8 weeks post MVD
This is the first time I have been back to see the surgeon since the operation. Here is what I asked and what the answers were:

Q. What constitutes the 95% statistic of a successful MVD?
A. A successful MVD is when the patient is pain free and medication free.

Q. When is the healing and the pain comfort level as good as it's going to get?
A. Approximately 6 months.

Q. I have been getting these ice pick headaches. Could it be related to the surgery?
A. Ice pick headaches is a general term used to describe sharp brief headache pain. It is a benign condition and not related to the surgery.

Q. I haven't been able to fly in over 13 years since I've had TN. Do you think I would be OK to fly now?
A. Go for it!

Q. My incision is still sore sometimes?
A. It's normal, it's still healing.

Q. I still have numbness in my lower lip area. Is this permanent?
A. The feeling may still come back in time.

Q. The pain in my V2 branch is gone, however the twinges still happen in my V3 branch from time to time. Will they go away eventually?
A. After doing over 200 of these surgeries, he has never had an MVD that was "partially" successful. Usually the patient is completely pain free. However he is not closed to something new happening to a patient that he has not come across before. He asked me to monitor the pain and if it gets bad to go back on the Tegretol for a short while as a diagnostic test. Because Tegretol has worked for me for so many years, if the Tegretol takes care of the pain then the twinge I am feeling in that area is TN. If the Tegretol does not take care of it, chances are it is something else other than TN. Possibly dental? If it gets any worse he would like to see me again.

Well that's it in a nutshell. So on one hand I feel relieved that chances are the twinges I get in the bottom tooth are probably not TN related. I can't imagine that I would be the one patient that is different than all the rest. I guess I will have to explore other avenues where that is concerned.
On the other hand, what else could it possibly be? I guess I'll go back to the dentist and maybe have a root canal.

3 months post MVD
and the news is good. My twinges have deminished dramatically. I still have a twinge if I let something really hot touch the back of my front lower tooth but I'm fairly convinced now that this is not TN which means....the MVD was a complete success.
My incision is still sore to the touch and I have a dent where the cut was. I wasn't expecting that. My hair is about 1 1/2 inches long where it was shaved and I still have a small area of numbness in the lower lip area.
I have been reading that a few of you are now on the MVD waiting list like Gidge and Sunstorm, and I want to wish you both all the luck in the world. I hope you have the same experience as I did. Once you get past the first week things pick up very quickly. The pain of the surgery is definately manageable on minimal medication. I think the thought of surgery was far worse than the surgery itself. Would I do it again if I had to?.........in a heartbeat!!!!

4 months since MVD
Today is my 4th month anniversary and everything is going well. My incision is getting better every day. The TN seems to be gone. I was petrified to go to the dentist today (old feelings stay with me) but everything went well. I even let him work on my tooth that is bothering me and no pain! Was I ever relieved when it was over. I hate the dentist. He is a lovely man but I hate the drills, the noises, the smells. I'd rather go to the gyneacologist any day of the week instead of the dentist. I still have some numbness but I'm getting used to it. The doc said at 6 months I would be as good as I'm going to get so maybe there is still a chance the numbness will go away. Even if it doesn't, I can honestly say this MVD is the best thing I have ever done. Good luck to all of you who are about to embark on the same journey. With a good surgeon, and a little help from the man upstairs your results should be just as positive.

I AM NOW PAIN FREE AND MEDICATION FREE

6 months post MVD
Unless something unexpected happens this will be the end of my diary. I've chosen to end it at 6 months because my neurosurgeon said "at six months it will be as good as it's going to get".
So this is as good as it's going to get....not bad I say!

On the positive side (which far outways the negative side by 100%) I'm still pain free and medication free. That really was the goal and it has been met.

On the negative side I still have about a one inch square area around the lower left side of my lip/chin area that is numb. I did get the feeling back in my cheek, teeth, tongue. Although this is a bit uncomfortable it really affects nothing. Not the way I look or eat or feel.
I have a indentation where the incision was made. I'm sure that it is permanent as well. It feels like the bone just healed that way. Once again it affects nothing. It's not noticable unless I touch it.
My hair is still growing back. That seams to be taking a long time. I figure it will be another 6 months before those little pieces fit in with the rest of my do.
I still get these ice pick headaches from time to time. They are sharp pains that last for a few seconds and then disappear. There is no rhyme or reason for when I get them. I don't believe they were caused by the surgery as I had them before also. I just thought they were all part and parcel of TN but I guess they are a separate issue.

