Microvascular Decompression

Hope you get better soon.

I had exactly the same things done 4 weeks ago and I am also still in pain. I have atypical TN. Yours is also atypical? I am in total panic now! I was hoping to be pain free after MVD. I am thinking all the time is my operation failed or does it just take some more time for the nerv to calm down. How are you now? Are you pain free and how long did it take?

Hi TomsMum!

So glad to see your post on this. I have just seen Mr Mcfarlane today and the MRI confirmed the classic compression of my trigeminal nerve by the local artery. The compression looked rather significant to me and I'm so relieved that I've got a clear diagnosis and therefore a logical reason for MVD. Need to decide when/how now and also weigh up the possibilities of me continuing on heavy doses of carbamaz. Luckily I don't react to badly to it, but I do get rock-n-roll breakthroughs of pain which I don't think I can take for more years.

Anyway, great to read of your comments about the Addenbrookes team, very reassuring

Keep safe

I am just reading your message.  I have had TN for about 20 months now.  Taking Tegretol and is essentially controlled on 800mg Tegretol but beginning to think about the MVD procedure.  I have seen a well respected surgeon here in London but still v.afraid about the procedure although MVD seems to be the only suitable option for me. I think maybe best not to wait until the pain becomes uncontrollable and then have to have surgery in a panic so was glad to read your message which makes things a  bit less frightening.  Do you know if your numbness and painless shocks are supposed to eventually disappear?  Any problem with your hearing? Did you have lot of pain after the surgery? Louise

Louise,

From my readings, research and general understanding, most doctors feel that allowing the pain to go on much past 2 or 3 years presents the possibility of the damge to the nerve becoming permanent. Not every expert thinks that, but many do and for me, that was what sealed it for me. Again, I'm young relative to this issue so the idea that I have a possible 40 or 50 more years with this problem is less than appealing.

My doctor thinks that the phantom pain and numbness will go away with time. Again, from what I have read and understand, that can take the better part of a year. Some people experience the phantom pain forever, but that's hardly an issue as it isn't pain at all. It's a reminder of what you have lived with.

Post surgery, I had one time during which I asked for a dose of morphine and that was shortly after I woke up. Upon waking from the slumber that dose placed me in, I didn't have to have anything more than tylenol. I went home without any pain pills other than having my wife get a fresh bottle of store brand tylenol for which I used perhaps 3 or 4 days worth. My pain was extremely minimal. The only thing I have right now is the tenderness of my scalp from where I was bolted to the table. That can last a while too but again, it's only tenderness, not actual pain.

My hearing was perfect before and after the surgery. So long as the nerve remains unmolested, there is no chance of hearing loss. The problem is when the nerve is touched and moved. A good surgeon won't have to do that or will be exceedingly careful if they do.

Thanks so much for your reply. I really appreciate it and it is very helpful. Louise

Hope it all goes well for you!!

I wish for this post to be seen by anyone considering the MVD procedure for Trigeminal Neuralgia. By no means do i intend to scare anyone and anything i post here is just my experience. I don't intend to say that this will happen to you but you should ask your surgeon about all of these things and make sure you get an experienced one.

I had the MVD procedure March 29th 2016 to fix TN of the 3rd cranial nerve ( pain occurring in the lower left lip area ). My complication was that the TN nerve was being pushed by the Basilar artery. This as it turned out was a very rare case and after interviewing several surgeons, i found that of all of the surgeons that had done the MVD procedure, none had encountered the Basilar artery as the offending blood vessel. ( The basilar artery is very thick compared to smaller blood vessels which are ususally the one's causing problems for most TN patients, so my case was always going to be complicated). During my 18 months of pain pre-surgery, i tried Carbamezapine ( didnt' work at all), Gabapantin ( didn't work at all), Trileptol ( didn't work at all) and finally Tegretol which worked somewhat, but i kept having to increase the dose all the way to 800 mg per day and that too would not control the pain all the time. Reoccurance happened every two to three days.

Now to the surgery - I read and researched everything i could before deciding on MVD. All the posts i saw and based on my case, no other treatment seemed like it would be a lasting solution. Gamma Knife, Rhizotomy, Glycerol injections, Baloon compression etc, none of those according to my research and consultation with several surgeons were going to be a solution. MVD, although invasive, was supposed to be the only lasting solution to this horrible pain. Evey post i read , patients said they recovered in 2 weeks post surgery and were back to work with no TN pain. So MVD it was for me too.  Well, things unfortunately went wrong for me. The positive note is that the TN pain is gone so far. Praying that it does not return, however, during surgery, the surgeons decided to do a partial Rhizotomy as well. Rhizotomy is a tricky procedure and one really has to know what they are doing. My whole left side of the face is totally numb ( not just the TN pain area), which to me could mean that the surgeons took it in their own hands to damage much more of the TN nerve than they needed to. I also have a pulling sensation on that side of my face that lasts 24 hours a day and it's incredibly uncomfortable. I don't have a sensation of how to chew food on that side without it sometimes coming out of my mouth and is also a problem when drinking liquids. It's hard to explain but when you lose that kind of sensation, your focus on the basic things like eating and drinking has to be there and those activities that were second nature are no longer that. Smiling feels awkward as you think your face is swollen. I asked the doctors about this and their answer was " well, it's better than the TN pain right?" I don't know how to evaluate it. TN pain was severe and intense while it lasted and i would say was definately worse than anything i have been through, but this bears down on you 24 hours a day and it gets me exhausted just fighting it all day and concentration on work related activities becomes very hard.  Post surgery, i had severe headaches and was unable to sleep for several days on end, this lasted 3 to 6 weeks. Finally, the worst headache occured around May 12th, around 6 weeks post surgery. This headache was like an explostion in my head. I have never felt anything like it and i don't know how i didn't pass out, but i was taken to ER for it. They gave me Morphine, it did absolutely nothing, then i got two doses of Delaudid after that and after the second dose, they headace subsided by 70 percent, but returned to full flow 3 hours after i was released.  Next medication from the surgeon was a steroid . After the first day dose of the steroid, the headache was gone. The MRI report that came a few days later from when i was in ER showed a Pontine Infarct.  I spoke to the surgeons about it and they denied that there was indeed a micro brian stroke that occured. They took a stance that the radiologist was wrong in reading the report. I showed the report to another Neurosurgeon and two other radiologists and they all confirmed that it was a small stroke, most likely a result of something that went wrong in surgery. The explanation i got was that the basilar artery has several small branches of blood vessels that connect to the pontine area and also supply blood to the brain, and it's likely that during surgery, they accidently ruptured one of them which later resulted in the minor stroke that i had. Anyway, the surgeons continue to deny that happend and have really provided no support after the fact. They have not even set up future appointments to see how i am doing. During my recovery, they also refused to prescribe me any meds stronger than Tylenol 4. When  complained of post surgery pain, they wanted me to see another dept for pain management.  All of this happened with a well known surgeon at a major hospital in Texas.

I just want people to know that before going through this procedure, ask every question imaginable, write notes of what they say. Don't get swayed by only reading experiences of people who have had 100 percent sucess with no side effects.  I understand that in some cases like mine there is no other solution other than MVD, but i think the surgeons should have clearly explained how bad Rhizotomy would feel and that they don't know if the nerve will ever regain full sensation or not. Also, the way they have ignored my following the pontine infarct that they caused should not happen to anyone.  Please feel free to ask me anything.