Before During and After MVD

General General TN & GPN (Old Site)
1

For those of you contemplating MVD I offer my experience:

Last week I finally decided to undergo MVD for my Trigeminal Neuralgia, I have had this affliction for the past 2 1/2 years, using the usual drugs to try to control the pain.

The drugs did not work for me as I had an active lifestyle and I found that taking the Trileptol and Bacofin in increasing dosages was seriously affecting my mental state in as much that all I wanted to do was sleep.

I did not want to mess around with different drugs I want it fixed.

So on November 7 I visited my second Neurosurgeon Dr Heroes at “Sylvester Cancer Clinic” in Miami and told him that I was ready to undergo the operation, he spent an hour with me going over my options to include the usual Gamma knife, laser knife and Injections all which I rejected on the grounds that I did not want numbness in my face.

So it was agreed that I would go undergo MVD, I was booked in last Thursday for the procedure to take place on Friday

This was when it became a little more complex, while I was in pain when I saw my neurologist three days before I was admitted I went into remission. So there I am sitting in a hospital thinking they're going to drill into my skull and I do not even have any pain. I tried manipulating my face, rubbing it brushing my teeth, sticking out my tongue all the usual triggers...nothing.

I talked myself in and out of going ahead with the procedure and on the day of the procedure which was to be at 1 PM I was still having doubts

I called my wife and asked her what should I do, at that time was on her way to the hospital she said just wait till I get there, unfortunately right after I hung up the phone in walks a female doctor who said “it's time”. I expressed my concerns to her I even asked what would you do? Would you allow someone to drill into your skull when you head no symptoms? She could not answer that at 11am they bought their gurney to take me to the OR now I was totally at odds with myself.

The doctor suggested that Dr Heros (my neurosurgeon who would be performing the procedure) to talk to me.

Dr Heros came to my room and told me that it was a simple procedure (don’t think he had watched the You Tube videos) and that it carried minimal risk.

He went on to say that the pain will come back and will never goes away while the nerve is traumatized.. OK Do It. (Called the wife back and told I am doing it)

Jump to; waking up (as after that injection you are gone)

My mouth was so dry but I was still totally out of it, I had bit my lip at sometime and that was swollen I thought to myself man this sucks; little did I know this was only the start.

I had been in the OR for 6 hours (I will find out why so long on Monday when I have the follow up and remove the stitches)

The wife gave me a few small slithers of ice that as soon as it hit my stomach I started to heave which really hurts when you have nothing to bring up. My head was throbbing and dry heaving is never really comfortable this went on for I guess a few minutes I settled down and after a few hours the wife had to leave and the longest night of my life began.

I was left in recovery as there were no beds available in the ICU, after the wife had gone home I could not sleep as I was starting to feel nauseated again this grew and grew till finally I started to heave again this time my stomach was complexly empty.

The nurse gave me a spit cup and a box of tissues then left I was heaving for at least 15 minutes but not once did she help to wipe my chin which now had mucus running down it. I tried to sleep but that was impossible as I felt so bad I wished I had listed to myself as TN1 was never this bad… was it? 2am..3am..4am..5am finally I think it was about 6am they moved me to ICU. The dry heaving continued I could not drink as it just made it worse but at least the nurses were very attentive.

After two days of lying in that bed (The TV did not work) just staring at the stain on the ceiling I get discharged.

Now 7 days after the op I am eating and drinking no TN pain bit of a headache sometimes and the incision site is sore but it is done.

The only other annoying side effect is noise, everything seems to sound sharp (like china being stacked) it seems my hearing is 30% better people talking are loud I have to keep saying talk softer the TV is turned down to what I remember I would never be able to hear but now I can hear it fine at low volume.

So the question is did I do the right thing?.....It is difficult to remember the TN pain I mean you can remember it hurt but you cannot remember the intricacies of that pain you cannot feel it in real time as you don’t have it.

