Since my TN came back from remission 2 yrs ago, it has steadily progressed…
I see my Neuro on Tuesday and I know ( because he has mentioned before) that if I had significant breakthrough pain that he would then add Neurontin and/or Baclofen to the mix.
I know many people take several meds in combination etc to find relief, BUT I am tired of increasing meds and being a dopey vegetable for 3-6 weeks trying to find the magic combo that will work, unable to function…
I have been seriously thinking about MVD the last few weeks, not sure if I’d be a good candidate or not but I’d like to discuss this with Neuro.
Any suggestions or tips?
Do you get a referral from your Neuro to see a Neuro surgeon? Or do you find one on your own?
( I’m in Canada)
Did those of you who looked into MVD feel like I do? Just done with the whole medication thing? Done with the pain!!?
I should add that I’ve had some bad side effects lately too at the higher dose of Tegretol which has influenced my thought process…
I realize in the meantime I will have to add some meds to the mix, it’s been two weeks straight of breakthrough pain and I’m DONE!
Feel like I’m rambling now, just looking for advice, thanks,
Miriam
You are exactly where I was. I went to neurologist after 4th med and said that I was tired of not functioning.
He offered med #5. I said, I've done my research on MVD, found the best surgeon and am going through with it.
He said that I was being a very pro-active patient! He gave me some lidocaine patches for the breakthru pain and wrote up the report to send to neurosurgeon - who I had been in contact by email.
It's the surgeon's call if you are a good candidate - not the neurologist.
The sooner the MVD - the more likelyhood of success. Your nerve gets beat to death by every heartbeat you have. So within the first 3-7 years is optimim.
I'm on the same boat. My neurologist sent me to pain management because he didn't know what to do with TN. I'm so tired of so many years of pain and meds that I thought I should just try getting the MVD done.
I spoke with my pain management Dr about it. I told him that I've been going through this for too many years and that I would like to do surgery. He kida didn't let me finish my sentence and he started mentioning all the different procedures that are out there. It actually worked out because he mentioned all the other procedures that I had looked into and said that he doesn't think they are as good as MVD. Yay! I told him that was exactly what I was thinking of getting done. He did warn me, like KC said, that it was up to the neurosurgeon whether I could get the MVD done.
He didn't know of a neurosurgeon around me that does them (I am in Central New Jersey) but I told him I had found someone that seemed good. He said to just go for it. I have my appointment set with the neurosurgeon for Sept 20.
I also want to get this taken care of ASAP because I am terrified that it's turning into ATN.
Thanks for your replies KC and ihold,
I guess I will see what my neuro says and go from there!
Good luck ihold!!!
KC, I’m going to ask him about those lidocaine patches too!
Thanks again,
Mimi