Hi,
I have been suffering with deep ear pain and left sided head pain f with severe tinnitus for about 8 years. I have tried all kinds of meds and crazy treatments. However, recently I have tried Gamma Knife surgery. I am about 1 week post op and I feel no different, only a little tired and nauseous. I was wondering if anyone has had a positive outcome from Gamma Knife?
Consulted with a neurosurgeon years ago regarding my GNP. Wouldn’t work for me as they couldn’t get a clear shot at the nerve. Have had no surgery and still suffering on and off. Retired and was pain free for a year and a half.
No, I haven’t tried Gamma Knife, but it is one of the things that I am thinking of trying.
I had Gamma Knife for TN 13 months ago. Unfortunately I now have had GPN symptoms since. My TN isn't as bad as it was though. My neurosurgeon did say it could take up to a year to get improvements and has recently said it could still improve. Best of luck to you and don't be too impatient to feel better.
Hi Mary,
What are your GPN symptoms?
What kind of symptoms have you been suffering with?
hmschmom said:
No, I haven't tried Gamma Knife, but it is one of the things that I am thinking of trying.
My symptoms change sometimes daily sometimes weekly! The GPN symptoms I get is bad stabbing, burning pain under left hand side (TN side) tongue, going down the throat. Pain going up to the ear not so bad though. I have had Tinnitus since GK too. I'm not saying that it doesn't help people as I'm sure it does. I seem to be unluckly (two failed MVDs for TN).
I was first diagnosed in 2009 with GPN, VN, and TN on the right side. I had MVD surgery in 2010 and experienced relief until a year ago. I seem to run the gambit when it comes to symptoms. I do not have MS. MRIs both prior to surgery and last year show no sign of lesions.
GPN-wise I have a constant feeling of strangulation interspersed with occasionaly ice pick pain at the back and base of my tongue, up into the soft palate, and in my ear; as well as tongue gymnastics. My voice is affected which makes it hard to both speak and be understood and I have difficulty swallowing. I have not had the same trouble eating as prior to the surgery; its not easy, but I don’t usually have the severe lancing pain like before. When the GPN is really bad I have balance issues. I think it is related to the ear pain.
TN-wise I have constant burning in the lower jaw close to the joint which occasionaly radiates up into the upper jaw/cheekbone, along temple, into the eye, and forehead. When bad, my vision is affected.
VN-wise I have periods when my heart races or skips around, difficulty breathing, partial pass-outs, complete pass-outs, and extreme exhaustion (when it hits I can not stay awake).
I think that is everything.
jackie said:
What kind of symptoms have you been suffering with?
It is interesting to read about someone else with tachycardia . My understanding was that Classic GPN led to bradycardia because of Vagal nerve involvement …does anyone else have tachycardia?
Does this mean that you have tachycardia?
Former Medica said:
It is interesting to read about someone else with tachycardia . My understanding was that Classic GPN led to bradycardia because of Vagal nerve involvement …does anyone else have tachycardia?
has anyone had a good outcome after gn? I need hope.
Hi Jackie
I am 2 months post MVD, So far no pain at all, My surgeon says the pain will never come back.
I only hope he is right. That is the positive part. But there were side effects that I was warned about.
Some would say they are the negative part.
I lost hearing in my left ear.
I can't swallow very well. I have a feeding tube at present, but it it temporary until swallowing returns.
For me both of these headaches are worth it to get rid of the pain.
Some would rather live with the pain. The pain I had there was no living with, surgery was the only option.
I posted 2 photos of what surgeon found if you want to see go to media then photo.
hope this helps, good luck and hang in there.
Hi Chris, I am post op about 4 days from MVD. Apparently when my surgeon went in he found a portion of my tn nerve and geniculate nerve being compressed. My head still hurts like a vice grip is around this and I am dizzy and feel very weak. My ear feels like it's full of fluid and I can't hear out of it. My Dr., Dr. De Lotbinierre said this was normal. I can eat fine I just have severe ear fullness. Did you have this fullness and I have severe migraine symptoms. Did you have this right after your surgery? I am so happy with my Dr. I felt I was in good hands. I hope these symptoms go away.
CHRIS said:
Hi Jackie
I am 2 months post MVD, So far no pain at all, My surgeon says the pain will never come back.
I only hope he is right. That is the positive part. But there were side effects that I was warned about.
Some would say they are the negative part.
I lost hearing in my left ear.
I can't swallow very well. I have a feeding tube at present, but it it temporary until swallowing returns.
For me both of these headaches are worth it to get rid of the pain.
Some would rather live with the pain. The pain I had there was no living with, surgery was the only option.
I posted 2 photos of what surgeon found if you want to see go to media then photo.
hope this helps, good luck and hang in there.