After I fully heal I will think it was to right thing to do, but would I do it again if I go back to the pain?…….I really don’t know.


2

Hi there - I think you made the right decision, in my opinion. I am 3 1/2 weeks from my MVD surgery. I did not have a remission and had my TN for 10 months before surgery. Like you, I cannot stand the drugs and with my active lifestyle (teenage daughter, driving kids all over, fitness instructor, etc.), I could not live like that. Plus every few weeks the TN pain broke through to the point I had to pop a vicoden or 2 and up my dose, leading to even worse side effects. I was a merry-go-round that I HAD TO get off. My surgery experience was similar to yours. The first 24 hrs were hell. I had the worst headache of my life and, like you, was dry heaving all night and day. I couldn't get comfortable at all but did have some good "pass out" moments right when I was given the phetenyl (sp?). It didn't last long though and I had to then wait with all the nausea, dry heaves and pain until the next dose. I was much better though the 2nd day in the hospital and am doing very well now at 3 1/2 weeks. I felt really better after about 2 weeks. I had a similar situation with my ear. It was super sensitive to any noise but that does go away. At this point, I can barely tell that that ear is different from my other. Still some clicks, pops, and "stuffiness" but no sensitivity at all to even loud noises (i.e. a spin class). I'm actually walking, running a bit and even took a spin class today (left early) and all is good. The only downer for me is that I am still on my full dose of Tegretol since my TN pain has not left yet. I know that I need to be patient though as my nerve needs to heal. It seems much more sensitive now but not really any more pain (the med is still covering it well).

I will never regret having had this surgery. I know though if I did not have it, I would most definitely regret that. Best wishes for a speedy recovery. Praying that your TN pain stays away forever!

3

I too went into remission ,and got off med right before MVD… after I bought my plane tickets!

So it did make it more worry… But I haaaaaaated meds so bad…

2 years later in remission, no pain no meds, no regret.

4

I was also in your same shoes. I did not have pain about 2 days before the surgery but since the surgery and the complications, nausea and vomiting--- I do not regret my decision at all. My surgery was on 10/29 and then had to go back under to fix my incision site cuz I had a CSF leak. I have had no pain and have not had to take any meds for the TN at all. The only meds I take are the Percocets and Xanax that my neuro prescribed to me for after the surgery. My hearing is also sensitive, and tell everyone around me that they have to speak softly and everyone has been very accomidating, but I have only been home for 6 days but I have noticed that everyday seems to get better.

As for the nausea and vomiting have your doctor give you something such as Zofran or Phenegren. Zofran does not work for me so I had to have the other.

Stay positive because it does get better, I had the exact same thoughts before surgery.

Make sure you rest daily and take it very easy, I have also noticed that the more I do around the house I start to feel dizzy, tired and can't think clearly. So stay in bed and let everyone else cater to you.

5

Hi I am like Brightonuk and having been going back and forth but are 90% sure I’m going to do it…I am curious as a female how was your scar and what about shaving your hair? I know small things in respect to the whole procedure :slight_smile:


mybell said:

Hi there - I think you made the right decision, in my opinion. I am 3 1/2 weeks from my MVD surgery. I did not have a remission and had my TN for 10 months before surgery. Like you, I cannot stand the drugs and with my active lifestyle (teenage daughter, driving kids all over, fitness instructor, etc.), I could not live like that. Plus every few weeks the TN pain broke through to the point I had to pop a vicoden or 2 and up my dose, leading to even worse side effects. I was a merry-go-round that I HAD TO get off. My surgery experience was similar to yours. The first 24 hrs were hell. I had the worst headache of my life and, like you, was dry heaving all night and day. I couldn’t get comfortable at all but did have some good “pass out” moments right when I was given the phetenyl (sp?). It didn’t last long though and I had to then wait with all the nausea, dry heaves and pain until the next dose. I was much better though the 2nd day in the hospital and am doing very well now at 3 1/2 weeks. I felt really better after about 2 weeks. I had a similar situation with my ear. It was super sensitive to any noise but that does go away. At this point, I can barely tell that that ear is different from my other. Still some clicks, pops, and “stuffiness” but no sensitivity at all to even loud noises (i.e. a spin class). I’m actually walking, running a bit and even took a spin class today (left early) and all is good. The only downer for me is that I am still on my full dose of Tegretol since my TN pain has not left yet. I know that I need to be patient though as my nerve needs to heal. It seems much more sensitive now but not really any more pain (the med is still covering it well).

