What have your experiences been to warrant such an attack so quickly?

Yes the key is "trying" to control the curve in the early stages. You don't know that now. Do you understand how incredibly hard it would be for anyone to SHOW that is the case? The background natural history on small curves is that most will not progress. Do you simply assume that if a curve doesn't progress or even resolves while being treated then it must have been the treatment worked? Is your success rate with small curves in fact identical to the natural history?

Just my point of view. I am sure someone will have something to say about it. Please be kind as I just joined this site and would really like to stay!
All in the spirit of fairness....:)

I hope you stay and answer the questions for the bunnies.

titaniumed

12-11-2010, 11:57 PM

Elisa

He has a good one. It looks like a 80-90 thoracic curve. It will be interesting to see what they say on this. If I had to guess, I would say T2-L1.

BTW, I was a King 1 with twin 50s at age 16.

Ed

Elisa

12-12-2010, 10:28 AM

Yes, his spine is nasty that's for sure and to think he 'appeared' to be normal about a year ago. Shocking.

Looking at the pics and descriptions of curve classifications, I'm thinking he has a Type IV. What do you think Ed? Of course we're just guessing here and we truly won't know until he has been diagnosed properly hopefully SOON!

King-Moe Type IV

The King Moe type IV curve is a very long thoracic curve with a marked trunk decompensation. It is not until the lower lumbar region, usually at L4 that the curve reaches back to the midline. The L4 vertebral body still tilts into the curve. These long C-shaped thoracic or thoracolumbar curves really lend themselves best to treatment via a posterior instrumentation. The correct level inferiorly will depend on the bending films to determine which of the lower lumbar vertebra completely bends backward to the neutral position.

Edit: Pooka's previous post is in reference to page 1, post #15 here on this thread. Just thought I'd mention it b/c it took me a while to find where she was quoting from.

hdugger

12-12-2010, 10:25 PM

Elisa, I'm in the Portland area. I'm not on the forum every day, so feel free to send me a message when you know your date if you want to connect with someone in the area. (Also perfectly OK if you don't - I was always so frazzled with I traveled alone with my son that I just wanted to collapse most of the time). I'd be happy just to point you to good places to stay/visit in the area.

My husband and I were talking today about how we could have missed all that curving my son was doing during his adolescent growth spurt. I don't think I would have seen it until much later (it was 35 degrees when diagnosed) except that he also had kyphosis and his head was just *way* far forward. Even now, when he's in the high 50s, I can't see the side to side curve at all, even if he takes his shirt off and I try to look for it. His neck is a little tilted to the side, but that's it.

Elisa

12-13-2010, 08:51 AM

^^ Okay, thanks for the offer. As soon as I get an actual date I will post it as well as send you a message. I have only been to Portland once and we spent the night there on our way down to California and across to Mexico. I recall Portland being a lovely city with lots of bridges. I'll keep in touch, thanks for the offer.

Edit: I asked this question in another thread but will ask it here as well... I noticed there is a Shriners hospital in Spokane Washington who deal with scoliosis so I was wondering why we are making plans to go to the one in Oregon? Not that it matters at all but I was just curious.

hdugger

12-13-2010, 10:01 PM

That's a good question (to which I don't really know the answer). We never went to the local Shriners (because we were under the impression that my son was all done curving at age 16.)

I do know that the only other local family on the board went to the Shriners in Philadelphia, but that may have been because they have an excellent juvenile treatment name (your son is a teenager, isn't he?)

Elisa

12-14-2010, 03:47 PM

Yes, my son is 14 and will be 15 at the beginning of June. I don't know why either that Spokane wasn't even mentioned but I'm sure there's a good reason.

It's back to the waiting game. The woman at Shriners in Burnaby (close to Vancouver) did say that nothing much goes on in December b/c of the holidays but it sure would be nice if someone called me in the next little while to give me some sort of idea when our appointment will be. I have been carrying my cell phone around in my back pocket at work even though we're not supposed to, just in case I get 'the call' but nothing yet. Our passports won't be here until January 15th. so we're not going anywhere until then but I still wish they'd call.

Pooka1

12-14-2010, 03:53 PM

Our passports won't be here until January 15th. so we're not going anywhere until then but I still wish they'd call.

You might want to mention that to them in case they make all kinds of plans with the surgeons to see you earlier.

Elisa

12-14-2010, 03:59 PM

When I talked to the Shriners' lady last week she told me they used to book appointments for people but have recently changed it to where they call first and ask when a good time is for us and then they arrange it from there. I guess the scheduling works better that way. I could send her off another email though telling her about the passport issue but I got the feeling when I last spoke to her that she's handed all my paperwork/emails/letter/x-rays over to Shriners. I can't wait to get a date! Haha, that sounded funny b/c I am married, lol.

Elisa

12-16-2010, 10:06 AM

Got my husband to call BC Children's hospital yesterday to update them on new cell phone numbers as we're finished with our current plan and bought new Koodo phones. Husband asked how our file was doing and the secretary said: "Your son is right at the top of the list" which is the most information we've gotten out of them in about nine months. I'm assuming him being at the top of the list means he's on some sort of cancellation list OR as husband said: "someone dies while waiting so long so he gets their appointment" hahahaha!

leahdragonfly

12-16-2010, 10:45 AM

Hi Elisa,

Sorry you are still waiting to hear something. Have you considered politely calling the appointment desk at Shriner's Portland to see if you can schedule it yet? It can't hurt--you know, the squeaky wheel and all. I'm like you, I want to know the date, especially since you are traveling a long distance.

I had actually never heard of Shriners in Spokane until you mentioned it, so I was reading about it online briefly yesterday. There was an article saying that the Spokane hospital was being considered for closure (although I think that didn't happen). It may be that Portland has a much more active spine program. I saw that Spokane only had one spine surgeon, whereas they have several in Portland.

Elisa

12-16-2010, 12:35 PM

I think I might just give them a call Gayle. I've thought about that but I'm trying to be patient b/c of the December/holiday thing, that and I have been in contact with Shriners' office in Burnaby. Also b/c I know our passports won't be here until the middle of January so it's not like we can go until then anyway. I think I will call though when I get home from work. I don't have time to look it up right now but do you know if Shriners' appointment department is listed on their webpage? I'll have more time to look it up when I get home as I do have to get back to work but it should be relatively short day.

Elisa

12-16-2010, 04:35 PM

Gayle, you rock! I did call Shriners in Portland, got transferred to the person who manages appointments, left a message and she just called me back now. They have my son's application and although not officially approved, she is assuring me that he WILL be seen ASAP some time in January as he is of the right age/curve etc. She was really really nice and promised me she'd call back with a date as soon as she has one. Whew.

leahdragonfly

12-16-2010, 07:02 PM

That's wonderful news, Elisa! I just can't imagine having to wait over 9 months and counting with such a vague hope of being seen in Canada.

I think you will find that most everyone at Shriners is friendly and incredibly willing to help the kids, something that sometimes gets forgotten these days in healthcare.

Please keep us posted as you hear more.

Gayle

Elisa

12-17-2010, 06:01 PM

I will definitely keep you posted Gayle. Heck if I get an actual appointment I'll be damn excited I'll have the cap lock on! It is Friday night and no call this week and I doubt the hospital calls on the weekend... do they? My boss has no problem with me carrying my cell phone around in my pocket b/c she knows I'm waiting for a very important call and besides, she loves me, lol.

Elisa

12-20-2010, 01:54 PM

WE HAVE A DATE!!!

Just received a call from Shriners in Portland and have been given the date of January 20th. 2011 at 8:15 am. Woohoo, my son will FINALLY get looked at by a spine specialist after almost one year of waiting and watching his back get wonkier each day it seems.

I really want to thank Pooka, Ed, Gayle and the others who suggested getting in touch with Shriners as well as everyone who participated in my thread as I truly appreciate all your input and your caring and encouraging words.

leahdragonfly

12-20-2010, 08:54 PM

Elisa,

I am thrilled to hear you have a date, and it won't be too long now! Great news. Do you know which orthopedist you are seeing?

Is Shriners helping you to arrange lodging? I am pretty sure there is a Ronald McDonald House near the hospital. There are also numerous local hotels that offer discounts to Shriners or OHSU patients.

You may want to plan on bringing a few snacks and some light reading material or other activities. Hopefully the clinic won't be too busy, but there is usually some waiting involved especially during the first appointment.

Take care,

Gayle

Elisa

12-20-2010, 09:07 PM

I have no idea who we're seeing Gayle. But it is SOMEONE WHO KNOWS SPINES! Sorry for all the caps but I'm just a bit excited b/c we have been waiting for so long which is pretty sad actually but I'm not going to focus on that. They'll send me all the details in a letter so I'll know more then and of course I'll let you all know. Called the wonderful Shriner gentleman today who came and had tea with me when I was at my worst and he listened and helped. He's so pleased to hear things are moving along. I absolutely have to keep him up to date on things for sure.

