Stephanie,

I just wanted to let you and everyone know that my surgeon does do follow research post MVD. Next month will be my last face to face visit with him (I saw him after 1, 3, 5, and 9 months), but he will be contacting me yearly with an evaluation for me to complete. During my last visit, I asked him what are the chances of it coming back and he told me that he was taking all his report results and presenting them at a medical conference and the numbers are in my favor for it not to reoccur. It disturbs me that other surgeons are not doing this. This should be an important question and criteria when researching a compentent surgeon.

Kathy

Kathy, I'm glad your surgeon is following you...and I have to admit I am shocked!
If I didn't have the complications, I would have seen him one more time to get the stitches out and that would have been it. I've seen him more b/c of all the stuff that happened...but not b/c of the TN.
My neuro said she had sent three people in for MVDs and only one worked and the TN went away quite a bit. But the other two didn't help or it came right back.
Don't get me wrong, I'm glad they have this option for TN, but there needs to be more research following people afterwards. I'm sure it has helped many people, but 94% is very close to 100%. I don't know. I'm a big fan of research and for something so painful, I think they should know more about the outcomes...and I had it done at a huge teaching hospital....maybe a 21-year-old med student did my surgery! LOL

My pain was gone while I was on the high doses of my meds after the surgery. They didn't return until I was down to a low dose and then off the meds. I started tapering off at 2 months,and I was off completely by about 3-1/2 months. I was so anxious to be done with them because of the side effects. Hopefully going back on a low dose will calm the nerve down again. I don't want to stay on the meds forever if I can help it. Maybe as the nerve heals more, the pain will subside again. Thanks for all the concern from everyone.

Stephanie,

Excellent points you make concerning followup, etc... This condition really doesn't warrant alot of attention because everywhere you read about it, all the sites, PubMed, NIH, etc., really don't give it much thought. They still have the stuff in there that it only hits people 60 and above!

you'd think they would at least update some of their data!

I'm going to chime in here. Like Kathy, my surgeon also did follow ups. I went to see him 3x post surgery and the last time he assured me that anytime I had a question or problem (heaven forbid!) he would be there for me. He followed up that statement with a letter to my G.P. stating exactly that (so now I have it in writing!)
My surgery was also done at a teaching hospital, but I insisted (and I have that right) to not have any students do any part of my surgery or anesthetic. I got a confirmation from my surgeon before surgery, that would be the case. Then one of his residents called me, about 1 year post surgery and kept me on the phone for about 1/2 hour and asked me tons of questions about every aspect of my surgery, pain, meds, complications, concerns. A sort of synopsys to go into the records I assume.
I actually remember just before I had the surgery, the anesthesiologist came to speak to me and told me that this particular surgery is notorious for waking up nauseous and dizzy and they have devised an anesthetic cocktail which works with most of the patients having MVD.
Also, I just want to add that I have been contemplating MVD for many years. I interviewed no less than 6 nerosurgeons before I ended up using the one I did. Sure, they were all nice enough, but I was not happy with the amount of MVD surgeries they had under their belt. I was lucky to find my doctor. He had done 100's of MVD's and his own personal success rate was quite high. I actually asked him what "success rate" means. His answer was pain free and medication free, or pain free with a significant drop in medication. I knew I was still going into a risky procedure, but I felt I made a very informed choice. It took me years of research and searching for the right guy before I made it.
Sorry I'm venting, but it's not fair to paint all the surgeons with the same brush. I still stand by my original statement I seam to repeat over and over. The most important thing anyone can do before having an MVD is finding the right experienced surgeon with a high personal success rate. That's not to say that things still can't go wrong, but you go in with much higher odds.

I went and saw a few surgeons as well before my surgery and I thought I choose the best one. He was the top neurosurgeon in my city 4 years in a row at a reputable hospital. He said he's done many MVDs and had great results. The day I first saw him, he had done an MVD the prior day and the man woke up pain free. So again, I'm just going by what I am seeing and hearing.
At the local support group, they had an entire meeting about how little the surgeons follow up the patients. And it's not even the surgeons I expect to do it. It could just be a telemarketer-type person making phone calls.
There are a ton of surgeons out there doing MVDs, but in my city, at least from what I am hearing at meeting and from people, is that very few have had anyone ask them how they are doing post-op. And I don't mean just a few months either. They need to follow these patients for years. TN comes back a lot, and this should be documented. Again, I am not saying that no surgeon is doing follow ups, I'm just saying it like I see it.
I've meet a few of the people from Striking Back and while they had great experiences in the beginning, they had the TN come back and are now at square one again. So it does come back sometimes.
They need to do more follow ups. I was told I was too young to have TN at 29 b/c my old neuro was told it was never seen in anyone younger than 50. I guess that stuff needs to be updated as well. I know that doctors aren't gods, but they need to do a little more paperwork, even if they hire a 17-yr-old intern to do the phone calls.