Hi
I was wondering if anyone with MS has had surgery for their Pain and if so what did you do? The reason I ask is with ms you have a lesion that is messing with the trigeminal nerve so when and if it calms down you might go in to remission. But if not is surgery really going to help? My dr suggested the gamma knife I am just not sure. Right now I am doing accupunture along with Gabapenten and Tramadol but still have pain. Any info would be appreciated.
Thanks
hi, my husband had the gamma surgery done back in april. the relief only lasted 2 days. since then we have been back and forth to the pain center. he got a numbing block done once a week for a month. this only lasted a couple days too. then the octor did a preocedure not done very often called sphenopalatine ganglion block. this procedure covers more nerves by the cheek. this was done once a week for 3 weeks then went to 2 weeks for 2 weeks. now we wait for 3 weeks then call back. before all this he was laid up for 5 months. coming very close to going to the hospital because he couldnt eat.
Hi Melanie,
I have MS and TN, too, and am looking into Gamma Knife. After reading what Guppy wrote, I'm a little afraid. My neuro. told me that around 80 percent of patients have relief for 2-5 years. I'm looking forward to the day when they find a true solution.
Right now I'm on a very high dose of Neurontin and have gained a lot of weight, even though I eat really well and exercise. My blood sugars are slightly high, too....all due to the Neurontin. That's one of the main reasons I wanted to have the Gamma Knife surgery but now I'm concerned that it might just cause more pain and problems.
Have you decided what you're going to do? I'd love to keep in touch since there aren't too many people on this site with TN and MS. :)
~ Vicki
hi. i forgot to say that people with tn and ms have less of a chance for relief. the ms is trying to take the myelin (nerve covering) off and the gamma knife is trying to put it back on. my husband can have another gamma knife done but i dont think he will. the other numbing procedures work much better. but then then pain still comes and goes.
Ok That is what I needed to know what works even a little with ms before I do the gamma knife, I am doing Accupunture and that seems to help. I am allergic to Tegretol and another one of those I take gabapenten and Tramadol not sure what else to try Thank you for that information if you know which numbing procedures they are let me know
Thanks Again
Melanie
hi. the numbing procedure that my husband last had done is called sphenopalatine ganglion block.
Melanie Armeli said:
Ok That is what I needed to know what works even a little with ms before I do the gamma knife, I am doing Accupunture and that seems to help. I am allergic to Tegretol and another one of those I take gabapenten and Tramadol not sure what else to try Thank you for that information if you know which numbing procedures they are let me know
Thanks Again
Melanie
Went and saw neurosurgeon today am thinking of trying the gamma knife, the acupunture helps but the cost is what is killing me. I liked the Dr he knew about both ms and trigeminal neuralgia so guess we will give it a try.
I am now going to pain dr and see about the nerve blocks, my dr gave me amitriptyline along with the neurontin and tramadol and it seems to help a little bit more but I still want to see if I can do something that will get me off all these meds. I am approved to do the gamma knife but still not too sure.
I am going to the University of Minnesota hospital Wednesday to discuss the issue. I got a referral from the Dr that failed in his attempt with a Glycerol Injection. I currently take about 14 pills a day to keep it at bay.. I take Gaba & Trileptal. Hope I spelled it right. I want the nerve gone so I can take a vacation and stop carrying an Ice pack, spit cloth and pray that it doesn't hit while I'm on a bus going to & from work.
Here is my update on October 4 I had an injection done with the steroid and some numbing agent. I did not think it worked for that long a couple days at best.. I also started taking amtryptiline ( sure I spelled wrong) as of the 18 of this month have not had any pain. I am trying to wean myself of the neurontin I take the max you can so will try to taper down see if the pain comes back then I will know if it was injection or meds.
hi, i been a long time since i have been on here. the 5th procedure my husband had seems to work better than the gamma knike , numbing injection. it is RF (radiofrequency) they take a special needle and burn a certian part of the nerve off. his still get tweeks every now and then. he is still taking tegratol, lyrica. but a warning to all.... the TN laid him up for 5 months. basically he was laying in a recliner 24/7. during this process was when he got the gamma knife done. but as a result of that he got blood clots in both lungs. the doctors first ? was if he traveled on a plane for a long time. the answer was no. he was laid up for 5 months. this causing the clots that started inhis legs to travel to his lungs.
Melanie Armeli said:
Here is my update on October 4 I had an injection done with the steroid and some numbing agent. I did not think it worked for that long a couple days at best.. I also started taking amtryptiline ( sure I spelled wrong) as of the 18 of this month have not had any pain. I am trying to wean myself of the neurontin I take the max you can so will try to taper down see if the pain comes back then I will know if it was injection or meds.
i forgot to mention that the previous replyies my husband had several numbing injection done weekly ., then biweeekly. those only lasted for 1 week. the other procedure was called sphenopalation ganglion block. basically it is a numbing procedure , but it covers more nerves.
Talked to the Dr at the U of M this afternoon, Super nice, very experienced with this as well. I'm scheduling
a "percutaneous rhizotomy" procedure...
It will be interesting to see how these procedures work, I have noticed every once in a while the last two days maybe a twinge so hopefully stays like this but if not will try another block. My body seems to adapt to the meds I am on so I am sure that is what is happening not looking forward to another block (was pretty bad) but the daily pain is much worse.
Keep me posted
I'm new to this site, and am also considering the same procedure. Did it work?
Birdman33 said:
Talked to the Dr at the U of M this afternoon, Super nice, very experienced with this as well. I'm scheduling
a "percutaneous rhizotomy" procedure...
Hello, I had the procedure done. It's a Same Day surgery. I am still tapering off my medication per his request but it seems to be fine. The side of the face is numb to include the tongue but that was to be expected. This doctor was very well versed in the procedure. I know it will not last forever but I wanted to try something. I am scared to stop my meds but thats on me. I need to get over that mental issue. LOL I say give it a whirl if your thinking about it but just remember it's not a cure all and could last from 6 months to 6 years. I'm hoping for the latter obviously..
FYI, I've gone from a 14 pill a day routine and down to about 7.5 per day so thats an improvement.. 3 pills are non TN related.
Thats really good, I was afraid so I didnt do that had a pain block done instead. It has helped although I cannot wean off my meds, so may need another one then will perform percutaneous Rhizotomy is what we are thinking now. But I am really happy for you.
http://www.ncbi.nlm.nih.gov/pubmed/16574557
Red had posted this last fall, just wanted to make sure everyone has seen it in case it presents a new option for you. It’s a personal decision, and of course it requires knowing wether you have compression or demyelination .
MVD would not have helped me the Dr's say... Fingers are crossed for long term results though..LOL