My pain doc wanted to try Botox, but my insurance won't pay. Tegretol made me too tired and Tripleptal leaves me with breakthrough pain.
I have heard of too many people who have unsuccessful surgeries or recurring pain years or months later.
I don't know what to think. I see my pain doc again this week, but I'm so discouraged. He made it sound like the Botox would help.
My neurologist only asks me if accupuncturist still helps.
My reply is yes.
Find a good Chinese accupuncturist before Botox.
I can send photos of points that have stopped my gpn pain
Roland moore dds
You might consider the Gamma knife procedure, it is non-invasive. Surgery can have a bad outcome, but most people with good outcomes aren't going to be posting their success. They have gone on with their lives, while the ones who have continued pain will continue to post and seek help online or wherever. My surgery was a success, but the lady who had hers done just a couple of days before mine at the same hospital by the same surgeon did not have the same results, and in fact might be worse off. I did not try every medication, but I had tried enough and was in enough suffering to go for the surgery: I had 6 years of pain off and on, the last episode for 6 months straight with little relief, 20 pounds of weight loss at the end. I was a wreck, and I now know why some people give up. But I have too much to live for so I saw a neurosurgeon and I have not looked back. I was worried that the nerves were going to be beyond help if I kept surgery off with more medical treatment. Nerves will not recover if too badly damaged by pressure, and that's what my problem turned out to be, from tortuous blood vessels. How is medication going to help that in the long run except mask the damage? Also I didn't want to wait till some death panel decides whether I get an operation or not. I didn't want to wait till I was on Medicare or too old to have the procedure, which is big and takes a lot out of you. Nearly 10 months out and I only now feel pretty much normal. If the Botox isn't too expensive, it is probably worth a try but it might be temporary since Botox wears off after a few months. Me, if my pain comes back, I would have the same operation again. Good luck!
I've been referred to a surgeon, so I guess I'll hear what he has to say... Every new doctor just adds months to my pain.
I just wanted to give you some hope about surgery for GPN. Vicdoc is correct about people who've had successful surgeries going on with their lives and not posting much, if at all, on this forum. I suffered for about six years with GPN, with each episode lasting longer and being less responsive to medication. It got to the point that I couldn't function in my job anymore because of high doses of medications, and I couldn't enjoy my family, so I had to do something. I found a neurosurgeon at the University of Minnesota Fairview Medical Center (Dr. Stephen Haines), who performed MVD on me. I had immediate relief of my GPN symptoms, and while I had headaches for about 5 or 6 weeks after the surgery and some strange "under water" sensation in my ear on the opposite side of the surgery for a few weeks as well, I made a full recovery and have not had one twinge of GPN pain (or any other after effects) for 4 years now (I just passed my 4-year anniversary on July 30th). It was indeed the scariest thing I ever had to do, but it was also the most important decision I've ever made. I know the surgery is not always successful, but it probably is successful more often that it appears to be from this forum. I knew it might not be successful going in, but I also knew I couldn't continue going through life the way I was and not try the only thing that had the potential to cure me. I am so happy I had the courage to do it. If surgery ends up being an option for you, I wish you the courage to go through with it. I wish you the best.
Thank you, KayJay. Did they see the issue in any of the imaging? They can't seem to see anything on mine.
KayJay said:
I just wanted to give you some hope about surgery for GPN. Vicdoc is correct about people who've had successful surgeries going on with their lives and not posting much, if at all, on this forum. I suffered for about six years with GPN, with each episode lasting longer and being less responsive to medication. It got to the point that I couldn't function in my job anymore because of high doses of medications, and I couldn't enjoy my family, so I had to do something. I found a neurosurgeon at the University of Minnesota Fairview Medical Center (Dr. Stephen Haines), who performed MVD on me. I had immediate relief of my GPN symptoms, and while I had headaches for about 5 or 6 weeks after the surgery and some strange "under water" sensation in my ear on the opposite side of the surgery for a few weeks as well, I made a full recovery and have not had one twinge of GPN pain (or any other after effects) for 4 years now (I just passed my 4-year anniversary on July 30th). It was indeed the scariest thing I ever had to do, but it was also the most important decision I've ever made. I know the surgery is not always successful, but it probably is successful more often that it appears to be from this forum. I knew it might not be successful going in, but I also knew I couldn't continue going through life the way I was and not try the only thing that had the potential to cure me. I am so happy I had the courage to do it. If surgery ends up being an option for you, I wish you the courage to go through with it. I wish you the best.
