New with lots of questions

[momof5]

Hi Everyone! I have been getting lots of information from this forum.. So, now I have some questions for you all.

First a little background: My 15 1/2 yo son was diagnosed with Adolescent Idiopathic in July by our chiropractor. He had grown about 9 inches in 2 years! Because we prefer alternative treatments when possible, we did physical therapy for 4 months with no noticable result. Last week we took him to Shriner's Hospital in Spokane, WA to see Dr. Ferguson. My son, Graham, has 3 curves - Upper Thoracic T1-T7 45*, Lower Thoracic T7-T12 64*, Lumbar T12-L4 45*. They are recommending spine fusion surgery to be done sometime within the next year. They also did a bone-growth analysis and anticipate that he will grow more ( he is 5'10").

So, I guess I will start with the most obvious questions:
1. Is this recommendation what most of you have heard from other doctors for this degree of curve? They told us that anything over 55* will only progress and that bracing won't help.

2. Has anyone had any success with alternatives to surgery at this level?

3. How do you decide to have the surgery? My son is extremely healthy and active. He has had no symptoms at all, no pain, etc. We only noticed the curve because he was riding his bike in front of my dh and leaning over the handlebars. He is a junior black belt in Karate, training for his Sr. black belt in May. How do you decide to take a seemingly healthy, strong person and debilitate them for 1-2 years hoping to make the rest of their life better? Maybe that sounds a little extreme. It just seems that if he were sick or in pain it would be a much easier decision. I know that other parents will understand this questions.

So, that is enough to start with. You all seem to be a very supportive group and I am hoping to gain some knowledge and some peace from your responses.

Thanks so much!
Katy

[LindaRacine]

Hi Katy...

Unfortunately, the great website that had a risk of progression chart has been taken down due to lack of funding. :-( In general, however, any curve over 50 degrees has a huge risk of progression, especially in skeletally immature individuals. I'm sorry that your son's scoliosis wasn't dx'd earlier, when a brace has a reasonable chance of stopping the progression. At this point, I personally don't think you really have any choice other than surgery.

Regards,
Linda

[marmyte]

hi katy

i think the main reasons for having surgery NOW (or within the next few years) are as follows:
1 - recovery in teenagers/those in their early 20s is quick. i didn't believe my surgeon when he told me how quickly i'd feel better (although i'm 18, i'm not that fit) but he was right, i was feeling great after 3 weeks
2 - it gets it out of the way and you can get on with your life
3 - generally speaking (as in barring other complications or abnormalities) the smaller the curve, the easier the operation and the better the correction which leads to...
4 - you acheive a better result when younger (again, generally speaking)
5 - most people live with their parents and can be assured a good standard of post-op care and minimal disruption to their lives (rather than interrupting higher education studies, or a career or starting a family etc)

yes, it's worth considering your current health status, but you also have to think long term: how quickly is he likely to progress, how much would you compromise by waiting?

i was told that i would lose nothing by waiting a couple of years (i was offered surgery at 16 but i wanted to wait, psychologically, for me, it paid off, i went into surgery a much better person than i would've been 2 years before). i wasn't in pain at 15, but i was a year later, and i certainly was just before i had surgery. it's something to keep in mind, though many people stay pain free until they are 40 or 50.

this might be hard but it's what i've seen - people with curves of your son's degrees don't get better through non-invasive methods. the sad nature of the scoliosis beast is that once it gets to a certain point, the best you can hope for is stability, and the worst case scenario is that it progresses.

i think at his age part of the decision has to come from your son. i know he's a minor and you're responsible for him, but as a teen, it was always important to me to be involved. i hated my doctor talking to my parents and not me... but that's my issue not yours

i think you need to speak to his doctor, ask for a really honest opinion on how fast he thinks progression might be, and ask your son what he wants, helping him to understand the full implications.

i'm 6 months post op this weekend: i'm cleared to do whatever i like. i work in a coffee house and am hoping to start studying at university later this year. my doctor cleared me to get back on a horse at 7 weeks post op (my parents made me wait another 2 weeks) but i started driving and swimming again at 7 weeks... i run around all day and go out with my friends at night. i hope that reassures you a bit, if you have any other questions feel free to private message me

becky

[ScolioGirl]

I agree with Linda...at this point, it's about the only way. I've never heard of anything else helping.

To answer your questions -

1. Is this recommendation what most of you have heard from other doctors for this degree of curve? They told us that anything over 55* will only progress and that bracing won't help. Most doctors say anything 50* and up is surgery level, others say 55* and up, so yes, this is the norm.

2. Has anyone had any success with alternatives to surgery at this level? Not that I know of.

3. How do you decide to have the surgery? My son is extremely healthy and active. He has had no symptoms at all, no pain, etc. We only noticed the curve because he was riding his bike in front of my dh and leaning over the handlebars. He is a junior black belt in Karate, training for his Sr. black belt in May. How do you decide to take a seemingly healthy, strong person and debilitate them for 1-2 years hoping to make the rest of their life better? Maybe that sounds a little extreme. It just seems that if he were sick or in pain it would be a much easier decision. I know that other parents will understand this questions.

Well...really, it has the potential to cause a lot of problems later in life. The point is that he /is/ young, he /is/ healthy, so your son will be able to get through this much more easily than he would at, say, 40 when he did start feeling symptoms. After a certain age, most doctors don't even want to do the surgery, so this is the prime opprotunity.

Secondly, you're most definitely not debilitating for 1-2 years. In adolescents, the spine will fuse completely within 4-6 months, and almost all activities are resumed at the 6 month mark, with the exception of football and hockey (got to hold off on those for a year). Personally, at about 3 weeks post op I was feeling more like myself, and now at 3 months post op, I feel absolutely 100% normal.

I know you don't want your son to have to go through /any/ type of surgery, especially spinal, but it's really not as bad as you'd think it would be.

[Mary Lou]

Linda,

Maybe this will help. I got this information from Dave Wolpert's first book and his source is listed as: Scoliosis Research Society, 1982.

Probabilities of progression in adolescent idiopathic scoliosis, prior to skeletal maturity.

Cobb angle at initial detection - <19* @ age 16 0% 20-29* @ age 16 10%
30-59* @ age 16 30% and >60* @ age 16, 70%

Cobb angle at initial detection - <19* @ age 13-15 10% 20-29* @ age 13-15 40% 30-59* @ age 13-15 70% and > 60* @ age 13-15 90%

Mary Lou

[nikyergen]

Katy,
My daughter was diagnosed with an 88 degree curve at the age of 15. Her only option was surgery. However, we tried for 1 1/2 years using alternative therapy (chiropractor) to no avail. It releaved some muscle tension, but thats it. We spent 1 1/2 years doing chiropractor, when a brace is what she really needed and may not of needed surgery in the end. Her back caused her a lot of physical pain, especially during basketball season. However, she would tell you today, that surgery on her back was the best thing that ever happened to her.

My daughter is an athlete and it was tough to decide when to have surgery. Going from very active to not being able to do anything. Its pretty tough on them and they drive you nuts while they are recovering. They want to do stuff, but aren't allowed too. However, I think because they are young, they recover better than if it was you or I.

On height, Crystal grew 2 inches from having her surgery done.

You are concerned about debilitating an active kid. Don't be fooled. Crystal was back to school full time at three weeks post-op, when to her Jr/Sr prom at 4 weeks post-op. Back to showing her sheep at 12 weeks post op, and had a new job at McDonalds 16 weeks post op. Did it debilitate her? Absolutely not.

Because of your sons age, and he still has a huge growth spurt left to do, his curve will more than likely get way worse.

I was glad to see you use Shriners-Spokane. We use Shriners-Portland and do a five hour drive one way for appointments. If you end up with surgery, they are awesome. There only concern is for your child. They want to keep them as comfortable as possible and feel these kids shouldn't be in a lot of pain with all the medications they have to help them along.

Surgery is a very scarey thing as a parent. I used to cry by the hours. I was so thankful for the wonderful people on these forums to talk to about what scared me. And, when someone says they'll see you on the other side, that is truly what it is. The other side of surgery and on the road to recovery.

Keep asking questions and get comfortable with your decision. My husband and I let Crystal make her own decision on her back as she is the one that has to live with it the rest of her life. I feel her choice in having surgery was the correct decision.

'til later,
Nikki

[lnetzer]

I have found many informative items on this site and was grateful to have this info to go to our first appt today with a pediatric ortho specialist.

What we found out today was that my 13 year old son has 2 curves, the upper being 55 degrees and the lower being 75 degrees. Has anyone else had it this? The doctor said the only option is surgery, which she'd like to do in the early summer so he doesn't miss school, but nothing has been finalized. He has to have an MRI yet as well, and we are taking it from there. She ordered that because she is concerned about spinal cord damage....not sure I understand that as isn't that what scoli is? I'm the type of person who has to know everything that is going on, and any input is appreciated. The appt was almost 2 hours long today due to x-rays being taken, and we will be sitting down to talk at length once the MRI results are in, but I'd like to talk to someone before then that's been thru this.

Thank you so much.

Laurie

[momof5]

Thanks so much for all of your replies! I really appreciate all of you willing to share your experiences. I am going to share them with my son. It really helps to hear from those of you who are so active soon after surgery. That is one of my big concersn (other than the surgery itself of course).

We were extremely pleased with Shriners in Spokane. It is only 60 miles from our home and of course there is no charge for anything they do - what a blessing! Nikki, I'm glad to hear you had a good experience with Shriner's as well. They really seem to care about kids!

We go for an MRI tomorrow because they found a slight variation in Graham's muscle response from one side to the other and want to rule out anything neurological. Is this normal from your experiences? They said it will probably not show anything unusual, but they don't want to do surgery without knowing if they need to watch for something else.

I'm sure I will have lots of other questions. I am really overwhelmed by the willingness of you all to share your experiences. It has already helped me tremendously.

One other question that comes to mind is about siblings - I have 4 girls, ages 13, 10, 6 and 3. How did your other children (or brothers/sisters) handle the surgery and recovery? Did it scare them? Did you let them go to the hospital? I am thinking we could tour the hospital as a family before the surgery so they will see where he will be for a week. Does that sound like a good idea? I know the older girls will want to visit him in the hospital and play Nintendo :0)

Thanks again! You are all wonderful!

Katy

[nikyergen]

Katy, we have two other daughters. How did they handle surgery? Well, the middle daughter stayed home at a friends house for a couple of days, until her dad came back after Crystal was out of surgery. So, she didn't see Crystal until she came home from the hospital. Our youngest daughter was just fine with every thing. Nothing bothered her and she was very anxious to see her sister. The younger two were 14 & 12 at the time of Crystal's surgery. The biggest problem was jealousy and it still is a problem. Crystal hasn't been able to do chores since her surgery, so the girls get pretty tired of it and refer to Crystal as "DADDYS LITTLE PRINCESS" because she can't do chores yet. So, there are issues, but we just have had to find ways to resolve the problems. We don't expect the two girls to fold clothes, dishes, etc., as this is something Crystal can do.

I highly recommend you tour the hospital. We did. The only ones it may bother to see their brother are your younger two girls. I'd wait for a couple of days for them to see him. After surgery his face will be very puffy and he will have IV's and possibly other tubes. They are usually out within a couple of days and the swelling is pretty well down.

