Just a quick note to say I talked with the surgeon's office today, and they put me back on my meds to see if it helps reduce the pain. The last few weeks have been rough, and the pain has been getting worse each day. I'm hoping it's just part of the healing process and that eventually I will be off all the meds again. It's been 4 months since the MVD.

Gidge says to say hello to everyone too. I have been emailing back and forth with her since our MVD's. She isn't doing well and has been unable to get off her meds. She said she will get back on the Forum as soon as she is feeling up to it.

Sheila

Shelia,

Big hugs to you that its just the nerve healing. Has anyone recommended vitamin B6 to you? My orthopedic doc has me taking it and its supposed to help heal nerves. It couldn't hurt to try!

Sorry Gidge isn't doing so hot either. I hope she finds her way here so she can benefit from us!! Give her my best!

Ellena

Hey Sheila
Wow, quite a few people on BT didnt have the best MVD expereince. You, Gidge, Stefanie. I wonder why that is, the success rate is supposedly so high
Jean went to the TN conference a couple of weeks ago and she sent me a DVD where I saw a live MVD. Although I knew the mechanics of what they were doing before I had my surgery, I really didnt realize how traumatized that nerve gets. They were cutting an artery right out from what looked like a part of the nerve. So that left the nerve damaged at that spot. It for sure would take time for that to heal. I had pain for approx. 3 months post MVD. It wasn't till I watched this DVD that I realized why. I'm hoping that is the same for you. Did you just start getting pain again or did it never actually go away altogether.
I'm sorry Gidge isnt doing well, please give her our best. We would love to hear from her. The Original Brain Talk is up and running again as of yesterday. You have to re-register, but I'm hoping some of the old timers will come back there once again.

Hi Sheila,

Sorry to hear that the pain has returned and you're headed back on meds again. Did you wake up from surgery pain free and the pain has just returned, or have you had the pain since surgery? After surger, I woke up in pain and as time went on the pains subsided to twinges and finally diappeared about 4-5 months later. My surgeon wanted to put me back on meds, but I refused - I wanted to see what would happen. I agree with Ella about the nerve being damage from all the years you suffered with TN and the surgery definitely aggravates it more. Have you spoke to your surgeon about this? I pray it's just your nerve taking it's sweet ole time healing. I'm glad to hear you have gotten your independence back - what a great feeling! Keep positive and ask lots of questions - this process may be longer and more difficult for you than others. Please keep us posted - you are in my thoughts.

Kathy

Hiya,

really sorry to hear you are back on the meds, that's a bit gutting. However, I have been on and off meds for a while now - so it is worth trying off them again once the pain has settled down. Sometimes it might be that a low dose is what is needed. I found that after my 1st MVD I was pain-free but after 2 weeks of being completely off the meds I got the tn pain back big time. I often wonder what would have happened if I had just stayed on a really low dose!

I can't say that either of my MVD's turned out well, so maybe 3rd time lucky for me - teflon removal slightly different however. But don't give up hope, and they are getting some good results with the new pulsed radio-frequency leisioning now, might be worth a thought for you at some point?

The nerve does take some time to heal, and there are suggestions (not proved) that some cross-fibre mylination can take place - so I don't know if time would heal that - I worry that that is what is wrong with my nerve root.

B6 is good, as is L-Lysine, which you should be able to get from health food stores, or body building stores! It is/should always be given to someone who has shingles as it can reduce the likelihood of post herpatic pain. I have to say that I have been on it for over 2 years with no dramatic improvement, but maybe I'd be worse off without it!!! It's certainally worth a shot.

Big hugs

Niki xxx

plus - you might want to consider some form of bodywork, Bowen, Reiki, quantum Touch or crainial-sacral work as this will help to re-balance your skull after the drilling! It always helps me, and can reduce an attack. Reiki is a great painkiller for me - wonderful stuff! All these mentioned are very GENTLE forms of bodywork/energy work and will not involve any crunching etc! Be wary of anyone who can "cure" you, that's not what it's about (it MIGHT happen, all things are possible on this earth, but no-one should tell you that they categorically can!)

Here's the deal with MVD and successes. I have done a ton of research, talked to a bunch of people who had it at varios support groups, and spoke to many other doctors (non-neuro surgeons). And here is what we have concluded.
There is no research done post MVD. Sure it has a 90% success rate, but each surgeon defines success differently. For example, even though my life was and is still turned upside down and I almost died, my TN went away a little bit. So...that is a success in my surgeon's eyes and will be in his paperwork.
I had major chest surgery in '99. The hospital did a follow-up at 3, 6, 9, 12 months all the way up to 6 years later till I went into remission. That is what you call follow-up research.
No one calls and asked someone with an MVD how they are doing post op. That is why the success rate is so high. If someone somewhere did follow ups with most MVD people, they would find the success rate to be much lower. And they don't want to do that...if the success rate is lower, less people would go for this costly surgery. That is my opinion along with many others.
And this doesn't include all the complications I had, or strokes, deaths, etc...I'm just talking people who have no relief or the TN comes back.
The funny thing is....I would have had the MVD if I had a 50% chance of relief. TN sucks and most people would still risk the surgery with a 50/50 chance.
They need to do more surveys, research, etc. This disease is not well known enough to warrent the effort though...it seems.
Sorry, but this is something I have been looking into all summer and it really bothers me....a little research goes a lot way. But I was told 97% success from many surgeons, and frankly, I'm not buying it.
OK, I'll get off my soap box now!

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!