PDA

View Full Version : Suggestion for 13-year old



tkrame01
07-07-2008, 02:54 PM
I haven't been to the forum for quite some time. My daughter was initally diagnosed with a 26 degree curve a couple of years ago. She is now thirteen. We have been watching her (no bracing) and in March when she returned for more xrays her curve had progressed to 40 degrees. Her orthopedic surgeon wants to see her back in March of 2009 because she will basically be done growing by then. However...within the last two months or so we have seen a change in her spine. The curve looks worse to us and she cries that her back hurts. I've even noticed she is using pillows to sit and a bunch of pillow to sleep. When I tell her maybe we should take her back to the orthopedist, she gets upset with me because I think she is scared of what may come next. SHe has a left thoracic curve. We've even noticed her shirts fitting differently. Is it ok for me to wait to take her back to the doctor if I think the curve has progressed, possibly quickly over the last couple of months? Am I making things worse for her if we agree to wait? I just want to do what is right and try to make her happy at the same time.

any suggestions would be very helfpul.

Worrisome mom

christine2
07-07-2008, 03:15 PM
Has your daughter had an MRI?

tkrame01
07-07-2008, 03:17 PM
Yes, she did have an MRI initially upon her diagnosis. Sometimes I get worried that they misread the xray when I hear stories of how rare that type of curve is, but they say that they found nothing, other than the scoliosis. Do you think I should ask that the xray be re-read?

christine2
07-07-2008, 03:20 PM
The left curve is unusual however not unheard of. Have you had a second opinion? We saw 3 doctors before deciding our course of treatment. I do think waiting is risky.

tkrame01
07-07-2008, 03:25 PM
We have not asked for a second opinion yet during her course of treatment since we really have not delved into surgery as of yet (then I will get a second opinion). And, there aren't any other orthopedist's in my area. She is adamant about waiting until March but I just think that is too long given what changes she has recently has. I too think waiting that long may be risky. Thanks for the note.

bas2101
07-07-2008, 04:19 PM
Hi-

My daughter, also 13, had a curve at initial diagnosis (at age 7) of 40 degrees. Any and all orthopedists we visited had the "watch and wait" approach. We, however, did not wait, we did numerous "alternatives." However, we also did not watch, meaning we avoided x-rays at all costs. Yet, over the past year I visually noticed her curve had progressed. When we got new x-rays, it was 68 degrees! I freaked, cried, you name it. She also had a lot of pain. A curve can rapidly progress, especially during the pubescent growing years. However, I am still not sold on surgery, at least not yet. We immediately took our daughter to Scoliosis Rehab Inc. in Wisconsin for a 2 week intensive program (4 hour a day). We also got her a Rigo Cheneau Brace, which she wears 22 hours a day. It has been 3 months in the brace, while doing the Schroth exercises 5 times a week for 45 minutes. Her pain is done while in the brace, and she looks so much more aligned (really, like a different back). She has also gained 1 3/4 inches in 3 months. It is a big commitment, but my daughter does not want surgery, and so she is following through. She also flat out refuses to go to see an orthopedist-I do not blame her. If you want to lessen the emotional pain for your daughter, you could try what I have been doing: get the x-ray, and then take it to the orthopedists without her present. Some people think I am being too over protective, but while my daughter is doing everything she can to try and correct/stabilize her curve, she does not need to hear the voice of discouragement and fear. She knows that she may need surgery, but she does not need to hear it every time an opinion is needed. The Physical therapists at Scoliosis Rehab Inc. are amazing. They will give you great hope and encouragement. Their exercises have helped many kids with scoliosis. Also, have you had an MRI? If not, demand it. I also think it is worth visiting a pediatric neurologist. Ours was much more thorough than any ortho we saw, and shed some light on the reality of spinal fusion-not a simply procedure. How does your doctor know that your daughter will be done growing in March 2009? Do you know her Riser sign? My daughter's Riser sign is 0, which is bad because she has so much growth left, and good because her spine is still very flexible (has potential to reduce some). Is you daughter braced? Go with your instinct if you feel her curve has progressed-you know best-get it checked and then do something fast. She could very well be in the height of her growth spurt. And, do not let any ortho scare you to death-they are quite good at that.

bas2101
07-07-2008, 04:27 PM
PS-I see that you have had an MRI. You could get someone else to read it. I myself had an MRI that upon initial reading, was negative. On the 2nd reading, positive. If an ortho is adamant about something you disagree with, either get another ortho, or have your pediatrician write a prescription for the x-rays, and then get them done on your own. Take the x-rays to your ortho and have her read them. Or, get copies and take/send them to another ortho for another opinion. We have seen 4 orthos, 2 neuros, 5 different physicians,and numerous "alternative" therapists. Do not stop until you get what you need. If insurance is an issue, there are children's hospitals that help in that area. If I had listened to the first ortho that we visited, my daughter would now have had god knows how many surgeries with growing rods, since the age of 8 years. Do not let the ortho dictate your decisions.

