MVD - What does it feel like?

General General TN & GPN (Old Site)
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What does it feel like right after MVD surgery?

Is there a problem sleeping on the side where MVD occurred?

How long does it take to be able to stand up and walk to the bathroom after surgery?

Did your head feel different where MVD took place? My surgeon says he will throw away the bone and replace with a metal plate.

How long were you in the hospital?

How long did it take you to go to work after surgery?

How long did you need assistance at home after surgery? I live alone and may need nurse service.

Does your hair cover the scar?

Did your MVD surgery work?

If you had type 2 symptoms, was your MVD a success?

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Hi Don.. Hope this gives you some idea of my experience..

What does it feel like right after MVD surgery? I had a wicked headache...diffucult to control the pain for 24 hours

Is there a problem sleeping on the side where MVD occurred? Only for the first week or two

How long does it take to be able to stand up and walk to the bathroom after surgery? I was up and about the next day (26 hours after)

Did your head feel different where MVD took place? My surgeon says he will throw away the bone and replace with a metal plate. I have no discomfort or odd feelings where MVD is but above my ear where clamp was placed is still sore/numb (size of a large coin) 4 months after...no big deal really.

How long were you in the hospital? Surgery at 7 am on Tuesday walk out of hospital 6pm Wednesday.

How long did it take you to go to work after surgery? I have three little kids and I was tired but well enough to deal with them for summer vactaion three weeks after surgery no problem.

How long did you need assistance at home after surgery? I live alone and may need nurse service. Only for two days....my husband was on hand, I was just so tired. I didn't vacuum or do laundry for a two weeks. But I was able to do almost everything else a week after.

Does your hair cover the scar? My hair completely covers my scar.

Did your MVD surgery work? Yes!!!!. I was pain free immediately...I did have the odd shock for a few weeks and now just have some sensitivity on my upper lip. Nothing serious.

If you had type 2 symptoms, was your MVD a success? I had Classic TN with some burning( like ATN) I am doing great! It is so worth it. - Find the best Dr. !! It makes all the difference. Good luck!

This picture was taken within 7 days of surgery. Staples were coming out later that week.

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Erin said:

Hi Don.. Hope this gives you some idea of my experience..

What does it feel like right after MVD surgery? I had a wicked headache...diffucult to control the pain for 24 hours

Is there a problem sleeping on the side where MVD occurred? Only for the first week or two

How long does it take to be able to stand up and walk to the bathroom after surgery? I was up and about the next day (26 hours after)

Did your head feel different where MVD took place? My surgeon says he will throw away the bone and replace with a metal plate. I have no discomfort or odd feelings where MVD is but above my ear where clamp was placed is still sore/numb (size of a large coin) 4 months after...no big deal really.

How long were you in the hospital? Surgery at 7 am on Tuesday walk out of hospital 6pm Wednesday.

How long did it take you to go to work after surgery? I have three little kids and I was tired but well enough to deal with them for summer vactaion three weeks after surgery no problem.

How long did you need assistance at home after surgery? I live alone and may need nurse service. Only for two days....my husband was on hand, I was just so tired. I didn't vacuum or do laundry for a two weeks. But I was able to do almost everything else a week after.

Does your hair cover the scar? My hair completely covers my scar.

Did your MVD surgery work? Yes!!!!. I was pain free immediately...I did have the odd shock for a few weeks and now just have some sensitivity on my upper lip. Nothing serious.

If you had type 2 symptoms, was your MVD a success? I had Classic TN with some burning( like ATN) I am doing great! It is so worth it. - Find the best Dr. !! It makes all the difference. Good luck!

This picture was taken within 7 days of surgery. Staples were coming out later that week.

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Hi, Don,

I was in the hospital 2 and 1/2 days.

I did have a headache, which, I found out later could be controlled best with extra strength Tylenol.

It has been 13 months since my surgery and I am just now sleeping on that side of my head. My head was sore, and I had a hollow feeling above where my surgery was for about a year.

I walked on the evening of the 2nd day. My balance was off but I made it alright. I had a tilted head for about a week.

My head felt different for awhile, well, it has been over a year and I am now just getting back to normal. MVD is a surgery that doesn't take long, but, it takes a while to fully recover from it.

My surgeon was able to put back the bone and he used some type of covering to hold it in place, but it wasn't metal.

I was fortunate I didn't return to work, but, I would allow at least 3 weeks and then you will be told know lifting, bending down and picking up.

My hair covered the scar and the scar is not that long.

Well, it worked for a year but now the pain is returning, so for, not has bad, but I am living in fear it will. It has also started coming now on the other side of my lips, but, with a burning feeling instead of the electrical shock.