'til later,
Nikki

[flowerpower]

Well, with all the good advice given I don't know that there is anything I can add. As far as deciding if and when to do surgery, I didn't want to believe that surgery would be the only alternative, but after researching & talking to others I realized that nothing else was going to permanently correct the problem. Once the rotation (in addition to the curve) of the spine became very apparent it really started to twist the rib cage out of alignment. This was I think starting to cause "body issues (self-consciousness) and certainly would cause other health issues if not taken care of. My son is very healthy and active and had no discomfort except last 6 months had started getting hip pain and pulled back and thigh muscles (left side). He is doing well at 3 weeks post-op, the pain from surgery is subsiding rather quickly, I actually scolded him a few minutes ago for lifting an almost full gallon of milk. (he is still restricted to lifting nothing over 2 lbs.) Overall, he is happy he had the surgery and I'm sure he would be willing to talk to either son of Momof5 or Inetzer. We did a hospital tour, and I'm glad we did. The surgical coordinator not only showed us the O.R., recovery room, etc. she also showed Joe the various tubes, i.v's he would be hooked up to after surgery and let him know what each and every one was for. Also saw a model of the spine and the instrumentation that would be used. It really helped us prepare mentally.

To answer a question posed by Inezter, scoliosis is not necessarily caused by a damaged spinal cord. The MRI will show if there is a tumor or cyst, etc. compromising the spinal cord and if there is, then that would need to be treated first (a different treatment than fusing the spine). Running short on time, got to go, will check in later. Hope this was somewhat helpful.

REnee

[momof5]

Thanks for the continued input. I guess I am pretty much convinced that surgery will be the best thing. I just spoke with a friend of mine who had surgery in 1977 for her scoliosis and said it was the best thing she ever did.

Nikki, thanks for sharing about your other kids. I can already predict some jealousy, especially from my 10yo as she thinks she is always mistreated anyway - LOL - I call her "cinderella". She says she does all the work around here (which is so far from the truth it should be comical). I think it's a good idea to be prepared for it anyway.

Renee, thanks for sharing how your son is doing. You must be relieved to be 3 weeks post op! It's also nice to hear from someone else with a son having surgery. It is so much more common in girls. They said that Graham also has the rotation, so I think it is only because he is extremely strong from Karate that he has had no symptoms. That is basically what the doctor said also. I imagine it is only a matter of time, though, before he starts to have pain. I will ask Graham if he is interested in talking with your son.

Thanks again for all your responses. I am happy to read them all as each one reassures me a little more. You are all a blessing!

Katy

[lnetzer]

REnee:

Thank you for the info. I'm sure my son would enjoy talking to your son once he gets over the shock of knowing he has to go thru surgery. I've tried to share some of the different sites with him, but he just isn't ready yet. I don't want to push him, but will let him know there are others who have been there that are willing to share with him.

Thanks again!!

Laurie
lnetzer

[Mary Lou]

Inetzer,

Don't worry if your son isn't ready to talk to others yet or go to forums like this. My daughter was diagnosed about 2 1/2 years ago and had surgery a year ago and it wasn't until about 2-3 months ago that she would even look at SpineKids website. However, I always made it a point to tell her what I learned on-line from other parents/kids and I think it helped. Facing surgery for a teenager is hard.

Before my daughter's surgery, her doctor ordered an MRI and CT scan. The reason for her tests was because of her size. Jamie is a very small young lady and her doctor wanted to check the size of her pedicles to see if he could use pedicle screws in her surgery. It helped him plan and prepare for her surgery because he was unable to use pedicle screws during her surgery. I'm glad we knew that going in.

Mary Lou

[flowerpower]

That was the same way with my son, Mary Lou. He only briefly checked out SpineKids and would walk out of the room if he saw me on the forum. I realized that boys/guys/dudes,lol don't really talk about how they feel about things, but if the boys have any questions Joe could answer them from the "boy" point of view.

Renee

[momof5]

Hi again everyone!

We just got home from Graham's MRI and had a message from the MRI Place (I don't know the proper name) that the radiologist had looked at the MRI and wanted to do a CT scan.

Now of course it is Friday evening so by the time I get off the phone with the scheduling department it is too late to call the Dr. at Shriners to find out what the CT scan is for.

Is this something I should be worried about? Of course my first reaction is "they found a tumor". Now I know this is probably overreacting. I see that a couple of you said your kids had MRI's and Mary Lou said that her daughter had both. They lady in the scheduling dept just said that there was something they wanted to get a better look at.

Anyone have any words of wisdom for me? I am probably mostly looking for some comfort to ease my fears that they found something serious.

Thank you all for being there.
Katy

[Alison]

Katy,

Try not to worry until you get the results of the CT Scan back......I know it's hard for Mom's not to worry, but try not too. There may have been an area that's a bit fuzzy/not come out so good that they want to get a closer look at.

Doctors like to be very thorough (sp) if they aren't sure of something.....or it looks a bit funny, they like to take a closer look. It means they've 'checked out' everything (and haven't missed something) and before they did something (such as surgery) they'd know exactly what was there and what they're 'dealing with'

Try not to worry

ALison

[momof5]

Thanks Alison,

I have calmed down a little. My husband is at work so I haven't even been able to talk to him about it. Of course I don't want all of the kids to know that I am worried (especially Graham). I will keep you all posted if anything unusual comes of it.

Thanks again!
Katy

[lnetzer]

We have an appt. for my son's MRI for Saturday afternoon. They said it takes 135 minutes. Is this normal? He is getting anxious and they asked me if he was claustrophic. Can they give kids anything to help with that? I've been reading so many posts from everyone and know we are in for a long time of more anxiety/worries, but it really helps to see how many have been thru it and come out so much better. I'm just a huge worrier and this is our only child. I think I may need sedation :eek:

Laurie
mother of 13-yr-old son with 55 upper and 75 degree lower curves

[HIMOM]

Inetzer,

My daughter had her MRI and it lasted 70 minutes. I went with her into the MRI room. There is no reason for the mother not to and I insisted. I don't know if it helped her. It is very noisy and has this bong, bong noise. Remember not to wear anything metal, no glasses, no prosthesis, etc.
The technician would tell her to stay still for 12 minutes then when to relax. This allowed her time to prepare.

Good luck with the MRI.

I must admit we, the parents, have needed the sedatives and reassurance more than my daughter.
Hawaii MOM

[lnetzer]

I'll admit, that was my first question to the person making the appt. after she told me how long it was. They said nobody is allowed in the room, but they would be in constant contact with my son and that he could have a technician in the room if he wanted. Like that was going to calm him! He is apprehensive enough about all of the new/strange things that are going on. I am still going to ask that day if it's possible to have me go with him. I've been in 2 other times with my husband for Heaven sakes, and yet they won't let me go with my son? Granted this was our local hospital and my son is going to one an hour away. I guess I will have to put on my pushy mom hat!! :p

Laurie

[Alison]

Laurie

They should be able to give your son a light sedative. If they are not suggesting one....I'd be asking for one for him.

I am only speaking from personal rememberance here, but I remember what it was like in that MRI machine as a 13 year old. I was not sedated.....and it was the longest 2 and a half hours of my life. It's hard to stay still at 13....and you do get wriggly....even though you try not to.I had big problems trying to stay still (so they had to re do some of them).....and by the end I was quite agitated and upset. I came out of that machine, straight onto my Dad's lap and cried.

They often give light sedatives to younger children for MRI's.....I'd definetly find out if they can give your son one. There's no reason I can see why he shouldnt be able to have one.

135 minutes is normal, for the MRI your son is having. What I mean by this is that they are doing a full spine MRI (may be doing almost a full body one)....this takes quite a bit of time to do.


Maybe try and organise something 'fun' to do with your son after the MRI. Something he really enjoys doing, whether it be going to a movie, going Ice Skating, getting some Ice-Cream. Will give him something to look forward to and focus his mind on.

Good luck

Alison

[nicoles mom]

Laurie
We did my nicoles mri test on two diff days. The tech felt it was too long for a 12 year old to lay there. The place we went to was great with her she was able to bring a cd to listern to during the test. The test took 1 1/2 hrs each day this was for the whole spine.
Theresa

[momof5]

Laurie,

Sounds like we are at the same stage as you. We just had Graham's MRI on Friday and it took a little over 2 hours. He is 15 1/2 and said he got hot and bored, but was able to lay still enough I guess. They did say I could go in the room but would have to wear earplugs as it is noisy. They also mentioned a mild sedative, but Graham didn't think he would need it.

Let us know how it goes, Graham has his CT scan today. At least it's not as long as the MRI, but I am very anxious anyway.

Katy

[flowerpower]

When my son had his MRI last year, I believe it lasted about 45 min. and I think it was open on both ends (kind of aleviated the claustrophobic feeling) A mild sedative might be a good idea if the child needs to lay there for a length of time.

Katy, I hope all goes well (uneventful) with the CT scan. Keep us posted.

Hawaii Mom - just wondering if you ever had a consult with Dr. Newton in San Diego??

Renee

[momof5]

Well, we had Graham's CT Scan, way easier than the MRI!! They gave us a copy of the MRI report that said he appears to have bilateral spondylolysis of L5. Does this sound familiar to anyone?

Of course it is after 5pm again, so I cannot call Shriner's until tomorrow. At least it doesn't appear to be anything like a tumor, just something else in the spine. From the little that I can understand about it this could be the cause of his scoliosis, or maybe vice-versa? I'd love to hear if any of you have had anything similar.

Katy

[LindaRacine]

Hi Katy...

You can see a picture of what spondylolysis looks like here:

http://www.spinecenteronline.com/ana_injury.html

And, I believe that bilateral means that it's the same on both the left and right sides (that is, it's slipping evenly).

--Linda

[PNUTTRO]

I had surgery at 16 and was out of school for 10 weeks (1986). I guess recovery is faster these days--according to these posts.

Anyway, for years my Mom would accompany to my doctor's appointments and when I started having pain again, she started asking the doctors if she did the right thing by having me go through the surgery for scoliosis. The doctors always said that it was the only option.

I never understood why she always asked the same question until I realized that she was feeling guilty for "putting me through all the pain and suffering". Now, I finally understand her worries and concerns and I told her that my life would have turned out very differently if I had not had surgery. I am glad that she made the decision to have surgery. And I am grateful for all of her support all these years.

[HIMOM]

Flower power,

Renee, We did meet with Dr. Newton. His only suggestion was to take the brace off for one week and see what the curve is at that time. Our next appointment at Shriner is in April. We will contact the surgeon and work out the time frame for the brace to be off before the next set of x-rays. Dr. Newton did not question the diagnosis just the severity of the curve.

Thanks for asking.

I hope your son is doing well after surgery in Dec. 2005. Is it better for him in terms of pain and psychologically.

Hawaii MOM

[Mary Lou]

Katy,

My daughter has a Spondylolysis in her lower lumbar region. We never knew about it until they started x-raying her for Scoliosis. She has never had any pain or problem from it. Her doctor fused her from T3-L2 and I asked him before surgery why he wasn't going to fuse lower to avoid future problems with the Spond. and he said he likes to preserve as much mobility/flexibility as possible. It's been a little over a year since surgery and so far so good-no problems. Any other questions, feel free to ask.

Mary Lou

[momof5]

Thanks Mary Lou,

That was a question I was going to ask the Dr. Would they fuse the lower spine because of the spond. ? They were planning to do some bending x-rays on the our next visit Feb 1st to determine whether they should do an anterior fusion or not, so I think we will just wait and find out everything at once on the 1st. I keep thinking about calling, but I have decided to just wait and give the Dr. time to study everything so he can give us a thorough evaluation. I figure if they found anything really serious with the CT they would let us know.

Linda, thanks for the link to the picture. Now I'm wondering if this happened a long time ago and actually triggered the scoliosis? One more question for the Dr. I guess....

Katy

[lnetzer]

It gives me great reassurance from everyone to know that we're not alone in all of this. The hospital we're going to for the MRI is an hour away, so probably need to have it done all at once. You can be sure I will call there first thing tomorrow morning and let them know that we may need a sedative and that I am going in with him. I went in twice when my husband had his done at our local hospital, and they just gave me ear plugs. Wish me luck!

Laurie

[momof5]

Good Luck Laurie!

Let us know how it goes. I agree that this group is such a great comfort. It is so nice to hear from others who have been where we are now.

