Hi everyone!
After a year of experimenting with many different meds and finding short-term success with a few, my neurologist has decided that nothing is going to work long-term, so he referred me to a neurosurgeon (mayo clinic and john hopkins). Without fail, the meds always end up failing at some point, no matter how much my dosage increases. I was wondering if any of you have experienced success with pain specialists or eastern medicine and would recommend I look into those before going for surgery. I experience both the electric shocks and burn at times...mostly the first though.
I would also like any advice you have on how to find the best neurosurgeon. I have looked at the doctors tab on the site, which helps if you have a hospital or state in mind, but I'm really looking for the best. I don't really care where they are located. What homework do I need to do before deciding?
Thanks!
What I had to do --- I came on here and on http://www.fpa-support.org/
I lowered my drug - trileptal - to lower my brain fog -- got some lidocaine patches for topical relief - and dove into 10 months of research. For my doc... Dr. Ken Casey -- I watched videos ono him - read about him - met somebody in an in person group locally who recommended him, and it happens that Dr. C learned under the inventor of the MVD surgery. Done thousands probably.
So I read all postings on him -- asked sooooo many questions of members on both sites
I flew to MI from MO --- if you search my name -- my story is all over here -
I was a success -- it has been 9 months. BUT TN is forever, I'm only in remission, I could have to have another MVD someday, or I favor also a procedure called Ketamine Infusion. Just learning on that one.
I accidentally stumbled on Reiki - I had a free session -- pain was gone for a week - shot out my toe - weird -- I didnt really tell the practitioner at the time what was wrong with me
The next time I saw her she gave me 3 weeks of pain free days - just moving the energy around in my body
Also, while I was on trilept-HELL, (med that drove me to surgery) -- I got some ritalin from my neuro here - so I could concentrate on my MVD research.
Keep Posting!
The more educated you become - the better off you will be sooner - the odds are better
Be ware of nerve damaging procedures if you want the best MVD outcome
Take care of yourself!
This is very helpful...thank you! I take trileptal (600mg) and neurontin (1200mg) a day. I have brain fog too, but it is better than the pain! I also feel very weak/jello like. I had blood work done at 525mg trileptal and 900mg neurontin and everything was fine. But of course...the pain wasn't. I have been in unbearable pain over the past week in the mornings and at night, so I really want an option that will help at least reduce my dosage. I just take way too much to function. I've tried tegretol, lyrica, trileptal, neurontin, cymbalta, combinations of all, and possibly more that I'm forgetting...since I forget lots these days :). Showers help take the pain away, but sometimes it is for 1 minute, sometimes an hour. That's the only way I can sleep now though.
What do you mean by "beware of nerve damaging procedures"? Just want to make sure I understand everything. I, just like you, am willing to fly anywhere. I'm just hoping I can get my pain under control long enough to see the BEST doctor for me.
Thank you SO much for the info!
Kc Dancer Kc said:
What I had to do --- I came on here and on http://www.fpa-support.org/
I lowered my drug - trileptal - to lower my brain fog -- got some lidocaine patches for topical relief - and dove into 10 months of research. For my doc... Dr. Ken Casey -- I watched videos ono him - read about him - met somebody in an in person group locally who recommended him, and it happens that Dr. C learned under the inventor of the MVD surgery. Done thousands probably.
So I read all postings on him -- asked sooooo many questions of members on both sites
I flew to MI from MO --- if you search my name -- my story is all over here -
I was a success -- it has been 9 months. BUT TN is forever, I'm only in remission, I could have to have another MVD someday, or I favor also a procedure called Ketamine Infusion. Just learning on that one.
I accidentally stumbled on Reiki - I had a free session -- pain was gone for a week - shot out my toe - weird -- I didnt really tell the practitioner at the time what was wrong with me
The next time I saw her she gave me 3 weeks of pain free days - just moving the energy around in my body
Also, while I was on trilept-HELL, (med that drove me to surgery) -- I got some ritalin from my neuro here - so I could concentrate on my MVD research.
Keep Posting!
The more educated you become - the better off you will be sooner - the odds are better
Be ware of nerve damaging procedures if you want the best MVD outcome
Take care of yourself!
Glycerol Rhizotomy
Cyber Knife
I don't know them all -- somebody chime in please!
I also had tried Lyrica, Neurontin and was offered Lamictal -
it was the Trilept-hell that worked on pain BUT took away my brain the worst!
Hi there, in my opinion the MVD is the best answer. I had mine done at the Hershey Medical Center. My never was actually partially severed and the nerve regenerated 6 years later. I went to every major neurosurgeon on the east cost to find someone who would do another MVD. I went to Tulane, Duke, UVA, Cleveland Clinic, Hershey Medical Center and University of Pittsburgh all with the same result, none of them would do a 2nd MVD. They all stated that a 2nd MVD is never done due to scar tissue. The doctor that I would recommend is Dr. Rezai. He was at the Cleveland Clinic when I saw him and he is now the head of neurosurgery at Ohio State. Here is a link to his info: http://biomed.osu.edu/neuroscience/16297.cfm . If I were having any further surgeries done he would be the doctor I would allow to operate on me.
If you have any further questions please feel free to contact me. I wish you the best