One update on my situation after my failed MVD and Gamma Knife.
In August of this year I had Botox injected along V2 and V3 of the nerve by neurologist. The injections are superficial and practically painless. We tried Botox because it was the least invasive procedure before going with Glycerol injection, balloon compression or rizotomy. I had a failed MVD in 2007 and Gamma Knife that made things a lot worse in Ferbuary (Red, I should have read your reviews before going for it).
I haven't found much on Botox for TN, but a month after the injections my pain started to subside. If you read my other blogs and discussion posts, you will see that I was in very bad shape and I've been on long term medical leave since April. I attempted to go back to work in April and in June. One lasted 4 days and the other 2 and a half weeks.
I don't have spasms with my pain. The pain are electric shocks and stabbing pain with sudden onset and various triggers along V2 and V3. The health insurance covered a big portion of the Botox and the procedure's co-pay was the same as an office visit. It was effective. Finally!!! The pain started to subside a couple of weeks after the procedure, and now I have been with no pain for 10 days straight. I wish I had done this earlier, but my doctor wasn't sure because I have no visible spasms associated with the pain.
If Botox doesn't work, there are no lesion on the nerve and the effect only last 3 months, there is almost no risk involved.
Now, I have lost sensitivity (right side) as the pain was subsiding and this result may be the Botox alone, a combination of the Botox and the Gamma Knife, maybe it's the cyclical nature of the condition and I went on remission, and/or it's the result of all the prayers and spiritual healing sessions I have gone through, but the point is that I'm doing better and I'm going back to work. Halleluiah!!!
How many Botox injections did you have along V2 and V3? How was it coded or diagnosed to get insurance to cover it? When you say “superficial,” do you mean the Botox injections were on the outside of your face, as opposed to inside your mouth? After the Gamma Knife made you worse, how did you manage your pain (e.g., with meds, etc.)?
Terrell on behalf of Tinkerbell
There were several injections outside of my face, almost painless. I don't know how it was coded. My neurologist is licensed to administer Botox because he treats migraines. After the Gamma Knife the pain got out of control. I was unable to control the pain with medications. I got up to to 4,800 mg of gabapentin, plus baclofen, dilantin, and fentanyl patches. I was dizzy all the time and unable to do basic things like brushing my teeth and eat properly. The Botox was to try if it worked, before going to more invasive and nerve destructive procedures. The injections were applied in both sides of the face to prevent asymmetry. I'm still with no pain and reducing my medication before going back to work.
Thanks for answering Terrell's note on my behalf. I have some really bad days and he is such a help to me trying to find something to help with this 24/7 pain...you all know how that is. I'm grateful for his help and for your response. I live in Georgia and having a hard time trying to find someone to actually do the injections but hopefully tomorrow in Atlanta we will get some help. Everyone wants a "consultation" first which leaves us running all over the place only to be discouraged. So, we pray this neuro doc can help. Many neuro docs are doing botox for certain conditions but are a little hesitant to do it for ATN, around here. By any chance, do you live in the South? I'm willing to drive to a doctor who knows what they are doing with Botox (actually, I have to get a driver, my doc threatened to take my keys away! funny story!). If there is anyone out there who has a doc in the South who uses Botox to treat ATN pain, please let me know. Has anyone taken Opana? My pain management doc prescribed that with Fentanyl patch today. I hope that helps with the pain while we wait to find a doc willing to give Botox for other than wrinkles in Georgia. Thanks!
Thanks, Estelle, for your comments on Botox. Thus far have you had much that has helped you any. I know what works for one person doesn't always work for the next person. Hence, so many choices on the market. But one never knows...Thanks, again.
Hi, I had gamma knife in February. The latest result could be also a delayed reaction to it or maybe a combination of the two. I think that’s because of the numbness I have on the right side of my face.
I am so happy I came across your post. I spoke with my neurologist about using Botox as a possible pain reliever. He said that he didn't feel that would help. I had done my research on Botox and TN and found that the FDA approved Botox as a treatment for TN. Even the FDA approves it! Please tell me how this was approached with your Dr. Was this your idea or was it presented to you by your Dr? I can't seem to walk away from this treatment. It does seem to be the least evasive form of treatment. thank you for sharing this. Just got my mind working again. Jennifer
I a botox injection two weeks ago for my migraines but have been recently been told that I have ATN. My neurologist said it might help for my atn. Fingers crossed.
Hi Carolina, Your post is raising my spirits, I am 39 yrs old, with TN type 1 pretty straightforward. Been on Cabamazapene for a couple of years. I'm "done" with the side effects. I am researching Botox Injections. Currently, how have things been going for you? (wonderfull, I hope !) has Botox been able to bring the pain under control? Thank you !
I am going for my second session of botox. I could really notice the difference. My next treatment is in a couple of weeks. I could tell it was time to go again as I felt the intense pain creeping back.
I've had thee sessions already in August, November and February. I haven't had pain since October. Things are looking up again. Went back to work and as I'm reducing my medicine (very, very slowly) I can definitely see how much more I can do.My brain is coming back, I can go outside, kiss my husband, enjoy a stake. I even got a facial for the first time ever!!! and I loved it. That was such a terrifying thought before.
God! this is a much better year. At this time last year I wasn't even able to talk, It hurt to move, I was sleepy and lethargic with the medicine, couldn't think, couldn't eat, just liquids and with a straw just held by my teeth and trying not to touch my lips. I had nights awake with pain attacks every three minutes... I was exhausted and afraid about the future.... what a difference....
Right now the cost of Botox treatment plus the Lyrica I'm taking is less than all the medicines I was on before. I'm taking 200 mg of Lyrica per day and 10mg of baclofen per day.
Carolina! Congrats on the improvements!!! I am so happy for you! I am looking for a Neuro. In my area to discuss Botox, I’m already excited at the possibilities!! Three cheers to you!!! (without the straw!) keep us posted! Happy holidays!
I Was ready to do Botox injections 2 months ago. But dr And insurance said no way! As it was t FDA approved. Can I ask how,who, where? I will scramble, and get an airplane ticket!!