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MVD-post surgery daily diary

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Unread 09-28-2006, 09:27 PM   #1
ella138
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Arrow MVD-post surgery daily diary

By posting this diary here, I hope it will continue to help as many people in this forum as it did in the old one.

MVD July 22/2005
Days 1,2 & 3
I go in and they do a cat scan and put these little electro tapes on my head in different spots..something about lining things up in the surgery. I speak to the anesthesiologist and he puts in an IV and makes me good and stoned. So far it's nice. I wake up in recovery with a small pressure bandage behind my ear covering the wound. They start grilling me on my name, the date, where I am etc. In the meantime the dr went out to speak to my husband and sister and told them there were 2 arteries on my trigeminal nerve and he put in several teflon pads to separate them from the nerve. As I wake up they put me in a step down unit which is like an ICU. I was no nauseous or dizzy at all. Maybe because the anesthesiologist gave me gravol in the anesthesic cocktail. The dr forgot to order pain meds for me and I really really needed them. Finally he called and they gave me morphine. It didnt really take away the pain but it took the edge off. The pain subsided within a few hours and I cut down the morphine. After 24 hrs they put me in my own room and I chose to cut down the morphine to tylenol #3 (codine). I stayed on that only through the next night and then went on 2 extra strength tylenol every 4 hours. My lower lip and half my tounge are numb and I have had 2 TN twinges since the surgery. They told me that was normal and it would take time for the nerve to heal as I have had TN for 13 years and they manipulated the nerve. It's interesting that the numb spot is exactly where the trigger point was. So I've cut down my tegretol form 1200mg to 800mg and will cut out a further 200mg every week until it's gone (hopefully). Sometimes I think I'm about to have a twinge but it doesnt happen. I never vomited as I read many others have. I was not dizzy except for the medications they had me on. I'm reletively pain free from the surgery except for a bit of soreness. Now I will keep my fingers crossed and hope that this surgery worked. It was a ***** to make the decision to finally have it and I went through **** up until the day of surgery but it was not that bad...so far. Obviously it has only been 3 days so I'm sure much can still happen but I'll take 1 day at a time and I'll keep you posted on my progress. Tomorrow I will try to wash my hair. They took the dressing off before I left the hospital.

Day 4 after MVD surgery.
I woke up and my eyes were swollen shut. I freaked when I looked in the mirror. I went to my family Doc this morning and she said that when ever someone has surgery and is intubated (as I was) they have to keep your eyeballs from drying out so they put gel, pads and tape over your eyes to keep them shut. It seems I had an allergic reaction to one of those products. I look like one of those people who you see on TV after they come out of face lift surgery!. Anyway the doc said cold compresses and antihistamine meds for 3 days or so and it will be gone. As far as the rest goes, I had a shower and washed my hair today. No problem there. No twinges so far today, not even a headache. I finally went to the bathroom (#2) today after 5 days. It was like giving birth. Enough said. As a matter of fact I'm rather bored. I guess that's a good thing. I'll keep you all posted as the days go on so anyone else thinking of having an MVD will know what to expect.
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Unread 09-28-2006, 09:29 PM   #2
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Day 5 post MVD
Eyes still swollen but getting better. Woke up shakey though, don't know what that's about. I find that besides all the physical stuff happening, there is a lot of emotional stuff going on too. Every little pang I feel I think will be a TN twinge. I'm sitting on the edge of my nerves wondering if this thing worked. I'm also having a hard time adjusting to the numbness in the lower quarter of my face tonge and teeth. It feels weird. Looks like I'm about to develop a couple of really nice canker sores on that part of my lower lip too. Head pain in still there but not to bad. I hardley took any pain meds yesterday and today I took 2 Advils (Ibuprofen) at 5:30am and nothing since. It helps to keep busy and not think about myself 24/7. My husband took a digital picture of my incision yesterday so that I could get a really good look at it on the computer. It was a bit freaky to actually see the slice in my head. I have about 15 staples holding it closed. If anyone wants to see that pix I have no problem emailing to you. That's all the news for now.

Day 6 post MVD
Today I really feel a bit bitter. My eyes are almost back to normal. I got up and took a shower washed and blow dryed my hair (very carefully). Put on a bit of make up and went out for a walk with my husband and dog. I plan to go to Costco and out for dinner. (we'll see) but the way I feel now it can be done! The pain is minimal, there is a cold sore developing on my lower lip but other than that you'd never know I had a gash in the side of my head! My skin on my face is very dry. Very unusual. It is flakey especially on my chin where the numbness is. I've been moisturizing and we'll see how that goes.
I wonder if the numbness is permanent or temporary. Only time (or my neurosurgeon who is on vacation) will tell!

One Week after MVD
This really seems to be a small turning point. Yesterday I was able to go out and have friends over for a bbq till 1:00 a.m. and not fall asleep or feel yucky. Of course I did none of the work, my husband did, but I was able to be part of the world again. It was also the first night I was able to sleep on my left side (the incision side) I've been missing that. Don't get me wrong, it is still sore and yesterday I started to feel the healing itch. I still get the odd feeling like I'm about to have a twinge but it hasn't come. Not even when I'm eating and that was a big problem for me, especially hot food. My skin is getting better slowly but still very dry and flakey. My eyes are not swollen anymore. My lower lip and half my tongue are still numb. I'm down to taking Advil maybe 3 times a day instead of every 4 hours. Tomorrow I will be cutting down my tegretol another 200mg. I will be taking 600 instead of the 800 I am taking now. I know the doctors would like me to go down faster but I'm afraid so I'm doing it my way which is 200 down every week. I started at 1200. Today I plan a manuicure, pedicure and dinner. Life is coming back slowly but surely!

11 days post MVD
Today I had my staples removed. I was nervous but it took all of 1 minute and it was no big deal. Wasted energy on worrying. My incision is itchy and still a bit sore. I still have some pain in some areas where they screwed on that halo contraption. My numbness is getting better (I think). It's hard to tell, but I can feel my tongue now. I have reduced to 600 mg 3 days ago (originally was 1200mg). I am having some sort of sensation or twinge from time to time. It is nothing as strong as a TN pain but never the less it makes me nervous every time it happens (and it happened a few times today). I don't know if it is because the nerve is healing or because the numbness is going or because the reduction of meds is letting through some TN pain. I certainly hope it is not the latter. I still tire easy. After my staples were removed today I went to the local mall and tried on about 10 outfits. Then I came home and slept for a few hours. Shopping is hard work!
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Unread 09-28-2006, 09:31 PM   #3
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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.
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Unread 09-28-2006, 09:33 PM   #4
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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
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Unread 09-28-2006, 09:35 PM   #5
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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.
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Unread 09-28-2006, 09:36 PM   #6
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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."
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Unread 09-28-2006, 10:51 PM   #7
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I'm so happy for you. You're so brave.

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

KD
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Unread 10-16-2007, 09:41 AM   #8
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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.
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Unread 10-24-2007, 08:21 AM   #9
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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
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Unread 11-19-2007, 08:02 AM   #10
ella138
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Thumbs Up 2 Year Anniversary

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.
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