Katy

[lnetzer]

Hello to everyone and thank you again for all of your support!
I ended up calling the doctor's office the day before we went and they said that the doctor had changed the orders and it would take only one hour to do the MRI. (wish they'd have told me!!) Anyhow, Josh was very anxious and they would not let anyone except a tech in with him (the hospital we were at had it's own waiting area just off where the machine was, so I was still within a few feet of him, but still!! How is a tech going to give him comfort?!). He had a mild anxiety attack and they had to stop and take him out once, but he made it through. Now we have to go back and meet with the orthopedic specialist on Friday to discuss the results and they're going to take more x-rays to measure bone growth or something like that? :confused: They wouldn't tell me anything on the phone, even after I was persistant, so I am praying all goes well.

I will let everyone know how it goes Friday.....

Laurie

[momof5]

Laurie,

Glad you survived the MRI. I'm jealous because ours was over 2 hours! They did an x-ray of Graham's hand to measure bone growth. They used it to tell if he was finished growing. He's not! In fact this is a question I had for the Dr. next time - is it better to do the surgery before or after he has another growth spurt? Anyone know?

We are still anxiously waiting for our appt. on Feb 1st to see what we will do and when.

Let us know what you learn on Friday.

Katy

[lnetzer]

Hi everyone! We got the results today and there were no abnormalities or anything else wrong found by the MRI. What a relief! They did the x-rays today to measure bone growth and to see how flexible he is. We were told he still has some growing to do (and at age 13 his bones are age 14?), but right now is the optimum time to do the surgery because they can do better correction while he is this flexible. She said that she was surprised at how much flexibility he does have. The doctor said he would need to be fused from T3 to L4, is this common? She recommended a second opinion, although with the degree of Josh's curves there really is no other option besides surgery (75 and 55 degrees). Apparently the curve happened during a growth spurt in the past year and it went unnoticed because he isn't unbalanced at all. The upper and lower curves kind of balanced each other out. We set up a surgery date of April 10, and we need to have Josh donate 3 pints of blood up to that point. In the meantime we will make the appt for the 2nd opinion and this doctor will supply us with all the x-ray films, etc. She sat and talked with us for 90 minutes this afternoon, and went over every single detail with us. I was just so impressed because she looked at our son when she was addressing the surgical issues, whereas most doctors always talk to the parents, even though it involves our son. I am very happy with everything right now, albeit still nervous.....we'll see how I am come that first week of April :eek:

Laurie

[Sir Jeffrey]

Laurie,

It is always great news to hear that you are only dealing with Scoliosis. I'm glad you are getting a second opinion even though surgery is the only option. You just might find that you or your son like the 2nd surgeon better or maybe that doctor is more expereienced....but if you are happy with the 1st surgeon, stay with her, she sounds wonderful. Jamie's surgeon is the same way...he talks to her and not about her.

As for the week before surgery, well, you've read enough post to give you a good idea of what to expect. Please know that we are all here for you through this entire journey.

Mary Lou

[momof5]

Laurie,

Great news about the MRI. So glad that you liked the Dr. That is so important. Except for the age it sounds like Graham and Josh are the same (Graham is 15). He too had a growth spurt which caused the curve to show up, but is so balanced that you couldn't tell. His shoulders are almost even and his hips as well. He has 3 curves and the top and bottom curve are both 45* ( the middle is 64*) so they offset each other.

Anyway, I am so glad all is goin well. Did Josh like the Dr? How is he handling everything? Keep us posted.

Katy

[lnetzer]

Mary Lou:

I'm glad you got a great surgeon too, one that talks to your child. Besides the couple issues I had about blood donation (she recommends self blood donation and we need 1 pint every 3 weeks for 3 pints total stored) and bone grafting (she doesn't do it, she uses donated and does something to it with your blood to make it like your own?), that was really the clincher for me. Has your daughter had surgery yet or a surgery date? It really has helped me so much to know we're not alone in this journey, and to be able to read what everyone has to say.

Katy:

It really was a relief about the MRI. Is your doctor close to where you live? I do feel comfortable with our surgeon, she really put us at ease, as far as going into her educational/training background. She said she only takes on about 12 surgeries a year. What do they do for 3 curves, is the treatment the same? Josh had a couple questions for her, and he was satisfied with what she had to say. He still isn't ready to go online yet and check things out, and I think he is kind of just letting everything sink in right now.

Has anyone else's doctor moved things along so quickly? We just got the diagnosis on January 11 and here we're scheduled for surgery already on the 10th of April.

Laurie

[Sir Jeffrey]

Laurie,

Jamie already had her surgery and is 13 months post-op. She is going great! You will be so glad that your doctor is using donated or "fake" bone as I call it because I don't know the real name of it. Jamie's doctor used the fake bone, added her own blood to it and also used some of her own bone that he took from her spine. Jamie had a very quick recovery (back at school within 4 weeks half days and full-time by 6 weeks) and I know that was partly because she didn't have a donor site to recover from. I've heard a lot of people say that the donor site is more painful than the back.

Hang in there.

Mary Lou

[momof5]

Laurie -

Our doctor is about 1 hour away at Shriner's Hospital in Spokane. They haven't decided yet how they will fuse the curves. Apparently they don't do anything with the top curve. They will be taking more x-rays on Wednesday to see how the lower curve will respond if they only fuse the middle curve. Of course now that the MRI showed the spond. that may factor in as well. If they have to fuse both they said they would do the lower curve separately and go through the front (anterior).

We met with the physical therapists who worked w/Graham on Friday and they were very supportive. Everyone was disappointed that they weren't able to help the scoliosis, but gave us lots of positive encouragement from their experiences with other spine fusion patients.

This was the first time my husband went with us to talk with anyone about the surgery, etc. and it hit him pretty hard that night. It took me a while to figure out what was wrong. I've only seen him cry twice, after the births of our last 2 girls, so I was shocked to see that he had been crying. I guess dads have a hard time with this too. Graham is his only boy, the oldest, so they do lots of stuff together. I would be interested in how other dads have handled this.

Mary Lou - I'm curious about what you mentioned about donor bone. They said that they would take bone from Graham's rib as he had plenty there. I'm wondering if this is something I should ask about. It seems it would be better to use your own bone, but maybe not? I will add it to my list of questions.

Thanks again to you all. What a great bunch. Wish us luck on Wednesday.

As a side note, my dad's cousin (65 yrs old) who is like his brother has a bicycle accident on Friday and broke his neck and his back. He is in the hospital on a ventilator and if he does live his prognosis is very bad. He and I have become pretty close in the last few years and it is just bizarre to me that he would have a major spinal injury right now. Maybe it means nothing, but it has me a little spooked.

[lnetzer]

Mary Lou:

I tend to research the heck out of everything and wanted to know everything I could before we met with the doctor. One of my biggest worries was about the bone grafting, and that I'd read people have more pain from that later on than the spinal fusion. She does that exact same thing with the donor bone and blood, I was so relieved. Did Jamie have to donate blood? The doctor said it would add to the cost but that isn't about to deter us. I can't even imagine what the bills will be like after this, but nothing is more important than our son to us.

Wow, 4 weeks off and then 6 weeks back full time, that really helps me out to know that as I need to call our school tomorrow. I don't know where that will leave us as his surgery is April 10, and I think we're done the end of May/early June. Thank you again for your input!

Katy:

My husband went with us for the big discussion this last time. He works with someone whose daughter had it done a few years ago and was getting input that way, but being with the "guys" at work I think they all tend to shrug it off. I showed him my research and he read alot on the way down to see the doctor. I don't think it hit him, either, until we were sitting in that office. I mentioned to him that I was going online and talking to people and he seemed pretty interested to know what was going on with other people and how they are dealing with things. This is such a wonderful forum!

About the bone grafting, most of what I read they took the bone from the rear hip, so I don't know how it would be from the rib.

I wish you luck on Wednesday, know that my thoughts are with you and keep us posted. I'm sorry to hear about your dad's cousin, too, it's just got to be a coincidence that he is facing spinal surgery as well. Keep thinking positive thoughts and my prayers are with all of you.

Laurie

[Sir Jeffrey]

Katy,

I would imagine that it is better to use your own bone, but I'm not sure. It wasn't something I worried too much about. With Jamie her doctor did a procedure called osteotomies (sp?) and that's where they got most of the bone they needed for her fusion. I pulled out my report from her surgery and this is what it said, patient's autologous bone was placed and supplemented with four units of Symphony bone. I take it that they used 4 units of "fake" bone? I might be wrong.

I'm glad your husband is finally going with you to at least one or two appts. My husband never went to any appts. until we had a family conference. Although I've always kept him up to date with what was going on, I think that meeting made it real for him. I think a lot of my husband's problem is that his mother never deals with medical things and therefore, he was never taught how to deal with stuff like this. The day of Jamie's surgery was very hard on Jeff. When he finally got to see her in her room, he had to leave the room. I thought for sure he was going to pass out on me and he later told me that he did almost pass out, but he went to the restroom and had himself a good cry. Like your husband, Jeff is not a crier. I had a terrible time getting him to go home that day. He just hugged me and hugged me like he was drawing strength from me and I guess he was. I am happy to say that the next day when a lot of the tubes came out, he dealt much better with everything.

I'm sorry to hear about your husband's cousin. I'll keep him in my prayers. Please try not to let this spook you. His situation is totally different than Graham's.

Mary Lou

[Sir Jeffrey]

Laurie,

Jamie did have to donate blood. They wanted 4 units, but she was only able to donate 2 and they used both units in the O.R. Isn't it funny how we moms watch every penny when we go grocery shopping or something like that, but when it comes to our kids' health, we throw all caution to the wind? I too didn't worry too much about what donating blood or anything else would cost. I figured the hospital would just have to except weekly or monthly payments from us until the bill was paid in full. I think Jamie's surgery/hospital stay was well over $100,000 but worth every penny of it!

If you read this before you call the school, remember to ask them about fire drills. No one ever mentioned this to me, but it was one of those crazy things I thought about and it turned out to be very important. Jamie wasn't allowed to change classes with everyone else so what they did was call her to the office a few minutes before the drill was announced and she just stayed in the office during the drill.

Mary Lou

[nikyergen]

Laurie,
My daughter had donor bone for her fusion. She seems to of had no problems and I think by using the donor bone, she was able to heal faster. I have heard that the area they take the bone from if they don't use donor bone can be sore for a while. Also, she didn't donate any blood for her surgery and didn't require any additional blood.

Crystal was back to school at three weeks post op anywhere from half days to full days. She was back full time by six weeks.

I hope this helps.

As far as the dads go, I think they all tend to be pretty quiet. Someone said something like "It's the one thing they can't fix themselves." I think there is a lot of truth to that statement. Craig went to all of our appointments, we had to drive 5 hours one way and all three of our girls have scoliosis/kyphosis. So, his help was greatly needed. He didn't really talk about the surgery much. He did spend a little time with Crystal talking to her about it, which was a good thing. But, when it came time for surgery and they wheeled our daughter into the surgery and I cried, he was my rock. Give these men credit. They have a hard time dealing with things that they can't fix for their kids. However, when the going gets tough, you'll be surprised. Remember, women tend to want to talk about these things, men want to ignore these things as long as possible.

Nikki

[momof5]

Thanks again to all of you for responding. You are all such a blessing! I appreciate your prayers for my dad's cousin (his name is Jack). I know it's just a coincidence.

I think that we have all pretty much come to grips with the fact that surgery is the best thing. I was thinking about my husband and Graham yesterday and thought "Graham may not be able to go bike riding or backpacking with him this summer, but he will still be able to in 30 years if he has this surgery". Realizing that it is the best thing for the rest of his life.

Anyway, thanks again, I will let you know what happens on Wednesday.

