I have less than a week until I undergo keyhole MVD at Duke Raleigh in NC. My surgeon pioneered this technique and has done it 2500 times with a 96% success rate for treating TN. I am hopeful that this is my cure! I have suffered severe electric shock pain under my teeth for almost 4 years. Have no remissions anymore. Trileptal worked for awhile but recently had to up the dose and just can't handle the side effects. It was giving me a burning mouth type sensation and almost made me feel like my throat was closing, though it wasn't. So, I'm counting down the days and trying to be brave. This procedure will be easier to recover from than standard MVD as the surgery site is smaller and less invasive, if you can call an extra hole in your head non-invasive...lol. I have done my research and feel this is the right choice. I will post results. Prayers appreciated!
you have my prayers. I really do pray that you have an uneventful surgery, recovery & finally get to be pain-free.
I had mid in philly on the 6thnews I woke up pain free! I wish the same for u ! Best wishes!
What is the difference between this and the standard MVD I think I had?
The surgery site is dime sized, with a much shorter incision than MVD. Recovery time is also shorter and easier. I will supposedly have no restrictions after 10 days if all goes well. It is like micro-surgery as opposed to the full craniotomy of traditional MVD.
Good luck & is very interesting. I had the traditional MDV & was VERY nauseous
But the meds finally kicked in. Did they tell you that would happen? Maybe not with your procedure.
Also need to wean off the meds. Trust me don’t go cold turkey like I did, you will pay with lots of pain. Wasn’t told about that!
Oh just read a later post & the nauseous was from the craniotomy.
So it shouldn’t happen.
Linda Faye said:
Good luck & is very interesting. I had the traditional MDV & was VERY nauseous But the meds finally kicked in. Did they tell you that would happen? Maybe not with your procedure.
Also need to wean off the meds. Trust me don’t go cold turkey like I did, you will pay with lots of pain. Wasn’t told about that!
I have pre-surgery appt Thursday and definitely plan to ask about anti-nausea meds. I'm on 3 small doses of Trileptal per day and they did say I would need to ween off. I'm going to try to cut it back to two this week before surgery. But the pain kicks up a good bit if I go more than 6 hrs between doses. At that, pain is still always around 3-4 level with meds currently. Feels like an ice-pick under my teeth. What are others' experience in ICU after surgery? How long until you get up? Did you have catheter when you woke up? I have a list of questions ready for my appt. Will be glad when this is over.
Oh yes had the catheter but wasn’t too bad ( was freaked @ it before the surgery). Was in ICU for @ 20 hours . Surgery was Thurs afternoon & went home Sat by noon. I wouldn’t cut back before on your own I would listen to the Dr. I think I had to stop before the surgery because I was out for the surgery. Ice pick is a good description.
Actually even showered by myself before I left the hospital.
How small are your doses of trileptal? Good to have a list of questions.
150mg 3 times a day. 600 mg/day worked well for a while. To the point that I changed first surgery date. But pain started breaking through again. Tried to up dose to 900 mg and got burning mouth side effect that I could not tolerate. Haven't had remission of TN since Oct. It used to ease up after a momth or so of pain. But after 4 years of this, I'm done. I'm only 44. I can't imagine living with this for the rest of my life.
All the very best, you will be in all our thoughts. Cannot wait to hear you come back and tell us how wonderful you feel.
Hi,
Can you let us know how your surgery went? Are there any other doctors who perform the Keyhole MVD .
I am almost at the 6 month post surgery mark and doing well. I have had no electric shock pain since I came out of anesthesia. I have had some numbness and mild burning, but this is much better than it was in the weeks after surgery. I notice this more if I am under stress. It is still nothing compared to the pain I was in before surgery. I have posted several other things about my surgical experience. I think you can find those posts by clicking on my name. There is also lots of good information in the MVD forum under groups. Best wishes!
Thanks for your response.
Did you have a standard MVD or a keyhole MVD.Keyhole MVD seems to be less intrsuive.
My MVD was I guess what is called keyhole. My surgeon pioneered the technique he uses and it is a smaller hole in skull than the standard quarter size. My incision was about 3 inch total and the hole in the skull about the size of dime they said. Recovery was still no piece of cake, but I do believe it was easier than it would have been with a larger surgical site.
Thanks.And do you know if any other places in the country have this keyhole surgery?
TMSIS said:
Thanks.And do you know if any other places in the country have this keyhole ?
who is your doctor in Raleigh?I need surgery and would like to go to him!!
Your are in my prays!
Dr. Fukashima, CarolinaNeuroscince.com. Look him up.
if youre going to dr fukushima he is fabulous i loved him. i recovered quickly. at the time i only had type 1 TN in all three regions he did my 1st MVD and i was pain free as soon as i came out of surgery and it stayed that way for nearly 3 yrs. but the TN pain returned. he did a 2nd MVD but it didnt work but by then i had type 1 TN again in all three regions on the right side as well as occipital neuralgia and type2 TN in regions 2 and 3 on the right side. so you might have more success. i wish you the best
if youre going to dr fukushima he is fabulous i loved him. i recovered quickly. at the time i only had type 1 TN in all three regions he did my 1st MVD (also at duke raliegh) and i was pain free as soon as i came out of surgery and it stayed that way for nearly 3 yrs. but the TN pain returned. he did a 2nd MVD but it didnt work but by then i had type 1 TN again in all three regions on the right side as well as occipital neuralgia and type2 TN in regions 2 and 3 on the right side. so you might have more success. i wish you the best