I can speak for my imaging experience. I had CT and MRI back when the first attacks happened in late 2006 and early 2007. The radiologists couldn't see anything wrong. But my neurosurgeon took one look at the old MRI and said he could see the blood vessel causing the problem. You have to remember how rare GPN is and that most radiologists have never seen it. My neurosurgeon's office staff told me they even could not see the problems many times, and the diagnosis is sometimes made by symptoms. The type of MRI you have may also have something to do with seeing the vessels, and using contrast helps. My pain Doctor (he had never seen a GPN patient before either) was not hopeful that surgery would help, but my neurosurgeon was, and he was the correct one. KayJay is right, it's scary to have brain surgery, and my recovery and post op course was pretty rough. For me, though, it was worth the risk because my life was almost not worth living any more, and I could see no future with the misery I had. Better for me to risk the worst and fail than not try, and live with that horrible pain. I have my life back... I hope you get yours back too.
I have/had TNG and GPN. Had surgery at Johns Hopkins at the end of March after 5 years of pain. After multiple MRI’s that could not pin point a smoking gun my doc, Dr Lim, went in blind and found two areas of damage. We still have pain issues to deal with, but with the success of the first(and hoping last!) surgery, I can face tomorrow with a smile again.
The one thing I have learned is there is NO one stop fix. I had to reevaluate treatments often. Mixing western and eastern medicine. Treatment are improving everyday!
Never give up!!
They did not see anything definitive on my MRI. My neurosurgeon told me that if there was no artery irritating the nerve, he would then just cut the nerve in order to relieve my pain. Thank goodness that wasn't necessary, although I had prepared myself for that possibility just in case and knew that any issues from having the nerve cut still had to be better than living with the pain.
WotV said:
Thank you, KayJay. Did they see the issue in any of the imaging? They can't seem to see anything on mine.
Wotv,
Medication did not work at all for me. MVD was 99.99999 successful. I may have momentary pain if I am extremely stressed out or sick. I would have it again in a heart beat. Dr. Peter Jannetta is my NS even though he is retired doing research.He developed the MVD Surgery & is the Godfather of Modern Neurosurgery. I would highly recommend his partner Dr. Kenneth Casey. He is also incredible and a great guy.
Please don't be discouraged. My pain wasn't any worse when I threw all the medications in the trash.I wish it hadn't taken me almost 4 years to find Dr. Jannetta and get a correct diagnosis after consulting with 52 specialists & I was in the Medical Industry.
Why did your Dr. tell you your insurer wouldn't approve the Botox injections? Did you call to verify with your insurer why it was denied? I worked in Appeals for Blue Cross and Blue Shield and many times they request additional information that is never provided. You call your Insurer's Customer Service Reps and ask them for yourself why it was denied.
http://www.drkencasey.net/why.html
www.jannettaclinics.com is under development
I also agree with acupuncture and Oriental Medicine. Find a provider from this link to make sure they are certified. I had motion sickness because my mastoid bone was broken during the MVD. Dr. Jannetta had an acupuncturist broughht in the hospital for treatment. This was beyond nausea. After one treatment it was 70-75% better. My daughter has a Thoracic Kyphosis and her Pediatric Rheumatologist referred her to an Oriental Medicine Specialist affiliated with Duke Univ. Integrative Med. dept. She saw him for a year and is still pain free 8 years later.
.