ElleBelleCurvz
07-07-2008, 09:02 PM
I personally find waiting stupid.
I'm not at that point yet.
But if shes hurting that bad, and she only doesn't want to go because she is afraid of whats next...well imagine what will happen if you DONT. It'll be worse for her in the long run. I know I would never expect my mom to agree with me if I wanted to wait. It's scary but less risky if she does it with a smaller curve and at a younger age. But that's you and your daughter's choice. I agree you should at least get an MRI. Plus, no one said that just because her doctor tells her she SHOULD get surgery that she WILL , it's still her choice. But whatever you do...don't say we didn't warn you. It's just a safer bet to be a parent and make her go like she should be anyway.

Oh, and don't be afraid of what your daughter may say she should still be open for her well being to at least see if surgery is even necessary at the moment. And march is WAYY too long. HOw often do you go???

Shelgrl66
07-07-2008, 09:32 PM
I haven't been to the forum for quite some time. My daughter was initally diagnosed with a 26 degree curve a couple of years ago. She is now thirteen. We have been watching her (no bracing) and in March when she returned for more xrays her curve had progressed to 40 degrees. Her orthopedic surgeon wants to see her back in March of 2009 because she will basically be done growing by then. However...within the last two months or so we have seen a change in her spine. The curve looks worse to us and she cries that her back hurts. I've even noticed she is using pillows to sit and a bunch of pillow to sleep. When I tell her maybe we should take her back to the orthopedist, she gets upset with me because I think she is scared of what may come next. SHe has a left thoracic curve. We've even noticed her shirts fitting differently. Is it ok for me to wait to take her back to the doctor if I think the curve has progressed, possibly quickly over the last couple of months? Am I making things worse for her if we agree to wait? I just want to do what is right and try to make her happy at the same time.

any suggestions would be very helfpul.

Worrisome mom

Could you please tell me why this doctor has not recommended bracing in the interum? It sounds like she needs a second opinion...Not for him to wait and do nothing so by then he can just recommend a spine surgery. That is definately not an answer.

1981-Harrington/Luque instrumentation T9-L5 for 30 degree thoracolumbar curve. Dr. Shufflebarger
1990-Revision surgery-Broken hardware/flatback deformity/pseudoarthrosis-Cotrel Dubousett instrumentation with extension into sacrum. (never done correctly) Dr. Shufflebarger
1995-Revision surgery-Severe flatback deformity/kyphosis-Moss Miami instrumentation (T5-sacrum) with titanium cages (back/front/back procedure), thoracoplasty, total reconstruction with osteotomies. (surgeon did surgery while coming down with chicken pox and developed encephalitis with brain damage, etc during 14 hr surgery) Dr. Shufflebarger
2005-Car accident-spinal cord injury/myelopathy from top of rods/hooks at T5. Surgery to remove hardware, with exception of cages. Permanent damage. Dr. Campbell
2008-5th surgery pending for severe stenosis in cervical spine, as well as lumbar spine because of prior surgeries.

txmarinemom
07-07-2008, 09:37 PM
Danielle's right.

Waiting until March is ridiculously long for a curve that currently measures 40, especially when she's already in pain. It does NOT generally get better, and you are very close to losing the treatment options you have for her - short of fusion.

I'd seriously consider a second opinion. Are you seeing an SRS doctor?

Best of luck to y'all - and don't be afraid to put your foot down (with your daughter OR any ortho!).

Regards,
Pam

mariaf
07-08-2008, 09:13 AM
Hi Worrisome Mom,

I'm chiming in a little late here, but I agree with what everyone else has said and you've gotten some very good advice thus far. Now my two cents:

First, you need to take action and NOT wait (regardless of how your daughter feels - she is not old enough to understand the magnitude of the situation).

