18 years dancing the TN dance, or can I get off the dance floor now?

I was diagnosed with Tn in the fall of 1995. It has been a interesting 18 year dance.

My first MVD was Jan 2009, it was a decompression. What was found, shocked everyone. I had bone compressing the nerve. My neurosurgeon, at the time, told me, in 13 years of practicing medicine, he had never seen such a thick skull in any of his patients. It is official, I have a thick head. ;) So, while I walked away with no padding, the bone was drilled off the nerve. So officially, it was a decompression. At this point, I had serious TN pain for 14 years.

This week, I had a internal neurolysis, and a repeat MVD. The concern was due to the bone pressing against the nerve, there was now scaring and adhesions within the nerve fibers. When I looked up the procedure, all that kept coming up was carpal tunnel surgery. I could not find a single thing about doing it for TN. I am blessed in the fact, my neurosurgeon has as his boss, one of the countries leading neurosurgeons. Dr Burchiel was consulted. It was frustrating not being able to find anything online. I am not one to do things without researching the daylights out of the subject first. It seems internal neurolysis is most done for carpal tunnel syndrome. I am going to give myself 2 months before I make a decision about success or failure. Personally, I think it is foolish to think I would get instant pain relief. Thing is the TN zaps I am getting are Lessing. Also, due to concerns about a repeat CSF leak coming out my nose, I am on a lumbar drain. I am going to give my self permission to take time to heal. Mind you, this comment is coming from one that finds it really hard to sit still

I started my TN dance in the fall of 1995. I am still dancing. Sometimes, though I do get tired and want off the dance floor. Here to dancing my last TN dance.

I have noticed several blogs from people who have had the internal neurolysis. You might want to put out another blog to see how many people respond and their results to having the procedure. I think you will be surprised how many hits you receive.

Wishing the best for you from here in North Idaho


I am not sure where Cleo gets her information, but I am working with some of the leading TN neurosurgeons in the country and they totally are disagreeing with what she is saying. That is why I deleted her comment. For the record, I am 3 day post-op and off all pain meds and going great. I am glad I went ahead with the surgery. I would not have it redone, but I am thrilled I went ahead with it this time.

Rest, rest and heal!! I hope this brings you relief at last!
One day at a time and go easy!
Sending positive thoughts and many (( hugs )) Mimi xx

My neurosurgeon told me I am his favorite patient. That made me feel really good. I am so blessed. I am not sure how others get through this. I figure I can never leave Portland, as I can not get far from OHSU.