What's gonna happen?

[swimbum]

Hello people on NSF forum lol, this is my very first post and I have a question. I currently have a 50 degree thoracic curve and a 40 degree lumbar curve. The past two times we have come in my curve as jumped 10 degrees each time, the doctors had stopped bracing me because they said i was almost done growing and about 8 months a go i only had a 30 degree curve. My doctor doesn't have a clue at wat is making it jump so rapidly, and that sort of concerns me. Has this every happened to any of yall, and wat are the chances that my curve is going to stop progressing?

[Sherie]

My daughter's curves jumped dramatically between the ages of 12-14 (puberty age for most girls) but seem to have stabilized the last 6 months. I know guys are different as far as their growing patterns, have you recently grown some? If you're doctor can't give you an answer, don't hesitate to seek another opinion. Make sure you're going to a reputable scoliosis specialist.

[vndy]

How much time passed between each appointment? I agree with Sherie - find a talented doctor who can figure this out. In my opinion, "I don't know" isn't a good enough answer when you see a professional.

[swimbum]

Um between each appt. it was almost 4 months...Im actually shrinking...I was like 5'8" and 3 quarters but now im exactly 5'8" . Can this be from the curve getting worse? I had an MRI done in the past to test and see if there was something that caused my scoliosis but they found nothing. My new doctor, after I moved to Illinois, insisted that we go in for a second time to see if they can find anything (like spinal fluid or something like that). Has anyone had that kind of problem before with spinal fluid...gross?

[scoliboymom]

I agree you may want to get at least one other opinion. My sons curves increased drastically like yours from 58* to over 80* at time of surgery 10 months later. He was 15 at the time of surgery and he was growing quickly but still had a lot of growth left. Is it possible you may have been going through a last growth spurt over the past 8 months and that is why your curves increased a lot.
My son didn't shrink during this time, he stayed exactly the same height even though I know he was growing. The extra height was taken up in the curve.

[Sherie]

It sounds like he was checking for a chiari malformation. My friend's daughter had one, it's a pocket of spinal fluid that builds up in the the spinal canal and can cause scoliosis. If you're MRI didn't show anything, you probably don't have it. A progressive curve can definitely make you lose height, my daughter lost some height over this past year. So maybe you did go through a growth phase, but the worsening curve made it appear that you didn't, make sense? It sounds like you're doctor is searching for answers, does he want you to go for another MRI?

[Joss]

14 year old boy pending surgery

It's so good to see a teen boy on this forum.

My 14 year old son (15 March 31)was diagnosed a year ago November with a 27 degree curve. He was put into and wore (off and on) a Boston brace starting in March last year. He was not seen again until this November and his curve was already at 47 degrees and his rib hump is getting much much worse. He was told by the doctor to give up the brace and a surgery consult appointment has been made for February.

A few of things:
He has extreme pain to the point of stopping him from activities (thankfully he isn't a team sport kind of guy)
This pain has caused depression and suicidal thoughts.
The doctors swear the scoliosis does not cause the pain.

No mri was offered, no follow up appointments at 4 months (like I have read about here). No ref for real physical therapy. No real treatment for the whole child overall.

We are in the Kaiser system in N. California. This system tells us surgery now, but I talked to Doctors at UCSF and they won't do surgery until 50 degrees.

Does anyone have experience dealing with any Kaiser across country?
If so were you able to get a off plan second opinion?
Do you need to wear a brace after surgery? For how long.
What's recup time like?
Anyone do the Browning Miller Yoga and have you heard of the Schroth PT Method?
And a thousand other questions???
Joss' Mom
Gail

[Geish]

Joss's Mom Gail:

We are in the Kaiser system in N. California. This system tells us surgery now, but I talked to Doctors at UCSF and they won't do surgery until 50 degrees.
Joss's Mom Gail:

Does anyone have experience dealing with any Kaiser across country?
If so were you able to get a off plan second opinion?
Do you need to wear a brace after surgery? For how long.
What's recup time like?

Joss' Mom
Gail

I just had surgery at Kaiser Sunset in Hollywood. My Dr, Dr Ganocy was wonderful. My middle curve was at 60* when I first saw him in May 07. At that time I was told I could have the surgery at anytime over the next 5 years. I opted for sooner rather than later due to my age. I was treated very well both in and out of the hospital. All of my durable medical supplies were covered including a hospital bed at home for 3 months post op. I just had them pick that up today as I am sleeping in my own bed again.

I never asked for a second opinion because I knew that my curves had progressed so much over the last three years and were only going to continue to worsen over time. I am in a brace for 4 months total post op due to the length of my fusion. It is precautionary and well worth wearing as far as I am concerned. As long as my fusion takes I will be out of the brace at the middle of March.

During my hospital stay I was allowed to have my 19 year old daughter stay with me. The nursing staff was very attentive and caring. I have had great after care at my post op appointments too. I see Dr Ganocy in 2 more weeks and will find out then if I can put my brace on after I get out of bed instead of have to put it on before I get up.

