Suggestion for 13-year old

[tkrame01]

Hi All, again!

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]

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]

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]

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]

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]

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]

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]

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]

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]

Hi All who responded to my previous message

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]

Sorry - that was a repeat

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]

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]

Shriners Philly

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]

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]

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.