Katy

[MATJESNIC]

Hi Nikki,
I was wondering if your daughter's curve was noticeable at 88 degrees. When do you think it first started to curve? Why wasn't it picked up at 30 degrees, for example? I hope you don't mind my asking.
My Nikki 's curve was noticed at 10 and a half. Her ped. told me it was starting to curve and to bring her back in 6 months. I never brought her back for that. I didn't think it was a big deal. We were dealing with bronchitis and fevers and other typical illnesses that year. She was at the doctor's about 3 more times since then, and it slipped my mind for them to check her back. We go to a group, so there is little "checks and balances." By the time she went back a year later for her 11 and a half check up, she had a 37 degree curve. When the doctor showed me her spine, I could see the shoulder blade sticking out. And when she bent over, I could see one half higher than another.
Melissa

[nikyergen]

Melissa,
Crystal wasn't diagnosed until she was 15 and we got her into Shriners for an eval. All of her various doctors would ask if she had ever injured her back. We would say no, and they would say okay and never go any further. With that, we thought she just had lazy posture. This has been going on since she was 5-6 years old, so for a very long time I was believing our pediatrician. Finally, a friend, whose daughter was in a brace, asked us about it. She recommended a particular doctor and then told us about Shriners. The big kicker. My husband is a Shriner and I never even thought about them. When one of the hospital board members talked to me about it, I looked at him and said "My child isn't crippled." He then informed me that if things weren't taken care of she could have other debilitating problems. Hopefully, this made a long story short and you can understand that we had a lot of faith in our doctors. Crystal should of been in a brace at 5-6 years old.

At 88 degrees, yes her back was very noticable, but we were trusting all current doctors. When Crystal was in the hospital with a bout of pneumonia before she had surgery, her GP couldn't understand why she was having surgery. I asked to see Crystal's chest x-rays so I could show her the problem. When I showed her the problem, then she could see it and understand. How, do you think I felt educating the doctor. Pretty scarey. Crystal is very active and never let it slow her down. Like I said, we were told by the pediatrician and a chiropractor that she had terrible posture, and that correcting her posture would solve her problem. WRONG. Crystal even took it upon herself at every appointment to see if there was a brace or something that would help correct the problem. What did we get told, NO there wasn't a brace that could fix it. We were shocked to find out that all three of our daughters have scoliosis/kyphosis at our first appointment at Shriners. Our oldest had surgery, our middle was a wait and watch and has been recently released from any further treatment, and our youngest has about 6 more months in her brace. The best day of Crystal's life was to walk back into the Chiropractors office and tell them she didn't have lazy posture and that she had a problem that needed surgical intervention.

THe best part is that Crystal's asthma has gotten much better. She doesn't get colds as frequently, because now her lungs can expand in her chest.

We feel terrible about our daughter, but we were trusting the doctors at the time. Now, 10 months after surgery, Crystal is doing great and a very happy 17 year old. She's glad her back is straight and she feels much better about herself now.

Hopefully, other parents will question their childs doctor when they are told their child has lazy posture.

It wasn't that we didn't see our daughter's back, we were just trusting and listening to numerous doctors. Everyone of them told us she was just a lazy postured child.

Hope this helps. Ask more questions if you want. I'll share my experiences.

Nikki

[Sir Jeffrey]

Nikki,

I know exactly how you feel. I too think Jamie's Kyphoscoliosis started years before she was diagnosed. Now that I know so much about it, I look back at pictures of her and wonder why no one picked it--me or her doctor. I know why I didn't pick up on it. No one ever told me what Scoliosis or Kyphosis looked like. My husband would walk up behind Jamie and pull her shoulders back and tell her "shoulders back, chest out" and her reply was always "I can't." We thought she was being a typical kid and becoming lazy with her posture. When I look back at pictures of her from the side, her Kyphosis is so noticeable!! I always take my kids in for a yearly check-up and her doctor never noticed anything wrong with her back until the day he diagnosed her and he did the forward bending test every year. The day after he diagnosed her he asked me to come into his office without Jamie to discuss what needed to be done. He apologized to me because he said when he walked into the room the previous day and saw her sitting on the table, he almost yelled at her for her bad posture. He was glad he didn't, but at first glance that's what he thought was going on also.


I'm sure you felt the same way as I did for awhile--guilty, guilty, guilty--for not seeing what was wrong with Jamie's back. I didn't let myself dwell on that because no one ever told me what to look for and we needed to move on and get her treatment started.

I think what we are doing on this forum and outside of the forum is awesome. At least we are getting the word out there and trying to educate people. Jamie had to do a speech about herself the other day and she said most of the kids were totally shocked to find out she has Scoliosis (Jamie is a freshman and this class is mostly with sophomores and just started last week so they don't really know her yet). Jamie and I have found that many people don't even know what Scoliosis is or why they are asked to do the forward bending test. Shoot, Jamie told me that she always thought they were checking her flexibility! Oh, how things have changed!

Mary Lou

[nikyergen]

Mary Lou,
We too have gotten beyond the guilty feelings we had for so long. But, when you don't know what scoliosis/kyphosis looks like you don't see it. Now, I look at every person that walks by, young and old. If it's a child and I know their parents, I'll talk to them about it. I try to do what I can to make parents aware of these problems. I sure wish someone would of done it for me when Crystal was little. We may not of had to have surgery then.

Michelle had to do a CIM Speech before the holidays. She did hers on Scoliosis and Kyphosis. Her classmates knew nothing about it before hand, but did they have the questions afterwards. Now, they understand why Michelle has a brace and why Crystal had surgery. It was pretty neat. The best part was that Michelle was the only one that passed her CIM speech on the first try, there were even freshman, sophmores and juniors that didn't pass and had to come back and do them again. Michelle is only in the 8th grade. So, she was real pleased with herself.

I see you are still royalty. Did your other sign in blow up? Several people have had a few problems lately.

The one thing I would like every parent to know DON'T FEEL GUILTY ABOUT YOUR CHILDS SCOLIOSIS OR KYPHOSIS. Our is genetic and it came from my side of the family, as I have it and my nephew has it too. But, we don't feel guilty about it any more. We've put the guilt behind us and gone on with our lives. We try to help out on the forums and outside the forums.

Nikki

[lnetzer]

Mary Lou:

I never even thought about the fire drill thing, that is good to know! I'm hoping they will let Josh leave before the end of classes a few minutes sooner, too. He goes to a very small Catholic school, and his class only has 8 students in it. I haven't called the school yet as our doctor called us yesterday and said she was having a packet of papers sent to us with additional info we would need, including the blood donation info, so I figured I'd wait until we get that. The teachers are all aware of what is going on, but I will need to get a plan worked out. I don't know if there is a homebound program even, since it's a parochial school. So many details to iron out, I have a running list so I don't forget anything!

Laurie

[lnetzer]

Nikki:

Is there a risk of rejection since it is donor bone? I hope that doesn't sound stupid, but my mother asked me that and I figured I would ask and see if your doctor had mentioned that? We didn't touch any on it besides to say that was the way she did it.

I appreciate all of the feedback on school and everything, as I haven't a clue what to expect and when I sit down with the administrator of the school I want to have all my ducks in a row :)

Laurie

[nikyergen]

Laurie,
There is some risk of rejection of donor bone, but very minimal. The problem would be that the fusion wouldn't take and they would have to go back in and use the childs own bone. However, the rejection like this is very very minimal. Crystal's fusion healed just fine without any problems. There are no anti-rejection drugs or anything that they take for this. It either takes or it doesn't. We felt the risk was minimal, and that Crystal's recovery would be quicker without having to have a second surgical site for the bone harvest. From what I have read on the forums, the kids have more trouble with the bone harvest sites than they do the actual surgery. By trouble, I mean pain and inflamation.

You are on the right track with your school. Give them the heads up and help them prepare for your sons return to school. Don't be afraid to put your foot down with them on matters, if they disagree with you. I had a meeting with all of the teachers, principal, and superintendent a couple of days before Crystal went back to school. We discussed what she was allowed to do and what she wasn't allowed to do. You will find they will be your best friend. Crystal's History Teacher caught her shooting hoops in the gym when no one was around, or so she thought. He escorted her out of the gym and reminded her why she shouldn't be doing those things. Now, can you imagine having to do this with an almost 17 year old. So, it doesn't matter what age they are, they are going to try to push the issues and you need the teachers on your side. The teacher don't have to baby sit, but they will intervene if they need to.

Homebound may not be available since you are a private school. However, they have to abide by the law and be sure that he doesn't miss any of his education. It may mean you having to figure out how to help out, but that is all doable.

Keep asking the questions and we will all try to help you out.

Nikki

[Sir Jeffrey]

Nikki,

I don't know what's going on with my old username. My name doesn't show up on the members list, but yet when I try to re-register, it tells me that name is already in use. I tried to create a new name twice but never receive e-mail notification that my account has been activated. Also, I can go on one of those names, but I can't do anything---no responding to posts, no starting new threads, etc. Maybe I was just meant to be royalty?! :o

Mary Lou

[momof5]

Hi Everyone!

I finally have a minute (maybe) to sit down and let you know how our appt. at Shriner's went on Wednesday.

First, we found out that the dr he saw before is no longer there. So, we have to see a new dr. But, that hadn't been figured out by the time we went for our appt. So, we just saw the assistant, who we saw before ( I really like her). She answered most of our questions and told us who our new dr would be. We set up an appt with the new dr for March 9th. That will give him time to review all the x-rays, MRI, etc.

The assistant did look over the MRI report and said that there was nothing at all that we should be concerned about. She said that noting the spondolilysis (sp?) was just something they do. It was not what that were concerned about. They were only concerned about anything cervical that might be affecting his muscle imbalance. She said it looks like the imbalance is simply from his curve. So, this is all good news.

Graham said he would like to wait until Sept. to have the surgery and she said that it shouldn't be a problem to wait that long. He wants to go to camp in August and since we homeschool it won't interfere with his schooling.

My husband was able to go with us and ask his questions and learn a lot more about what's going on. This was a really good thing for him. So, all in all, it was a good visit and it looks like we will do surgery in Sept.

On a side note, the assistant told us they had a patient right now with 140* curve!!! Wow!!! Makes me feel fortunate. She said they have had patients with scoliosis so bad they were unable to walk and how rewarding it is to see them walk again! This also gives me a lot of confidence in the drs ability.

So, everything looks good. Thanks again for all the support.

Katy

[Snoopy]

Katy,

I'm glad your appointment went well and that your husband was able to go along. I think they need that sometimes to make it "real" for them.

Keep us posted.

Mary Lou

[lnetzer]

Katy:

That's great news about Graham! Even better that he can wait until September to have surgery. I wish they would let us wait until June when school is out, but our school is going to work with us to keep Josh caught up on his homework so I guess I shouldn't worry about it too much. :rolleyes:

I spent almost 4 hours on the phone going back and forth between making appointments, checking insurance coverage, etc. We are all set now, it's just a matter of getting the blood donation done next month and then the 2 pre-op appts.

Does anyone that has had the surgery heard anything about physical therapy afterwards? Our doctor said there isn't any, but how do they keep up on their healing/walking, etc? Just curious!

Laurie

[Snoopy]

Laurie,

Jamie had physical therapy starting at about 3 months post-op. I chose a place that offered water therapy as well as regular physical therapy. For the first 2 weeks or so, she did only about 1/2 hour of water therapy and after that she did 1/2 hour of water therapy first and then another 1/2 hour of regular therapy.

As for keeping up with walking, Jamie walked only in the house since it was December and too cold/icy for her to walk outside. Some kids go to the mall and walk for exercise, but Jamie didn't want to. When she returned to school, she was tired for the first week or so, but did just fine and by going half days, I think that helped her build up her strength.

Mary Lou

[nikyergen]

Laurie,
Crystal didn't have any physical therapy. She just increased her exercise, within the doctors limitations, as she gained energy. But, she did have a brace after surgery, where she had never had one before surgery. The brace was to just protect her from bending, twisting, etc. I think physical therapy and bracing after surgery depends on what each doctor uses for a protocol.

