Support Groups/New Doc Needed

[linny32]

AHello, I am a newbie. I had a benign ependymoma successfully removed five years ago from L5 area. I have a leg that is atrophying and a lot of pain in both leg and spine. Since my tumor was thankfully benign I have not been able to find any support groups in my area, Rochester, NY. My neurosurgeon has moved away and I also need to find a new neurosurgeon. Any advice?

[chickiet]

Welcome to the group! I really think this is the best support group you'll find anywhere. It's a great place to ask questions, get advice, vent frustrations, and sometimes get a good laugh as well.

As for finding a new NS - anybody from the Rochester NY area? I think you can always see your primary care doc and get a referral for an MRI. If the symptoms are of sudden onset, I'd definitely follow up quickly. Have you been getting routine MRIs?

Chris

[susan]

I would also look for a spinal cord injury rehab doc. That might be more helpful in finding a program to work on your muscle loss. I went to see oen here in Pittsburgh and learned my right arm is shrinking, I am losing muscle mass due to my spinal cord problems. I am now going to a outpatient PT/OT facility that works with a lot of patients with neuro issues. My previous PT/OT place mostly did sports injuries and really did not meet my needs.
Have you looked at Strong Memorial? Isn't that your big academic medical center in Rochester?
To find a spinal cord rehab doctor, I would start with the hospital that does traumas in your area. They are more likely to have a spinal cord injury program.
Susan

[jfavata]

An ependymoma at L5 is often a myxopapillary ependymoma. Do you have copies of the operative reports and pathology - is myxoid or anything similar mentioned? If so, have you had periodic follow-up MRIs? Brain, c-spine, thoracic and lumbar?
I can give you the name of a good Dr. in New Hyde Park, just email me.
Or you can contact Dr. Jallo...