I am NOT trying to give you a hard time or chastise you for taking her feelings into account - NOT AT ALL - I have a 17 year old daughter myself so I know exactly where you are coming from and I feel for you and your daughter tremendously. The problem is that waiting could do a lot of harm. My grandmother used to have a saying that has helped me immensely with my kids at times like this - she used to say to her kids when she they would not be happy with her actions: Better you cry now than I cry later.

OK, next - the MRI - yes, I would definitely have it read again. Who read it the first time? If it was the radiologist then I would definitely have a pediatric orthopedic surgeon read it or perhaps a neurosurgeon who can diagnose certain conditions such as chiari, etc. I'm not saying they will find anything but it's worth having it re-read anyway.

Please get a second or even a third opinion. You mention that there are no other orthos in your area. Can you share with us what state you live in? Perhaps there is a Shriners Hospital that is not too far from you. They are fantastic. We go to the one in Philadelphia and they will HELP you get there if you can't travel there on your own.

Hope this helps - and best of luck to you!

ecnw
07-08-2008, 11:44 AM
I've called for appointments when my daughter's back seemed to change, it's not only reassurance that everything is ok, but this way the doctor can monitor what is going on. Growth suprts happen, and they can definitly increase the curve.
You have to remember you are the adult. Your daughter does not fully understand what is going on. A lot of adults can't fully comprehend what their doctors tell them, imagine being a child trying to get it. Ease your daughter's fears, tell her you need to hear what the doctor says but no discisions will be made till later (let the doctor in on this too, explain her fears).
If you can financially afford it, you might consider having a consultation with a doctor in another city in your state or a different state. If you give your location people ere can help recommend someone else. Even though I trust my daughter's doctor we still got a second opinion for course of treatment. He totally agreed with what the first doctor said. It just gives peace of mind.
Emily

debbei
07-08-2008, 12:05 PM
I agree with everyone that waiting till March is not a good idea. I'm also curious why they didn't want to brace her in the interim. These things only get worse on their own, unfortunately, they don't get better.

If it were my daughter, I would bring her to a reputable 2nd opinion asap. This is time you can't get back.

Good luck,

tkrame01
07-08-2008, 03:10 PM
Wanted to say thank you to all of you for your feedback. I have decided to take my daughter for a second opinion and to request that her MRI be read by someone besides the radiologist. We are not waiting until March of 2009 to have her seen either...I will be contacting her orthopedist this week to schedule her a follow-up appointment.

I'm so glad this resource is here!
Thank you.

Shelgrl66
07-09-2008, 01:16 AM
Besides going back to this same doctor, I would most DEFINATELY check with a neurosurgeon, as they know more overall than the ortho doctors (as they are basically just looking at the bones) and orthos tend to want to do surgery, versus the neuros that do it as a last resort. I would also check with another ortho doctor afterwards as well to see if he might recommend bracing in the interim. With something like this you will want SEVERAL opinions. I wish my parents had.

Good luck to you,
Michele

1981-Harrington/Luque instrumentation T9-L5 for 30 degree thoracolumbar curve. Dr. Shufflebarger
1990-Revision surgery-Broken hardware/flatback deformity/pseudoarthrosis-Cotrel Dubousett instrumentation with extension into sacrum. (never done correctly) Dr. Shufflebarger
1995-Revision surgery-Severe flatback deformity/kyphosis-Moss Miami instrumentation (T5-sacrum) with titanium cages (back/front/back procedure), thoracoplasty, total reconstruction with osteotomies. (surgeon did surgery while coming down with chicken pox and developed encephalitis with brain damage, etc during 14 hr surgery) Dr. Shufflebarger
2005-Car accident-spinal cord injury/myelopathy from top of rods/hooks at T5. Surgery to remove hardware, with exception of cages. Permanent cord damage. Dr. Campbell
2008-5th surgery pending for severe stenosis in cervical spine, as well as lumbar spine because of prior surgeries.

tkrame01
07-10-2008, 02:09 PM
Just wanted to say that I spoke to my daughter's orthopedic doctor last evening and expressed my concerns with the change in shape of her curve, some pain she is experiencing, and the fact that I think waiting until March of 2009 is too long.

He told me that you do NOT have pain with scoliosis, so if she is having pain there is something else wrong. Wanted to do an MRI, then I reminded him we have already done that, so long story short - we are to just give her pain killers to help her sit and sleep. Then, he told me that a curve never progresses beyond one degree a month, so at the most, she is at a 45 degree curve (since she was at 40 degrees in March) and nobody will even look at her and think of surgery with a 45 degree curve....and he said that he will see her back in March of 2009!

