Hi has anyone had internal neurolysis for atypical TN ? Ive had everythibg else u can think of now they wanna try this. I have TN1 and TN 2 . 1000’s of shocks a day everyday non relenting . Worst case my neuro has ever seen .
Dee230, sorry to hear you are in such pain. My pain was astronomical before my second rhizotomy with Dr. Lim at John Hopkins Hospital in Baltimore Maryland. my pain now is minimal but I’ve been able to live with it. It might help if you research it and ask your neurologist. I’ll be praying for your relief. Gloria
I’ve had atypical TN for years. The symptoms didn’t really kick in (or get officially diagnosed) though until about 5 years ago. My job as a pilot was put on hold and I originally was recommended for a more conservative stereotactic radiosurgery (the meds wouldn’t allow me to get back to work). It worked for about 18 months, but the TN came back. I was referred to Dr. Kim Birchiel at OHSU in Portland who recommended the internal neurolysis procedure. I had that performed about 2 and as half years ago now and so far, it’s been great. I’m back at work, and things are back to “normal” now. One thing for sure is that there are side effects, and it’s all about priorities as to whether you’ll be willing to put up with them. For me, it was a no-brainer… if I wanted to keep my job, I had to accept the risks and consequence. Since the surgery, the right side of my face is numb (not completely, but noticeable) and my tongue too which took some time to get used to. Honestly though, its blessed relief in comparison to TN pain. The “worst” thing is that if I eat out, my wife has to occasionally point out that I have some food on my chin that I can’t feel … good luck with your decision and feel free to reach out if you have questions… I’m happy to tell you more about my experience if you have specifics.
Thankyou so much for your reply, its just what i needed to hear.
I was aprehensive to 'open up ’ my head again after having a failed mvd. The pain i was in post surgery was insain and im stil , 2 yrs later having pain at the surgery site .
But you are right in saying its a no brainer, life has stoped for me once again too , no work, no social life.
Ive been having 6 monthly glycerol injections so i get what you ate saying about the numbness, i have it in my tongue a bit , and like you i have food issues hahaha
Ive also hot it in my eye and thats my surgeons biggest concern is that ill lose all feeling in eye and yhe complications from that are pretty full on .
I do have a couple questions if you dont mind…
Did it effect your eye at all ? As in numbness
Did you end up with facial palsy?
How long til you were back on your feet living ‘normal life’?
Thanks again so much im really glad i found this page, appreciate all your advice .
I should add this proceedure is very new to australia where i live so we dont have alot of info on it . My surgeon is one of the only ones here to have ever done it .
Hey, I just had the procedure from Dr Burcheil 3 weeks ago. My head is numb on the right side, but I’m pain free and really happy I did it. I was in constant pain for 3 months before, diagnosed 10 years ago. Go for it as long as you trust your neurosurgeon. No regrets here…
Hi thanks for your reply . Im so glad to hear you are doing well. Can i ask you what the surgery pain has been like straight afterwards? After my first MVD i was in horrendous pain for the first 4 days to the point i swore id never do it again. Im just a bit rwluctant to go back to that.
Well, I’m up, it hasn’t been unbearable. I had some weird neuropathy on parts of my skull for the first week or so. Getting pain managed in this age of opiate addiction is difficult too. Once we got it though it’s been very tolerable. I went back to work as a hair stylist today and I should be completely off pain meds in a couple of weeks. Now I mostly feel a tightness in the incision and a bruised skull. I’m 4 weeks out on Monday. I hope this helps and feel free to ask me anything.
Oh wow back to work at 4 weeks …you are amazing ! Thats really re assuring , thankyou . I am completely out of options so i really have no choice but to do the operation , its been so much easier to accept after speaking with you all on here.