[Karen B]

Hello everyone,

I am trying to decide whether to have a radio-frequency rhizotomy and was hoping someone could share their experience with me.

I have typical TN and right now I am using Lyrica, botox and capsaicin. The botox keeps me so I can function, but for only about a month and a half at a time on a three month treatment cycle. I am in pain most of the day (chewing, drinking, talking, etc) but I can deal with the level of pain most of the time. The pain attacks are only a few seconds long, but I probably have several hundred a day.

I am hoping the rhizotomy will help, even if I can decrease the amount of meds. My Neuro does not want to do an MVD as there is no obvious compression on my CT scan.

I would love to hear rhizotomy experiences; good and bad. I wonder if perhaps because I am reasonably functional (I can work, visit friends, pretend I am not in pain,etc) whether I should be happy with the level I am at. The pain is draining so it is hard not to hope there is some cure out there.

I appreciate your help

[mean laureen]

Hi Karen. I wanted to let you know that I had a radiofrequency rhizolysis done on Dec.1st. In May of 2009 I had the gamma knife done and June of 2009 I had an mvd done. The mvd gave me one great year. I wasn't able to totally reduce my medications. The lowest I got down to was 500mg of tegretol a day. Then the pain started coming back. So far I am very happy that I had the radiofrequency procedure done. I've had no pain at all so far. I am reducing my medication down very slowly though. I was on tegretol, neurontin and dilantin. Now I am only on the tegretol and just starting to reduce that. But like I said, no pains! I am hoping to get off the tegretol totally or else only have to take a very small amount. I know that the radiofrequency only lasts an average of 3-5 years and then I will have to have it repeated but I think it will be totally worth it. I hope this helps you. Laureen

[MrBill]

Karen

I have been researching options for my wife including radiofrequency, balloon compression and others. She has an extra issue to consider in that she has Multiple Sclerosis. With TN and MS, MVD is not an option.

She/we have decided to go with a balloon compression combined with glycerol to be performed by Dr. Ken Casey in Michigan. He has found app. 8-9% improved results, longer pain-free period, with the combined procedure. As I understand destructive procedures including RF & BC offer an average pain-free period of 2 1/2 - 4 years for 50% of patients.

What every procedure you go with, the most important consideration is to select a surgeon with significant experience who can demonstrate positive results. If they don't know there success rates, run.

If you don't mind my asking, who is the doctor that would perform the radiofrequency? Where are you located?

[Karen B]

It is good to hear a positive rhizotomy story, thank you!

I am up in Canada and have not decided which surgeon to choose. My first choice, Dr. Honey, has a 1.5 year wait list just to see him! The surgeon I see next week sees TN cases right away.

As TN is fairly uncommon, how many procedures should I expect a good surgeon to perform a year? I know with MVD I have heard 20-30. Any ideas for RF rhizotomies?

I guess I also wonder when it is time for surgery. As I have written before, I am in pain every single time I eat, drink and during bad days even when I try to talk. But I can deal with it; after a year straight of being in pain I have learned how to. I would love to even just go down on my meds and be a little more pain free after surgery, I guess I am just terrified of anesthesia dolorosa. At least I am pain free at night, I am scared to lose that. Any insights into experiences along this line would be appreciated!!!

Stay strong everyone!

[Doodle bug7]

[I] just wanted you to know that I live with Anesthesia Delorosa and I live in a terrified state of being constantly. It was a trade TN or AD.

[jjlsongbird]

Sorry for taking so long to respond. I had a Rhizotomy in May of 1998. I was pain- and medication-free for maybe 4-1/2 years after that. At first I didn't like the numbness the procedure created, but after awhile it was comforting. The procedure threw my bite off and I can no longer move my jaw to one side, but that is no big deal. Just had to have some teeth ground down a little so I could chew better. I haven't heard of anyone else that had that problem and I must admit I didn't follow instructions to exercise my jaw by opening it wider and wider so I can't open my mouth as wide as I used to. (Makes it a little hard on the dentist but not too much.)

I decided on the procedure when 1200 mg of Tegretol plus morphine wasn't holding the pain. At the time scans couldn't show compressions and I wasn't ready to try a MVD.

When the pain came back, it wasn't as bad as before and lower doses of Tegretol took it away. I was fairly stable at 600 mg a day, though I hated the way I felt on it. Finally I decided to try a balloon procedure. I got a hemotoma (no big deal) which went away. A week or so after I got off the Tegretol, the pain started to come back. Back on Tegretol I went and over the next year the pain began to escalate. I added Topamax to the Tegretol. Still the pain was escalating in frequency and strength.

Finally I was ready to try a MVD. Scans showed that I might have several compressions and doctors do find compressions that don't show on scans when they operate. So I had my MVD in October of 2009 and taped off the medicine. I have been pain- and medication-free for over a year now. My neurologist is no longer following me - said I may not need him again, but call if I do.

The time to try something for me is when I can't stand the pain or the side effects of the medication or when the pain starts increasing frequency or intensity. There are no easy answers. I've read that having an outpatient procedure can lower the rate of success of a future MVD, though I don't understand why that would be. It sounds like you are putting up with a lot of pain - only you can decide if you have had enough of that and want to try a procedure to get relief. You didn't mention your age (or I missed it) and that is something to consider. If you are fairly young, several rhizotomies probably wouldn't get you through the rest of your life - so then what. I had the MVD at age 67 - I didn't want to have a rhizotomy then and need another something at age 72 if I could help it.

Good luck with whatever you decide to do! Keep us posted.