I don't know if I am doing this right - other than post a profile on LinkedIn I have never participated in a site like this.
Has anyone had surgery for their TN and if so what kind, how long ago, still successful and any complications?
go to the groups tab above and you can read postings or join the MVD group.
I flew to Michigan to see the best of the best - Dr. Ken Casey - I live in Missouri
He and I emailed some pre-consultations beforehand -- I watched a couple of video lectures
And read his book "Striking Back" about all the treatment choices for TN
One year this week pain free : )
I was very agressive and proactive in my research as there is no real TN treatment here in my area.
Keep reading and learning!
Hi KC,
Thanks for the quick response. I didn't realize there was a book on this so I'll try to track it down. What procedure did you have. I've seen a neurosurgeon and he says I'm a candidate for MVD or Gamma Knife. I was leaning towards the MVD because it seemed counter-intuitive to damage an already damaged nerve plus I want to take care of this once and for all. However, I struggle because the surgeon said if it were him personally, he'd do the least invasive and go with the gamma knife. I need to figure out how to join the MVD group but I've read some of the postings.
Thanks for your help.
http://www.livingwithtn.org/group/mvds
Above is a link to the MVD group, click and join and you are in.
http://www.livingwithtn.org/page/help-with-research
above is a link to the FACE PAIN INFO that has info on various surgical options.
Hope these help.
I just had an MVD done three weeks ago, most of my symptoms are gone except the atn tooth pain, but that has been getting better as the days go by. I chose mvd over gamma knife, the knife is destructive and if you need an mvd down the line it lessens the chances of it being successful.
I preferred the MVD as did my neurosurgeon, he really doesnt do the gamma knife due to its destructive nature, and honestly I am glad that I had the mvd, I dont regret it and even though I had a ton of complications ( i am allergic to most meds, it wasnt the surgery itself) i would do it again, I really didnt think the surgery was that bad.
Let me know if you have any questions,
Wendy
I had an MVD in 1999 with full pain relief for 10 months...then it came roaring back. I had lowered my meds to nothing right before the surgery because I wanted to test results of just the surgery, so I know it was 100% pain relief from the surgery. It really knocked me for a loop and it was a full 8 weeks before I could walk around and do stuff without getting exhausted. My complications were: getting strep during my recovery, and having a bit of the suture stuff sticking out from the scar for months and irritating the site because they wouldn't dissolve. Oh, and they didn't bother to replace the bone in my skull, so under my hair I have a "divot" there on my scalp :-/ During the surgery, they said they could see no obstruction of the nerve...I imagine if they had, and had corrected it, then the MVD might have lasted longer, or forever.
In January of 2004 I started going for UCC chiropractic care 3x per week. I had been lowering my meds as I could tolerate it, as the chiropractic care started to help. After 5 months of going 3x per week (and doing all the daily exercises at home, too) I was pain free and medication free for 8 years. After some recent dental work, plus not having been to the chiropractor in years, the pain is back.
crashgirl said:
I just had an MVD done three weeks ago, most of my symptoms are gone except the atn tooth pain, but that has been getting better as the days go by. I chose mvd over gamma knife, the knife is destructive and if you need an mvd down the line it lessens the chances of it being successful.
I preferred the MVD as did my neurosurgeon, he really doesnt do the gamma knife due to its destructive nature, and honestly I am glad that I had the mvd, I dont regret it and even though I had a ton of complications ( i am allergic to most meds, it wasnt the surgery itself) i would do it again, I really didnt think the surgery was that bad.
Let me know if you have any questions,
Wendy