Need advice on what to do for large cervical syrinx

[vmom22]

I have been diagnosed with a large cervical syrinx, most likely coming from an automobile accident in 1982.  The symptoms had progressed slowly in the past but now seem to be progressing more rapidly - weakness in hands and arms, more balance problems, more neck issues.  I am looking for the best neurologist possible who can advise me of my options.  I know that syringomyelia coming from an accident does not have a lot of options.  However, I need to know when I should try surgery and therefore, I need a neurologist who is an expert.  I also need a recommendation for the best surgeon to do this surgery (shunting?)  if I should have surgery.  Where the surgeon is located is not important, just interested in good outcomes for this surgery.

[selmaS]

We do have a list in the Chiari forum here on MedHelp for use in researching Drs...but since u r in MD, I know a few in ur area that r good....Dr Heiss, Dr. Henderson,and Dr Rosner....they r in ur area and u may want to check them out, Dr R is in NC....the other 2 in MD....

Please post updates on ur progress in locating a Dr : )

[vmom22]

Thanks so much for your concern.  I live in Maryland. I am being followed by a neurologist but would be interested in knowing names of neurologists who specialize in this condition.

Thanks so much.

Vmom

[selmaS]

  Hi...I would suggest going to a Dr that deals with this condition for those that have it congenitally....many with Chiari may have this as a result of the obstruction of CSF flow...since these Drs do their own research on this, they may be the ones u r looking for....we do have a list of Drs for use, for u to do ur own research to find the best Dr for u....not all on the list r true specialists but have treated members of the Chiari forum and the members liked them, so added the name...I have no idea where u r from, but we do have lists for Canada, and the UK as well....

Many times a syrinx is not large enuff for a shunt or a stent...see article in my journal on shunts.....

Good luck with ur location of a Dr that is right for u, please keep us posted on ur progress.