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Thread: So glad I found you guys!

  1. #16
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    Jan 2008
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    Oregon
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    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
    Last edited by leahdragonfly; 11-17-2010 at 09:57 AM.
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  2. #17
    Join Date
    Nov 2010
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    14

    Unhappy My apologies

    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...

  3. #18
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    Nov 2010
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    British Columbia
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    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.

  4. #19
    Join Date
    Nov 2010
    Posts
    14

    Glad the visit went well!

    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!

  5. #20
    Join Date
    Jan 2008
    Location
    NC
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    Quote Originally Posted by Angele1 View Post
    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.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  6. #21
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    Nov 2010
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    British Columbia
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    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.

  7. #22
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    Nov 2010
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    British Columbia
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    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.

  8. #23
    Join Date
    Oct 2009
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    89

    Very Good Mother

    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

  9. #24
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    Nov 2010
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    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.

    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.

  10. #25
    Join Date
    Nov 2010
    Posts
    14

    Thumbs up Agreed...You are a great mother!

    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!!!

  11. #26
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    British Columbia
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    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. :/

  12. #27
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    British Columbia
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    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.

  13. #28
    Join Date
    Sep 2003
    Location
    Northern California
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    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
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  14. #29
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    Nov 2010
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    British Columbia
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    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.

  15. #30
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    Second the motion to change "Elisa" to "Spiny Mouse."
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

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