My life is so much more normal now that I am off the meds. All you people out there that live on these megadoses of anticonvulsive cocktails know exactly what I'm talking about.

Coming off the meds was literally like the fog just lifted and the sun came out. Everything is bright and clear. What a way to live!


Let me just add. If there is anyway I can help any of you contemplating an MVD or healing from one, please allow me to do so. I am staying on the forum with all my friends that helped me through this. I would like the opportunity to return that kindness. You can PM me or just start a new thread. I will answer.

Thought some of you might be interested in the clinical description of my MVD which was written by my neurosurgeon. It is a little clinical and graphic. This is an excerpt for the letter sent to my family doctor.

"Routine opening, routine craniotomy at the sigmoid transverse junction guided by the Stealth stereotaxy. The dura was opened and the operating microscope brought in. The cerebellum was retracted inferomedially and pleanty of CSF was released. The arachnoid was opened widely over 7, 8, 9, 10, 11, and the 5th nerve. The patient had a relatively small superior petrosal vein which looped along the nerve root entry zone and up along the nerve. This vein was coagulated and divided. Anterosuperiorly, there were branches of the superior cerebellar artery clearly pressing against the nerve, These were separated from the nerve along its course all the way to the nerve root entry zone with Teflon pledgets. The rest of the nerve was then inspected circumferentially along the nerve root entry zone and no other offending vessels were identified. Meticulous hemostasis was thus ensured following which the microscope was taken away and routine closure undertaken."

I'm so happy for you. You're so brave.

How gracious an act in sharing something so personal...

KD

Thanks Ella
I am grateful for your diary of your MVD experience. I am hoping that my next visit with my neurologist in November 2007 will be one when we make an appointment with MVD. I am on reduced work hours because of my meds and I hate the fog that I am in. I get breakthrough pain especially when exposed to cold. Thanks again for sharing your story.

a bump to top ,...for this post should be at top .
Ella thanks for sharing so much and posting this .. it is priceless help .
many blessings.
peace
BMW

i had this on the Braintalk site, so I thought I would update this one too.

July 22, 2007
2 year anniversary of my MVD.

Just thought I would let you know how I am doing two years post MVD.

Physically
•Still off all meds
•Still pain free
•Managing to sleep well even without Tegretol (that took a while)
•Some twinges or sensations once in a while, which may or may not be TN related and often related to the timing of my menstrual cycles (a few days before or during).
•Small area of permanent numbness in the lower lip/chin area
Indentation in the bone on my scalp has not gotten any better or worse. Wearing sunglasses for an extended period of time still bothers me .
•The ice pick headaches have definitely gotten better. Not gone altogether, although I’m still not convinced they are TN related either.

Emotionally
•TN still has an emotional hold on me
•I still assume that every sensation I feel is TN coming back, when at my age (50 in a few days) the sensations are probably more likely caused by my receding gums.
•I’m still afraid to fly for fear of setting off an attack
•I’m still afraid to go to the dentist for fear of setting off an attack
•I still carry a few tabs of Tegretol in my purse along with my Advil and Tylenol

So for me, day-to-day life has become very normal. It’s the underlying damage that Trigeminal Neuralgia has done to my confidence to move past this long and painful chapter in my life, that I can’t seem to get over.

I continue to not take any day without TN for granted. I was one of the lucky ones for whom the MVD worked thanks to an excellent experienced MVD surgeon (and whomever was watching over me upstairs )

I would be very happy to answer any questions for anyone who is about to venture on this journey. Please just pm me.

Hi and thanks for your diary. I am getting an mvd in 2 weeks. I'm quite anxious about it but determined as well. Your experience has prepared me. Thank you, Mark

Thank you!!!!! You are giving me hope! I had surgery on March 26, 2024 after almost 7 years of agony! I am still experiencing the pain, but I read your messages and I feel like this is going to end.

It has been almost 2 months from my surgery: my pain not only is not diminishing, but increasing!
My neurosurgeon even added Tizanidine and Naproxen to my 450mg. of oxcarbazepine 3 times a day, but nothing seems to help!
Any suggestions?