Good Luck to you, If asked if I would have the surgery again, Yes, I think I would , at least I had a year, and so for the pain is controllable. I think next time I will consider the procedure where they go through the jaw and destroy the nerve. I have numbness from the surgery anyway in my tongue which is constant anyway.

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Linda,

Thank you so much for your detailed answers.

The surgeon who I want to do my surgery said it would be 2.5 days in the hospital for me. Also, although he is very experienced, he does not save the bone to plug up the skull, he just uses a metal plate.

It sounds like the trade-offs for doing the surgery worked out for you. Its really hard to decide what to do. I have had 1 surgeon who wanted to do the procedure through the jaw (rhizotomy), but I had 2 surgeons who told me I should not have it. One of the surgeons said that because most of my pain was in the top branch of the trigeminal nerve, that he would not do the rhizotomy.

If the MVD does not work for me at all, I will probably want to do the rhizotomy instead of a gamma knife. In the rhizotomy, they can control what branch of the nerve they zap. But there is more risks of numbness with the rhizotomy.

Don

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Erin,

Thanks for your post. It is very helpful to me to get this extra information and to confirm some things. The photo is very helpful. The scar looks great. Looks like it will be unnoticeable after the staples come out and it heals a little more. So glad you had a good experience with the MVD and I wish you continued good health.

Don


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Don,

You are very welcome. I too had many questions about the MVD process. I googled MVD blogs and gained a lot of insight that way too. I know it was risky to have brain surgery, but for me anyway...life was risky if I didn't have the surgery. I have three young kids and the drugs were no longer working ....I could not eat.... drinking water was near impossible. I had to do something so I jumped at the chance for life. I would do the sugery every 6 months if that was what it would take to live normally between time. Knowledge and understanding the procedure I think makes one recover quicker. Good luck to you. I hope you have and a pain free day. :)

Erin

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Don, you are welcome,

I would say that the MVD has been worth it and so for the pain I am experiencing is only twinges above my lip, it is a feeling like it wants to shock, but, so for hasn't. But it is nothing compared to the TN pain I was having before surgery.

TN is very hereditary in my family, which is unusual but fact. There are a total now of 7 of us on my Mother's side of the family. My Aunt and her oldest son had the rhizotomy procedure and have remained pain free, one for 30 years now and my Aunt for 25 and they take no medication. My brother had a failed MVD and had rhizotomy done twice and finally it worked and 10 months later TN came on the other side. He really tried to talk me into rhizotomy first, and I really wish I would have tried it first, because of it being less evasive.

I will tell you also, I was staying by myself the 2nd week after surgery and I rode with my sister, 40 miles, 7 days later and went out for lunch "which I might add, was not the smartest thing to do" but, I was able to do so, and made it just fine, just thought I might add that.

Linda

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Don,

I am too thinking about MVD, in fact one of my neurologists is calling me back Monday after she finds out how soon I can be scheduled. I have had a lot of the same questions, so thank you for asking them. Until I found this site, I wasn't able to find much from anyone that has actually experienced the procedure. Since I have many obligations as a single mom, I have been really worried about how long I will be unable to function and out of work. The consensus seems to be about 3 weeks. I can do that, but any longer willl be an issue for me. Good luck and keep us posted.

Thank you to everyone that has answered the questions for Don. It was very helpful for me as well.

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Hello everybody. Your inputs have been fantastic.

Dear Don, Your questions were so much to the point, they have been lingering on my mind for a while. I wish you all the luck in the world.

Two months ago, I was diagnosed with TN and so far 600 mg of Tegretol has kept the severe pain away,except for a day of attacks here and there. but for how long???

I read that MVD should be done at an early stage before TN gets worse.

I don't know anymore. Should I do it now? Should I wait until it becomes unbearable?

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"MVD - What does it feel like?" -- That's a great 10 questions, Don and 1,614 Members!

My 7 pad MVD was just over 4 years ago, holding the incontinent jokes for later!

1) Mostly alert, and very aware that I was pain-free.

2) Although bandaged, I tended not to sleep on my 7 inch, nearly quarter sized hole, 23 staple craniotomy.

3) Having been employed as a nursing assistant up until my "toothache", I really had fun in the hospital. I think they treat you special after a brain surgery, anyway:) It was a couple of hours when I offered to get up on my own.

4) Still have right side numbness, and a snare drum feel when I tap the wire mess hole. No problems with metal detectors;)

5) (+/-) 2 1/2 days

6) [Extenuating circumstances, I am SSDI since 2ND radiosurgery -- Statistically?] . Forget how long after MVD that I did return to work for about 3 weeks.

7) Friends are nice to have, I needed no actual assistance, stubborn that way.