Jaimie and Crystal had the same type of surgery, for kyphosis, and the same number of vertabra fused. I think the only difference was where they started and ended the fusion. Crystals goes from T2-L2. And both girls were anything but couch potatoes. Both were very active in their everyday life. So, I am thinking physical therapy is a personal doctor preference.

Hope this helps. I hope it doesn't confuse you more.
Nikki

[LeaEvelyn]

Hi All,
I have a fourteen year old son with scoliosis. We started out with bracing when he was eleven. The brace slowed down the progression, but didn't stop it. He is our only child and we were very cautious, and extremely anxious with the whole thing. Before he had surgery, he had an MRI, which took about 2 1/2 hours and donated 2 units of his own blood. He also had donor bone mixed with his own, that they chipped off his spine during surgery. He had absolutely no problems with either. He did end up with a very rare complication afterwards though. His doctor used bending x-rays to show him which vertabras to fuse. {This shows while in the bending position, how far the spine will straighten on its own} By the time he reached eight week post op, he had developed an add on phenonmon at the bottom of his fussion. Talk about anxious mom, I about passed out from the stress. They sent us for a cat scan this time. Thankfully it came back just fine. He was also checked for Marfans syndrome, and again, all was fine. It is still unknown why this happened to him. He had to have a second surgery, to extend the fussion down two more vertebras. Again, he did just fine with this surgery too. He wasn't layed up too long. As a matter of fact, he was able to play basketball for his eight grade team after seven months post op. I just wanted to share with yous the pros and cons of surgery. Looking back, I wouldn't change anything. He needed surgery to stop his very agressive progression of the curve. He looks so much better now without scoliosis deforming his posture. I just wish he didn't have to go through it twice, which remember, is extremely rare. He wrote a story about his experience with all of this and it can be found at www.spinekids.com/shane.shtml.

[lnetzer]

LeaEvelyn:

Thank you for sharing your son's story! I have such anticipation about the surgery, even more than my own 13 year old son does. He is our only child and I am so afraid of the unknowns. He has to donate 3 units of blood next month for his surgery on April 10. Our doctor also does the donor bone. Is it realistic that they are up walking within 24 hours? What about being released from the hospital? They are telling us surgery on Monday morning and release by Saturday afternoon?

I will have my son check out your son's story, too. He's finally to the point where he wants to know a little more about it than what the doctor has discussed with him.

Laurie

[Snoopy]

Laurie,

I know it sounds amazing, but yes, they are usually up and sitting in a chair within 24 hours after surgery. Jamie had her surgery on a Tuesday, Wednesday she was sitting in a chair and went for her first walk, Thursday went to P.T., Friday went to P.T. and walked up and down the stairs, and we were told she could go home Saturday. She didn't go home until Sunday, for two reasons: 1) a nurse messed up with her pain meds Friday night and I wasn't sure her pain was properly controlled and 2) her bowels hadn't moved and they wanted that to happen before she left. So, as you can see, your doctor's plan is unrealistic. Remember, you always have the right to request another day in the hospital if you think your son needs it.

Mary Lou

[LeaEvelyn]

Hi Laurie,
I'm glad I could help. I have a sister Lori, and I noticed scoliosis in her middle child just three months ago. I referred her to my son's doctor and they really liked him. Shane was up and walking 24 hours after surgery. It wasn't the walking that he found hard, for they didn't have him go very far. What he found hard, was they wanted him sitting up in a chair for one hour, twice a day, which to him, seemed like an eternity. He was way more comfortable laying down. It actually took him about four to six weeks to get used to the rods in his back. The doctor said it was because his body was so used to being curved, that it was trying to adjust to being so straight. I hope your son does get a chance to read Shane's story, this way he will also realize he isn't the only boy suffering from this condition. If you have any questions or concerns, I'll try to help you in any way I can, ok. Remember, Shane is our only child too, I don't know if that makes much difference or not, but I also took everything pretty hard. Also, Shane's first surgery was on a Tuesday, he got to go home on Sunday. His second surgery was on a Monday, we went home on Friday for that one. But remember everyone is different.
Take Care,
LeaEvelyn

[lnetzer]

LeaEvelyn:

Thank you for sharing your story with me. When I posted I hadn't read it yet as I wanted to go thru it first and then see if Josh wanted to read it. He did and wanted to see more stories. I know any parent worries about their child, but when you only have one I think it makes it all the more worrisome, at least for me! I am trying to fill my head with any and all knowledge I can regarding the surgery. My husband doesn't have alot of time to just sit and read so I make notes and share with him, too.

The doctor told us that Josh will gain about 3 inches from being straightened, so he will be almost as tall as I am! I keep trying to focus on the positives in all of this, knowing that there are so many who have gone thru this and came out just fine! Easier said than done :rolleyes:

Already he is saying he just wants to have the surgery done and over with, and I agree that the anticipation of it all is getting to me as well. I think once the blood donation starts next month it will be even more real to all of us. He is talking about this person and that person coming to visit him, etc. We haven't spoken to the doctor yet, but I'm sure they're not going to let everyone come traipsing thru the hospital room constantly! What would you recommend? I know my husband and I plan to be there almost the entire time, but for the most part, I don't know how things will be regarding being on pain meds, etc. and will he even be coherent enough to know he has visitors? I would think he needs to rest more than anything, and the sitting and walking he'll need to do.

I do appreciate any input you have. Thank you again!

Laurie

[Snoopy]

For the first few days, we kept visitors to a minimum. Shoot, Jamie doesn't even remember some of them being there! As for her friends, we asked that they call instead of visiting in the hospital. We made arrangements before her surgery to call her best friend and let her know when she was up for a visit and that worked very well. So, except for my husband, other daughter, my mom and dad visiting every day, (I stayed the whole time) she had very few people in and out. It gave her a chance to rest whenever she wanted to rest.

Mary Lou

[nikyergen]

Ditto with Mary Lou. They are on enough pain meds., etc., that they don't really realize they have someone visiting. Crystal remembers very little of her hospital stay. She remembers the last two days, but anything before that is a pretty big blurr to her.

Nikki

[flowerpower]

We opted to not have any visitors while my son was in the hospital. He had a bit of a hard time dealing with the pain (low pain tolerance) and with the meds he was on he was not very alert or coherent for the first few days. Plus, he didn't really want his friends and family to see him with the drain and NG tube and such. He had to keep the NG tube and catheter a day or two longer than most because the morphine really slowed his system down. One uncle paid a surprise visit right at the time we got Joe up to sit in a wheelchair for the first time. Not very pleasant, I really wish he would have called first. However, if your son feels up for visitors it will probably do his spirits well. I would just suggest to have them call ahead first. Good luck to you-

Renee

[LeaEvelyn]

Hi Laurie,
I'm pretty well in agreement with the responses you have gotten so far. With Shane's first surgery, he had his grandparents in the first couple of days. He was in intensive care, and he was on a morphine drip, he don't remember them being there. After that, his favorite cousin came in to visit. They had made big plans before surgery, to play X-box. Well, that didn't work out too well, for he couldn't tolerate sitting up for over a 1/2 hour, and he had to walk to get to the game room too. I guess I'm saying, it wore him out totally, so much so, that he slept for hours afterward. But if it gives your son something to look forward to, with the hospital stay, I can't say it would hurt to make plans, you can always call his friends if he don't feel up to visitors.
Well take care,
LeaEvelyn

[klein5]

I think that the Schroth method is a good alternative to consider before surgery. While the Schroth Method may not be a part of main stream scoliosis treatment in the US, that does not necessarily mean that it doesn't work. I am 18 but and it has helped me and I have seen it help adults as well. Some people will say that it is useless and can't be backed up about studies I believe they are being quite close minded. While my scoliosis was only about 30 degrees I was terrified when the doctor told me I might have to have surgery one day. If you are a candidate for surgery you should seriously look into and consider the Schroth method. This physical therapy is designed to help control the curvature, decrease body deformities, and manage pain. Think of what you will have to go through if you have surgery and all the activities you will not be able to do once you have recovered. There are clinics in Germany, Spain, England, Israel, and now the US. The website for the new US clinic is www.scoliosisrehab.com you can find more info there and links to research and literature on the Schroth Method and the staff does a great job answering your questions.

[lnetzer]

Hi everyone! It's been a while since I posted. We were all set to begin our blood donation tomorrow for our April surgery when we had to rush to the ER on Monday. Josh was having rapid heartbeat, chest pain, and shortness of breath. All the tests came back normal, just saying that he had an inflammation on the chest wall near his breastbone. Not sure I agree with that but we followed up with our primary doc and we have been referred to a pediatric cardiologist and Josh will have to wear an event monitor to record when his heart is racing. This puts everything on hold until we get the results of that. They are saying it's more than just anxiety, as he had a monitor like this back in August/September of 2003 because of rapid heartbeat. I just want to make sure everything is all good before we go into surgery.

I hope this finds everyone doing fine!

Laurie

[flowerpower]

Hi Laurie,

So sorry to hear about the setbacks. Hope Josh is doing ok. Do the dr.'s have an idea of what may be causing the inflamation? How long does this put off his blood donation?

Renee

[LeaEvelyn]

Hi Laurie,
Sorry to hear about Josh's set back, but as I'm sure you know, it is better to be safe than sorry. Spinal fusion is a major surgery, and one must go into it with the best of health, for a good recovery. Hope all the tests turn out ok. Hey, is Josh really tall and thin? Just wondering, you see, my son is really tall and quite thin for his age. When he had an add on phenomenon develope after his first surgery, his doctor had him tested for Marfans syndrome, which they told me can cause alot of other health problems. Just thought it might be worth mentioning to you. Hope all turns out well, and this doesn't set yous back too far.
Take Care, and keep us posted, ok.
LeaEvelyn

[lnetzer]

Hi everyone! Thank you for your concerns! I'm still waiting to hear from the cardiologist about getting the monitor set up, plus our surgeon was gone on Friday so I couldn't talk to her, either. Everyone will be getting a call bright and early Monday morning. It's bad enough having setbacks, but then the whole waiting to see what this doctor and that doctor has to say is incredibly frustrating. The way it looks now, I doubt we'll have surgery on our originally scheduled date. But I agree, better to be safe.

Actually, Josh isn't thin, he's got a few extra pounds on him. I'll have to look up that Marfan thing and see what it is. Is everything okay?

Back to search the web!

Laurie

[LeaEvelyn]

Hi Laurie,

Keep us posted on Josh's progress, ok. Everything turned out ok for us, my son didn't have Marfans syndrome. A simple blood test showed he was negitive for this disorder. I just wanted to mention this to you, in case you wanted to look into it. My sons surgeon once said to us; scoliosis is a symptom, 80% of the time, doctors don't know what is causing it. They basicly treat the symptom, which is scoliosis. This is why they call most cases idiopathic, which means unknown. I know there is a few disorders out there that can cause scoliosis, but I don't think your orthopaedic doctors test for them. I'm pretty sure, if you wanted further test done, you would have to go to your regular family doctor.

Good luck to yous. And I hope everything turns out ok.
LeaEvelyn

[lnetzer]

LeaEvelyn:

Hi! Well, we got a new surgery date today. Instead of April 10 we now are at May 22. They aren't sure how long Josh will have to wear the event monitor for his heart, it could be anywhere up to 6 weeks. We get it on tomorrow, and they want to make sure we have enough time to get something recorded on it enough times and to be able to evaluate and possibly treat if necessary. Josh was kind of bummed because he just wants it all over with (that and the fact that he would get to miss more school!) but knowing as much as possible and taking care of any other problems is pretty important. We're all still pretty anxious regardless, but hopefully everything will turn out fine and it's just his nerves or something.