Needless to say I was rattled, angry, and then saddened. So, I have contacted a neurosurgeon's office today and am awaiting further information from them...plan to take her there for another opinion.

Not that I WANT her to have surgery, Lord knows that is my biggest fear....but I have a very hard time swallowing the fact that the pain means nothing and neither does the change we have seen in her.

I guess when I really think about it, I'm not sure what I'm looking for. Maybe a resolution that just isn't going to be there. Nonetheless, for my sake, I need to have her checked.

Thank you all for your input. This information is so useful for so many reasons!

debbei
07-10-2008, 02:13 PM
I would stay as far away from him as possible. Is there another orthopedic surgeon that you could bring your daughter too? He sounds like an obnoxious ass. I'm sorry you have to go through this. Where are you located? Are you close to a Shriner's hospital?

Good luck,

Susie*Bee
07-10-2008, 02:35 PM
So sorry your doctor wasn't helpful. He does sound really irritating and like he doesn't "get it" very well. I agree with Debbe about finding a different orthopaedic specialist. You need one who specializes in spinal deformities/scoliosis, not just a regular orthopaedic specialist who generalizes. What state do you live in? If you let us know, maybe you would get some suggestions.

I kept wanting to add my 2 cents about not waiting till next March too, but thought you got lots of response. Since he was no help, I'll go ahead and say it now, because I know I've seen posts where there were huge jumps in curvature in less time than that. It's not a life and death situation, but may be a situation where waiting could seriously impact what alternatives are available to you besides major spinal fusion. Best wishes as you tackle this new scoli challenge. And I really hope whatever you decide on, there will be some relief for your daughter's pain in the near future.

christine2
07-10-2008, 03:12 PM
that doc sounds like a real *** you don't need that right now. Stick to your guns, you have a right to be informed!!

I can't beleive that your daughter is not in a brace. Even if it is not successfull at least it is tried!!

sccrm08
07-10-2008, 04:09 PM
SCOLIOSIS DOES CAUSE PAIN I can not stand when I hear Dr.s say that it does not. I do not have near the pain that I did prior to surgery. But prior to surgery I had many Dr.s tell me that my pain was not from the scoliosis. When I finally saw my surgeon, he believed Scoliosis does cause pain so they are coming around.
Good Luck and keep us updated.

mariaf
07-10-2008, 08:53 PM
Then, he told me that a curve never progresses beyond one degree a month, so at the most, she is at a 45 degree curve (since she was at 40 degrees in March) and nobody will even look at her and think of surgery with a 45 degree curve....and he said that he will see her back in March of 2009!

A curve can never progress beyond one degree a month??????

What is this guy smoking??

I agree with everyone else that you should RUN from him....FAST.

I'm so sorry you have had such a bad experience dealing with this quack. In addition to a neurosurgeon, please find a reputable pediatric orthopedic surgeon.

Not to beat a dead horse, but someone besides me also mentioned Shriners -unless there is another highly recommended ortho locally that you could go to for a second opinion, I would strongly suggest getting to a Shriners Hospital for Children. In case you are not aware, they will help with transporting you and your daughter there if you cannot otherwise arrange it - and the care is EXCELLENT.

Best of luck to you!

Pooka1
07-11-2008, 12:05 AM
A curve can never progress beyond one degree a month??????

What is this guy smoking??

My daughter's curve moved about 5 degrees/month over a several month period.

I wonder what that doctor would say when seeing that.

RugbyLaura
07-11-2008, 05:29 AM
Just to underline the point - my daughter's went 6 degrees in 3 months.

Finding treatment and a doctor that you're happy with & have total confidence in is so important.

An example: A child who was diagnosed at the same time as my daughter, same age, with a similar sized curve (actually a little smaller) was left to "wait and see". Her treatment (or lack of it) was based purely on where they live (Scotland seem to operate this policy). She has progressed rapidly and is nowon the surgery list - at 11 years old.

Who knows? My daughter's outcome may well be the same, but as things stand she still has a chance chance of avoiding surgery and is much more likely to achieve her full height.