8) The neckline is altered, it depends how close my barber (ME) cuts it with my clippers.

9) No, there was a serious failure two weeks to the day of surgery.

10) N/A

PS: I was "haloed" for Radiosurgery until the last minutes-that-seemed-like-hours, when whatever number MRI / CAT was read; and only THEN, the neurosurgeons decided to do an MVD. I'm glad that someone confirmed I have a brain and even brag that 'my brain has had fingers in it' - that is a longer, nicer [Trademark] version of what I usually say.

They are good, direct questions. Thank you, bob

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Bob,


Thank you for your candid responses. I am sorry that the MVD failed just 2 weeks after surgery. I am surprised to read of your last second reprieve from radiosurgery. But when I think about how my MRI has been read differently by more than a few surgeons, I could see how it can happen. It makes it awfully hard to decide what surgery, if any, to have.

David

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David,

I had many more than one MRI, (I joke that playing the CD's destroyed my last computer) and "my decision" to have surgery was only after developing Toxic Epidermal Necrolysis to Carbatrol.

The MVD failure, 2 weeks to the day, was only a prelude to my first radiosurgery, which also failed, 2 weeks to the day.

Pain makes decisions difficult. bob

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I had MVD Feb 2010 and here are some of the things that I went thru:

How long were you in the hospital? I had my surgery on a Thursday and went home Saturday. Started having drainage. Called the ER Sunday. was told to wait til monday to call my dr...They put me on antibiotics. Drainage was terrible by Friday went to the DR at about 12 noon and had Emergency surgery done at 2 in the afternoon for a spinal fluid leak

How long did it take you to go to work after surgery? I dont work...I cant

How long did you need assistance at home after surgery? I live alone and may need nurse service. I had my dad come and stay with me for about 2 weeks.

Does your hair cover the scar? Mine is long so yes it did....but the scar goes halfway down my neck so if it was short it would not. IfI pull my hair back in a ponytail you can see the scar and the place where my skull is out.

Did your MVD surgery work? Yes for almost a year to the date. Now I am back to full force pain daily.

If you had type 2 symptoms, was your MVD a success? No I have type 2 and it was not.

Not sure if you have had your surgery or not yet, but if so, I sincerely hope you have good results. Everyone is different. My neurosurgeon has told me there are more procedures I could try, but after the radiosurgery in May 2011 I am full of bad side effects from the procedures and still have my pain. Take care and I wish you all the luck in the world....

Billie

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Here is mine:

How long were you in the hospital? I spent 2 nights at the hospital. One in the ICU after the surgery and then in a regular room. No problem, no head aches no CFS leaks, nothing, the recovery was very quick.

How long did it take you to go to work after surgery? amazingly, 2 weeks. I was at work 2 weeks after the surgery. the bald part of my head was covered by the rest of the hair. I had an office work.

How long did you need assistance at home after surgery? I live alone and may need nurse service. You will need help. After the surgery I needed help for abut 7 or 8 days. The first 4were the most difficult because I was very dizzy. I slept a lot.

Does your hair cover the scar? yes, I have longer hair and it covered the scar. After a while, the scar became very thin.

Did your MVD surgery work? Unfortunately no. I started experiencing facial pain almost intermediate after the surgery, but it was controlled by medications.

If you had type 2 symptoms, was your MVD a success? I have type I and it didn't work.

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Hi there,

There are many success stories with MVD here in this site. I don't want to discourage you. Just make sure your neurosurgeon has a lot of experience.

If you have type I symptoms, this is a procedure that has in general good results.

Wish you the best.

Carolina

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Hi Carolina,

Thank you for your best wishes and reminding me there are success stories out there.

One question I have for you as someone whose MVD did not work, are you now basically the same as before surgery?

I am basically thinking that my life is so very difficult now that I should go through with the MVD, it is worth a try even if the rate of success is 40-70%

I learn a great deal from the unsuccessful stories. I learn from the successful ones too. With TN, every case is different. Doctors are less inclined to give details about what can go wrong with the surgery.

I found a very experienced surgeon and seen him, but need to get my insurance to approve. He says he is 70% successful with type 2 patients, which is high.

I have type 2 symptoms a long time, never had type 1, so I am concerned more than someone with type 1 that the surgery won't work.

I wish you well and hope that you find more relief.

Don

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like any other surgery they get your ready do the iv knock you out, you wake up with someone telling you to and your done. You dont feel anything but might wind up puking alot. I did for two days. I felt nothing and the awful hell i had suffered with was gone. I slowly got a headache but the meds took care of that, now i just find my self so tired, they wouldn't let me out of bed for three days i had the cathator and not much else happens but peeing. I watched tv ate meals once i could and just waited to go home