Tracy:
I was declined because Botox for GN is considered Experimental. It is in their documentation on the website. I am trying to appeal, but it is in my doctor's hands and I don't know if they are pursuing it they way they are supposed to. I keep calling and emailing, but it is ultimately in their hands. I have aetna, and am so incredibly disappointed.
WotV
GPN has been the most painful and frustrating illness I have ever encountered. I had the MVD surgery for the second time a year ago and have been pain free and medication free.
If the pain is manageable on low dose of medication, then don't opt for the surgery but when you cant function and the pain is so bad, surgery is the only option. I have tried everything and both surgeries were successful with no side effects. I realize I cant keep having brain surgery but I actually had no choice because I no longer had a life.
Good luck with trying different therapies but if they don't work, I wish you the courage to try MVD
I pray daily for everyone that has to endure this kind of bizarre pain and frustration.
Hello,
I see an acupuncturist as well. But I'm very interested in the specific points that work for you.
I have the same response to Trileptal, doesn't help with the breakthrough pain. Acupuncture has really helped alot. I wish i could afford to go frequently!
Thanks very much
blueminc said:
My neurologist only asks me if accupuncturist still helps.
My reply is yes.
Find a good Chinese accupuncturist before Botox.
I can send photos of points that have stopped my gpn pain
Roland moore dds
I wonder how expensive accupuncture is...
I pay $90 for about an hour+. I'm not sure how this compares to other acupuncurists. I am very happy with the person I go to and it really works for me. I had to "shop" around a little to find someone I was comfortable with and who took the time to research GNS. Good luck.
KayJay said:
I just wanted to give you some hope about surgery for GPN. Vicdoc is correct about people who've had successful surgeries going on with their lives and not posting much, if at all, on this forum. I suffered for about six years with GPN, with each episode lasting longer and being less responsive to medication. It got to the point that I couldn't function in my job anymore because of high doses of medications, and I couldn't enjoy my family, so I had to do something. I found a neurosurgeon at the University of Minnesota Fairview Medical Center (Dr. Stephen Haines), who performed MVD on me. I had immediate relief of my GPN symptoms, and while I had headaches for about 5 or 6 weeks after the surgery and some strange "under water" sensation in my ear on the opposite side of the surgery for a few weeks as well, I made a full recovery and have not had one twinge of GPN pain (or any other after effects) for 4 years now (I just passed my 4-year anniversary on July 30th). It was indeed the scariest thing I ever had to do, but it was also the most important decision I've ever made. I know the surgery is not always successful, but it probably is successful more often that it appears to be from this forum. I knew it might not be successful going in, but I also knew I couldn't continue going through life the way I was and not try the only thing that had the potential to cure me. I am so happy I had the courage to do it. If surgery ends up being an option for you, I wish you the courage to go through with it. I wish you the best.
What specific type of symptoms did you have prior to surgery?
KayJay,
What kind of specific symptoms did you have prior to surgery?
My Surgery was successful also. I t was scary but I no longer had a life either.
My particular symptoms even while being on 1600 mg of Tegretol were sharp jabbing razer blade stabbing sensations on the left side of my throat area. It started to effect my left ear also. I could not speak at all or it was horrific pain.
1600 mg of Tegretol was not the answer.
I'm now pain free and medication free.
Good Luck to all who suffer from this bizarre, hard to diagnosis pain!!!
I am wondering about paying for Botox out of pocket. This is the treatment that my doctor wants to try, but my insurance won't authorize. I have no idea of cost...
I Haven't heard of that particular treatment.
Have you heard of TNA? (Trigeminal Neuralgia Association) You should definitely sign up for the emails or check out their website. It is a support network which only pertains to Glosso and trigeminal. It saved my life. I receive emails and news letters regarding the newest treatments etc. You can also obtain a list of people who endure the same pain and receive information regarding treatments/medications etc. Their is a convention in San Diego I believe in October.
I highly recommend this to anyone suffering from Neuralgia.