Hi All, I am having a nerve burn done on the 26th of April. Can any one give me any feed back ASAP> Thanks in advance for any help you can pass along.
Hi,
About 2 yrs ago I had my nerve cortorized about "65%" I'm told. The good result lasted about 4 mths for me. I have TN1.But, I do believe that the results vary per person.
Jackie
I don't know. I haven't had anything besides meds. My neurosurgeon and I decided that when meds don't work much, then we will do the MVD. But I just wanted to say good luck to you!
I would NOT have any nerve burn unless you First send a message to the moderator RED --- He is all knowing here!!!!!
I will also message him your link here.
Dancer's comment made me smile. I'm no oracle, though I've been talking with face pain patients for about 18 years and I'm well studied in medical literature for this field.
If you are talking about RF Rhizotomy, then the procedure has a good record of outcomes for a lot of people. Some papers in medical literature indicate initial success rates of 85-90% for full or major partial pain relief, with about 50% of all patients remaining pain free after seven years. If you're going to have the procedure done, then be sure the physician who does it has done a lot of them before (like 20-30 per month in TN patients). Be aware also, that the procedure has better outcomes for patients with Type I (Typical) TN than for Type 2 (Atypical). A lot of neurosurgeons won't do this procedure for people with atypical pain, because there are reasons to believe that this type of pain has a systemic or central Nervous System character that is less susceptible to relief from a discrete lesion being created on the nerve.
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Regards and best,
Red Lawhern, Ph.D.
Resident Research Analyst
Hi All, Thank you so much for the feedback. I am very nervous about all this. I am in a wheel chair form an accident in 96 and I've had a LOT of operations because of it and other things. So I feel better about all this now. I have I guess type . Thanks Red for taking time to reply and of course all you others thank you so much.
Ralf said all that.
I just had my second radiofrequency rhizolysis procedure on March 1, 2013. I had gamma knife done in 2009. Two weeks later I had an MVD. My first RF procedure was done Dec. 1st, 2010. I've been happy with both RF procedures. You do get pretty numb at first when the procedure is over. I have just learned to get used to it. I would rather have numbness than pain. You can ask me any other questions you may have about it. I am happy I have had it done both times and will do it again if need be.
hav2hope said:
I just had my second radiofrequency rhizolysis procedure on March 1, 2013. I had gamma knife done in 2009. Two weeks later I had an MVD. My first RF procedure was done Dec. 1st, 2010. I've been happy with both RF procedures. You do get pretty numb at first when the procedure is over. I have just learned to get used to it. I would rather have numbness than pain. You can ask me any other questions you may have about it. I am happy I have had it done both times and will do it again if need be.
Hi, Thanks for the invite of questions. Did your numbness ever recede? Did you have any drooling from the corner of your mouth? Did you have nay problems with biting your lip of tongue? Thanks again for the help. Like I said I've had so many operations that I'm getting paranoid about them.
Ralf said all that.
Hi Ralf. The numbness has receded a lot. My chin and bottom lip on that side and also my ear are still pretty numb. You get used to it though. The numbness is a good thing though because when it wears off is usually when the pain comes back. I've had no drooling at all though and no biting my lip and tongue. Hope this helps.
Hi hav2hope did you have any eye problems blurr or double vision with your RR surgery ?
What do these treatments cost? Will Insurance cover these procedures?
after a year of horrible drug side effects, pain pain and more increasing pain five dentists four doctors i finally found one that would help me. He basically said that meds won't work for me, there was no option but for surgery. He recommended that i have the mvd as it is the most successful. Yes more invasive but better results. At this point i was tired of screwing around and was so defeated by pain i risked the horror stories i heard of mvd and did it. the surgery is like any other. You get a gown, the iv some drugs everyone talks to you and then bam your knocked out. You wake up to someone telling you to and that it's all over. I have a high sensitivity to anesthesia so I puked for a day or so. as for pain they give you drugs nothing you can't handle. You are sitting up in bed day 2 wolfing down food but you are tired. I had mine last week, i find i am very tired, my speech was slower but i do have some hearing loss. The Doctor tells me its water and will go away. The nitemare pain is gone i would do this again in a minute i should of done it a long time ago i have some headaches but not bad all these things i am told will go away i'd take this over that nitemare nerve pain anytime
Redbird, MVD and RF Rhizotomy are both covered by a lot of medical insurance plans. The cost of MVD is much higher, as it's done in an operating room under general anesthesia. I've heard numbers between $70 and $100 thousand before insurance. Medicare will cover it if a neurosurgeon declares it to be medically necessary.
Regards, Red
Have2hope did you have any problems with swallowing ?
I have my RF June 27
Has anybody had trouble with Gabapentin …?
Hi Donna,
I'm sorry I never checked the second page of your discussion. I had my RF procedure March1st. Still doing great. I'm still slowly decreasing my meds. I'm down to 900 mg of tegretol as of today. The lowest for me in a long time! I was on 1500 mg before my RF. Also was on Dilantin 200 mg (off of that now too). I'm still on 900mg/day of gabapentin. Haven't tried to reduce on that one yet. I had absolutely no problems with my eye after the procedure. A little bit of pain with swallowing off and on at first, but that has gone away. Pains in my ear too, but that is gone also. I am actually doing wonderful right now and hope that I can get a long time of being pain free. With my first RF I got about 1 and a half years before I started getting some pain but was able to go 2 and a half years before the second RF. I've been on gabapentin off and on for the last 4 years. Never any problems for me. How are you feeling since your RF? Laureen
HAve2hope…the RF didn’t work for me I started back with shocks week after but still numb around the eye. Don’t know why it didn’t work. Are you really numb around you mouth? He said we could try it again but I don’t want it not work again and leave me really numb… I hope you the best with yours maybe you can get off of all the meds … Good luck …God bless… Donna
Donna,
I'm sorry it didn't work for you. It worked for me both times I had it done. I have tn1 in the 3rd branch. My surgeon told me he always errs on the side of caution when he does RF procedures. He doesn't like to give it the most heat he can so as to not cause so much numbness. A lot of my numbness has worn off since it was first done. The most numbness is really just on the bottom half of my lower lip on that side and a little bit on my face right in front of my ear. It really doesn't bother me anymore I'm so used to it. When I had my first RF done in 2010 I had a lot more numbness. This second time he did tell me that he could go back in and do it some more if I didn't get the desired effect. The first 3-4 weeks after I had this second RF procedure done I thought that it had failed because I was having a lot of different pains and in places I had never had them before. He told me when I went back to see him that all of that would subside and he was right. I wish I could give you some good advice, but everyone is different and has different outcomes of course. I know for me I would definitely do it again and probably will have to in the future.