Pooka1

12-21-2010, 04:32 AM

Elisa

12-21-2010, 03:47 PM

Spiny Mouse,

I admire your attitude very much. You are handling this so well. I think you will be amazed to actually talk to pediatric orthopedic surgeon who knows spine. They may even have more than one surgeon consulting. All your questions will be answered to the extent of what knowledge exists now.

You and your son will be stars at this.

Sharon
Thanks Sharon! I am trying my best to cope with all of this as well as learn as much as possible about this disease as I can and will do my best to share my experiences with others in hopes of helping those who travelling down a similar road. You guys were/are there for me so I feel the need to be there for others.

Even if my son ends up having surgery, I won't feel as though I'm done with it all and can close this bookmark b/c I feel the need to keep up to date with things and encourage those who are just beginning this journey like myself, my family and of course our wonderful and sweet son.

I feel so different today. Just getting an actual appointment to have my son looked at by a spine specialist has taken a HUGE load of my shoulders and I found I just carried on this day and accomplished a lot of household things that needed tending to without waiting and wondering if 'this' is going to be the call I'm waiting for. Waiting and wondering is way more stressful than one could imagine.

I'm so looking forward to getting off this island and heading south and meeting with people who actually know what the hell is going on with my son's spine as well as I would love to meet up with Gayle and perhaps others who are in the Portland area. I also need to buy and sneak back a new laptop somehow, lol.

Edit: Should add that I'm absolutely thoroughly disgusted with our Canadian Health Care system who makes us wait almost ONE YEAR to be seen by a specialist and still no bloody date yet. Yeah, our medical doesn't cost us nothing so to speak but that's exactly what you get: NOTHING! At least we got nothing in this particular situation. Thank God for the lovely gentlemen at Shriners!

jrnyc

12-21-2010, 04:28 PM

i thought that in Canada, the taxes are quite high, to cover the cost of "free" medical care...no?
my sister's been living in Canada for over 35 years, and that is what she told me....

jess

Elisa

12-21-2010, 04:36 PM

titaniumed

12-21-2010, 11:23 PM

Elisa

I see you have a date. Very good. And I will agree with Sharon on how well you are handling all of this, it’s a lot to absorb. We do talk about all sorts of things around here, don’t we? LOL. There is always something new to learn.

Canada is pricy now.....it used to be a great deal coming up there years ago, but not now. I went to Banff in 1995 and it was great time.

I want to ski Revelstoke....that’s the new hot spot in BC for skiers.

Ed

Sherie

12-22-2010, 07:26 AM

Yeah Jess, I think our taxes are pretty high here. We now pay 12 percent HST on pretty much everything and I'm not sure what our income tax is but it's gotta be pretty high too. I'm not so good with math 'n' taxes and stuff but I know we're constantly paying it. We have an older house which is about 24 hundred square feet and our taxes are around 3.5K a year. Now we do get a bit of a rebate but I'm not sure how much.

That doesn't sound too bad as far as taxes. We have an 8.5% sales tax and property taxes around here average around 3.5%, for instance, we're paying $7K in property taxes on a 3000 sf home and homes here in Houston are generally much cheaper than in other areas of the country. We pay around $1200/month on private health insurance. I truly feel bad for folks who are making minimum wage, it must be nearly impossible to afford health ins. On top of that, we pay federal income tax and some states (not Texas) pay state income taxes too.

On the other hand, it all paid off at the time of my dd's surgery. Not only did we get to choose the surgeon, but we were able to go out of state with no penalties. We could have stayed local and found a fine surgeon, but having that choice made a huge difference for us.

I'm glad things are working out for you guys, I would be a nervous wreck not knowing what's going on and not having anywhere to turn to. I can't believe they would put you guys off for so long considering your son's case.

Elisa

12-22-2010, 10:03 AM

It's not nearly as expensive up here in Campbell River as it is in Victoria which is three hours south and the capital of BC. A rundown old and small house that needs a tonne of work or blown up would cost you $400K whereas it would be about half of that up here so in that respect I feel we are very fortunate. There's not as much work up here though and you have to take what you get when you get it and hold onto it for as long as you can. I can accept all that but having to wait for close to a year for my son to be seen by a spine specialist is outrageous especially considering the boy has severe scoliosis obviously but again I'm thankful that he doesn't seem to be in much pain, just a bit uncomfortable. I'll let you all know if BC Children's Hospital ever do call with that elusive appointment. *roll eyes*

Off to my little hotel job on the oceanfront to do what I do with my great co-workers and fantastic boss. Working with nice people makes a huge difference. Hope all have a nice day!

Elisa

12-22-2010, 04:33 PM

Okay, now that I've got a date to see a spine specialist in Oregon, I've gone through being immediately ecstatic to relieved to a sense of peace to the dreaded anxiety. Being the procrastinator that I am with regard to my own prescriptions, I'm at the end of one of my prescriptions that I take daily so of course I cut them in half so I don't have to go to the clinic to get a new prescription. I decided since it was so close to Christmas and the office hours change, that I'd go there after work today and get a renewal so I did.

I was talking to our GP and told him all about how long we've been waiting to see a spine specialist and how I contracted Shriners etc. and while I was sitting there telling him all of this, I started to feel really scared and about actually going down there and having a surgeon rip open his milky white virgin skin and crank all of his bones around and then all of the 'what if's' flooded through my head and I began to sweat.

It all didn't seem real the other day but now it is sinking in and I am starting to get a bit panicky. I honestly wish it were me that was going through this possible/likely surgery and not my baby!

I did get extra anti-anxiety meds though b/c I honestly think I will need them just to get me through. I'm sure my son will be fine, it's me that's a wreck.

Edit: For those of you who took your teens for an initial consultation... what exactly do they have done... xrays? scan? bloodwork?

hdugger

12-22-2010, 05:34 PM

Hi Elisa,

yes, the wish to change places is almost overwhelming.

My son had just some xrays on his first visit (but he wasn't seeing a scoliosis specialist, and he had a pre-surgical curve).

When he finally saw a scoliosis specialist and had a curve in the surgical range, they did an MRI as well. (His doc said, because scoliosis was rare in boys, he always like to do an MRI to see if there was something causing it).

He has never had any blood work (although, given our discussion, I wish I'd asked for a vitamin D/calcium test)

Pooka1

12-22-2010, 05:35 PM

Edit: For those of you who took your teens for an initial consultation... what exactly do they have done... xrays? scan? bloodwork?

It was radiographs and consultation. A long, detailed, explanatory consultation for the first time. That's it.

Have some questions ready in case they are not answered. In your case I think they will bring up the balancing act between allowing more growth and letting the curve get bigger. The decision will probably largely be driven based on the calculated progression rates between the first and second radiographs and the second and third radiographs (all of which you need to absolutely bring with you if to send ahead), also taking into account where he is on the growth curve.

The surgeon will explain everything and if you have questions after you leave you can email them. They will be answered.

Elisa

12-22-2010, 05:59 PM

I will take the CD back to the hospital tomorrow and get them to put the first set of xrays on them. I meant to do that today but was running late and forgot. They were super quick last time getting the second xrays on there so I'm sure I'll have them both on there right after Christmas. I'm dying to see the comparison between the two but I'm almost positive the first ones will reveal 47*.

Doctors and clinics always make me anxious, especially when I'm there for myself b/c I've had such anxiety in the past and just being stuck in this little room all by myself does tend to make me nervous. It really shouldn't b/c I only go there when my one prescription is near empty and it's never a problem renewing it but I hate it just the same and would prefer to cut them in half and have a swooshy head instead of dealing with a new prescription. I put it off for so long this time last year that it snowed a foot, couldn't drive so I walked to the clinic and waited close to 1.5 hours as a walk-in and everyone was in there sneezing and hacking away, ack.

Okay, I'm back to being rational again and am looking forward to this consultation. Not sure if I mentioned this but I could have had a January 6th. appointment but our passports won't be here until around January 15th. so that one wouldn't work and honestly I am glad. The 20th. is good as it gives me a bit more time to prepare things. See, I know now that I got this ball rolling and things could move fast and surgery could be soon and I'm so used to 'just waiting' that I need to adjust to this new gear.

I do hope they will tell me that we should wait a bit until he grows some more, of course I do b/c who really wants to deal with a HUGE spine surgery for their kid especially when they're going about their business pretty well.

Sherie

12-22-2010, 06:49 PM

It will just be xrays and your opportunity to ask your questions. We went to 4 surgical consults before we settled on a surgeon and it was the same with all of them. I had a long list of questions that I took with me to each one, I took notes too. It helped me to keep things straight from one to the other. Later on, about a month prior to surgery, they ordered an MRI, bloodwork and a lung capacity test.

Your son looks pretty severe, I would be prepared for sooner rather than later. I think his curves look larger than my dd's at time of surgery.

Elisa

12-23-2010, 10:59 AM

Thanks for the info guys. I have lots of questions I want to ask and I'll bring along a notepad so I don't forget the answers. Yes, his curve is quite severe Sherie and he's also got a fairly large rib hump but it's not so noticeable with his clothes on, just when he takes off his shirt.

