After spending two days at an emergency, yesterday because I passed out, I haven't been eating for the last three days, maybe a smoothie if I can get down. Well appentently you can't take the amount of drugs I do and not eat. Today because the attacks would not stop, lasted steady all day. So today they pumped me full of fluids and drugs, even two needles in back of my neck, nerve blockers they said and sent me home. None of it worked and here I am in pain :( So my question is when I see my surgeon this week what is anyones advice for options,,,gamma knife? Did anything else work for anyone because a MVD sure wasn't it, After 5 mnths this should not be what I'm posting. Unbelievably disappointed. Help!!
Sometimes you have to have a 2nd MVD because they may have missed one of your compressions. Go back to the doctor and discuss all your options with them. I wish you luck! Keep me posted.
Hi Linda. I had a gamma knife in 2009. It didn't work for me. But I know it works for some people. I had an mvd after that and got about a year and a half out of that. I just had my second radiofrequency rhizolysis procedure done. I got a couple of years out of the first one and am hoping to get 3-5 years out of this one. It is done on an outpatient basis with a 24-48 hour recovery period. I was at my son's basketball game the morning after I had mine done. You might want to check into this procedure. My doctor gave me the choice of having a second mvd done or having the RF procedure and I chose the RF again. Hope this helps.
Hi Linda. I had a gamma knife in 2009. It didn't work for me. But I know it works for some people. I had an mvd after that and got about a year and a half out of that. I just had my second radiofrequency rhizolysis procedure done. I got a couple of years out of the first one and am hoping to get 3-5 years out of this one. It is done on an outpatient basis with a 24-48 hour recovery period. I was at my son's basketball game the morning after I had mine done. You might want to check into this procedure. My doctor gave me the choice of having a second mvd done or having the RF procedure and I chose the RF again. Hope this helps.
How soon does the pain go away after this procedure?
hav2hope said:
Hi Linda. I had a gamma knife in 2009. It didn't work for me. But I know it works for some people. I had an mvd after that and got about a year and a half out of that. I just had my second radiofrequency rhizolysis procedure done. I got a couple of years out of the first one and am hoping to get 3-5 years out of this one. It is done on an outpatient basis with a 24-48 hour recovery period. I was at my son's basketball game the morning after I had mine done. You might want to check into this procedure. My doctor gave me the choice of having a second mvd done or having the RF procedure and I chose the RF again. Hope this helps.
The first time I had it done the pain was gone immediately. This second time I had a lot of soreness the first day but it gradually got better and it wasn't my usual electric shock stabs. The trade off with this procedure is that it causes numbness though. At first you're really numb but it gradually wears off. My procedure was six weeks ago. I still have numbness in my chin on that side and in and around my ear. Also my lip on that side. I'm used to it though and it doesn't bother me. When the numbness totally wears off is when the pain usually comes back my doctor said and that was true the first time I had it done. With this procedure the Dr. burns lesions (about 3) on the nerve and that is what blocks the pain.
huh, this sounds like a road to consider for me. Dumb question but gotta ask..what about eating, drinking and things..is it hard? Although I would trade that off with pain today.
hav2hope said:
The first time I had it done the pain was gone immediately. This second time I had a lot of soreness the first day but it gradually got better and it wasn't my usual electric shock stabs. The trade off with this procedure is that it causes numbness though. At first you're really numb but it gradually wears off. My procedure was six weeks ago. I still have numbness in my chin on that side and in and around my ear. Also my lip on that side. I'm used to it though and it doesn't bother me. When the numbness totally wears off is when the pain usually comes back my doctor said and that was true the first time I had it done. With this procedure the Dr. burns lesions (about 3) on the nerve and that is what blocks the pain.
No it's not hard to eat at all. At first before some of the numbness wore off I might not feel if I had a small piece of food on my lip on that side so I just made sure I used my napkin a lot. At first different liquids tasted like metal to me too but that has all resolved now. It still feels like my lip is a little swollen on that side too. At first I thought I had a fat lip but it looked normal in the mirror.
thank you so much for all your info, this is definitely an option I am going to discuss.
Take care of you,
Linda :)
hav2hope said:
No it's not hard to eat at all. At first before some of the numbness wore off I might not feel if I had a small piece of food on my lip on that side so I just made sure I used my napkin a lot. At first different liquids tasted like metal to me too but that has all resolved now. It still feels like my lip is a little swollen on that side too. At first I thought I had a fat lip but it looked normal in the mirror.
You are very welcome. If you think of any more questions don't hesitate to ask. I always ask a lot of questions before I have anything done. The more informed you are the better. I hope this helped you out. Laureen
Linda said:
thank you so much for all your info, this is definitely an option I am going to discuss.
Take care of you,
Linda :)
hav2hope said:
No it's not hard to eat at all. At first before some of the numbness wore off I might not feel if I had a small piece of food on my lip on that side so I just made sure I used my napkin a lot. At first different liquids tasted like metal to me too but that has all resolved now. It still feels like my lip is a little swollen on that side too. At first I thought I had a fat lip but it looked normal in the mirror.
I was not doing well on medications and my neurologist said we couldnt consider surgery until we’d given medication a good try. I was in horrible pain 24/7 so I searched for other options. In my desperation I actually searched jaw amputation. I would have done anything to be rid of that pain. I had a list of things others had done and had success. I even bought a pain shield (which I do think would have helped, but stared physical therapy before I had a chance to give it a try). Found a lady on this site who did mckenzie therapy. That’s what I did and it worked for me. It is very non invasive and inexpensive. I was so excited to share when I found that it worked but i think because it is so simple people think it can’t work. It is different than traditional physical therapy. I’m glad I gave it a try before doing something that I couldn’t undo. If it hadn’t worked I would have been out about $100(that was for two sessions). It only took two sessions in the first week to know that it was working. I have not
had TN pain or been on any meeds since November. I am so sorry to hear of all you have been through and that you are still in pain. I sincerely hope you find your answer soon.
Shawna