Neurologists specializing in syrinx in Boston area?

[Jo2215]

I was diagnosed with syrinx. t3-t9 2-3mm.  I was not allowed to see the neurosurgeon at mgh but he reviewed my mri and said it is inoperable.  Where do I go from here?  All the specialists on this site are neurosurgeons and apparently they only see patients for surgery.  Are there any neurologists who could help?

[selmaS]

No worries....I had the same problem at the stage you are at...just sharing what I have done along the way.....

Let me know if you find one and where they are...maybe we can get a list of NL's started.

[Jo2215]

Selma,
You are the best. That is a good idea.  Why didn't I think of it? My nervousness about this is getting in the way of my thinking!
Thank you for being the voice of reason.

[selmaS]

  Hi...the NS should be able to refer you to a NL...many of the Chiari specialists have a NL that works along with them in their office....

Do you have Chiari as well?

Most syrinx's are too small to place a shunt or stent....but if the patient also has Chiari they do surgery for Chiari creating more room and it helps shrink the syrinx in most cases....

For those with a syrinx due to injury or other cause, they may just need someone to monitor it and someone for pain management.

I would suggest calling a Chiari specialist and asking them for someone they would recommend you see....