I had a look through the Shriners' Portland hospital website to see who their pediatric orthopedic surgeons are and there are three listed but only this one listed below says anything about scoliosis so I'm thinking maybe this is the fellow we will see. Anyone know anything about this him?

Charles d'Amato, M.D.
Staff Surgeon

Dr. d'Amato is a specialist in the treatment of scoliosis and otherspinal disorders as well as a professor at Oregon Health and Sciences University. He completed his medical education at Hahnemann Medical College in Philadelphia, Pa., completed his internship and residency atMonmouth Medical Center in Long Beach, N.J., and a pediatric orthopaedic residency and fellowship at Toronto's Hospital for Sick Children.

He is a fellow of the Royal College of Surgeons of Canada and the American Board of Orthopaedic Surgeons and a member of the Scoliosis Research Society.

For the majority of the past decade d'Amato has been the chief of staff and assistant professor of Orthopaedic Surgery at Brown University School of Medicine in Providence, R.I. His work has been published in The Journal of Pediatric Orthopaedics , the Pediatric Clinics of North America and Spine.

Dr. d'Amato is credited as a co-developer of the Providence Brace for night use in scoliosis patients.

hdugger

12-23-2010, 11:26 AM

There are two Scoliosis Research Society members listed at Portland's Shriners. Dr. D'Amato is one of them, and the other is Joseph Ivan Krajbich.

Googling, D'Amato is a big brace guy (guessing that's because he invented one of them :). Gayle (leahdragonfly) should know more - she's been to that Shriners.

Elisa

12-23-2010, 11:40 AM

Okay, here's the one you were referring to hdugger.

J. Ivan Krajbich M.D., FRCS(C)
Staff Surgeon

Dr. Krajbich received his undergraduate degree at the University of Waterloo, and earned his medical degree from the University of Toronto. He completed his residency training in orthopaedic surgery at the University of Toronto. After completing fellowships in tumor surgery and pediatric orthopaedics, he joined the staff at the Hospital for Sick Children in Toronto in 1982. He joined Shriners Hospitals for Children® in 1993.

Dr. Krajbich is a Fellow of the Royal College of Physicians and Surgeons of Canada and is a member of numerous professional organizations and associations including Musculoskeletal Tumor Society, Pediatric Orthopaedic Society of North America, Scoliosis Research Society, International Society of Limb Salvage and European Pediatric Orthopaedic Society.

He also holds the position of adjunct associate professor in the Department of Orthopaedics and Rehabilitation at Oregon Health & Sciences University.

And this is the third fellow.

Dennis Roy, M.D.
Staff Surgeon

Dennis Roy was recruited from Cincinnati Children's Hospital Medical Center where he was associate director of pediatric orthopaedics. He specializes in disorders of the hip and feet, but treats a variety of pediatric orthopaedic conditions. He is a pioneer in arthrosporic surgery of the hip in adolescents and young adults.

Dr. Roy received his medical degree from the Medical College of Georgia and completed his internship and residency at the National Naval Medical Center, Bethesda, Md. He trained as a Fellow in pediatric orthopaedics at the Scottish Rite Hospital for Children, Atlanta, Ga.,and at the Alfred I. DuPont Institute, Wilmington, Del.

Dr. Roy is a member of numerous medical societies including the Pediatric Orthopaedic Society of North America, the European Pediatric Orthopaedic Society, the American Academy of Pediatrics and the American Academy of Cerebral Palsy and Developmental Medicine. He has spoken nationally, internationally and locally on a variety of pediatric orthopaedic conditions. He has a number of publications in a variety of pediatric and orthopaedic journals.

hdugger

12-23-2010, 12:00 PM

The last one doesn't sound like he's a spine guy, but the first one is. If you google this forum, there are a few people here who've seen him.

Elisa

12-24-2010, 09:27 AM

Sherie, I went back and reread your comment. Wow, I'm shocked that you pay $1,200 a month for private medical insurance. That would pay for our mortgage and groceries for a month or close to it. There's absolutely no way we could afford close to paying that for medical insurance. And you went for FOUR consultations as well which is impossible for us b/c we cannot even get in to see one here in BC. Then at the end of it all, you get to choose your own surgeon. Triple wow. I guess money does talk in this situation b/c you're getting a whole lot from your insurance.

Our system is not like that at all and even if it were, we wouldn't be able to afford it so I guess in the end it wouldn't work for us anyway. We are beggars and beggars can't be choosers so we're thrilled that we can take our son to Portland as offered and only hope (I'd pray but I'm not really religious) a surgeon there will be do a wonderful job with our boy. Someone tell me these guys are good otherwise I'll start having day-mares about back alley hacks! O_o

I want December to be over. I'm so not a Christmas person and it hasn't stopped storming here for two or more days and our garage is now flooding, arggg. Also, I can start a countdown on January 1st. to the 20th. and get things organized and prepared in my head.

hdugger

12-24-2010, 11:14 AM

Our COBRA coverage is close to $1700 a month, which is also far more than we pay in mortgage. We're fortunate 1) that it's subsidized for a few more months and 2) that we both have jobs (neither offering health insurance) that can pay for it. But many, many people fall off the insurance rolls because of the cost.

Somewhere between having a slew of uninsured people and not having enough specialists is a country that's found a happy medium :)

Elisa

12-24-2010, 04:41 PM

Somewhere between having a slew of uninsured people and not having enough specialists is a country that's found a happy medium :)

I think Sweden and a few of the other western European countries have a pretty decent health care system if I'm not mistaken.

It takes forever... literally for our kids to see a specialist up here but oh my are they ever a friendly laid back bunch, lol. Just got back from picking up a few groceries on the busiest shopping day of the year, noticed 'yellow-fleshed' potatoes were on sale but there weren't any on the shelf so I asked. The lady apologized and said they were out. No big deal, I got a different kind. Then I'm going through the til and she comes running up to me and said: "I've been looking all over the store for you, I found some yellow-fleshed potatoes!" We'll all get sick and die up here but we'll die a very polite death, haha. Maybe we could talk some of your US specialists to work across the border, give up some of that dough for a more relaxed, less stress lifestyle? Come on, that's gotta be worth a bunch.

Pooka1

12-24-2010, 04:45 PM

I think Sweden and a few of the other western European countries have a pretty decent health care system if I'm not mistaken.

It takes forever... literally for our kids to see a specialist up here but oh my are they ever a friendly laid back bunch, lol. Just got back from picking up a few groceries on the busiest shopping day of the year, noticed 'yellow-fleshed' potatoes were on sale but there weren't any on the shelf so I asked. The lady apologized and said they were out. No big deal, I got a different kind. Then I'm going through the til and she comes running up to me and said: "I've been looking all over the store for you, I found some yellow-fleshed potatoes!" We'll all get sick and die up here but we'll die a very polite death, haha. Maybe we could talk some of your US specialists to work across the border, give up some of that dough for a more relaxed, less stress lifestyle? Come on, that's gotta be worth a bunch.

Doctors can't just go north... as you know, Canada rations the number of doctors to keep down costs per what I was told.

Sweden succeeds at everything because it is the most atheistic country.

Elisa

12-24-2010, 05:09 PM

I've really never had a problem with our health care b/c in general, it's when you need a specialist that it becomes a problem, especially with kids and I'm just finding this out now b/c of our situation. I hear people complaining about it all the time but of course when it doesn't apply to you you're not really paying attention but now I know exactly what they're complaining about.

I always thought the big time US specialists didn't want to cross the border b/c they get paid way more money where they are and don't want to take a cut in pay. That's why I suggested giving up some of that dough for a less stressed lifestyle; a trade off so to speak.

Sweden is sweet... they've got the best hockey players in the world! Yeah, we've got two pediatric orthopedic surgeons here in BC but we've got the Sedin twins, woohoo! It's all about hockey up here you know that eh, lol.

Sherie

12-24-2010, 07:11 PM

I have a brother-in-law that lives in Sweden. They have a very good education system too. I think they can manage because of high taxes and a small population. I also spoke with a colleague from Norway which also has a system like Sweden. He said there is no incentive to work overtime or to make more than an average salary because extra income is taxed at a very high rate. The government strives to keep everyone at the same level in society. There is always a trade off no matter what system you live under. I just don't see our country ever being able to afford socialized medicine but I think there needs to be a subsidized program for people who can't afford private insurance but don't qualify for medicare. But, I do feel very fortunate we had so many options available to us especially knowing that not everyone is so lucky.

We went to Texas Scottish Rite for a consult because of their reputation in scoliosis treatment. They were #1 on our list until we went to see Lenke. Just because it's a charitable hospital doesn't mean they don't have top notch surgeons. We were very impressed with them.

Pooka1

12-24-2010, 09:01 PM

Scandinavia, as a group, is leading the world in many respects and is the most atheistic area of the world.

