MarleneW
10-28-2006, 11:41 AM
Missyjo,
My TN started in 2000 with a tooth extraction. My ON started after my 1st MVD in 2003. After the 2nd MVD it got even worse, along with all the other symptoms, when I would turn my head even slightly to the right it would feel like there was an ice pick implanted in my head going from just behind the bottom of my ear up to the crown of my head and it felt like it poked out through the top of my head, so I got to the point that I just quit turning my head, I turned my whole body instead.
I had 2 cervical nerve root blocks where they go right into the root of the nerve,I had one on c1 and the other on c3, they were mostly diagnostic, which ended up showing nothing. I had 4 more regular nerve blocks, none lasted more than an hour or two. In June I had an occipital nerve decompression. The incision for that was from the bottom of my hairline up to about the middle of my head. That did nothing but make things worse as the doctor found that the nerve was embedded in a significant amount of scar tissue (not related to the MVD's), he said maybe an old head trauma, childhood illness,high fever, who knows? He was able to decompress some branches but others he had to sever, this caused right-sided numbness in the back of my head, that is OK except it wasn't a good numbness,(it was very sore and sometimes it felt like there were fireworks going off inside my head, This was from the branches that were still compressed.)
On Sept. 21 I had a surgery called a c2 ganglionectomy(which I described to Gidge a few days ago if you want to read it.) I don't like to keep repeating myself. This surgery is used as a last resort for ON. As all of this had been going on I have tried Tegretol, Zonegran, Mwxilitine, Topomax,Wellbutrin, Evavil, Lyrica,Cymbalta, Flexeril, Morphine, Hydrocodone, Oxycodone, Lortab, and Lidocaine patches. I have also tried a compound medicine (which is like an ointment) that they can mix one or more medicines in it to rub on. Mine had 6% Neurontin,3% Amitriptyline, and 5% Lidocaine. This sometimes cuts back on the side effects of the medicines, it worked OK for a while. Some of these medications caused side effects that I couldn't tolerate as I have many allergies and some just didn't work. I have had the best luck with Neurontin, but sometimes it just doesn't work. I have been taking this for four years. I can't get the dosage up too high because I homeschool my kids and I have to be able to think (at least sometimes).
After my last operation I was put on the baclofen and valium for muscle spasms in my neck. It actually helped the ON and TN better than anything I had ever taken. It worked for about 2 weeks then the pain in my head started to return especially running from behind my ear up the side of my head, although it still isn't as bad as before, I'm not sure it is the medicines or the surgery that has helped. It also seems at times that my gums, teeth and tongue feel a little better. I have been getting a little more pain above my eye and forehead than before,though. I am taking 60 mg. of baclofen but I am cutting back on the valium. I did seem to feel better when taking the valium, but it is not a drug to be used long term.
About a year ago I had a MMP1 which is a psychological evaluation that is given before motor cortex stimulation. The MMP1 turned out ok (so I guess I'm not crazy). I am lucky enough to have a wonderful surgeon who is willing to try just about anything to help me. I'm hoping we don't have to go as far as the motor cortex stimulation though.
It has only been 5 weeks since my surgery though and I have been told that with the extent of this surgery it may take up to a year to see results. If it helps I am willing to wait any length of time.
So sorry to run on and on, but if I can help you in any way with info. or whatever, just ask. Sorry you aren't feeling well.
Marlene
My TN started in 2000 with a tooth extraction. My ON started after my 1st MVD in 2003. After the 2nd MVD it got even worse, along with all the other symptoms, when I would turn my head even slightly to the right it would feel like there was an ice pick implanted in my head going from just behind the bottom of my ear up to the crown of my head and it felt like it poked out through the top of my head, so I got to the point that I just quit turning my head, I turned my whole body instead.
I had 2 cervical nerve root blocks where they go right into the root of the nerve,I had one on c1 and the other on c3, they were mostly diagnostic, which ended up showing nothing. I had 4 more regular nerve blocks, none lasted more than an hour or two. In June I had an occipital nerve decompression. The incision for that was from the bottom of my hairline up to about the middle of my head. That did nothing but make things worse as the doctor found that the nerve was embedded in a significant amount of scar tissue (not related to the MVD's), he said maybe an old head trauma, childhood illness,high fever, who knows? He was able to decompress some branches but others he had to sever, this caused right-sided numbness in the back of my head, that is OK except it wasn't a good numbness,(it was very sore and sometimes it felt like there were fireworks going off inside my head, This was from the branches that were still compressed.)
On Sept. 21 I had a surgery called a c2 ganglionectomy(which I described to Gidge a few days ago if you want to read it.) I don't like to keep repeating myself. This surgery is used as a last resort for ON. As all of this had been going on I have tried Tegretol, Zonegran, Mwxilitine, Topomax,Wellbutrin, Evavil, Lyrica,Cymbalta, Flexeril, Morphine, Hydrocodone, Oxycodone, Lortab, and Lidocaine patches. I have also tried a compound medicine (which is like an ointment) that they can mix one or more medicines in it to rub on. Mine had 6% Neurontin,3% Amitriptyline, and 5% Lidocaine. This sometimes cuts back on the side effects of the medicines, it worked OK for a while. Some of these medications caused side effects that I couldn't tolerate as I have many allergies and some just didn't work. I have had the best luck with Neurontin, but sometimes it just doesn't work. I have been taking this for four years. I can't get the dosage up too high because I homeschool my kids and I have to be able to think (at least sometimes).
After my last operation I was put on the baclofen and valium for muscle spasms in my neck. It actually helped the ON and TN better than anything I had ever taken. It worked for about 2 weeks then the pain in my head started to return especially running from behind my ear up the side of my head, although it still isn't as bad as before, I'm not sure it is the medicines or the surgery that has helped. It also seems at times that my gums, teeth and tongue feel a little better. I have been getting a little more pain above my eye and forehead than before,though. I am taking 60 mg. of baclofen but I am cutting back on the valium. I did seem to feel better when taking the valium, but it is not a drug to be used long term.
About a year ago I had a MMP1 which is a psychological evaluation that is given before motor cortex stimulation. The MMP1 turned out ok (so I guess I'm not crazy). I am lucky enough to have a wonderful surgeon who is willing to try just about anything to help me. I'm hoping we don't have to go as far as the motor cortex stimulation though.
It has only been 5 weeks since my surgery though and I have been told that with the extent of this surgery it may take up to a year to see results. If it helps I am willing to wait any length of time.
So sorry to run on and on, but if I can help you in any way with info. or whatever, just ask. Sorry you aren't feeling well.
Marlene