I'm glad to hear your son didn't have Marfan's Syndrome. I looked it up and Josh didn't really have any of the other symptoms of it. We're pretty frequent flyers at our family doctor anyhow because of Josh's asthma, so I will ask about any other test the next time we go in.

Thank you again for your concern! :)

Laurie

[lnetzer]

Renee:

The family doctor said it could be any number of things causing the inflammation, but he didn't really think that's what it was. Josh was fine by the time we went to the doctor on Wed. afternoon. Our surgery date is now May 22, and we don't start donating blood now until the end of April. I've got to ask the doctor if we should continue the double dose of iron pills he is on, plus the multi-vitamin....and restart it again next month. When they did the blood work at our hospital ER visit last Monday they said his red cell count was high, and I would imagine that's because of the extra iron. So many questions! I almost cringe at the site of the telephone now because I've spent so much time on it between the appt. changes, questions, insurance, etc. I wish my husband was more phone savvy but he hates to talk on the phone, period! :p

Laurie

[momof5]

Laurie,

Just wanted to encourage you to hang in there. I guess it's a good thing to find any problems now before surgery. I imagine it is pretty nerve-wracking though!!

Please keep us posted on what you find out.

Katy

[flowerpower]

Laurie,

I sure know what you mean - I'm the one who ended up doing all the research, phone calls, etc., I guess just because I quit my secretary job to stay home with kids doesn't mean I stopped being one!

I would be frustrated too at the surgery date being put off. When you're this close you just want it to be over with. But to look at it positively, think of this as extra time to get Josh in even healthier shape than he is now. Eat a healthy diet, do exercises & activities that will help (gently) build up lung strength. This may be hard because of the asthma & I don't know if his activities are restricted while his heart is being monitored, but even just walking would be good to build up endurance & stamina. Hope everything goes ok & no more setbacks - keep us posted! Take care -

Renee

[LeaEvelyn]

Thanks for the reply Laurie. I hope everything works out ok. Good Luck with your new surgery date. I would assume you were relieved to have it bumped back. It is better to make sure everything else is ok first. Take Care, and keep us posted, ok.
LeaEvelyn

[momof5]

Laurie,

extra time to get Josh in even healthier shape than he is now. Eat a healthy diet, do exercises & activities that will help (gently) build up lung strength.
Renee

Renee & others,

I'm curious what you all did (or your kids did) for exercise before surgery. We still don't have a date, but are still shooting for September (if the Dr. agrees next week). Graham does Karate 2 days a week (3 classes, black belt level) and we just added 2 swimming classes so he now has 3 swimming classes a week. He also still does stretching exercises that the Physical Therapist taught him. Both Karate and swimming will drop to 2 classes a week in May, but we may try to add some others or swimming in the lake once it's warm enough. Did anyone have specific recommendations from a Dr. of PT that might go beyond this? I know that it is important to have muscle strength plus lung capacity, which is why we chose swimming.

Anyway, I was just curious. Since we have so much time we want to make the most of it. I told Graham to just imagine that he is training for the Olympics :)

Katy

[flowerpower]

Hi Katy,

I think everything you and your son are doing is great. Swimming is good as it exercises all the muscles as well as strenghtens the lungs. The stretching is really good also. Walking, PT or anything to strengthen the leg (and arm) muscles is good also. Maybe someone else can chime with an opinion on this, but I don't know that the back muscles should be something to focus on strengthening right now, as that would toughen or thicken muscles that will be cut during surgery. With the exception of PT, we did pretty much everything you did though it was hard to get Joe to exercise and stretch with me. I made sure he took a multivitamin daily months before his surgery & I think this helped with his iron levels. I also made sure he ate a really healthy diet (almost) every day, especially lots of health drinks and homemade smoothies in the weeks prior to his surgery.

You are doing the right thing making the most out of the time leading up to surgery. I appreciate the way you compare this to training for the olympics, it sure can feel that way!

Hope this was helpful. Best wishes to you both. Please keep us posted & take care -

Renee

[momof5]

Thanks Renee,

My husband is kind of a fitness fanatic, so he is pushing hard for Graham to do as much as he can. The hardest part is having the time! A multi vitamin is a good idea. I think I will start that soon. We generally eat pretty healthy already, so I think we are okay there.

Thanks again for your input!

Katy

[lnetzer]

Katy, Renee, and LeaEvelyn:

Hi! I really appreciate your comments and support!

It was pretty disheartening to have the surgery date put back so far, especially when we were so close to it, but of course I'd rather know exactly what is going on. So far we've called in 10 heart events, but they want MORE so whenever he has them he will record them. I'm praying it's just stress and nothing really serious. Someone did mention to me something about Acid Reflux, so I am going to find out about that. It doesn't happen after he eats though, so I'm wondering if anyone knows anything about this? We never know when it'll happen, he can be sitting at school or even laying on his bed watching TV and his heart will start racing.

When I asked our surgeon back in January about PT she said there was none. I don't know how that can be, but we are going to join the YMCA and get Josh into swimming as that really is a great idea for strengthening his lung capacity.

Josh has been taking a multi vitamin for over a month now, plus 2 iron pills a day as we were supposed to be donating blood this month. He's going to continue to take them as the doctor said that was a good idea.

Laurie

[LeaEvelyn]

Hi Everyone,
I'm so impressed by everyones concerns for their children being in the best of shape for surgery. And every one of you are right. My son had scoliosis surgery about a year ago. We had him run cross country for exercise. His dad is also a distance runner, so he found it quite natural to be running. This helped him have excelent lung strength. Accually, during his recovery in the hospital, he was told many times, and by many different people who were taking care of him there, that he was one of their best scoliosis patients they had seen come through in a long time. I know it is because he was in such good shape going into surgey. So keep that in mind while you are preparing your children for surgery. Yes, exercise would be a great part of the preparation. Good luck to everyone preparing their child for surgery. I know what a diffucult time it can be in your life. I'll be praying for all of you's.
LeaEvelyn :o

[momof5]

Laurie,

I don't think surgeons are likely to stress PT or exercise. My husband and I discussed this. Partly because they are medical doctors and are used to correcting problems rather than preventing them. Also, I think because they often deal with patients who are in so much worse shape, from birth defects, disease, etc. that they are unable to do exercise. Our Dr. has a patient right now with a 110* curve! The Drs assistant did tell us that Graham would have it easier because he is in such good shape. I also have a friend who had a fusion in 1979. She is a swimmer. Her parents even put in a pool for her and she teaches Graham's homeschool swimming class. She has been a big encouragement to us. She highly recommended swimming and told us how important it is to improve his lungs so that he is able to keep them clear after surgery. So even though Graham is already very physically strong, his aerobic capacity is lacking. He hates running even though his dad and I both run (not distance, though, mostly trail running). So, we gave him the option of swimming which also offers no impact.

Anyway, I guess I am rambling, but this is an important subject to us. I think most of us could use more exercise than we get anyway (I know I could). My friend also told us that he will lose a lot of muscle strength with the surgery, so the more he has going in, the better.

Okay, thanks for all the responses. I'm glad to hear others views on this.

Laurie - keep us posted on Josh's heart.
Katy

[momof5]

Hi Everyone!
I'm back with even more questions. We took Graham to Shriner's again yesterday and met with a different doctor. The original doctor is no longer there.

Anyway, this Dr. basically said that for Graham to have surgery now it would be mostly for cosmetic reasons. He said that because most cases are girls they choose to have the surgery at this point because of the way their back looks. Graham's curves are at 64* and 49*.

Graham has had no pain or numbness or anything else associated with his Scoliosis. The Dr. said that unless Graham's curve progresses to 70*-80* before he stops growing he wouldn't anticipate any medical problems in the future associated with Scoliosis. They did say that his bone growth measurement was a 4. I don't remember exactly what that means. I know the original Dr. said it meant he would grow 2"-3" more.

Now, I am happy to consider not having surgery due to the risks involved and the fact that if they do surgery he will have to have 2 fusions, one anterior which they said they could probably stop at T3? But, I am concerned that he will have problems in the future. The Dr. said that older people with Scoliosis have no greater problems with back pain than the average person. He said that because of where Graham's curves are there is no concern about organs being affected.

At this point we made an appointment for more x-rays in September. Then he said if the curve has progressed we can decide from there. However, I am hoping to get as much information as I can now to decide if this is the best course. I know that waiting won't make a huge difference as far as having surgery. We weren't planning on having surgery until September anyway. I'm just hoping some of you might have some good information that can help us determine if this is a good course of action. I hate to put off surgery now and Graham start having a lot of problems in 10 years.

So, thanks again for all your support and any and all help is very much appreciated!

Katy

[LeaEvelyn]

Hi Katy,
Where is Graham's curves? And how old is he? My son had spinal fussion a year ago. He is now 14 years old. He had one major curve, and is fussed from T-3 to L-3. He needed surgery, and his curve was measured at 57*. His doctor said that judging by the way he was progressing and the amount of potential growth left, he would eventually have problems with his heart and lungs. Has your son had scoliosis for very long? or is it something that was just receintly discovered? I guess if I were you, I would want a little more info from people who has scoliosis with larger degree curves, that haven't been treated with surgery. It seems with curves of that magnitude, he might be more prone to back problems later in life. The internet is a wonderful place for looking up information. I was on a site a while back that went into detail about adults with untreated Idiopathic Scoliosis. I can't remember the site, but the Scoliosis Research Society is a good place to start, from there, you can click on other related sites. Hope this can be of some help.
Good Luck to you.
LeaEvelyn

[momof5]

Graham actually has 3 curves. One at T1-T7 which as 49*, T7-T12 64*, and T12-L4 49*. He will be 16 in August. He is already 5'10", so I don't think they are predicting a lot more growth. His bone age was a 4 (I think ). Having the 3 curves really balances him. You almost can't tell even with his shirt off that he has Scoliosis if you don't know. He was diagnosed last July. His curves then were 45* 60* and 45*. The Dr. says this is still within the margin of error for reading from the x-rays, meaning it may not have even progressed that much.

I am wondering also if the PT and exercise he has done since his diagnosis has helped to stop it from progressing. We did PT twice a week for 5 months and exercises at home, plus swimming before he went to Shriner's. Unfortunately there is no way to know what effect this had.

Anyway, I did find the Scoliosis Research Society, thank you. I will keep looking for more information about untreated Scoliosis.

Thanks again for your input.
Katy

[LeaEvelyn]

Hope you find the answers you are looking for. Good luck in your search. I would assume that PT would help Graham, at the very least, it would keep his back mucles strong to support the curves he has.
Take Care,
LeaEvelyn

[lnetzer]

Hi everyone! Josh has been wearing his event monitor for a month now and we still don't know anything. The pediatric cardiologist is the ONLY one in a 300 mile radius, so he is extremely busy. I've talked to his nurse and she said he's read all of the transmits that have come in and they are normal (the monitor Josh wears he hits a button and it records the heartbeat for a few minutes and when the unit has 5 events on it we call it in and they print it off like an EKG on a strip). I can't believe it's normal to have a racing heart at 176 beats/minute! I sat on hold for 40 minutes today trying to get an appt. I'm very frustrated. Josh wishes he could have surgery and get it over with as he's been having some back pain the past week or so. His original surgery date was this past Monday. Just wanted to keep everyone filled in. I hope everyone is doing well :-)

Laurie
mom to Josh age 13 due for surgery May 22 for 2 major curves....75 and 55 degrees.

[flowerpower]

Hi Laurie,

I hope things will be ok for Josh and no further delays for his surgery. 176 bpm, wow! That must feel scary for Josh when that happens. Thanks for keeping us posted, keep in touch and take care.

Renee

[momof5]

Laurie,

Just wanted to encourage you to hang in there! We are kind of in the same boat. Now that Dr #2 says Graham may not need surgery we are back to looking at alternatives - not knowing if anything will help.

I just figure someone bigger than me is in charge and knows what's best.

Please keep us updated.

