Hi,
I am considering trying botox to settle down the nerve. Has anyone tried this? I don't want some part of my face not to move, etc. I am being told that it will be a localized effect and not migrate. That was certainly the case with the long-acting anesthetic.
Thanks,
JanetM
Hi Janet - I have had several Botox injections. The most I had at one point was 17 to the side of my face. The injections worked up to a point but not for a very long time. It also happened to mess up some of the muscles in the face. I even have one muscle that dissapeared! It is still not back after 2 years. But please keep in mind that my condition is atypical neurapathy and am dealing with a few nerves. It absolutely works for a little while and takes up to a month to give full relief. I felt like a bobble head during that waiting period! ;) Good luck.
I have neuropathic pain as well. Where was the botox injected? Was the effect localized? Could you still move your face? What does it mean that one of your muscles disappeared?
Thanks,
JanetM
Hi Janet, I had several along my upper jaw, lower jaw, temple, eyes, neck, side of my head, the mandibular, upper shoulder and as far down as middle of my back. I had between 12-17 every time and as often as 4 months in between. This is why I referred to my first month as the"bobble-head face". Obviously it all depends on where and how much Botox is injected. My pain did get better short term but I later learned that it would have been better for me not not have had that much Botox injected. Knowing this, I still would not have passed it up. You have to try everything and Botox has helped a lot of people. I would definitely try it.
Most likely You will loose some movement in your head but it will come back in a very short while. The muscle I lost was in my shoulder and I am still going to PT to try and correct it. We will see. I wish you the best.
Thanks
Camilla
I tried it at Kaiser in San Diego with Dr. Hilliard. I had two series of about 8 injections (3 months apart) to the left side of my face in a U shape around the side of my mouth. It did not address the nerve pain but my face was paralyzed pretty good. For me it didn't do anything positive to stop the nerve pain.
I also had 2 ganglion stellate blocks through my neck. This somehow affected and changed the tone of my voice and made speech very difficult for some time. I still have the ragged voice; I understand that the area they go into is very close to the voicebox. These procedures were very frightening, painful and uncomfortable. I was fully awake and unable to move while they pressed a needle deep into my neck to inject something - probaby botox - into the nerve area. By the second treatment my body knew what was coming and I was shaking so hard I had to be semi-sedated.
I hope the botox works for you if you choose it. I've heard it relieves pain for some people. Please let us know?
Thanks, Camilla. What do you mean that you had the "bobble-head face"? I just discussed once more with my doctor the possibility of Botox and he said that he would try to do it so there was a general effect on the trigeminal nerve. Possibly side of my head and back of my neck. I am just not sure, especially since I am worried that I will have a frozen face. I don't think I could bear that on top of everything else.
Chris & Camilla said:
Hi Janet, I had several along my upper jaw, lower jaw, temple, eyes, neck, side of my head, the mandibular, upper shoulder and as far down as middle of my back. I had between 12-17 every time and as often as 4 months in between. This is why I referred to my first month as the"bobble-head face". Obviously it all depends on where and how much Botox is injected. My pain did get better short term but I later learned that it would have been better for me not not have had that much Botox injected. Knowing this, I still would not have passed it up. You have to try everything and Botox has helped a lot of people. I would definitely try it.
Most likely You will loose some movement in your head but it will come back in a very short while. The muscle I lost was in my shoulder and I am still going to PT to try and correct it. We will see. I wish you the best.
Thanks
Camilla
Wow, Colleen. I am sorry to hear that your face was paralyzed pretty good. Was it scary? How long did it last?
I am sorry about the ganglion stellate blocks and how scary they sound. This was recommended to me when I was in Los Angeles but I was too scared to do that.
What else have you tried?
Thanks,
Janet
Colleen said:
I tried it at Kaiser in San Diego with Dr. Hilliard. I had two series of about 8 injections (3 months apart) to the left side of my face in a U shape around the side of my mouth. It did not address the nerve pain but my face was paralyzed pretty good. For me it didn't do anything positive to stop the nerve pain.