Finland has the world's best economy and is the best country overall...

http://en.wikipedia.org/wiki/Finland

Finland ranks the best country in the world in the 2010 Newsweek survey based on health, economic dynamism, education, political environment and quality of life.

Denmark, the third most atheistic country, is also the happiest place on earth...

http://abcnews.go.com/2020/story?id=4086092&page=1

Elisa

12-25-2010, 03:55 PM

The 20 happiest nations in the World are:

1 - Denmark

2 - Switzerland

3 - Austria

4 - Iceland

5 - The Bahamas

6 - Finland

7 - Sweden

8 - Bhutan

9 - Brunei

10 - Canada

11 - Ireland

12 - Luxembourg

13 - Costa Rica

14 - Malta

15 - The Netherlands

16 - Antigua and Barbuda

17 - Malaysia

18 - New Zealand

19 - Norway

20 - The Seychelles

Interesting article and I see Canada ranks #10 in the world for being a "happy" place to live and I am very happy living here, especially on the west coast which is beautiful, peaceful, laid back and the climate is relatively mild. My only complaint so far is the lack of specialists here and honestly I've never dealt with this problem before until now. If we could somehow improve that situation, all would be wonderful. I've said many times before: "You'll have to take me off Vancouver Island in a pine box" and maybe that's how it will end up being b/c I'm going to die here waiting for medical treatment if I ever need to see a specialist, lol.

jrnyc

12-25-2010, 05:26 PM

hmmm...any time i am lucky enuf to go to the Bahamas, especially in the middle of the winter, i am REALLY happy! surprised it wasn't listed...

jess

Elisa

12-28-2010, 05:48 PM

Is it January yet!?

This is THE longest December in history I swear. I feel as though I can't even comment on most things b/c I don't even have a proper diagnosis yet.

Maybe I had too much wine the other day when I thought my son's back looked better but yesterday when I looked at him again, he looked just as bad as ever. Maybe it makes a difference on how he stands on a certain day? I don't know. He likes his weekly chiro visits as well as his hanging bar and he hasn't been using the deep heat rub or even his heating pad so I guess that's good.

Apparently, if we go down on the big cushy Shriners' bus we can't do duty free b/c it holds the bus up and it's on a tight schedule. Damn, there goes my bottle of Grand Marnier, lol.

Edit: Ed! Just thought you'd be interest in knowing that our local Mt. Washington has the most snow of any ski resort in the world! Very cool.

http://www.mountwashington.ca/en/conditions/alpine-snow-report.html

titaniumed

12-29-2010, 12:19 PM

Elisa

I see that! Its been incredible this season. California’s major reservoirs are pretty much full, so water will be available for the agriculture sector this season.....

I have not been feeling well and have not been skiing recently. I have an old thread about weather related pains. This last storm has me in the dumps, with my “beartraps” which is a tightening of the paraspinal muscles in the thoracic spine. I have done quite well this last year, with NO problems at all, but these last few days have been a drag. I thought I was done with these events, apparently not.

I’ve been thinking about a move down south....Like Mexico or Costa Rica south. Heck, if I move to Trinidad, Dr B can do my check ups! LOL
Ed

Elisa

12-29-2010, 12:52 PM

Sorry to hear you're not feeling well enough to ski Ed as I know how much you love it. Hope you feel better soon. If my son ends up going into surgery, I'm kinda hoping it won't be while it's winter b/c we're supposed to get a colder one this year. We heat our whole house with a wood stove and I wish we had bought a bigger one b/c the back bedrooms upstairs where the kids are tend to be colder than the rest of the house. Those rooms are also above the unheated garage so that doesn't help. We do have two ceramic heaters for those rooms that help a bit. Might have to end up trading rooms with the boy for a while if he finds it too cold after surgery.

Check out this pic. The trees have turned to snowmen on Mt. Washington.

jrnyc

12-29-2010, 02:33 PM

hi Ed
so sorry you can't practice your favorite sport for now...
how about botox shots..?
they work great for muscle problems...
plus, then your thoracic would look so young...:)

jess

Pooka1

12-29-2010, 02:37 PM

Take care of yourself, Ti Ed.

I hope you feel better soon.

Elisa

12-30-2010, 05:41 PM

Here's the x-rays from September 2010.

Elisa

01-07-2011, 02:17 PM

Picked up our passports from the post office today. They came early too which was a nice surprise. I did tell the lady at Service Canada that we weren't going on holidays, we were going down to the US for medical reasons for our son and she seemed very sympathetic so perhaps she put a note on them, not sure but they are here!

Talked with the Shriner's lady today and got a better understanding of our itinerary and we'll be heading over to Vancouver/Burnaby on January 18th. and will spend the night here: http://www.accentinns.com/burnaby

Will then have an early breakfast the next morning and board the big Care Cruiser Coach and leave by 8:30am. The drive would be 506 km - about 5 hours 19 mins and up to 6 hours 20 mins in traffic. Not sure where we're staying in Portland yet.

Then our appointment is the next morning on January 20th. at 8:15 am and will be 3-5 hours long and then back on the bus to Vancouver/Burnaby and back at the Accent Inn Hotel, then the next morning, on the ferry and back to Vancouver Island.

I can't wait! It's like a mini holiday. =)

leahdragonfly

01-07-2011, 02:38 PM

Hi Elisa,

I have been thinking of you and your son as your date finally draws near. Glad to hear you found out a bit more about your itinerary.

I would love to met up with you but alas I actually live 2 hours south of Portland. Hopefully it will be a good day for us both--it is supposed to be my first day back to work after my surgery, which I have some mixed feelings about.

I have a friend who had scoliosis surgery with Dr d'Amato done several years ago--her back looks great and she was very happy with the care she received at the Portland Shriners. She was 17 when she had her surgery.

How are you doing with your list of questions? I know it's hard to think of them (or narrow them down) when you are not quite sure what you will be told.

Take care, and I will look forward to hearing all about your trip and appointment. Thank goodness for Shriners.

Gayle

Elisa

01-07-2011, 02:54 PM

Thanks Gayle. No worries that you can't meet up with me but I doubt I'll be meeting up with anyone this trip anyway b/c we only have the Wednesday evening in Portland, then first thing the next morning is our 3-5 hour appointment and then it's back on the bus to head back up across the border.

I honestly haven't got any specific questions that I can think of until I actually get a full and proper diagnosis and then I'm sure I'll have tonnes. If you guys have some questions for me, you could post them here and I'll write them down though.

Good to know you know someone who had scoliosis surgery at Shriner's and that it turned out well. That is encouraging.

I have been worrying about getting those passports on time and it was stressing me out a bit but it's a big relief actually getting them today. I have all the paperwork that I need now which makes me feel much more relaxed. And now that I know my itinerary for the most part, I can start planning for that, taking time off work, contacting my son's school and getting all my seven chinchillas taken care off and stocked up with everything they need so all my husband has to do is check on them and top up a few food/water dishes and hay and of course he has to give them their oat treat/supplement every night and talk to them in baby talk and kiss them.... okay I know he won't do any of that, haha.

I haven't been online in about a week b/c I was visiting my sister whose health is very bad right now as well as my dad who has Alzheimer's has been taken out of his own home and into the psych ward for observation b/c he had a bit of a freak out. He won't be going back home unfortunately and they are waiting for a place to come up where he will have nursing care. It is so sad. So much going on right now unfortunately.

Pooka1

01-07-2011, 02:57 PM

Spiny Mouse,

Make sure you don't leave there without understanding the balance between growth and potential for curve progression SPECIFICALLY in your son's case and not just in general. I think they will explain this to you but it is important that you understand because I think they might include you in the treatment decision and timing.

I am guessing they will try to determine his skeletal maturity with as much accuracy as possible. It could be they do it from the spine films or they may do it from a hand/wrist radiograph.

Elisa

01-07-2011, 03:09 PM

Excellent question Pooka, and it is now my question #1.

Gayle, forgot to say: YES, thank goodness for the wonderful and generous people at Shriners. I honestly don't know what I'd do without them b/c we have not yet heard back from BC Children's. I'm still in disbelief the Shriners are footing the bill for absolutely everything: transportation, accommodation, food and of course medical expenses. Wow, just wow. They're definitely going to be my number one charity to support.

Elisa

01-13-2011, 04:58 PM

I'm getting so excited about heading down to Portland as it's getting so close now. We will be picked up on Tuesday morning between 8-8:30 am here in Campbell River, will drive the two hours to Nanaimo and catch the noon ferry across to the mainland which is about a two hour ferry ride. Talked to the Shriner lady today and she said we'd be staying at this hotel in Portland: http://www.portlanderinn.com/ Did I just read they had a 24-hour video arcade!? O_o

Can't wait for a diagnosis and answers FINALLY!

Pooka1

01-13-2011, 05:19 PM

Hey Spiny Mouse,

I just wanted to tell you that I admire you for keeping your good humor throughout this run up to see the orthopedic surgeon. It's a very nerve-wracking time. I think you are a cool customer and that will stand you in very good stead for mastering the medical details to come.