Katy

[LeaEvelyn]

Hi Laurie :p ,
Boy, nothing is easy in life, is it? Have they given you any indication if they want to postpone his surgery in May? You said the monitor isn't catching his heart racing. Has he ever felt it do that, since he has worn the montor? I bet it is very hard finding a pediatric cardiologist. Hope things get better for yous. You'll be in our prayers. Take Care, and keep us posted, OK.
LeaEvelyn :rolleyes:

[lnetzer]

Just wanted to say thanks again for the support. It means alot that I have you folks to talk to :-) Today the place where we had the monitor set up in town called and said the pediatric cardiologist had enough events recorded to make some kind of determination, but that we would have to talk to that office directly. We had to turn the monitor in and now I will call first thing tomorrow to see what is going on. I've waited a week for a call back before for this place, so I don't anticipate having answers again any time soon. I do need to know something though as we are set up for that 1st blood donation this coming Thursday. I can't imagine what you are going thru now that the surgeon has said Graham may not need surgery. I keep playing that in my head now, too, that how can I let this happen to my son and stop his spine from growing when he clearly would grow so much more. Lots and lots of prayers and I'm hoping to know more soon....about everything :-)

I wish everyone a happy and blessed Easter!

Laurie

[Jacqui]

About letting younger (or older) brothers and sisters visiting patients in the hospital:

When I was in for scoliosis surgery last year, I was on a lot of drugs. I was hallucinating and kept seeing things in the room that didn't exist. I was convinced that the I.V. pole was a person watching me. My older brother came to visit my on the third or fourth day (I don't even remember this). Supposedly I got really upset and yelled at him. I have no idea what I said, but it certainly scared my brother (who was 17).

All that I'm saying is, if you let the older children visit their brother/sister for a short time, warn them that he/she might be different in more ways that just physically. I wouldn't recommend having the younger children visit their sibling. They might not forgive their brother or sister for saying things induced by the drugs. After all, their sibling will be home in only 5 days-a week, and back to normal soon enough.

Best of luck!

[lnetzer]

Hi everyone. Today we went to our cardiology appt to find the results from having worn the event monitor for over 4 weeks. We are told everything is normal, all of his heart rhythms were normal, just that Josh's heart races like he was exercising when he is sitting still in class. We were told it is anxiety, but an ultrasound is scheduled for next Thursday of his heart to make sure there are no structural abnormalities. The doctor did OK Josh's starting his blood donation today though. So we went to that appt. 3 hours later and waited for 40 minutes while they checked his blood, etc. and we were refused as his pulse rate was higher than what they will accept. They said it didn't matter what the cardiologist said, their head director for the Red Cross in Madison, WI was called and what he said goes as they work under him, not our cardiologist. They also cancelled our appt next week too because now they won't touch him until the results from the heart ultrasound are known. This leaves us with probably not enough time to donate 3 units as the surgeon is requiring. I'm wondering with this new set of roadblocks if God is trying to tell me something and maybe we should not do surgery? I know we have no other options as his curves are 77 and 55, but I guess I am completely frustrated again :( I did put in a call to our surgeon but haven't heard anything. The cardio is calling her as well. Yikes.....what a day!

Thanks for listening! :o

Laurie

[momof5]

Wow Laurie!

How incredibly frustrating this must be for all of you! I think you are right to remember that God is in charge. We are kind of at that point now, figuring that God has a different plan for Graham's treatment, whatever it may be. I am just trying to follow along. It's so hard to not be in charge :p

This must also be very difficult for Josh. I'm sure you are all concerned that something else is going on. It must be scary for him to feel his heart racing and not know why. We will be praying that you have some answers soon.

Katy

[flowerpower]

Hi Laurie,

Glad to hear everythings normal so far - I understand how much anxiety Josh must be going through with all this. If Josh is unable to donate blood for himself, perhaps you, dad, or other family members who may share the same blood type as Josh can donate for him? Just an alternative -

Renee

[lnetzer]

It makes me feel better to know I've got other people to talk to about this. I was very gung ho at first with everything and now I don't know what to do. The Red Cross refused already for either of us to donate for Josh, they said it had to be his own as that is what the doctor requires. We are all the same blood type so I don't understand that. Hopefully once the results are read from the ultrasound of Josh's heart tomorrow we will know more.

Thank you for your prayers. I know God is in charge and it is hard not to want to take control.

Laurie

[flowerpower]

Hi Laurie,

I know all these little setbacks can be frustrating, you just have to keep plugging along. When it came time to donate blood for Joe's surgery (this was through our local blood bank), the doctor indicated on the form for autologous (Joe) and directed donor (me & hubby). Joe almost wasn't able to donate for himself b/c of a recurring strep infection and he had to be off all medication and virus-free at least 24 hours before donating. We had to get clearance from the (blood center) head director also before proceeding with Joe's donation. They are and have to be extremely careful, which is a good thing. Anyway, I wonder if Josh's doctor would/could put in a new request so you would be able to donate. Maybe this would ease (even a little bit) some the anxiety Josh is feeling. These kids have to go through so much already :( Please let us know the ultrasound results as soon as you're able.

I hope and pray everything will be alright. You are right - God is in charge. Keep up the faith and look to Him to help guide you through this.

Take Care,

Renee

[LeaEvelyn]

Hi Laurie,
I hope things have gotten quieted down some in your life. Hey, how old is your son? Mine was thirteen when he had his scoliosis surgery done. I looked into donating his blood through the Red Cross too. But they had so many restrictions, that it would have made it very diffucult for us. We ended up going right directly to the hospital where the surgery was to be. This made it easier for us. It was a four hour drive both there and back. But we found it well worth it. We had no problems, he had to donate two units of blood. We went every other week, with the final donation two weeks before surgery.
We were real hesitant to have this surgery done also. He had so many more years of growing left to do. Our doctor reassured us. He said that any growth in his spine (which wouldn't be much at his age), with the degree he was (57*) would not be height. His spine would only twist more. He gained two inches from the surgery, and has grown almost two inches more since the surgery was preformed last year. Please keep us informed on your progress, OK. I hope things are working out better for you. God Bless, and Take Care.
LeaEvelyn

[flowerpower]

LeaEvelyn,

What was your son's Risser measurement at the time of his surgery? Have you noticed any rotation/rib hump returning since his surgery?? When my son had his surgery his Risser was still 0, but his curves had rapidly progressed by the time of surgery. They were at 49T/44L when we scheduled (July 05), progressed to 60T/53L by surgery date (Dec. 05). In the 4 months since his surgery he has grown even more and it seems to me his rib hump is becoming more prominent again. We don't go back to see the dr. til mid-June and this has me really down and worried. Just can't bear the thought of another possible surgery if this creates a problem.

Renee

[lnetzer]

Hello! We had the ultrasound of Josh's heart done last Thursday and got the results within 2 hours. It pays to go to the big city :) His heart is completely normal and healthy. The doctor said it is stress and anxiety that is causing the rapid heartbeats as his heart rhythms are all normal, too. So at least we got that good news! BUT, I rec'd a call from the surgeon's nurse on the way to the ultrasound appt. and they rescheduled surgery for July 10! She said they wanted all of the info on the heart business first and even with that there wouldn't be enough time for him to donate his own blood. I'm going to call and ask about the parent donating again, too. So more waiting will likely cause more stress/anxiety, but what do you do? I just don't understand as they were very rush-rush when he was first diagnosed that we needed to have this done right away, etc. I do have faith in his surgeon, though, she is very thorough with all she says and does. I think now that he won't miss the end of the school, he might be missing the beginning of the next as school usually starts where he goes in WI about September 1st.

Just wanted to give everyone an update....by the way.....how do I find out what a Risser score is? We were never told anything like that.

Laurie

[flowerpower]

Hi Laurie,

I'm so happy and relieved for you that there are no problems with Josh's heart!
Bummer that the surgery date has to be put off again, but think of it as more time to prepare, mentally and physically. It's surprising how quickly these kids heal from surgery, Josh may be able to make it to a class or two or half days by the start of the new school year. If not, he could probably be tutored until he is able to attend class.

A Risser measurement - when looking at an x-ray, the area in the hip bones of children are open. As growth occurs, this area closes up/fills in. When you dr. looks at your childs x-ray, they can estimate how much growing is left by looking at this area. A measurement of 0 will indicate there is quite a bit of growing left, a measurement of 5 indicates growth is pretty much complete. Hope this was helpful.

Take care,

Renee

[LeaEvelyn]

Hi Renee,
Shane's risser sign was "0" at the time of his surgery, he was only thirteen years old. He still has somewhat of a rib hump going on too. It is more noticeable when he is bending forward. I'm sure your son is fine. I was told that if they fixed the rib hump and shoulder deformity, it would be a harder recovery, so we opted not to have this done to him. Hope this can reassure you that your son isn't the only one with this same problem.
Take Care
LeaEvelyn

[flowerpower]

Hi LeaEvelyn,

We also agreed with our surgeon to not do a thoracoplasty, we felt the least invasive, the better. It just seems to me the rib hump wasn't as prominent post-surgery as it is now. I know there was only a 50% correction of the rotation, and the way the dr. explained at our last appt. the shoulder blade was still settling over the ribs. I'm just worried that with this latest growth spurt the spine is trying to rotate more. It's probably just me, Joe seems ok, not complaining of any pain or anything.

Take care,

Renee

[LeaEvelyn]

Hey Renee,
Check out this page www.spinekids.com/shane.shtml. It is Shane's story of his surgeries and recoveries, but we also have before and after surgery pictures posted at the bottom of his story. Maybe this can reassure you. Hope this helps.
Sincerely,
LeaEvelyn

[flowerpower]

Hi LeaEvelyn,

Thanks for directing me to Shane's story-he sure has been through alot! He sounds like a very mature young man and seems to have dealt with it well. The pre-surgery pics are very similar to what Joe's back looked like. His (Shane's) back looks great now though, so nice and straight! Thanks for sharing -

Renee

[momof5]

Hi Everyone!

I'm a few days behind here. It's been a crazy week!

Laurie - I'm so happy to hear about Josh's heart being okay. What a great relief that must be! It sure is nerve-wracking to keep having to change things, though. Just remember God has a reason even if we don't know what it is. Hope everything goes more smoothly from here on out.

About the rib hump - the last surgeon we went to told us that it was basically a separate operation and purely cosmetic. Meaning that he would not automatically take bone from the rib (as the first dr had said) unless we requested it. Although my friend who had fusion surgery 20+ years ago elected to have a second surgery for her rib hump because she said it hurt to sit on a hard chair as her shoulder blade would hit the chair. So, who knows????

Anyway, hope everyone is enjoying spring and doing well. Laurie - keep us updated on Josh.

Take Care
Katy

[LeaEvelyn]

Hi Renee,
Your welcome. If you ever need anything else, just let me know. Keep us posted on how Joe is doing, ok.
Sincerely,
LeaEvelyn

[lnetzer]

Hi everyone! We are going to our first blood donation form our newest and hopefully last (!) surgery date tomorrow at noon. Wish us luck that Josh doesn't get rejected again!

Laurie

[LeaEvelyn]

Dear Laurie,
Lots of luck, luck, luck, luck to you both. See, if I say it enough, it will come true!! You's will be in our prayers!!! Hope everything works out ok.
Sincerely,
Lea

[flowerpower]

Hi Laurie,

Hope everything goes well with the blood donation. How is Josh doing these days? You?

