Are there any other options beside a shunt for syringomelia

[KiraLJ]

After fainting and hitting her head in November 2010 my 12 year old daughter was diagnosed with Chiari Malformation 1 with Syrinx (C2-C5). She had a cranial decompression in Feb 2011. The cranial decompression surgery came with a complication of Hydrocephalus. To fix this problem she had to have a shunt placed in her head with two drains. After being in the hospital for four months following the decompression and shunt surgeries the Syrinx still exist as of a MRI in May 2012. In adddition the syrinx has grown to C2 - C7. The doctors say she needs a shunt placed on her spinal cord now. My daughter is an active 14 year old dancer now with NO SYMPTOMS. I want to avoid surgery! Surgery may cause problems that she doesn't even have. Are there any other options?? Please all feedback is welcome.

[selmaS]

  With a syrinx I have known this to happen in a very short time frame...the syrinx can grow rapidly and symptoms progress just as fast...or it can go very slowly....the problem with the slower progression is u adjust to the symptoms as they occur and u do not notice them, but they r just as harmful as those that might seem to appear over night.

Compression of the spinal cord is nothing to mess with...and I understand ur concerns, and y I would suggest an opinion of a diff Dr to see  what they say...just go to one that is a specialist in the area of Chiari and syringomyelia.

  Make sure they rule out all related issues first...no EDS, not scar tissue...or cerebral ptosis b4 u consider a shunt....as it could be a matter or treating the other issues and no shunt may be needed.

As far as if it is a large syrinx, I will say the same thing I say regarding a herniation of the cerebral tonsils...it is not how long, but how wide it is, as that is when the damage is being done.,....in ur DD's case where it is will depend on how she is affected as to which nerves r in that area....I have a chart that shows what could be affect in those areas-http://www.medhelp.org/user_photos/show/197978?personal_page_id=197028&photo_collection_id=1369

[KiraLJ]

I believe they are trying to do the surgery before the onset of symptoms. The doctor says once the symptoms start they happen rapidly. Is this true? They're saying that placing the shunt wont help the symptoms that arrive before surgery but will only prevent future symptoms from occuring. Will shunt surgery cause her to have back pain for the rest of her life? I have never heard of Ehlers-Danlos but i will ask the nuerosurgeon about it. Do you know if there are any medications she can take to stop the growth of the syrinx? Is C2-C7 considered a large syrinx? She has been doing so well since her previous surgeries (no pain or symptoms). I would hate to have this shunt placed on her spine and she begin to have complications or pain due to this surgery.

[selmaS]

  Hi and welcome to the Chiari forum.

May I ask y the Drs feel she needs the shunt if she doesn't have symptoms? I am sure there is a reason....and I can only suspect that with the syrinx growing ur DD does not feel pain as a result of nerve compression....and with a large syrinx it can lead to paralysis  and y they may want to shut the fluid away from the spinal cord to prevent further issues and damage.

  I was wondering about scar tissue....do u know was she checked for Ehlers-Danlos?...Many with EDS tend to have these issues of scar tissue forming...this will block CSF flow and would be the same as the tonsils still obstructing fluid...u would have the formation of the syrinx or it getting larger instead of smaller....

U will want a NS that specializes in Chiari as they also deal with syringomyelia...and u may want the opinion of a diff Dr to see what they suggest, if it is in line with what ur Dr is saying then u may want to stick with him....

Has ur DD had a CINE MRI recently?

[KiraLJ]

She's being treated by a pediatric nuerosurgeon in Chicago. I have sought out a 2nd opinion with a nuerosurgeon at another hospital in Chicago. This doctor is sayin the same thing in adddition to the shunt he wants to open open up her incision sight from the original decompression surgery to remove scar tissue that is causing more pressure on her brain. This doctor seems to think this may be why the syrinx is not shrinking after almost two years. Is there any medicine that can help a syrinx? I was reading something about taking vitamin b12. Also is coughing a symptom? Are there syringomyelia specialist or are nuerosurgeons the specialist?

[Joalexa]

So sorry for your daughter and of course you.  May I ask where she is being treated?  Usually the treatment for a syrinx is decompression surgery but it's not always successful.  Have you considered a 2nd opinion?  I agree with you that you should try and avoid another surgery!