Looking forward to hearing about your trip.

Best regards,
Sharon

Elisa

01-13-2011, 05:57 PM

Thanks for you kind words Sharon; appreciate it much.

I am so lucky I think to have been able to keep my sense of humour pretty much through most things in my life and I have my mom and dad to thank for that b/c we were brought up to never take ourselves or situations too seriously. I am pleased that our kids tend to be the same way too which does make things a lot easier in life. Like I said before, I never say: "why me?" rather, "why not me?" No one is entitled to a perfect life and there is no such thing anyway so why expect that.

So I have a son with a very crooked back... could be a whole lot worse and I am glad we're only dealing with scoliosis and not some other life threatening disease that you wouldn't know if your child would live to see the next day or hour. That would be so much more agonizing.

I am just so absolutely grateful to these wonderful Shriner people for not only helping us out in our time of dire need but are being so generous about the whole affair. It's just jaw dropping. I have no idea how I am going to repay these people but I'll think of something. Maybe I'll write an article to our local newspaper similar to one that I read a while back: "Overwhelmed by Shriner's Generosity" and probably buy one of those tickets they sell to New Year's Day brunch with lotsa drinks, lol.

foofer

01-14-2011, 07:56 AM

I agree about your great attitude, Elise. Your kid will always remember how you were excited and grateful about all the details and nuances of this trip.

Elisa

01-14-2011, 06:18 PM

I'm working as much as possible right now b/c I'm taking five or six days off next week as well as I have to get things organized around the hotel so the girls will have everything they need to get things done while I'm gone. It also helps to make the time go by faster b/c Tuesday is dragging.

I've never left my chinchillas or kitties for this long before and I know the kitties will be fine b/c my husband is a cat person and is the one to feed and care for them for the most part but the chinchillas are strictly mine and he has pretty much zero interest in them. All five HUGE cages have to be cleaned before we go as well as I have to make sure all their food, hay and water is topped up which will last two days max so he'll have to go in and replenish everything. Mostly they will miss getting out for their nightly runabout and dust baths but I'll make sure he gives them their oat treat/supplement. I miss them already. =(

Looking forward to getting off this rock and across the border. My son has never been to the US so he's really excited about that. He needs a haircut and could use some new runners otherwise he will certainly look like a charity case, lol.

Appreciate all the help and encouragement I've received from this site.

Pooka1

01-14-2011, 06:23 PM

Well, I have used a pig sitter when we go on vacation. I only had four pigs then and had a great sitter.

Could you find a teenage girl who loved rodents to come each day to take care of them?

Elisa

01-14-2011, 06:33 PM

Unfortunately I do not know any pet sitters up here but if we were still in Victoria I'd definitely know a few. I will send him relentless text messages reminding him to check on them and to make sure they have everything they need. He doesn't know how to text back so it will be a constant stream of instructions on my part. Why do I think he's gonna turn his phone off eh, lol.

I plan on bringing my laptop with me so I'll be able to give updates to y'all and am anxious to let you all know what the docs think and what the plan of action will be.

Can't wait til Tuesday! We better not get snowed in here otherwise we won't be able to drive to the ferry which is two hours south. >_<

Elisa

01-17-2011, 12:00 PM

One more day! Will be leaving CR by 8:30 am tomorrow morning to head over to the mainland and then down to Portland Wednesday and the big appointment will be on Thursday. I've been getting everything all ready around the house as well as tie up some loose ends here and there. I decided to get additional medical insurance while we're in the US b/c although the bus is insured, nothing else is and with my luck I'll slip on a banana peel on the street and wind up in the hospital with a messed up back again.

Yesterday I went out to look for a nice new duffel bag and came out with a beautiful piece of luggage instead b/c the shop had most of their luggage on sale for 70% off: regular $230 for $69! I was so excited that I couldn't remember any of the other stuff I needed so I have to go back today and this time I'm bringing a list, lol.

My son gets his hair cut at 2:15 this afternoon and other than that I'm packed and ready to go. And no I haven't forgotten the passports, haha!

Have been working on getting all my critters cleaned, organized and ready to be looked after by my husband and he assures me he will take good care of them.

It's an absolutely beautiful sunny day here on the Island and I can't forget my sunglasses for the ferry ride. 0_0

leahdragonfly

01-17-2011, 12:58 PM

Wonderful, Elisa, I am so happy for you that the big day is just about here.

Don't forget the CD's either, if they weren't already sent ahead! I did that once.

Have a safe trip, and please do let us know how it all goes. I'll be thinking of you.

p.s. did you ever learn which physician you are seeing?

Take care,

Gayle

Elisa

01-17-2011, 01:24 PM

Got both CDs Gayle but thanks for remembering. I didn't send them down ahead, just the pics from the most recent set. Nope, I have absolutely no idea which doctor(s) we will be seeing and probably won't know until Thursday morning when we actually get to Shriners' Hospital but I'll let you know. I too am very curious but it really won't mean much to me b/c I am not familiar with any of them anyway. I've been told to expect to be at the hospital from 3-5 hours and I'm pretty sure a lot of that time will be spend waiting for this and that and getting results etc.

I thought the gentleman that was coming to pick us up was also picking others up along the way but apparently they are sending him over here to the Island just to pick us up. Talk about top notch service, wow.

Elisa

01-17-2011, 04:49 PM

I'm so ready for a break now with all my running around. Got the boy a haircut, wish it were shorter but that's what you get when you leave him there while you run more errands. The extra travel/medical insurance for both of us for two days was a grand total of twenty bucks. Now we can both slip on peels of any sort, hurt ourselves and we're totally covered. Did you know that a hospital bed for one night in the US without anything else costs 10K? O_o

Picked up some sparkling juices and some snacks to take with us as well as some decent red wine that I am helping myself to right now. :D

Got an automated call from Shriners a few minutes ago reminding us of the appointment and to confirm it so that's done.

Now let's see what exactly is wrong with the boy's spine... I want details!!

Pooka1

01-17-2011, 05:00 PM

Spiny mouse,

You are in the home stretch, almost in the chute.

Things will begin to move at the pace they should have all along.

In your case with a teenage boy, the delay is something that a might have happened even if you were being seen every few months by a surgeon. He has grown in this last year. You might not be at a disadvantage over it is what I'm saying. The surgeon will probably comment on this.

Good work. Enjoy the wine.

Sharon

Pooka1

01-17-2011, 05:01 PM

BY the way, mentions of "chinchilla" peaked during the early years of the depression for some reason...

http://ngrams.googlelabs.com/graph?content=chinchilla&year_start=1900&year_end=2008&corpus=0&smoothing=3

Elisa

01-17-2011, 05:10 PM

Sharon, I was just saying to my husband the other night that even though we've waited for fifteen months or so to have our son looked at by a specialist, I'm not really sure it would have made that much of a difference anyway b/c he has done a lot of growing in that time. His pain has been minimal as well. It's also given me/us time to research, understand, have things absorb and sink in as well. I do feel a lot more confident about the whole situation than I did even a few months ago before I found you guys. Oh yes, the red wine tastes especially good tonight. I probably won't sleep much though for fear I'll sleep in and miss my ride, lol.

Elisa

01-19-2011, 06:53 PM

We're here!

Pulled into Portland around 3:30 this afternoon and we left Vancouver BC at 8:30 this morning, stopped for a quick lunch, so the timing wasn't bad. We'd have been here a good 45 minutes earlier but... umm, there was a mom/son who wasn't on the driver's list so we had to turn back and pick them up. I am so glad that wasn't me b/c I'd have been bawling my eyes out but the mom took it all really well, lol.

Everything is great: bus ride, hotels, hospitality etc. No complaints at all. It will be a very early and long day tomorrow b/c we will have to get up, get ready, have breakfast and be ready and waiting for the shuttle bus outside at 7:15 am. Our appointment is at 8:15 am so I will have a lot more to report after that. There is no Internet on the bus so I'll have to wait until we're back in the Vancouver BC hotel tomorrow evening.

Talked to my husband a bit ago and all my critters are fine so I am happy. :D

Edit: Oh my, I can't believe how cheap alcohol is down here. I just picked up a nice bottle of Yellow Tail Shiraz for $6.99 in the shop downstairs and it would sell for $17.00 up in BC. Now that's just criminal. >_<

Pooka1

01-19-2011, 07:37 PM

Glad you had a safe trip!

Big day tomorrow and you are ready.

In re the libations, you can bring a few hundreds bucks worth of goods duty free, no?

Elisa

01-19-2011, 07:47 PM

No Pooka, no stopping at duty-free b/c the bus goes straight to the front of the line so they can cross the border asap without anyone having to declare anything. I totally understand that and don't want to be held up either. I guess I'll just have to drink a bunch here. *hiccup* haha!