I will never regret having had this surgery. I know though if I did not have it, I would most definitely regret that. Best wishes for a speedy recovery. Praying that your TN pain stays away forever!

6

I am surprised that the surgeon did not tell your wife what he found, after surgery or you before you were discharged. if you had a compression of the nerve by a vein or artery, I would say you did the right thing by having the surgery. I have not seen anyone post they were in remission for years and years. I had my MVD on Sept 17th, and had no nausea at all, my but my complication was a allergic reaction to the teflon, which caused fevers and headaches and nerve pain for 8-1/2 weeks, Finally over that and have started to slowly drop down on my meds. The number of TN attacks per day are done by 75%, but still get pain from my normal triggers, but the pain is different, more dull and aches verus the sharp stapping pain. The surgeon told me the nerve has been damaged from the compression and i may not be able to get off the meds completely,

Good luck

7

You made the right decision. I suffered with TN pain for 8 years and the last 30 days were just awful. I sat in a lounge chair day and night for a month in excrutiating pain.had my surgery on New Years eve and like you the day of my surgery my pain eased almost to the point of none. I also questioned whether I should go through with the surgery but knowing that it would come back I knew this was the only possible answer. Went through with the surgery and best decision of my life. Been pain free for 30 years and the MVD gave me my life back.....You made the right decision

8

Am I the only one who had a neurosurgeon that did such a great job pushing atl-nausea medication that not once between two surgeries, was I ever nauseous much less throwing up?? Maybe it was me telling how bad I hate having a upset stomach that got him to do it, I do not know. All I know is my stomach was fine all the way through it.

9

The terrible nausea and vomiting I had for 8 days after surgery I was told was due to the tn nerve being in such close proximity to the nerve that controls balance, so that in turn causes the nausea. Over time it settled right down then disappeared.

10

HI Kristin,
Do it!
Here is the scare 10 days after surgery now it is nearly gone still a little tender in places but each day it gets better the only other issue I have is a numbness in proximity to the scar that I am hoping will disappear as time goes on.
I have no TN pain at all.

230-Scar10.jpg (289 KB)
11

Hi John, I actually had a remission of EIGHT years on my Right sided TN and TEN years on my Left side.
I was diagnosed with Bilateral TN in 2002.
I have yet to hear of anyone else with a remission of that length… Mimi



John said:

I am surprised that the surgeon did not tell your wife what he found, after surgery or you before you were discharged. if you had a compression of the nerve by a vein or artery, I would say you did the right thing by having the surgery. I have not seen anyone post they were in remission for years and years. I had my MVD on Sept 17th, and had no nausea at all, my but my complication was a allergic reaction to the teflon, which caused fevers and headaches and nerve pain for 8-1/2 weeks, Finally over that and have started to slowly drop down on my meds. The number of TN attacks per day are done by 75%, but still get pain from my normal triggers, but the pain is different, more dull and aches verus the sharp stapping pain. The surgeon told me the nerve has been damaged from the compression and i may not be able to get off the meds completely,

Good luck

12

That looks great! Thank you for posting your picture...best of all you have no pain right now either! Ill be scheduling my surgery on Monday. :-)

Brightonuk said:

HI Kristin,
Do it!
Here is the scare 10 days after surgery now it is nearly gone still a little tender in places but each day it gets better the only other issue I have is a numbness in proximity to the scar that I am hoping will disappear as time goes on.
I have no TN pain at all.