I had Gamma Knife on December 4th for TN on the left side of my face. I am now having a constant pain in my left ear that runs to my jaw and my left eye has a pressure pain that doesn't go away. I am still having the electric shocks which have become more frequent since the Gamma Knife. Both of my eyes are twitching and I feel like bugs are crawling on my scalp. Is this normal??
Anybody else have these problems after Gamma Knife??
Please help! I am in so much pain!!
Call your doctor and get some narcotics!!!! Go to ER if necessary! Ask for topical drugs too!
On the groups tab above there is gamma knife group --- were you a candidate for MVD???
Go read on Gamma Groups // join and you can ask questions.
I am having it now, although mine is on the right side. Had a very unpleasant relapse 3 days after procedure. This was followed by a headache that lasted for 2 days. It’s a process I know that requires patience. My procedure was done on March 20th
Hope that by now you have recovered.
Hi! I hope this finds you in a more tolerable state. I had Gamma on March 20th and am now experiencing headaches on the right side with right ear pain. Do you still have these issues?
I had Gamma Knife almost a year ago for the TN in my mandibular branch. Since the GK, I have had the creepy crawly's in all three branches with burning pain, sharp pain, and my right eye is a major bother. It is dry, painful, every time I blink it itches. I get sharp pains in my eyebrown and it feels like the sharp pains are behind my eye. I am worse now than before the GK. I am taking Neurontin, Cymbalta and Hydrocodone PRN. I am miserable. It still hurts to be in the wind. So not much fun when you live in West Texas. We are contemplating a second MVD. Right now it is postponed due to me seeing a new neurologist. He is ruling out MS again and Lupus. Having MRI tomorrow. Hopeful second MVD will work. My eye is definately the most painful! I relate to your eye issue but not your ear.
Blessings
I am worse than I was when I originally posted! My jaw locked up and I couldn't open my mouth for 3 minutes today. Chewing is impossible. My teeth hurt, my face hurts, my eye hurts, my ear hurts, and my jaw hurts! I am contacting an attorney about this situation. I don't know what else to do! Blinking hurts!! My neurologist told me that the effects from gamma knife are irreversible and that I need to learn to live with the pain. I am 43 yrs old and had atleast 20 yrs left for my career which he says I will never be able to do again. He reccommended SSDI. I can't live like this!! I am in pain 24 hours a day and it scared me so bad when my jaw locked up earlier. That is a new thing that happened for the first time. My surgery was 4 months ago and I am 10 times worse off now!!
Do you have a bite guard to wear while sleeping? All that stress probably has you clenching your teeth while you sleep. That’s what happened to me.
Headaches are my issue after Gamma. Some ear pain and pressure. Get some meds that will function as muscle relaxers to get you through this crisis. My heart goes out to both of. You.
Not freaking out might be difficult. Today makes two weeks out. No headache today and feel a little better. Ear pressure is weird though. I can’t tell you how frightened I am that this might make me worse. I am going out today to walk. Oh…,in a ski mask. I need to get outside my head.
This procedure sounds like a living nightmare. I will be turning it down if offered! I hope you manage to find some relief. This is so nasty for you. My thoughts are with you xx
I have had the same response to gamma knife, which was done a little over a year ago. I have the constant pain in my ear and left eye, with burning pulling pain in my cheek, chin and jaw. You have described what I have had on my scalp nad my entire head, that creepy,crawly feeling and numb type tingling all the time, especially when combing my hair, etc. The medical center where I was treated says, of course, that they never heard of such symptoms as an outcome of GKS, but I had none of it before the procedure.
I am located in West Michigan, but have traveled to the east side of the state to see a Neurosurgeon, who is in Royal Oak, and on the recommended list here. He indicated my response to Gamma Knife indicates that I was and am atypical or Type II, and the procedure should not have been done--I asked about MVD and he feels it would not help, even though an MRI shows blood vessel compression of the TN.
Trying to take the edge off with meds, of course. took trileptal for some time with very little relief--now tapering off that and using nortriptyline and gralise. Any input on meds for this is appreciated, Thanks
I am so sorry to hear that your atypical was treated with Gamma. I have had success with carbamezapine. I am up to 800 mg. I also take nortriptyline at night as I have a tendency to grind my teeth. I am on the second week out of my Gamma knife and it feels like things are changing. I had to get off the Percocet. I now take Tramadol. It’s not as powerful but is not supposed to be addictive. I went to the gym and worked out through two panic attacks. Lord this condition triggers other things. It is definitely a process.
Most of pain that is felt on the left side I was told is atypical. As I have both this is still in issue. An ache in the cheek. Annoying.
Is 16 days out after Gamma knife. The squid, that’s what I call it is starting to back off. I call it the squid because that’s what it looks like in the diagrams that I’ve seen. The squeeze on the right side is less and less each day. Headaches on the right side come and go quickly. I sometimes lie and visualize a white light covering the nerve and calming it down . I listen to the sound of the ocean when I do this and pray. I pray for us all. So hope that this finds you comfortable today.
Debra
This WAS offered to me and with the info on here, I DID refuse it. I requested consideration of MVD; that doc literally laughed, turned his back on me and in not so many words said I didn’t know what I was talking about…he wanted to put me up my meds; which I am a zombie now!! My hubbie was with me and he was floored! The next day, he was fired. GREAT neurosurgeon now (do you homework) and am scheduled for MVD next Friday!! Excited, scared, can’t wait… 
Cris
Debra said:
This procedure sounds like a living nightmare. I will be turning it down if offered! I hope you manage to find some relief. This is so nasty for you. My thoughts are with you xx
From what my neurosurgeon has told me gamma is not an instant pain reliever. Once you have if done it takes awhile to actually get rid of the pain. I’ve just had my second mvd and I’m still in horrible pain too, but we are saving gamma as the last possible option. Reading your story makes me want to take that off the list of possibilities at all! I sure hope you start feeling better soon 