It feels weird to be off my safe quiet lil island but really exciting too. It's not very often someone drives you around in a big comfy bus with recliners, pays all your hotel and meal bills so my son and I am totally thrilled. I really enjoyed the ride down here and am looking forward to getting all comfy in my chair again and enjoying the ride. Oh, you should see the looks from other drivers, especially truckers when they see the big Shriners' bus go by: they all look, point and give a nod or a wave. Very cool. O_O

Answers tomorraww!

leahdragonfly

01-19-2011, 08:04 PM

Hi Elisa,

thinking of you and your son tomorrow. I'm so glad you will finally have some answers.

I'm happy your trip is going so well!

Best,

Gayle

Elisa

01-19-2011, 08:13 PM

Thanks Gayle. Yep, tomorrow is the big day when we finally get what we came here for in the first place and that is answers. Talked to my mom on the phone a few minutes ago and she said I sounded so relaxed. I told her that I was very relaxed (no jokes about the wine people) and the getting here was totally great. If I didn't know better, I'd think we'd booked a holiday. Shriners = wonderful people and I haven't even seen the brand new wing of the hospital that apparently "you can see your face on the shiny floor" and the staff are extremely friendly and knowledgeable. I have no doubts.

Man, the food prices here are amazing too. I think I'd be a whole lot fatter if I lived down here, lol.

hdugger

01-19-2011, 09:36 PM

And you have to try our beer too! The two things Portland really gets are beer and movies, and we mostly try to do the two of them together. If they throw in something else, like sitting on a rooftop and drinking beer while watching movies, so much the better. In the summer there are even pools that let you float around at night while watching movies.

Best of luck tomorrow - so good to know he's finally being seen and you'll have your answers.

hdugger

01-19-2011, 09:41 PM

Oh, if you get the chance (and it may be waaay too hectic), there's a new tram that runs from one of the buildings across from Shriners and takes you to the bottom of the hill and back up. It's a short ride - probably no more than 10 minutes each way - and it gives you a great view over the city and on through to Mt. Hood (assuming it stays clear tomorrow).

Here's the link

http://www.portlandtram.org/

Beyond that, there are some great aerial walkways all over OHSU (the complex that Shriners is in).

Edit: Oh, and while it's free from the top, you have to buy a $4 ticket to get back up, and it only takes credit cards. So, just make sure you don't get stuck at the bottom with only cash :)

Elisa

01-19-2011, 10:03 PM

I am absolutely stuffed. This Jubitz truck stop sure does pile on the food. My son had a full rack of ribs with fries which came with steamed veggies, coleslaw and he had a dish of prawns on the side. I had a steak with prawns on the side, salad and there were buns and other things but I couldn't eat it all and we put it in a to-go container. I know I won't be having breakfast in the morning and will just pop some of the leftovers in the microwave tomorrow; that was a lot of food and it was good. I had pint too and only cost me $3 (alcohol is not included with Shriners, for a good reason, haha).

hdhugger, we won't have time tomorrow to do anything except get through the appointment and get back on the bus to head north unfortunately but next time I will would definitely love to check out that sky tram... and the beer floating around somewhere watching a movie on a rooftop, lol.

Does anyone want to marry me so I can move down here? No one can tell my husband though.

I'm going to call the front desk for a wake up call tomorrow I think b/c I am getting so tired and certainly don't want to sleep in. I wish I had more time here. Next time I will though for sure. :D

Elisa

01-20-2011, 02:14 PM

We saw Dr. Joseph Ivan Krajbich today and he examined my son thoroughly as well as looked at his previous x-rays along with the new one he had taken today. We aren't going home to Canada this afternoon with the rest of the passengers on the bus b/c we are having an MRI done tomorrow at 4:30 along with a pulmonary test. He wants to rule out any spinal cord issues that could be the cause for his scoliosis. If so, then we will deal with that issue. If the MRI comes back okay, his plan is to have our son come back to Shriners asap as he feels his case is urgent. His curve is 110 degrees and it is not very flexible.

First step: halo traction for two weeks in order to stretch out the spine naturally using head weights.

Second step: spinal fusion

He will be in the hospital for about four weeks.

He said my son's case is nearly the worst he has seen in perfectly healthy teens and if something isn't done asap his spine will get worse and eventually collapse.

That is it.

leahdragonfly

01-20-2011, 03:05 PM

Hi Elisa,

my heart goes out to you reading your post. I am glad you're getting answers, but good lord, 110 degrees. I am so sorry for your son and you that this was not able to be corrected sooner.

I have heard that Dr K does the most complicated spine surgeries there in Portland, so I am sure your son will be in good hands. His nurse and Dr d'Amato's nurse wrote a very good article about scoliosis that I will try to dig up for you.

How is your son taking to the news? And my dear Elisa, how are you holding up?

Take care, I'm thinking of you, Gayle

Pooka1

01-20-2011, 03:14 PM

Spiny Mouse,

Deep breaths.

You got your son help.

You have a plan going forward.

You have a great surgeon. These guys are amazing!

Your family will handle this and move past it.

Best regards,
Sharon

Elisa

01-20-2011, 04:38 PM

Sharon and Gayle, thanks for the encouragement. I am better now than I was this afternoon when the surgeon dropped the bomb. I went from having no one seeing my son for fifteen months to having been told his case is one of the worst cases ever in a healthy kid and that he needs a first surgery to "loosen" up his spine and have halo traction for two weeks before a spinal fusion can be done b/c his curve is huge and not flexible. If all goes well he will spend four weeks total in the hospital.

I had a complete meltdown b/c even though I knew his back was wonky, I didn't even think of the halo traction possibility and that really freaked me out. They brought in a social worker to the room with a big puppet (with halo attached) and I honestly thought she had the wrong room b/c I was thinking she was there to give some little kid a puppet show. When I realized she was there to help me/my son understand what halo traction was, I did kind of laugh b/c I was sure she had the wrong room and patient. Then they brought in a little boy in a wheelchair who had the halo on and showed us what it looked like and how he could move his head around pretty well and he seemed okay. Neither me nor my son really wanted to see the little boy but in the end his mom along with a nurse brought him in and we talked to him and his mom for a few minutes.

My son is taking it all good actually. He's mostly concerned with having enough books to read while he's in traction as well as was asking if there was a computer he could use and some games etc. The nurse assured him he would not be bored at all. This will be a good time to buy a new laptop for him and he seemed pretty stoked.

I was very angry that my son had to wait this long before being seen by a spine specialist and that something could have been done sooner before it got this bad and I am hating BC Childrens' Hospital right now but am happy we are finally going to move forward. 110 degrees. Wow, just wow!

Pooka1

01-20-2011, 04:53 PM

Everyone understands your feelings! Nobody would blame you. You are a wonderful mother.

The point now and always is to move forward. Your son sounds like he is really stepping up to the plate. You must be very proud. He seems like such a great kid.

They can fix this. Things could be worse. Eyes on the prize.

Take your time and be good to yourself.

We are with you.

Sharon

Pooka1

01-20-2011, 04:53 PM

ps. Puppet show!

hdugger

01-20-2011, 05:11 PM

Elisa,

Your son has a great doctor, a great mom, and a great attitude. Kids manage through these things amazingly well - so much better than we do. I'm sorry that he has to go through it, but I'm certain he'll come out fine on the other side.

If Toni (from the scoliosis support forum) is around, or if you post over there, I'm pretty sure she had halo traction as a kid (as well as all kinds of casting as an infant). She could give a better's kid perspective on it.

Give him a hug for us, and go get yourself some of that good Portland beer.

Elisa

01-20-2011, 07:57 PM

Thanks hdhugger. I am feeling a lot better tonight than I did this afternoon; such a big bomb to drop all at once and not being able to go back with the rest of the group was a bit upsetting. I do think it's best to stay and get further testing done now though since we're actually here and that way we won't have to come back down just for that. Dr. K (I'm going to call him that for now b/c I can't remember how to spell his name) is putting my son on the "urgent" list so that's great.

Off topic: Can anyone from the Portland area help me find a bookstore or Target store etc. that carries the Terry Goodkind series? I'd love to pick one up for my son to read as we have one more night here in Portland and then a long drive back and then ferry to Vancouver Island. We're staying at the Portlander Inn but I no clue where anything is or how to get there. Thanks.

titaniumed

01-20-2011, 08:01 PM

Elisa

Tough post for me.

Your son is a trooper, always remember that. He is going to pull this off with flying colors, I have no doubt!

I think that Brad(Quickdraw)also along with Tonibunny did halo back in 1983 before Dr Bradford worked on him. He would also be a great person to talk to. He had his surgery when he was about 13 and had a high thoracic 100 degree plus curve. He is in Winnipeg. PM him, tell him Ed say’s hi.

Everything is going to be just fine, and they will fix him up....

Try not to worry too much.... Deep breaths.
Ed

leahdragonfly

01-20-2011, 08:20 PM

Hi Elisa,

Powell's Bookstore is absolutely fabulous. I think it is on Burnside. I am not sure where it is in relation to your lodging, but I am sure you could inquire at the lobby desk. There is good free transportation in Portland, the MAX, that goes quite a few places.