In the UK 40 degrees is about when they start thinking about surgery. I agree with everyone else here - ditch the guy & find someone you can trust.

mariaf
07-11-2008, 07:20 AM
In the UK 40 degrees is about when they start thinking about surgery.

It's pretty much the same in the U.S., although it can vary a little - some doctors may consider surgery at 40 degrees, others 45 - of course there are other factors (rotation, etc., etc.) that they consider on a case-by-case basis.

That being said, for this guy to say that "no doctor will look at someone with a 45 degree curve and ever consider surgery" is about as wrong as him saying that no curve can progress more than a degree per year!

tkrame01
07-14-2008, 03:46 PM
I spoke with my daughter's orthopedist who insisted that the most her curve could have progressed would be to 45 degrees and that no surgeon will even look at her at that rate. He also said that the pain she is having is not related to scoliosis, that scoliosis does not cause pain (contrary to what he had told me before) and he insisted there was no need to see her until March of 2009.

We have just sent in an application to take her to Shriners Hospital in Philadelphia. We are hoping they will see her to at least give us a second opinion.

I'll keep you posted. THanks again for your comments.

tkrame01
07-14-2008, 03:51 PM
I just realized I had already told you what my daughter's orthopedist said! Sorry about that.

Nonetheless we are trying to get her in to see Dr. Betz at Shriners. I hope they will take her. I have no idea how long it will take to get her in.

THanks so much for your support.

mariaf
07-14-2008, 04:07 PM
I am SOOOOO happy to hear that you are taking your daughter for a second opinion - and you will NOT be disappointed with Shriners.

I assume you have faxed the application over to them?

I would follow up in one of more of these manners:

Call them at 1-800-281-4050 - I believe the woman who processes the applications and schedules initial appts. is "Marge". Otherwise, ask for Adrienne Pettine or Janet Cerrone, both of whom work with Dr. Betz (Janet is his PA, Adrienne is his scheduler).

Also, their e-mail addresses are as follows:

janetcerrone@comcast.net

apettine@shrinenet.org

Calling or e-mailing once your application has been received by them should speed up the process considerably.

Good luck - and please feel free to e-mail me as well if you like.

leahdragonfly
07-14-2008, 04:38 PM
Hi,

I have been following your thread but haven't posted yet. I agree I would run away screaming from your current ortho! I am glad to hear you are going to Philly. We travelled from Oregon in March to see Dr Betz and his wonderful PA, Janet Cerrone. I truly can not say enough positive things about this visit, and they formulated a plan we are very satisfied with for our young daughter's scoliosis. No matter the distance you have to travel, you will not be disappointed. They will absolutely see your daughter, no worries there. With your daughter's situation I am sure you will not have to wait too long at all.

As Maria wrote above, Janet can help expedite your application and appointment...she usually responds to e-mails within several days, and is an extremely nice person as well as so knowledgeable. Dr Betz is wonderful too, and has a very unassuming manner. He seems to approach each child's treatment in a very individual manner, and is sensitive to the realities of treating scoliosis, rather than just treating your child's x-ray!

Take care, let us know how it goes,

Gayle

jillw
07-14-2008, 05:00 PM
tkrame01,

Wow - he is so wrong in so many ways! What annoys me with those orthopedists (and he's not the only one to say scoli can't cause pain) is that there are many people who believe their doctors know what they are talking about only to find out when its too late (for example that curves can and have been known to grow more than 1 degree per month for some people).

Thank goodness you were smart enough to do your research and get the ball rolling elsewhere.

By the way, I believe the shriners criteria for accepting a new patient is if they believe they can help them...I haven't heard on these boards or the VBS boards of Shriners Philly turning any scoli patients like your daughter away. (it's more a matter of when they can fit people in for appointments)

Good luck!

WNCmom
07-14-2008, 05:21 PM
My experience with Shriners in Philly is that they can fit you in on short notice. We got an appointment on a particular day just two weeks from the day I called and we had to have it first thing in the morning, which they were able to do. Definitely call or email Janet, and she will walk you through the process.

mariaf
07-14-2008, 07:54 PM
I agree that it IS possible to be seen within a matter of weeks if there is an opening. If you wish to see Dr. Betz specifically, I believe he is usually in clinic on Tuesdays (sometimes on other days as well). If you are not requesting a specific doctor they you may be able to get in even sooner. Although, nobody can compare to Dr. Betz as far as reputation and experience, the other spinal surgeons are all EXCELLENT and they work as a team with Betz overseeing things generally. And if there is any need, they will ask for his input.