Renee

[lnetzer]

Hi everyone! Well, we were rejected again yesterday :( :( :( I just want to cry, this is so frustrating, especially for Josh. He was so psyched and ready to go, and he met all the qualifications with his heartrate, blood pressure, iron levels, etc. and then they asked if he was on an antibiotic. He'd had a sinus infection exactly 2 weeks ago, and took his last pill on Wednesday night. That got us rejected. I couldn't believe it. Had I known (our doctor said it would be fine, and when I told them that they got all snotty and said "he doesn't know what our requirements are!") I would have completely skipped the last dose as it would have been fine if he'd been off them one full day. Now I got a call from the administrator of the Red Cross in Madison, WI, saying I also need a letter from his cardiologist saying he's clear to donate anyhow. Am I really being dense and not seeing the signs that I shouldn't do this surgery? Help! I'm doubting more every day, and with Josh having lost a 1/2 inch from March to May, in my heart I know he needs the surgery, but my brain is on overload with doubts.

Well, thanks for letting me vent! I do appreciate everyone asking how we're doing. It really is one day at a time and I don't know what to do in case of one more road block. My husband will be able to donate one unit for Josh, but they need 3, and Josh has to give his own for that donor bone thing they do, I think. :confused:

Laurie

[flowerpower]

Laurie,

Sorry the donation got put off again, I can imagine your frustration! We dealt with this issue also when Joe gave blood for his surgery. His first donation got put off b/c he was still on antibiotics for a recurring strep infection. Our dr. thought it would be ok also b/c they pump them up with antibiotics during surgery anyway but.....our donation center also told us they have very strict requirements. The nurse told us if Joe gave blood while still sick/on antibiotics there was a chance the bacteria could grow during the time it was stored and it would be like giving him a "bag of bacteria". That was the lovely way the nurse described it. It now makes sense to me b/c I'm sure the reason for the 1st recurrence of strep was due to the fact Joe may have missed or taken late the last couple of anti-b pills.

When we went back a week later (and 1 week prior to surgery) Joe had just finished taking his last anti-b pill the morning before donation and that was borderline for the donation people. They were going back and forth on whether or not they would let Joe donate and spent a long time on phone with the head director before they finally let him go through with donation.

He only ended up donating 1 unit instead of 2 but that was ok, during surgery they didn't end up needing the blood, just gave it to him at end of surgery to give him a little "boost".

I'm sure once you get the letter from cardiologist Josh should be ok to go through with donation, and it's ok to donate a week prior to surgery. Hang in there Laurie, I pray things work out ok by surgery date.

Sorry for the long post, just wanted to share our similar experience.

Renee

[lnetzer]

Renee:

I am so glad to know there are others in our situation that have been there. I am praying it goes well when we go again on Thursday, and that my husband will be able to donate as well. (I have an inherited form of anemia and am excluded from ever donating) It's a relief to hear that things worked out on your end and I pray it is the same here!

Yikes! A bag of bacteria! That makes me feel better they didn't do it, either! I like those nurses that are so matter of fact! lol

Thanks again for the support!

Laurie

[flowerpower]

Hi Laurie,

Just wondering how the blood donation went yesterday...........

Renee

[lnetzer]

Hi Renee:

Thanks for asking.....it was a no go for both of them. I couldn't even believe it. I just wanted to go home and go to bed, I was just literally sick to my stomach. Pete's iron was low, and he's been taking the iron pills for a week, and Josh had a temperature, first 3 degrees above, and then 1 degree after waiting a few minutes, of what they allow. Unbelievable. We're trying again next week for both of them, and then Josh's last one will be the last Thursday in June and then that's it.

Laurie

[flowerpower]

Laurie,

I know this is easier said than done but.......try not to get too discouraged. There is still time to donate, keep up with the vitamins, healthy diet, exercise. Make sure Josh gets plenty of rest. I pray things are better by next week.
Take care -

Renee

[lnetzer]

Hi everyone! Today was the day....Josh and his dad both were able to give blood. We go for the pre-op on Tuesday now, and then Josh needs to give one more unit on Thursday and then we have to go to another doctor appt for the primary doctor on Friday. This was such a relief today! Thanks to everyone for listening and being so supportive over the past months.

Laurie

[flowerpower]

Laurie,

Glad to hear the donation went ok. Its a relief to get that done and know your child will have their own blood to use if needed. I hope things continue to go smoothly from here on out. :) Take care,

Renee

[LeaEvelyn]

Laurie,
Good luck with your pre-op appointment tomorrow. After seeing your surgeon, I'm sure he'll put you at ease. He'll probley talk to you about his plan in the surgical room. How long it will take, which vertebra's will be fused, ect. I'm so happy they finally let you's donate blood. It can be so fustrating waiting for the surgery date as it is. But when things are held up for one reason or another, it makes it doublely nerve racking. Now at least you can rest easy, if Josh needs blood, he'll have his own. Best of luck to you's. And please keep us posted on his recovery, ok.
Sincerely,
LeaEvelyn

[lnetzer]

LeaEvelyn:

I can never think of anything catchy to put in my title :p lol

Thank you for your thoughts. I just popped online to check for any additional questions I should ask and was glad to hear from you. We're pretty prepared, I'm hoping, but it can't hurt to double check.

One more out of town trip after tomorrow for the blood donation. Did you ever hear of that EMLA cream that you can put on your hand so it's numb for the IV? When we did the hospital tour they told us to mention it to our doctor.

I'll keep everyone posted!!

Laurie

[lnetzer]

Our appointment went very well today. The doctor had to have more x-rays done just to see if there was any progression since late January. Everything looks to be the same. She answered all of our questions, I think we were there just over an hour today. She checked Josh out and had him bend around for her but otherwise that is about it. I can't believe his surgery is in a little over a week. She did say that even if Josh has a slight temp or anything the night before, no matter what has to be juggled around, she won't do surgery.

Just an update!

Laurie

[lnetzer]

It looks like everything so far is a go. Josh donated his 2nd and final unit of blood yesterday, and then we had to go to the hospital where he's having surgery and fill out mounds of paperwork and give more blood. There was a nurse on that floor that worked in the peds unit where the kids would be after surgery, and she was very helpful and told us every single thing of what to expect. And she didn't sugarcoat it, either. I think Josh was kind of shocked a few times, but it is what it is, as I'm sure everyone who's been thru it can attest to. We have our final pre-op today with his primary doctor in town. I can't believe it's coming so soon, it seems like we'd never get here. I just want to thank everyone so much for your support and the wealth of info that I've found on here. :)

[LeaEvelyn]

Hi Laurie,
I'm sorry it has taken so long for a reply from me. Did you ever get to use the ELMA cream? Shane had used that before. It was when he was little, and had to have a blood test done before he had tubes put into his ears and tonsels removed. It worked wonders for him.

It doesn't seem that long ago and we were in your shoes. Time sure goes fast once your on the other side of surgery, and the worries are much less. Shane just had his 15 month post op check-up this past Thursday. He made out wonderfully, everything is staying as it should, nice and straight, horayyyyyyy!!!!!! But you know what? Even now, it was still nerve racking waiting to see his x-rays and his doctor. But they looked wonderful. I always get nervous waiting, old habits die hard I guess.

You'll be in my thoughts and prayers for a successful surgery for Josh and a speedy recovery too!!! Good Luck with everything, and if you ever want to e-mail me directly, let me know and I'll get you my e-mail address, OK.
Sincerely,
LeaEvelyn

[lnetzer]

LeaEvelyn:

Hello! It really does help to talk to people that have been in my shoes and have come out of it with a good story to tell. I'm still just worried sick about it and hope I can get thru this week without going crazy. It helped seeing the doctor and having her answer our questions, but when it's your child being cut open, it's just so hard, as I'm sure you know. I would love your email addy, if you want to send me a private message or however. I would greatly appreciate having the support if you've got the time :o

We did get a prescription for that emla cream stuff, and the doctor gave us some patches to put over it. They said do it once you get to the hospital. When we did our pre-op blood testing, etc. that day at the hospital, they also said the surgery was 8 hours. I'll have to ask the doctor on that as she originally said 5-6 hours and that she'd need all of that. I'm wondering if they're counting recovery room?

Thanks for listening again!

Laurie

[LeaEvelyn]

Hi Laurie,
I tried to send you a private message, but it kept coming up that it didn't reconize your user name. I don't know what I'm doing wrong. I just wanted you to know that you may reach me at llentz5525@yahoo.com. I'm from Michigan. And my son had his spinal fussion done at age 13 too. He is doing wonderfully now.

When the hospital called us to confirm his surgery date, they had him set up for a six hour surgery. Our surgeon told us it would take him about four hours to complete. With his second surgery, it was the same, the hospital had him down for a six hour surgery, but the doctor told us it would take him about two to three hours. So I assume, the hospital must book the room for longer than necessary, just in case something happens to make the surgery run over.

Please send me an e-mail if you need me for anything. Remember, I been through this exact same thing not too long ago. You take care, and give my best to Josh.
Sincerely,
LeaEvelyn

[lnetzer]

Josh is in surgery right now. They took him in around 7:45 and the nurse came out a few minutes ago to let us know that so far everything was going smoothly.

Thank you everyone for your thoughts and prayers!

[LeaEvelyn]

Hi Laurie :) ,
I'm sure things will go smoothly for Josh. Please keep us posted on his progress, OK. My thoughts are there with you!!! Take care.
Sincerely,
LeaEvelyn :o

[scoliosisrehab]

Hi there Laurie. My name is Nicole. I am posting in regards to your second question, about there being any successful non-surgical approaches (i.e. exercise/physical therapy) to treating scoliosis. Yes!! In countries such as Germany, Israel, Spain, and now the U.S. there is a highly accepted form of exercise treatment of scoliosis called the Schroth Method. It began in the early 1900's and has evolved into a radically successful way of re-training your body to accept a new, correct posture. It address all aspects of scoliosis; both physical and emotional. Such as breathing diffaculty, pain/numbness/tingling due to uneven forces on the body due to curvature of the spine.. it also address the mental stress that comes from the asemetrical nature of scoliosis. It gives the patient a level of control over their scoliosis that surgery cannot.

You probably have not heard of this method of treatment before. This is because it was introduced in the United States a few years ago. However, the physical therapists that I can direct you to have been trained by doctors overseas who see patients rapidly. In fact the waiting lists to be seen in Schroth Clinics over seas can be months. That's how widely accepted this method is in other countries.

Please write me back with any questions. I would also like to add that I myself have 3 curve scoliosis and can relate to the challenges that your family is facing in chosing a treatment. I know that waiting and seeing, bracing, waiting and seeing, spinal fusion surgery was not enough for me.

Thanks, hope to hear from you soon.

[momof5]

Hi Everyone!

I just wanted to check in. I have been out of touch lately. We have had a crazy month including getting a new computer, so I have been trying to get everything transferred from the old one.

Laurie - I hope everything went well with Josh's surgery. I was thinking about you even though I couldn't post just then.

Hope everyone else is doing well. We are trying something new with Graham. We went to a physical therapist here who has created a whole program for treating scoliosis, including special equipment and everything. It's called Pneumex, some of you may have heard of it. Our original therapist said he wasn't sure how proven this system was which is why we didn't try it originally. However, once the surgeon said that Graham may not have to have surgery, we decided to try it. What have we got to lose (except quite a bit of money since our insurance doesn't cover it)? He has been going for about 6 weeks and they have corrected his "lean", the amount his spine leans forward, by 6 degrees. So, we will see how it goes from here.

I will try to keep up with everyone from now on!

Katy

[lnetzer]

Katy:

Hello! I've been not quite as active on the board myself. Josh keeps me pretty busy! As of Monday we are 3 weeks post op. It was the hardest thing we've ever done, but seeing Josh stand up straight and tall that first day after surgery, I had to bite my lip to keep from bawling. I never thought we'd get to this point after all the setbacks we experienced. If there had been another way to have done this, I would have, but we just didn't have any other options. Pain management was an issue when we first got home, and at our 10 day post op appt that was taken care of and Josh is doing wonderfully well. He gained almost 3-1/2 inches in height. All in all we still have a long road ahead of us.

I wish you very well with Graham's treatment and hope it continues to bring you success!

Not sure what the post op curves are but we will find out soon!