Syringomyelia

[CincyMom83]

31-y.o. Male diagnosed with transitional lumbo-sacral vertebrae; degenerative disc disorder; stenosis; and now idiopathic syringomyelia with more diagnostics to rule out chiari and hydrocephalus. Pain began over two years ago and was attributed to a possible pulled muscle and Percocet was prescribed. Every couple months new symptoms appear (getting lightheaded easily from a sitting position; easily agitated; confusion; poor balance and falling; "numbness" in legs-he says numb but he just cannot move his foot/leg even after telling it to move; excessive sleepiness and drowsiness; and of course the continual excruciating pain).
As the patients wife I am terrified and I don't know what to do. We are on Medicaid and the insurance wants us to drive clear across the state for treatment. If he needs more than one appointment a month there is no way we can continually drive that! His symptoms just seem to be getting worse and with the recent "numbness" I fear permanent nerve damage could be a very real possibility. Everything I've read says surgery is imminent. Has anyone else experienced this? What do we do next? Is there anything I can do that will relieve some of the pain? He just started gabapentin yesterday. Thank you for any suggestions.  

[selmaS]

  Hi and welcome to MedHelp.

U may find more members with a syrinx (syringomyelia) in the Chiari Malformation forum. And u do not have to have a Chiari DX to join, as there are many related conditions that we all share and the Drs we see treat.

http://www.medhelp.org/forums/show/257?camp=msc

What I would suggest is getting copies of the MRI and report when u go for the MRI....hope u join us in the Chiari forum,

[CincyMom83]

I should mention he has had five mri's in the last month, with and without contrast. There was no underlying lesion they could find in the thoracic. He has a brain and cervical MRI tomorrow evening as well.