Hope this is helpful.

debbei
07-14-2008, 08:04 PM
Good for you! I'm so happy that you're going to Philly. From what I understand, they are the best. Stay far, far away from that dopey ortho you saw already. :)

tkrame01
07-15-2008, 07:55 AM
Thank you so much for the info. about Shriners and the email addresses. I have emailed Janet to help expedite Molly's application.

I'll keep you posted.

Thank you all!

mariaf
07-15-2008, 09:37 AM
Happy to help.

I think it's safe to say you will see NO COMPARISON between the level of care and the expertise you will encounter at Shriners vs. the first ortho you saw. I'm sure you'll be very pleased with your experience with the Shriners medical staff.

We'll be waiting to hear!

tkrame01
07-17-2008, 09:07 AM
I faxed Molly's application over on Monday of this week - still haven't heard anything. I also emailed Janet Monday, and haven't heard back. Do you think I should contact them again, or am I just being impatient?

mariaf
07-17-2008, 09:10 AM
I would wait until Monday and then either leave Janet a voicemail or shoot her another e-mail. She could be on vacation this week OR just busier than usual. Please keep me posted but I am sure you'll touch base with Janet one way or another VERY soon!

tkrame01
07-17-2008, 09:39 AM
Thank you!

WNCmom
07-17-2008, 10:05 AM
I spoke with Janet yesterday, so I don't think she's away this week. I have a different email address for her; you might try that.

It's JCerrone@shrinenet.org

tkrame01
07-17-2008, 10:58 AM
Thank you for the info.! Janet is going to think I am an insane mom - just to be safe I did send her another email using your email address.

One thing God did NOT grant me was patience!

mariaf
07-17-2008, 12:42 PM
Hi WNCmom,

Thanks for letting us know Janet is around this week :)

Several months ago, Janet told me that her Shriners e-mail box got so much activity that she set up a special account (the comcast address) JUST for parent inquires and that it helped her to respond more quickly to parents.

So, ever since then I have given out the comcast e-mail address, and it seems to be working - most folks hear back within a couple of days.

Just wanted to explain why I did not provide the Shriners e-mail address :)

(And there is of course nothing wrong with using the Shriners e-mail address.)

WNCmom
07-17-2008, 02:49 PM
Maria--

Thanks for explaining that. I've never asked Janet about it, but I emailed her in early May using the comcast address I had from you and which I had used to contact her late last year. Two weeks passed and I still didn't hear from her, so I tried the shrinenet address, from which she had replied to me back in December. When I did that I heard from her immediately (and she was about to go on vacation, so I know she hadn't been on vacation). So I assumed the comcast one wasn't valid. Guess I shouldn't assume anything! It's good to know that the comcast address still works, and is probably the better one. I don't know why it didn't work for me that one time.

Mary Ellen

tkrame01
07-17-2008, 03:04 PM
At least I know I have my bases covered either way now! I'm sure I'll hear from her soon.

Signed,
Now the anxiously awaiting mom!

mariaf
07-17-2008, 07:03 PM
So now we can call you "the anxiously awaiting mom" - or "Molly's mom" or "tkrame01" - but I just realized I don't know your first name - LOL!!

By the way, I heard from Janet today and she mentioned that she's been a little bit behind with returning calls because she's had to take a few Fridays off AND they have been very busy at the hospital so far this summer.

Oh, and she also mentioned that anyone who downloads an application from the Shriners Hospital website should then fax it to 215-430-4068, Attention: Marge.

Beckymk
07-20-2008, 12:02 PM
I was just skimming and I'm so glad you got a 2nd opinion. As soon as I heard what the ortho told you about the surgery and not increasing, that doesn't sound right to me.

The first ortho we saw wanted to do surgery right away on Carolyn at 40 degrees BUT he referred us to Shriners due to our insurance situation. THAT was a definite blessing in disguise since I didn't even know Shriner's dealt with Scoliosis at the time.

In our case, we did put Carolyn in a brace and it was holding for a while but alas, Friday we got the news that it's increasing (went from 40ish to 48 in a year), so it's time to look at surgery. At least that gave us time to have it sink in.

Also, every single appointment they ask if she is having back pain. I just assumed they ask because they know back pain can be associated with scoliosis.

tkrame01
07-21-2008, 09:29 AM
Happy Monday everyone!

