physicians

[reesetc]

What type of specialist does one look for as all the neurologists say my "syrinx" which has grown is nothing despite my ever increasing symptoms?

[mark1789]

Hi Rersect

I have been having similar symptoms to a syrinx I have. Severe pain, headaches numbness, weakness, stiffness in my back, tingling. Mine is higher in my spine though and related to chiari malformation. I had the decompression surgery and drs say there's nothing they can do even though the syrinx is still there and I have symptoms. What types of medications and other things have you done for relief. I'm on amytriptiline for headaches and tramadol for pain but they don't help fully.

Mark

[selmaS]

   Hmmm odd u were mis DX'd with MS...that does tend to happen with those that have Chiari....but u said u don't have it.....do u think it is possible that they may have misDX'd u again?.....I mean some Drs ignore Chiari as they all seem to feel it is an insignificant finding.....

Do u look at the list of Drs we have here? The list is compiled by the members here of Drs they have been to, treated by and liked.....the list is however not a referral nor an endorsement it is here for u to use to research Drs....http://www.medhelp.org/health_pages/list?cid=186

[reesetc]

No was not told how it got there, they say it is absolutely nothing despite my neurologic symptoms, told this 20 yrs ago due to ongoing numbness, weakness, headaches etc etc neurologist called it MS, he's retired and new docs say no way its ms but dismiss the syrinx which obviously is larger and would explain a lot. I looked up chiari specialists and got ped docs-are they generally neurologists or in some other field?

[selmaS]

  Did u have a trauma to the area ?.....

  A Chiari specialist also treats the condition u have, that is y Chiari is mentioned.....my question is were u told how or y ur syrinx formed.??

  If u r having symptoms, and that is y testing was done and the syrinx found, then it is something,.

[reesetc]

There does not seem to be a chiari but the syrinx was located and described as a 2 level sphyrinx from T3 through T6 and smaller T7 and T8. Recent MRI describes it at T1 through T9 most prominent T3-T5. All radiologists and neurologists who have seen describe it as nothing. Huh?

[selmaS]

  Hi and welcome to the Chiari forum.

May I ask do u know the cause of ur syrinx?......is it congenital or acquired?

A Chiari specialist also treats Syringomyelia, (syrinx) as they tend to go hand in hand  many times. Those with Chiari have an obstruction of CSF flow which can cause a syrinx to form.....so if they take care of the CSF flow issue it may help the syrinx shrink.....so knowing how or why urs formed is a help.....