I also had 2 ganglion stellate blocks through my neck. This somehow affected and changed the tone of my voice and made speech very difficult for some time. I still have the ragged voice; I understand that the area they go into is very close to the voicebox. These procedures were very frightening, painful and uncomfortable. I was fully awake and unable to move while they pressed a needle deep into my neck to inject something - probaby botox - into the nerve area. By the second treatment my body knew what was coming and I was shaking so hard I had to be semi-sedated.
I hope the botox works for you if you choose it. I've heard it relieves pain for some people. Please let us know?
Hi Janet,
The botox injections were not traumatizing, but the gangion blocks were. Neither of these treatments helped me, and the botox left my face numb in the tissue/cheek area but the pain in the nerve area was unchanged. I didn't enjoy having the numb face at all, and after two tries, I didn't go for a third.
The block was worse for me because it goes into your neck with a needle. The first time I was like Bambi, all happy and innocent and looking forward to being painfree and back to my normal self! I wasn't sedated, I was told what was going to happen and that it would pinch. "Pinch". It didn't work, so my doc suggested another go. The second time, I thought I was mentally prepared, but as I was being wheeled in to the procedure room, my body started shaking and convulsing, I was crying and couldn't control it, and I was primally scared. Looking back, I think that in addition to the procedure it took me back to the day the damage occurred during a root canal & apicoectomy that really brought on the raw fear, like some kind of post traumatic stress reaction. The ganglion block were bad and I would never again personally endure them. Had they worked for me...I might be writing a different response of course.
Now what I have are neurontin, effexor, massive amounts of NSAIDS, ibuprofen at work, heat packs, and a few emergency pain pills I'm saving. My doctor won't prescribe pain med (he also coincidentally doesn't suffer from TN). Where I live there aren't other neurologists, although where I came from they were on every block and weren't able to help me control it either.
I've tried almost all the other TN meds and I was either allergic to them (tegretol family) or they didn't stop the pain enough to make the side effects worth it. I'm getting dilantin this month to test drive and see if I can tolerate that.
I really hope you find relief with whatever treatment you choose. I hope all of us do! Maybe tomorrow will be the day a permanent solution will be found for TN - who knows right?
Lots of good wishes - Colleen
Colleen,
Thanks for sharing. I am not sure that I would like having my face numb any more than I like having the pain. I have always felt that numbness is another form of pain. Just not stabbing, etc. I am tired of being on the meds and so I thought this may be an answer.
I too pray that one day very soon none of us will live with this pain.
Janet M
Colleen said:
Hi Janet,
The botox injections were not traumatizing, but the gangion blocks were. Neither of these treatments helped me, and the botox left my face numb in the tissue/cheek area but the pain in the nerve area was unchanged. I didn't enjoy having the numb face at all, and after two tries, I didn't go for a third.
The block was worse for me because it goes into your neck with a needle. The first time I was like Bambi, all happy and innocent and looking forward to being painfree and back to my normal self! I wasn't sedated, I was told what was going to happen and that it would pinch. "Pinch". It didn't work, so my doc suggested another go. The second time, I thought I was mentally prepared, but as I was being wheeled in to the procedure room, my body started shaking and convulsing, I was crying and couldn't control it, and I was primally scared. Looking back, I think that in addition to the procedure it took me back to the day the damage occurred during a root canal & apicoectomy that really brought on the raw fear, like some kind of post traumatic stress reaction. The ganglion block were bad and I would never again personally endure them. Had they worked for me...I might be writing a different response of course.
Now what I have are neurontin, effexor, massive amounts of NSAIDS, ibuprofen at work, heat packs, and a few emergency pain pills I'm saving. My doctor won't prescribe pain med (he also coincidentally doesn't suffer from TN). Where I live there aren't other neurologists, although where I came from they were on every block and weren't able to help me control it either.
I've tried almost all the other TN meds and I was either allergic to them (tegretol family) or they didn't stop the pain enough to make the side effects worth it. I'm getting dilantin this month to test drive and see if I can tolerate that.
I really hope you find relief with whatever treatment you choose. I hope all of us do! Maybe tomorrow will be the day a permanent solution will be found for TN - who knows right?
Lots of good wishes - Colleen