2 weeks post MVD
Today is my 2 week MVD anniversary. I working on getting my strength back. Yesterday I walked a mile on my treadmill and today I walked the dog for 1/2 hour (alone). Up till now I havent ventured out by myself. I drove for the first time too. I went grocery shopping and carried the groceries and I have a doctors appointment this afternoon that I plan to drive to on my own as well. So on the recuperation side, things are moving well. My numbness is starting to go away slowly too. I can actually feel my bottom teeth slightly when I brush now.
What I am not so happy about it I still get a twinge now and then. They are not nearly as strong as before the MVD but it scares me. Does that mean it didnt work for me? Is that the way the nerve feels when it regenerates? Is the nerve healing from all the years of TN? Should I continue reducing my meds even with the presence of twinges? I finally got hold of a neurosurgeon this morning as the dr that did my surgery is gone till mid Sept. He said he takes his patients of meds cold turkey after an MVD. My meds are only in half at this point (600 mg of tegretol) He said he wouldnt be concerned about the twinges for at least another month, that some people do have twinges. (sure, isnt it easy for him to say). I don't know what to do. I don't know if I should reduce further at this point. It's a lonely place inside my head right now. I guess I will have to take one day at a time in regards to the twinges.

3 weeks after MVD
I'm just about fully recouperated now. My incision is closed and most of the scab has fallen off. It is no longer sore. I no longer have bad headaches. I don't tire so quickly either. I am down to 300 mg of Tegretol but I am not twinge free. I still get the odd twinge and it still freaks me out. Old habits die hard. Twinges have always freaked me out. I get a rush of adrenaline running through my body every time I have one. It's a really weird feeling. The twinges I get now are not what they used to be though. They are not the same intensity or duration.
What is very nice is the heavy zombie state the tegretol causes has let up. I am no longer asleep on the couch at 5:30 in the evening. I used to walk around yawning and sleepy all the time on 1200 mg. Sometimes someone would talk to me and I would be staring right through them not really listening. Almost like sleeping with my eyes open. My friends are constantly refocusing me to listen when they speak. Fortunately they dont take offense. I stopped doing public speaking in the last year too. I write an advice column in a newspaper and am invited to speak to different groups from time to time. I found my mind was wondering in mid sentence sometimes and I was to embarrassed to continue. Maybe after I'm off Tegretol (if I can be) I will start speaking engagements again. Many things might change. I haven't flown in 13 years either. Maybe I can start travelling again too. It's almost like there is a light at the end of the tunnel. As long as the twinges don't get any worse I can handle this just fine. It's so hard to believe that this MVD is behind me now. It was so consuming for so long. TN engulfs your whole body and mind. It really is an affliction and a terrible imposition on life.
My numbness is still there, however I am confident that with time that will be gone too. I feel much more than when I came out of surgery and am sure it will continue to regenerate. The areas where they screwed in the halo are no longer sore either.

1st day back at work after MVD
Today was my first day back at work just a little over 3 weeks after surgery. I have an office job so there is no manual labour involved. Everyone was telling me that it is too early but I really do feel fine. I drove fine, worked fine, and left early on everyone's advice and you know what.....everyone was right. I was feeling just geat but when I got home I was crashed out on the couch and slept for a couple of hours. The dog woke me to eat otherwise I probably would have slept longer. I guess sometimes you have to listen to the people with the experience. I know my Dr. told me I could go to work after a couple of weeks and to tell you the truth I thought I could too but I stayed home the extra week just in case. I'm sure it's just a matter of gaining strength back. Today is the 5th day I've gone without a twinge. I am still on 300mg of Tegretol and will probably get more twinges once I stop all the meds which I plan to do on Thursday.

4 weeks post MVD
Most of the physical recouperation is now over. Just a bit of soreness where the bone is still fusing and still a bit of numbness in the lower lip area.
The big stuff is in my mind. I know this will be different for everyone but for me it is difficult to forget the pain of TN.
Yesterday I stopped all Tegretol. However it was on my mind. Was the pain going to return? I put away my pill timer which I had been relying on for 13 years and there were no pills on my night table beside my bed. One thing I never realized was that Tegretol with all it's side affects was also a drug that kept me having very comfortable deep sleeps every night (and sometimes days too). Now with no Tegretol I was up till 4:00 a.m. tossing and turning, reading and watcing TV. Nothing helped. My mind was active and my body not tired.
When I finally did fall asleep something weird happened. I had a terrible TN attack. I immediately woke up and after a few minutes I realized that I did not have an attack at all. I had a dream that I was having an attack and that was awful. It proved to me that the memories of TN are here to stay. They may have fixed the nerve but they can't fix the memory of the pain I felt for so many years.
I guess only time will help fade the memories of the years of TN.

5 1/2 weeks since my MVD.
I was feeling a bit tender around the base of my incision on Saturday evening and when I felt it, there was a small lump there. I'm not at all sure what that could be. My incision seems to be closed and healed. I wonder if it is an infection starting or maybe a swollen gland. I was about to go to the emergency dept. of the hospital I had the surgery in but then the thought of sitting there for hours ended that idea. I waited till Sunday evening and after I came back from a wedding I attended in the afternoon I called the after hours hotline for my medical centre and spoke to a RN (Registered Nurse). After asking me many questions, she didn't feel I had to go to emerg but that I should have it check by my doctor in the next 24 hours. So this morning I will call and hope to get an appointment today (not so easy here in Ontario).
It is swollen and tender but no leakage or fever mmmmmm......wonder what it is. Things were moving along nicely. I hope this is just a small blip.

I went to the doc yesterday and she said that raised sore area is part of the healing process. She said the skin underneath was coming together and the nerves that were cut along the incision are starting to regenerate. Where before along the incision line it was fairly numb, now it is sore because the nerves are coming back. I was so glad to hear it wasn't the beginning of a CSF leak. That's all I could think of when I felt that little lump. I thought fluid was starting to pool there. I can't believe after all I've been through with this surgery that I still have a "glass half empty" attitude. I have so much to be thankful for, I'll just have to give myself a big slap and a good shaking. These minor aches and pains will have to take a back seat to life.

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

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?