Well, good news...Molly has an appointment with Dr. Betz at Shriners on August 14. I spoke to Janet, his assistant, and she could not have been nicer on the phone. Told me things that totally contradict what our current ortho. dr. has said, including pain with scoliosis, which could mean a sudden curve increase, which is what we suspect.

Nonetheless...we are getting ready to go to the beach the end of this week - it is great going on vacation knowing that when we return Molly will be in very good hands!

Thank you all for your support!
I'll keep you posted.

mariaf
07-21-2008, 09:41 AM
That's great news!!!

And, yes, please go have fun at the beach :)

jessica
08-03-2008, 02:53 AM
for pain,try inversion table,5 minutes at a time 3 times a day,spinecor also help.
I haven't been to the forum for quite some time. My daughter was initally diagnosed with a 26 degree curve a couple of years ago. She is now thirteen. We have been watching her (no bracing) and in March when she returned for more xrays her curve had progressed to 40 degrees. Her orthopedic surgeon wants to see her back in March of 2009 because she will basically be done growing by then. However...within the last two months or so we have seen a change in her spine. The curve looks worse to us and she cries that her back hurts. I've even noticed she is using pillows to sit and a bunch of pillow to sleep. When I tell her maybe we should take her back to the orthopedist, she gets upset with me because I think she is scared of what may come next. SHe has a left thoracic curve. We've even noticed her shirts fitting differently. Is it ok for me to wait to take her back to the doctor if I think the curve has progressed, possibly quickly over the last couple of months? Am I making things worse for her if we agree to wait? I just want to do what is right and try to make her happy at the same time.

any suggestions would be very helfpul.

Worrisome mom

jessica
08-03-2008, 03:06 AM
These surgeons may have had high degree of education, but they didn't knoe everything, it doesn't take a genius to know that scoliosis hurts,since the spine is not straight it pinches the nerve where the curve is, my daughter was diagnose at 12 years of age, that was last august and our doctor just shrugged his shoulder and said it wasn't too obvious and there's nothing to worry about (25 and 20 degrees).My main concern was her pain everyday so my husband bought an inversion table immediately and she uses it 3 times a day for 5 minutes at a time. Her pain is history now, she would only go upside down whenever she remembers. We also took her to an orthotist in Seattle last february to get a spinecor brace, and she's been wearing it for more then 4 months now, just got her x-ray done last week and her curve is 23 and 23 degrees out-of-the brace. She didn't improve but she didn't get worse either, and no pain.

fcefalu
08-05-2008, 09:41 AM
Growth spurts seem to accelerate the progression of the curve. Go back to the orhto.

The Slice
08-13-2008, 07:21 AM
To all whom have posted on this thread and are interested, here are a couple of links that while confusing, might be a bit interesting.

http://pdfserve.informaworld.com/Pdf/AddCoversheet?xml=/mnt/pdfserve/pdfserve/656713-768420410-784510585.xml

http://www.utdol.com/home/content/topic.do?topicKey=ped_orth/4271

I am by no means an expert on any of this, but I thought I saw a couple of things on puberty and scoliosis. One that there are differences in the rate of the growth spurt which may have something to do with when it starts, and something on scoliosis that either it was suggested, or there was a study in progress correlating rate of growth and amount of growth during the growth spurt and scoliosis. It's been a while since I've seen it so my memory is a little foggy on it. Unfortunately, I don't have the resources to have them "interpreted" into lay person's lingo, but I'd be interested to see a translation. BTW, I just Googled these up, and have no particular ties to any documentation. It's interesting the one study talking about (if I understood it) increased testosterone levels in a higher percentage of the girls with Idiopathic scoliosis than the control group (those without IS).

Essi
11-20-2008, 03:44 AM
www.scoliosissos.com.
i went there when i was 13, helped me a great deal.
(:

Mom37
01-26-2009, 12:15 PM
I haven't been on the forum in a long time. It is a great source of information. I know how hard it is with a teen and their emotions in this difficult time. My daughter was very emotional and upset and did not want anyone to know. She was so devastated, but now is not worried at all that everyone on the swim team sees her scar, and people ask her about it. We went to Shiners in Erie, PA. as second opinion and Scottish Rite as a third. Definitely get as many opinions as you need. I recommend Scottish Rite and cannot say enough to tell you how great they were. My daughter is now 15, been over a year since surgery, and is doing great. Take care and feel free to private message.