9 months pain free

Such absolutely wonderful news for you and Colin. Please, I ask both of you, to continue to post your progress and give us all the hope we need. I, for one, would love to know what doctor and hospital, city and state where you had your MVD??? Thank you both and sending my smile to you. 😊

I had mine done right here in Richmond, VA. Dr. Singh Sahni was/is my doctor and he is one of the preeminent TN doctors on the east coast. I cannot recommend him or his office enough.

Mine was done in Cambridge UK

D

Thank you Colin. I'm in SC so not that far away.

That maybe a wee bit too far to travel. Lol but thank you too.

I was TN pain free the moment I woke up in the ICU. I had a small headache which was mainly due to the surgery and the incision. I took to Tylenol for pain the entire 2 days I was in the hospital (ok, ok...extended release so I'm not such a tough guy) and that was all I needed. The TN pain was gone and has not returned. 10 months looms on the 15th of this month.

Joanne my pain was so bad I wanted to die. My surgeon offered me a Glycerol Surgery which I had twice, 2 months apart with only nerve damage as an outcome. One month following the second injection I begged him to do my MVD, which I had in March 2016, I've had a relapse but I'm not at any extent in the pain I was ever in before. I wouldn't hesitate in going for the MVD if your pain is so bad.

I had my surgery in Edinburgh in Scotland. I hope you come to right decision for you x

Thank you Frances. I've have done so much research, reading Striking Back and listening to what people say on this forum and also another I'm on. And it is leaving me confused. Whatever I do o would love to believe it would fix me. Of course, that's not realistic. I Will talk to new doc and see what he says. I just want to be educated and know what I'm talking about with him. And if he isn't familiar withTN then I would hope he would recommend a doc who is. 🙏

I started with a glyerol injection that had zero effect on me. My next step was Gamma Knife which had me pain free for about 3 months, give or take a couple of weeks. Once the pain came back from that, it was more intense than before. I then went to MVD and it's been a success for the longest thus far. Everyone is different and each doctor is going to have a different tx plan. The MVD is, other than severing the nerve, the last stop for most folks.

Hi Everyone

I agree that there is no "one procedure cures all" for this pesky disease, particularly as there seem to be several subtle variants of TN in many patients.

But I do think that often MVD is actually the first option for many, particularly is there is unequivocal diagnosis of arterial compression of the cranial nerve in question. This was the option for me after about 3 years of gradually increasing doses of Carbamazepine ( Tegretol) and more and more frequent breakthroughs of TN. The success rates in these cases is rather good - the stats are well known about this - although it is true that return of pain occurs in some. Like you say, some drastic damage/ cutting of the nerve is the only sure way of getting rid of pain completely, but the collateral damage/after effects can be quite a problem. However, faced with the only choice of deciding between continued pain or nerve cutting, I'd be tempted to go for the latter!

There have been quite a lot of posts on here and other forums (e.g. the TNA in U.K.) from people about to go for MVD or who have recently had it. I haven't seen too many posts from people who've had it a long time ago; we'll have to assume they've moved on in life and forgotten all about this forum. If they were suffering again, I bet they would be back to us? This might be circumstantial evidence to support success of MVD.

Good luck to all

Keep safe

Big D

Absolutely. MVD has, at my last check, a near 90% success rate (meaning little to no pain) at 10 years post surgery. That's incredible. The only reason my doctor didn't go with MVD to begin with was that all of my MRI's were inconclusive. Call it a thick skull, but even the last MRI showed only faint evidence of a vein or artery wrapped around my nerve. Upon opening me up, I had two huge arteries tangled up with my nerve. My doctor is confident that I will never have pain again as he was thorough in his "repair". I wish I had his confidence, but I think if I can go another 10 years without pain, I'll be happy and will do the surgery again if need be.

No I did not. My doctor saw enough from the standard MRI to know something was there so he made the call to do the MVD. I'm certainly happy he did.

I did have the specialized MRI, it was done at UNC Chapel Hill, but my Neurosurgeon saw the vessel on the regular MRI as well. 

My MRI was inconclusive until my surgeon opened my head he saw the problem!!!

F x

Thanks. My first neurologist saw nothing that's why I'm confused. I see his replacement next week and hope he can see anything wrong. I know I have TN1 so something is causing it.

Also, did you have a lot of eye pain with yours ?

Ok? So it was the neurosurgeon who saw it? That maybe what problem is....neurologist isn't skilled in seeing it. Interesting. Who was your surgeon and was he at UNC?

Thanks. Appreciate your info.

I had no eye pain. The only issue I ever experienced with my eye was some dryness but that went away after the MVD.

Hi Colin

Did you get any eye problems after MVD, temporary ones like double vision, continued dryness etc?

D

Nothing. The dryness has not reoccurred at all. No temporary issues either. My MVD was very to the point. The only thing I now have is facial numbness that is very weak and it comes and goes. The right side of my tongue is, I think, permanently numb but it's hardly noticeable anymore. My face continues to regain feeling though it will never be back to normal. That's a trade-off I won't ever complain about.

Yes, it was the neurosurgeon.  I had maybe 4 or 5 mri's over the course of the years, and every one of them was read and I was told that there was nothing there.  My neurosurgeon took one look at the regular MRI and showed me the vessel and then ordered the in depth MRI to see it in detail.  His name is Dr. Ewend and he is the head of the department at UNC Chapel Hill.  Besides the fact that my pain did not resolve, he did an amazing job, I've had no side effects and had a very quick recovery.  He did a follow up MRI to verify that the nerve was not in contact with the vessel anymore and that the pad he put in was still in place after a couple months and I had not experienced pain relief.  My pain had being going on for 6 years before I had the surgery, so the theory is that the myelin sheath was rubbed off and damaged.  Good luck to you!

The time frame is one of the reasons I did my MVD when I did. All of the studies I read and researched pointed to the sheath damage. I did not want that and I think my efforts paid off.