It appears that I am recovering ahead of schedule. I was off of the heavy narcotic at 13 days post op. I had gone to the gym for 3 months prior to surgery to get in the best shape I could be in as I prepared for surgery. I think that has really helped with my recovery. I am not in pain per say as much as I ache. I was surprised at how little pain I actually suffered after surgery. Really just the first 3 days or so and then it was really more like an overall achiness.
I would be happy to answer any questions I can regarding Kaiser. Feel free to send me a PM.
Good Luck,
Alicia

[samsmom]

In response to Joss's mom

Hi Joss's Mom,

My daughter has had pain with her scoliosis all along. Many doctors don't think they have the pain, but sometimes she is just miserable when she stands for a long period if time. (She is 16 and a 54 degree curve). She was braced for about 2 1/2 years starting at when she was a 24 degree and yet she still progressed and she wore it faithfully 23 hrs a day.

It seems that doctors won't consider surgery until they hit the 50 degree mark.

We just alternated between tylenol and motrin when the pain got too unbearable and I would take her for a massage every once and a while. That worked wonders.

Typically, there is no bracing needed after surgery because technically they are then braced from the inside.

Best of Luck,

[BETall]

It's so good to see a teen boy on this forum.

My 14 year old son (15 March 31)was diagnosed a year ago November with a 27 degree curve. He was put into and wore (off and on) a Boston brace starting in March last year. He was not seen again until this November and his curve was already at 47 degrees and his rib hump is getting much much worse. He was told by the doctor to give up the brace and a surgery consult appointment has been made for February.

A few of things:
He has extreme pain to the point of stopping him from activities (thankfully he isn't a team sport kind of guy)
This pain has caused depression and suicidal thoughts.
The doctors swear the scoliosis does not cause the pain.

No mri was offered, no follow up appointments at 4 months (like I have read about here). No ref for real physical therapy. No real treatment for the whole child overall.

We are in the Kaiser system in N. California. This system tells us surgery now, but I talked to Doctors at UCSF and they won't do surgery until 50 degrees.

Does anyone have experience dealing with any Kaiser across country?
If so were you able to get a off plan second opinion?
Do you need to wear a brace after surgery? For how long.
What's recup time like?
Anyone do the Browning Miller Yoga and have you heard of the Schroth PT Method?
And a thousand other questions???
Joss' Mom
Gail

You can send me a PM. I own a 75º scoliosis, practice the Schroth method and as a result I am pain free.

[swimmergirlsmom]

My daughter has begun Schroth treatment/exercises. If you would like to send me a private message, I'd be glad to share what we've learned so far. Her curves are 48-T/35-L and she has no pain.

[Mom37]

rapid progression

There can be many other medical reasons or just scoliosis rapidly progressing. It took a third opinion for us, so definitely do not hesitate for a second opinion if needed. Go to a qualified orthopedic and I preferred a pediatric one. I went to 3 pediatric orthopedic surgeons and finally the last one at Texas Scottish Rite did an MRI to rule out spinal cord issue, but it was actually that. My daughter's rapid progression of curve of spine was scoliosis due to Chiari I. It is basically a spinal cord issue, spinal fluid pockets from fluid restriction, see www.asap.org if needed. There may be nothing, and it would depend on your son's history. My daughter had no medical history but the rapid progression and high right thorasic curve made them check after 9 months-6 months in brace. Well I wish you the very best. Do whatever you think you need to. The other doctors didn't think to check for spinal cord issue, but it took time to get further help.

[Jennybear]

I just had surgery on May 21st. I haven't taken any pain meds since last Wednsday and I feel great with no pain. I don't even think I was ever in extreme pain. I'm 14 and my curves were around 70, around 50, and around 40, but we didn't do the 50 degree curve and it is now at 16 without correction and I'm not sure about the other 2 but i go for my 4 week check up Thursday. I don't wear a brace and I never did.

If anyone is considering surgery I'd suggest doing it while you're young because in my experience you bounce back quick. I just fiund out I had scoliosis last August so this is all going sooooo fast but the surgery was the best thing I could've ever done.

[ARN010]

Daughter post-surgery 49° Curve

My little Amanda just had surgery 3 weeks ago last Wed. She's doing great. She gets a lot of rib and shoulder pain but that is to be expected (no pain prior to surgery) with a 100% correction!! Anyhow, she progressed as follows:

Age 6: 26 degrees maintained with brace (had 2 made over the years) until Age 9: 33 degrees (Oct 2007)
Age 10: 49 degrees (Mar 2008)

The time between 33 and 49 degrees was 5 months; that is a progression of 16 in 5 months or 16/5 which is 3.2 deg average per month.

She had an MRI to look for chiari but none were found.

She had surgery on 5/21 and is 100% corrected. The first two weeks were very difficult but she can be up and about for about 4-5 hours now. Her scar looks great and her back looks beautiful. The surgeon did a beautiful job. I am glad we did this (now that I am on this side of it); I was VERY SCARED prior to surgery and for at least a week after. I had numerous people tell me stories of parents who waited and then there were heart and lung problems; pain; and more difficult recoveries at older ages. I have heard no bad stories (yet) about the surgery and have met numerous folks who have rods and screws and bone grafts.

Here's what I do know, everyone is different and it is always a good idea to obtain a second opinion. My daughter was healthy and in no pain other than the severe curve. It is very difficult to make a life altering decision on behalf of someone else so I studied as much as I could using medical journals and consulting with experts and other patients and patient families. This forum proved quite useful as well (actually, you all helped IMMENSELY). Good luck with whatever you decide.

[Jenlw]

Back when I was 14 (which was awhile ago) I was taken out of my brace because I was done growing. I can't remember how many months went by, but I do remember it wasn't very long before my curve shot up to 52 degrees.