I am really glad you are staying over to have the MRI tomorrow. Will they be coming back to pick you up the day after? Will you get to see Dr K again about the MRI result, or speak to him by phone? If his nurse is still Kelly Alexander, she is wonderful and has a can-do attitude. I wouldn't hesitate to ask her anything.

You are doing a wonderful job for your son, and you have a great attitude. You son is very lucky to have you as his mom.

Keep in touch,

Gayle

Elisa

01-20-2011, 08:31 PM

Thanks Gayle, I'm handing in there and I too am glad I decided to stay to have the MRI done otherwise I'd either have to come back for it OR get it done in Canada and have the results sent down here. Yeah, sure, I just want to wait for a year or more for that eh!? Yes, Kelly is still Dr. K's assistant and she was very helpful today, everyone was wonderful as promised.

Okay, I'll write down the name of that bookstore and ask the front desk how to get there. We get to sleep in tomorrow for a change and won't be picked up until 2:00 pm for MRI and pulmonary appointments so we do have a bit of time to go book shopping. I've been told that I will be given Kelly's number so I'm thinking I'll be contacting her about the MRI results but honestly I don't know. We will be leaving Portland at 8:00 am Saturday morning to head back home.

Sherie

01-20-2011, 08:44 PM

Wow! That's a bombshell. Thank goodness you were able to get to Shriner's, who knows what it would end up being if you had to wait back home. I'm glad your son is getting the care he needs and he's handling it so well (you too),

Just wondering, did the doc venture to say how long the fusion will be? Will he go into the lumbar?

Elisa

01-20-2011, 08:46 PM

This is the lady and her son that travelled down to Portland on the bus with us. She started up a facebook page a while back b/c she too was having a helluva time getting anywhere with BC Childrens Hospital. She and her son saw Dr. K as well today and they will be heading back to Shriners within 90 days so her son can have surgery. She has been very vocal with the politicians and media about how awful things have been in BC and her story was on the news (missed it) as well as there were several articles written in the local papers.

http://www.facebook.com/?ref=home#!/pages/Help-Donovan-Get-Surgery-at-BC-Childrens-Hospital/161347427240929

Elisa

01-20-2011, 08:59 PM

Sherie, the doctor didn't discuss the details of the fusion, he mostly talked about the halo traction. I'm guessing he's taking it one step at a time or maybe he thinks it's too much information for me to take in right now and he's probably right. His assistant Kelly did draw me a little diagram and she mostly talked about fusing the thoracic region and talked about how that area wouldn't make a whole lot of difference to his flexibility unless he was into gymnastics etc. so again I'm guessing most of the fusion will be up in that area and not so much the lumbar. I'll find out more tomorrow as well as when I talk to her on the phone.

Elisa

01-20-2011, 09:13 PM

I found one of the newspaper articles written about Donovan, the teen who travelled down with us yesterday. I was so looking forward to driving back up with them today and exchange our stories but I am still here. Our boys seem to hit it off quite well too and Donovan had read all the books that my son is currently reading. We are definitely going to be keeping in touch with each other and just became friends on facebook. She also asked permission (without names) to use our story as well. I told her sure, and honestly I'm not shy about using our real names when it comes to stuff like this.

http://www.bclocalnews.com/fraser_valley/theprogress/news/110849754.html

foofer

01-20-2011, 09:31 PM

Elisa,

I read your post at work today and struggled with weepiness for the rest of the day- wanted to tell someone but I know they would not have gotten it at all....

In the end, it will all be fine, especially with such great people- you and your son! And probably the rest of your family, as well! I'm so glad that you are at Shriner's and getting the medical attention for your kid that he so deserves. Wow, what a great boy- anyone that just worries that he will not have enough books available- I'm floored.

Take good care of yourself, and your forum friends are here for you always.

Sherie

01-20-2011, 09:59 PM

It is a lot to take in, the halo was so unexpected. I suspect they wait until after traction to determine the length of fusion. That would be great if it's only thoracic.

I was very sad to read the article about Donovan. It's not right to make these kids wait for so long. I've never heard of anyone here in the states waiting for surgery unless they're pursuing a highly sought after surgeon. Dr. Lenke apparently has a year or more waiting list, but there are many other surgeons available if you don't want to wait exclusively for him. That's a choice. I'm so glad for you guys there was an alternative.

Take care and hugs to you!

Elisa

01-21-2011, 08:11 AM

Yes, Sherie, the halo traction procedure was a complete and utter shock; never crossed my mind for a second that that would be the first step. I'll have to find out more about it but it means he'll have a surgery first to "loosen" up his spine so the traction can stretch it out b/c otherwise weights won't do a thing by themselves. It also means he'll be in the hospital for four weeks, two or more of those weeks confined to a wheelchair, walker or bed with this contraption bolted to his head before he even gets his fusion surgery. Not to mention all that extra expense coming out of Shriners pockets, me not working as well as being away from the rest of the family. Thanks BC, you !@#$%!! My kids were all born in BC, my husband and I have lived and worked there most of our lives and pay plenty of taxes and don't cause them trouble and this is how they repay us. Nice. I hate them more today than I did yesterday.

hdugger

01-21-2011, 12:38 PM

I consider what they did to be criminally negligent - they might just as well have stood around and watched as he bled out in a waiting room. It is completely unacceptable that they would force you to wait in such a situation, with no sense of urgency on their part whatsoever.

If you have the energy, you might make that case now while the media is focussed on their hospital. Clearly, they need some education about the priority of kids with rapidly progressing curves, and maybe your effort will protect some other child in the future.

I really believe that your son will come out of this unscathed. Because of their negligence, his surgical prep will be longer than that of other kids. But, once it's all over, like most of the kids I see on this forum, he'll go on with his life and put it all behind him. I think these kinds of things scar the parents much more than they scar the kids. Which is just the way we moms want it :)

Elisa

01-21-2011, 01:17 PM

Totally agree hdhugger and I am in no way going to sit back and be hush hush about this. As mentioned, there is already a woman Amy and her son Donovan that have been very active with the media and hospital authorities and is also going to use my/son story as well. We are keeping in touch for sure. This is all just so wrong in so many ways and it MUST change for the sake of the kids and their families.

On a more positive note, took a taxi to Janzten Beach Mall, got my son the book he wanted, actually he has all the books at home but didn't think we'd need to bring two b/c they're all about 1000 pages but he finished the one already and we need something for him to read on the bus back or he'll go out of his mind with boredom. I also picked up a pack of undies for myself b/c I ran out of clean clothes, lol.

Oh, I bought another bottle of Yellow Tail Shiraz at Target for $5.99!! Man, with the cheap prices of alcohol and no tax down here, I think they'd have to send me to rehab so it's probably a good thing our prices are so much higher up north.

Will be picked up at 2:00 pm to head out for the pulmonary test and the MRI and then back to the hotel to chill out and have dinner with another Canadian woman and her daughter who are also from Vancouver BC. Apparently she has written and published a smaller book about the horrors of BC Children's Hospital as she has spent many years dealing with them but has changed over to Shriner's this past few years. I'll find out more about what her horrors were when we meet later on.

leahdragonfly

01-21-2011, 09:37 PM

Hi Elisa,

Glad to hear you made it over to Jantzen Beach and had a little retail therapy.

I've been thinking of Elias and you this afternoon and I hope the MRI went ok. Wishing you a safe trip home. Please update when you can.

Gayle

Elisa

01-21-2011, 10:34 PM

It was a long day at the hospital, not Shriners but the regular hospital (sorry I can't remember the acronym b/c my brain is fried) as well as the other Children's hospital (can't remember that one either) where he had the breathing test done and the MRI. My goodness I had no idea an MRI of the spine was so involved and it took a good 2.5 hours of laying completely still. Fortunately I was allowed to give Elias an Ativan which really helped him relax otherwise it would have taken even longer. I got to sit right next to the tech and saw all the pics on the computer as he was taking them and it was very very cool.

My goodness there are so many buildings up on that hill and it was a maze and I must have gotten lost fourteen times. Crazy busy place. I am so glad that MRI is over and very glad to have even gotten one for my son on such short notice b/c obviously they can only take so many patients in a day b/c they take so long.

We did have time between appointments to wander around so we did take the tram down to the water and back up and that was very neat.

Everyone drives SO fast in this city... even the elderly Shriners! I told the taxi driver who brought us back to the hotel to slow down b/c my US medical insurance ran out yesterday and with my luck we'll get into an accident and end up back up on that hill with all those hospitals, lol.

Shriners hospital was so relaxing and laid back compared to the others we were at today and I'm thinking that it will be more to my son's liking (and mine) that he sit around with a halo on his head reading a book, heh.

Back to Canada tomorrow! :D

hdugger

01-21-2011, 11:29 PM

Everyone drives SO fast in this city... even the elderly Shriners!

In the US, Portland is notorious for having slow and courteous drivers. So, just imagine how you'd feel in Boston :)

Glad he made it through all of the testing, and wishing you a good, quiet trip back home.

