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 The cerebellum was retracted inferomedially and pleanty of CSF was released.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.

As I started this diary after my surgery, I never included a list of questions to ask prior to the procedure. But now after having gone through an MVD, there are many questions I wish I did ask before the procedure and never knew too, so here is a list of questions I might ask if I had to do it over again.

Remember, there is no such thing as a stupid question.

Go in with all your questions written down and it’s best if someone is with you, as it is amazing how much you miss when you’re nervous.

Neurosurgeon Choice
•How many of these surgeries have you performed?
(If you are having the procedure done at a teaching hospital you may want to make sure the surgeon you are speaking with is the one that will actually be doing the procedure.)
•What is your PERSONAL success rate?
•What do you consider to be a successful MVD? Some doctors will tell you “being pain free” and some will tell you a “reduction in your medication”.
•Do you think I am a good candidate for MVD?

Actual MVD Procedure
•What are the complications that may arise?
•I’ve heard some people have a feeling of “ear fullness”. What are the chances of that happening to me and if so how long does it usually last?
•Is numbness after surgery something I need to be concerned about?
•Do you put my head in a halo and if so will there be pain from that after the surgery?
•What do you use to separate the nerve from the offending vessels compressing the nerve?
•Is there a chance this substance (usually teflon) will be rejected by my body?
•Is there a chance it could move? Even under severe movement (like a roller coaster for example)?
•How large is the hole you will be drilling into my skull?
•How large is the incision?
•How much of my hair will be shaved?
•What can I expect to happen when I check into the hospital that day?
•Should I expect to be nauseous or dizzy after surgery?
•Will I have headaches after surgery and if so, how long will they last?
•What can I expect to see and feel when I awake from the anesthetic?
•Is the relief from TN immediate or can it take time till I feel relief?
•What do you use for pain management after surgery?
•Can you prescribe something for presurgery nervousness for the few days prior to surgery?

Recovery
•How long will the recovery be?
•How long will I be in the hospital?
•When can I resume regular activities?
•When can I return to work (make sure he knows if you have a desk or a physical job)?
•When can I drive again after surgery?
•When can I wash my hair after surgery?
•Will I need help for a while and if so, for how long?
•If I have a question during my recovery, is there someone I can get a quick answer from?
•How do I wean off my TN medication?
•Can I wean off the medication slowly?
•How long after surgery will I have a follow up appointment with you?


Obviously you will need to tailor these question to suit your own situation.

I am so happy for you that it worked. My tics stopped 10 years ago and unfortunately the fear of them coming back is always there. It is an insidious part of this disorder.
I was unlucky in that my MVD, done by Peter Jannetta in 1979, was not successful. It also left me with a facial paralysis of the left side of my face. There has been some movement return but it is almost 100% gone still in my forehead and the smile looks like, as one stranger commented, I had a stroke. It also causes my eye not to close completely and I have had to have it sewn shut a few times over the years. (It was supposed to be closed permanently after the MVD but it was so ugly I had opened AMA.).
I have friends who have had successful MVD's and when they work, as with you, it opens up a whole new life.
Again, congratulations for your success. And also for your staying here. Often, once people no longer have the pain they leave the groups they are with/on not wanting to be involved anymore. It is a true kindness that you want to stay and help.
leej

Hi Ella,
God bless you for sharing your story. I hope I am still a long way from surgery as my Neurologist wants to try more meds. first. But, he also just referred me to a Neurosurgeon, so it's defiitely a possibility. I loved reading your story and it has helped me, as it did others, very much. Thank you....Bonnie

Wow, Ella, I had my MVD at a Hospital in Tampa I was under heavy sedation and some a-typical symptoms. I left with a walker because of all the pain meds I had been on and it wasn't until February when I went to a clinic and stayed 6 days to get off all the drugs then I got Anesthesia Dolorosa. I wore a halo for my first surgery which was Stereotactic Radiosurgery, no changes in the pain. Many Neurosurgeons/neurologists told me an MVD was risky, but my husband was anxious for me to be well as were my family members so I did. Now, my pain is in all three nerve areas of the face as before it was in the lower jaw. It is the worse pain I have ever had, I am scared to death of it. I take a different pain medicine not Oxycontin like before when I was up to 80 mg 3x per day -- wow, hard to believe, but I am so afraid even now. So it was 6 months later that I developed the AD. I feel like I am going to die sometimes because the pain is so intense and I wonder what will happen if I become immune to pain medication? It has been 10 years since I got TN and I was 40. Some drs. just blew me off and said I was too young. Now, my 76 year old mother is having same symptoms. Congratulations to you and I pray this pain I have will find a way out. God is my neurosurgeon now. Way to go, woman. Thank you for sharing your experience.