I am still fairly new to this site and realize that this topic has probably already been discussed but I don't know how to find it :-)
Here is my question. My neurologist said that if the MVD doesn't take care of the hemifacial spasms along with the TN (hopefully it will take care of EVERYTHING!), they will try Botox. Has anyone ever had it done for this purpose? Did it work on you? Do they botox both sides to even things out :-) or do they freeze the one side only?
I am aware that everyone's experience is different and I may not even need to know this, but I thought I'd ask ~~ the OCD in me NEEDS to know all the possibilities!
Thank you in advance and again, I'm sorry if this topic is somewhere on the forum that I cannot find!
I’ve had Botox for the past yr and a half or so to relieve some of the pain and discomfort I had in other areas that caused my TN pain to be so much worse. My neck and shoulders and upper back and the back of the right side of my head (the side with my TN) were in constant horrible pain, about an 8 on the scale. I get Botox injections every 2 months of either 200 or 300 units. I know have no extra pain just the excruciating pain of my face which is so horrible that having to deal with any other pain is just too hard to do but Botox has been a lifesaver for me! Consider it, it could do wonders for you…trust me it’s a great thing! Let me know how it goes and what u decide…
Hello~ I have had botox done for Atypical face pain since 8-08. I get about 15- 20 injections on both sides . IT HELPS ME! I take a very small amount of baclofen 10- 20 mg a day and 25 - 50 mg of Lamictal a day. That is 90% less than before the botox started. I get the injections every 90 days. My neuro calls my pain AFP b/c it’s on both sides, all 6 branches, behind the ear and down the neck too. I have no touch triggers. It spasms when it is acting up. Enough to be visably seen. It is not specifically HFS. She believes the muscles on my face are pushing on the t. nerve.
Please feel free to write to me if you have any comments or questions.
& make sure to let everyone know what you decide and how it works!
Good luck and stay calm. If you do decide to do it, take something to calm you before hand and have a driver.
For the record. Next time we are going to use less Botox because my muscles are starting to give up! Yippy.
My face looks no different. The muscles are just getting smaller.
Thank you for your help, Michaela and Stephanie. The MVD surgery did seem to take care of the TN pain (Praise the Lord), but the spasms are still a very real presence on my face! Hey, what 50-year-old woman turns down botox?? Seriously, my spasms are very noticeable and when I realize how noticeable they are, they get worse. {{Sigh}} I can’t control them!
Both my neurologist and neurosurgeon are recommending botox. I am sure, though, that I must do some more healing from the MVD first. I’m not going to hurry anything…
Did you decide on getting the Botox or not? Let me know your decision. If you do decide to get the injections, I put numbing cream on my face, in the areas I can, to help with the pain from the injections.
Hope all is going well!!!
Melodye Olsavsky said:
Thank you for your help, Michaela and Stephanie. The MVD surgery did seem to take care of the TN pain (Praise the Lord), but the spasms are still a very real presence on my face! Hey, what 50-year-old woman turns down botox?? Seriously, my spasms are very noticeable and when I realize how noticeable they are, they get worse. {{Sigh}} I can’t control them!
Both my neurologist and neurosurgeon are recommending botox. I am sure, though, that I must do some more healing from the MVD first. I’m not going to hurry anything…
My Pain Management Consultant offered Botox for spasm and I read a lot about it, all of which made me hopeful. I waited and waited and then decided to call her Secretary and ask about it, as I was still waiting. I had a call back from her Secretary 2 weeks later who said ‘If the spasm is on your head they cannot do Botox injections, but if it’s on your face, they would’. My spasm is temporal, so yes it is on my head (temples!!!) and she has been treating me for 5 years and injects my temples every 3 months with local aneasthetic which DOES stop the spasm even though it is back 3 months later. However, the research I’ve read seems really, really positive for facial spasm. In fact, if I were you (as I know the spasm itself is so hard to live with) I would consider having it done. I personally would jump at the chance of having them if they were offered to me again. Please let me know how you get on!!