Elisa

01-21-2011, 11:48 PM

Oh my, I think I'd have heart failure in Boston if that's the case. Really though, with all the fast driving, I never saw a single accident or even heard sirens for that matter. Unlike Campbell River where people seem to bump into each other quite often and the sirens are blasting. I don't know, maybe we're distracted by all the elk crossing the road, haha!

I am wired and won't be able to settle down to sleep for a while yet but Elias is exhausted and just now put down his book to go to sleep. Poor guy had a headache before he had his MRI and I told him I really didn't want to give him anything else b/c I was already planning to give him the Ativan and he spend over two hours in a tube that he said sounded like "construction". He really is an easygoing guy which I am truly thankful for.

I wish I could bring a bunch of this $5.99 wine home with me but that's not possible so I'm enjoying my last little bit here.

Am really missing my kitties and chinchillas and my husband said the "Grey Boys" were really bad last night and he had a heck of a time putting them back b/c as soon as he'd get one back, the other one would run out and played tag team with him. They are very cheeky chinchillas and are totally taking advantage of him, hehe.

leahdragonfly

01-22-2011, 09:24 AM

Safe home, Elisa. I am sure those cheeky chinchillas will be happy to see you!

Thinking of you and Elias,

Gayle

hdugger

01-22-2011, 09:49 AM

I've never heard of anyone here in the states waiting for surgery unless they're pursuing a highly sought after surgeon.

Brief digression :)

The equivalent in the US is people who don't have health insurance, like Pilar. Without it, she couldn't have surgery, no matter how bad her curve was.

JenniferG

01-22-2011, 03:25 PM

Just had a brief catch up on this thread and want to say how glad I am that at last your son is getting the help he needs. It all sounds so thorough. You are in good hands. Enjoy that last wine, you deserve it.

Elisa

01-22-2011, 04:32 PM

We're back in Vancouver! Really nice ride back and spent the whole time chatting with the driver's wife and him and they are super nice people and the drive seemed to go so quickly. Will take an early ferry across tomorrow to the Van Isle and then a two hour drive up to Campbell River. I am really looking forward to seeing all my critters but I'm sure my chinchilla room will resemble one huge cage and I'll have a lot of cleaning and fixing up to do.

Shriners BC/Yukon have a brand new bus and they will be heading back down to Portland in February several times to transport BC kids so perhaps we'll get an appointment with Dr. K at that time? I do think it will be fairly soon as my son is on the "urgent" list.

Oh, that hag that we've been talking to at BC Children's (secretary) who told us that if we choose to go the Shriners route then "there will be no followups with BC" is full of crap. I've recently learned that the Shriners have a four year contract with the government to transport BC kids to Portland and have been given a big grant and a new bus to do so and there is a wonderful facility in Vancouver called Sunnydale (I believe) that children that need follow up care go to. I am going to report that stupid woman.

Everything is working out great so far and I am so glad that we contacted Shriners and am dealing with Portland instead of Vancouver. I am sad that my son did not get treatment earlier on b/c now his situation is much more complicated and what could have been a straightforward procedure so to speak has turned into a much more difficult situation. Oh well, it is what it is and we will move ahead from where we are.

Pooka1

01-22-2011, 05:23 PM

Hey Spiny Mouse,

Glad you are heading home. It will be good to be home.

This is fixable.

Elisa

01-23-2011, 04:06 PM

Been home for a few hours now and had to get the family all caught up with all the details and visit my kitties. Gotta call my mom next. Haven't been down to see the chins yet b/c it is their sleepy time and I just can't go in the room and wake them all up and then not let them out so I'll be heading down there shortly. I am feeling very very fatigued as of right now and plan on making it an early night.

Man, I could hang out with those Shriners men and wives all day; they're so nice, interesting and very fun. Instead of taking the normal route through Campbell River the driver took a different route so he could see the hotel that I worked at who knows, maybe I can convince them to stay there in the future instead of our competition. I can get them an awesome deal if they do, lol.

Hoping I get a call from Portland this week giving us a date to pack up and head back down there for the actual procedures.

Oh, they were quite upset when I told them that the snit at BC Children's told us that if we went the Shriners route that there would be now followups with BC considering the government has a four-year contract with them to transport kids down south. He asked for her name and the number and I gladly gave it to today's driver and he will be passing the info along to the necessary people. Either that woman is totally misinformed or there is some sort of animosity happening with the staff at BC. I don't know but I wouldn't be surprised at all.

mariaf

01-24-2011, 07:44 AM

Man, I could hang out with those Shriners men and wives all day; they're so nice, interesting and very fun.

The first time I met a Shriners was about 7 years ago when my son first began treatment at the Phildelphia Shriners Hospital. Since then I have been blessed to have made many friends among my local Shriners and my family has attended many events including the Children's Holiday party this past December which I helped plan. I was so impressed with them that I became as active as I could in trying to help them with their mission. I have seen firsthand over the years that all these men really want to do in life is to continue to help children.

I could not agree more with your statement above. These folks are what my dad used to call 'the salt of the earth', which loosely translated means 'the best or noblest of their kind'.

Shriners are truly the salt of the earth in my book.

Elisa

01-24-2011, 09:45 AM

^^ All very true Maria.

Elisa

02-04-2011, 07:23 PM

I bet you guys thought I dropped off the planet. I haven't been online for about five days b/c we're having a bit of family crisis with my dad, he has Alzheimer's and was getting settled in his new place when he started throwing all his furniture around and was threatening people. I've also been busy training a 'replacement' for me (which of course isn't possible, ha) and she is do so amazing that if she quits I'll cry.

Okay, all updates.

MRI says no abnormalities which means his spinal cord is normal, it isn't tethered or short or... which was a HUGE relief. He just has a bad case of scoliosis which is of course we all knew.

He has a first surgery date of March 22nd (my birthday) and a second surgery date of April 19th.

I didn't bring my cell phone with me in my pocket at work b/c mostly I forgot but wasn't worried b/c at least the MRI came back good. Walked in the front door and my husband looked and said something about two surgery dates so of course I called back and confirmed them.

Actually for a tiny moment I thought he was going to say that BC Children's Hospital called for a first appointment and I was ready for a fit of laughter but it wasn't them who called.

I have so much catching up to do and preparing for THE DATE. It's so good to have a date to plan for.

hdugger

02-04-2011, 07:40 PM

JenniferG

02-04-2011, 07:42 PM

I've missed some of this thread, but glad to hear you're making progress Elisa.

Elisa

02-04-2011, 07:50 PM

It's been a battle Jennifer and I am glad that we've pinned down a date but I also feel so bad for all those who are just starting out.

Shriners came through for me, first class, and I will always be indebted to them somehow and I will support them. They are good. The best feeling ever is to surround yourselves with good people.

Elisa

02-04-2011, 08:21 PM

Good news on the MRI and the dates. So, he'd be here between those two dates, and for some time after the second surgery?

Sorry about the Alzheimers. We went through that with my husband's mom. Very tough thing to watch your parents go through.

Yes, he'll be there between surgeries. The first one is to "loosen" up his spine and to put a halo on and the second surgery is to put instrumentation in. His spine is/was 110 degrees, he's collapsing. He should have been dealt with earlier. That said, I'm looking forward to being in Portland again.

hdugger

02-04-2011, 08:46 PM

Will they put you up closer to the hospital? Or is the hotel you used last time the same one they use for longer stays?

Elisa

02-04-2011, 10:24 PM

Will they put you up closer to the hospital? Or is the hotel you used last time the same one they use for longer stays?
I'm not sure where I'll be but I'll let you know. I quite like the place I was before but it is a bit far away from the hospital but the shuttle was good even though the elderly boys' driving scared me, lol. I'm sure it will work out, it always does.

jrnyc

02-05-2011, 03:45 AM

great news, Elisa!

i think 2011 is going to be your son's year for good things!

jess

mariaf

02-05-2011, 05:38 AM

Hi Elisa,

I've been wondering how you've been doing (and also if you were able to connect with that other mom about the halo traction).

My dad, who will be 80 in March (I am also a March birthday), has Alzheimers as well. I guess a lot of us are about the same age (I know Sharon and I had this conversation about age), having kids or teens with scoliosis, as well as elderly parents. Not an easy thing to watch.

I'm so glad you have dates now and the plans to help your son can move forward. I know that at the Shriners Hospital in Philadelphia, in addition to nearby hotels and Ronald McDonald Houses, they also have accommodations right in the hospital, on an upper floor, for parents. They are like hotel rooms where one can sleep, shower, etc. They generally aren't used long term, but rather for example when a child is in ICU. Since the parent cannot stay bedside in ICU, they put them upstairs for a night or two.

At the Shriners Hospital in Philly, there is a woman (Susan Schailey) who is in charge of Social Services and handles things like accommodations, transportation, etc. I'm sure there is someone in Portland who is assigned these same tasks and who could hopefully get you accommodations closer to the hospital.

Best of luck and thanks for the update!