Scoliosis and surinx

[bas2101]

Hi-

I am new here, and rather new to syrinx, although not new to scoliosis.

My daughter has moderate-severe scoliosis (dx at 8 with 40 degrees, now 14 with 60 degrees (was 68 prior to bracing/PT), and a somewhat newly diagnosed syrinx T2-L1, which 2 neurologists say is small. Her scoliosis has been progressive and is in surgical territory, although we are still trying to avoid fusion. She is braced, and is in constant back pain when out of her brace. Her neuro exams have all been 100% okay. But, her syrinx does run the same vertebrae as her spinal curves.

Since there is a link between scoliosis and syrinx, I do not understand why no one we visit is taking her syrinx seriously (although I understand in part, it may be because we have seen neurologists and not neuro surgeons). I am concerned because of the syrinx's possible cause of scoliosis and progression, how having a syrinx could affect surgery if she has it in the future, and the risk of the syrinx progressing. I am currently having all 3 MRI's compared to see if the syrinx has grown over time. She does not have Chiari.

I am hoping to hear from others in this similar situation, and how your neurologist/surgeon/ortho/MD perceives this situation.

Thanks!

Brooke

[selmaS]

  Hi and welcome to the Chiari forum.

I wondered if ur DS also has tethered cord and or chiari....many times they do  not do much for a small syrinx as the stents and shunts r larger then the syrinx....but if he also has a herniation many times surgery for that may help resolve the syrinx......

[bamajak]

My son has a small syrinx and progressive scoliosis even with bracing. It progressed rapidly over a one year period from 28% to 70%.  We are now going to get surgical bracing for the scoliosis from our Ortho.  Our neurosurgeon does not want to do any surgery since his syrinx is so small.

[bas2101]

Thanks to those who responded. I am still wondering if there is anyone out there whose child has scoliosis with a syrinx?

[rod44]

Hi Brooke and welcome, I have a syrinx at the cervical/thoracic area of my spine....

Some things that can be due to but not necessarily confined to Syringomyelia are a loss of sensation or the ability to tell the difference between hot and cold. This happens below the level of the syrinx so in your DD's case the lower body. Skin rash can develop and it is important to check for this regularly as there is a risk of skin ulcers.....


Hope this helps,

Ray  

[selmaS]

Hi and welcome to the Chiari/syringomyelia forum.

Brooke, ur DD does have a unique situation and I have not heard neone on the forum having a similar one.

There r drs that specialize in syrinx's and chiari and u may do better to deal with one of them to see what issues ur DD faces with the syrinx that she has.


I do not have a syrinx......but from others that do, many drs that do specialize in syringomyelia do "watch" the syrinx as there is not much they can do unless they r of a certain size...width wise....then a shunt or stint can be used to drain it.

And depending on where the syrinx is will depend on where it will affect her.

I pray someone else with a syrinx will add their experience with u......

and I hope u continue to post here and share what u r going thru as it may help the next person in the same situation as ur DD.

I am glad to welcome u into our little family here and so sorry for the reason u had to seek us out.

"selma"