Gamma knife hopes/rant

Something has been bugging me lately.

Last I went to my GP (I decided I didn't like the neurologist I originally saw, if that man had a parrot in the office, it would only know the word "gabapentin"), I told her I was really interested in the gamma knife procedure if I had insurance and a ton of money. She told me that I'd have to go through the whole gamut of meds in order to even be considered.

Someone correct me if I or my doctor are wrong... for real? Gamma knife is supposed to be the least invasive, least chances of really screwing stuff up AND can be repeated and gives years of pain-free or at least moderately pain-free life.

I know I'm the type to go for the big thing rather than daily meds, but this makes no sense. All the anticonvulsants carry huge risks, most can actually kill you, but by all means, if you respond to any medication no matter how much it effects your life, you don't qualify for the least invasive procedure? To me, this makes no sense. And for the ladies here on hormonal BC, well, we know how short the list of anticonvulsants is that don't impact birth control. So I have to be a guinea pig until we deem nothing is acceptable and THEN I can get the radiation? And isn't gamma knife most effective in the beginning of the disease anyway?

Why can't this be one of the first treatments? Yes, I know it's a bit of a dream come true and there are risks, but to me, it seems more beneficial than the daily regimen that lots of us seem to be on. To me, it's almost a cure, and I'd personally rather have the cure than the "management."

Rant over. I'm gonna go find a cupcake or something...

Let me be the one to first respond ... I had GK on March 3. In order to get there, I tried trileptal. Bad reaction that put me in the ER. Also had a bad reaction to Topomax and Lamictal years ago, which I tried for migraine. So I concluded that I would not be taking any more anti-convulsants. Next I tried Gabapentin -- got a rash. Gave up with my neurosurgeon because things just weren't going in the right direction (I was in unbearable pain and very depressed). I finally got in with the best neurosurgeon in my area. We tried Baclofen -- it also made me feel weird. He suggested amitriptyline, and I declined it fearing it would clash with my low dose of Prozac (which I have been on for 16 years). At a routine visit to my psychiatrist, he said TRY THE AMITRIPTYLINE. It just might help. If it doesn't, stop it. And so I did, and he was right. My neurosurgeon was pleased. We scheduled an MRI (took 6 weeks to get one w/ sedation). Took 2 months for me to get back to the neurosurgeon to review the MRI because I had an attack the day of my appt ... SOOOO, finally, my neurosurgeon showed me this nice vessel resting right on the nerve. Plain as day. I asked if that meant I needed MVD, and he said no, we should try GK first. It's less invasive and recovery is quick. It's painless.

As with any medical problem, and because of health insurance, there is a protocol that is usually followed. You have to go through the med list first, then be considered for surgery.

Case in point -- I've had migraine for years. Finally, Botox injections were recommended for those with chronic migraine. But before the insurance would pay for the injections, I had to have tried at least one medicine of every class used to treat migraine and experience failure.

And another case -- I was diagnosed with degenerative disc disease about 10 years ago. Over time, my spinal discs are giving out. In 2004, my arms hurt very badly. I had to go to PT. When that didn't help, I got steroid injections. They helped for about 5 years. Then they didn't work any longer and I had a double discectomy and fusion to solve the problem. Fast forward 4 more years and then another disc is going. PT again. No help. Steroid injection -- didn't work. I could have a surgery if I wanted to, but I don't (based on the experience with the last one), so I choose to take opioids until the day comes that I have no other choice but surgery.

We can thank the medical field AND the insurance industry for this. So many times, we just can't demand a procedure. We have to try the different therapies before they'll cut on us. You have to have the symptoms to warrant the test. You have to have the test to diagnose the problem. You have to try the pills to cure the problem. Then you can have the surgical procedure to correct the problem. It SEEMS logical. But not everything feels fair when you're miserable.

Just speaking from my experience ...

Hi CindyLoU
Have you experienced any side affects since GK please refer to my
Introduction letter posted yesterday, best regards Georgina x


CindyLou said:

Let me be the one to first respond … I had GK on March 3. In order to get there, I tried trileptal. Bad reaction that put me in the ER. Also had a bad reaction to Topomax and Lamictal years ago, which I tried for migraine. So I concluded that I would not be taking any more anti-convulsants. Next I tried Gabapentin – got a rash. Gave up with my neurosurgeon because things just weren’t going in the right direction (I was in unbearable pain and very depressed). I finally got in with the best neurosurgeon in my area. We tried Baclofen – it also made me feel weird. He suggested amitriptyline, and I declined it fearing it would clash with my low dose of Prozac (which I have been on for 16 years). At a routine visit to my psychiatrist, he said TRY THE AMITRIPTYLINE. It just might help. If it doesn’t, stop it. And so I did, and he was right. My neurosurgeon was pleased. We scheduled an MRI (took 6 weeks to get one w/ sedation). Took 2 months for me to get back to the neurosurgeon to review the MRI because I had an attack the day of my appt … SOOOO, finally, my neurosurgeon showed me this nice vessel resting right on the nerve. Plain as day. I asked if that meant I needed MVD, and he said no, we should try GK first. It’s less invasive and recovery is quick. It’s painless.

As with any medical problem, and because of health insurance, there is a protocol that is usually followed. You have to go through the med list first, then be considered for surgery.

Case in point – I’ve had migraine for years. Finally, Botox injections were recommended for those with chronic migraine. But before the insurance would pay for the injections, I had to have tried at least one medicine of every class used to treat migraine and experience failure.

And another case – I was diagnosed with degenerative disc disease about 10 years ago. Over time, my spinal discs are giving out. In 2004, my arms hurt very badly. I had to go to PT. When that didn’t help, I got steroid injections. They helped for about 5 years. Then they didn’t work any longer and I had a double discectomy and fusion to solve the problem. Fast forward 4 more years and then another disc is going. PT again. No help. Steroid injection – didn’t work. I could have a surgery if I wanted to, but I don’t (based on the experience with the last one), so I choose to take opioids until the day comes that I have no other choice but surgery.

We can thank the medical field AND the insurance industry for this. So many times, we just can’t demand a procedure. We have to try the different therapies before they’ll cut on us. You have to have the symptoms to warrant the test. You have to have the test to diagnose the problem. You have to try the pills to cure the problem. Then you can have the surgical procedure to correct the problem. It SEEMS logical. But not everything feels fair when you’re miserable.

Just speaking from my experience …

I like your discussion.

My naturopath said something to me just yesterday. An operation on the nerve that may only last a couple of years, is a couple of years without meds, like gabapentin.

Some of the operations do seem simple to me too, so why not do it.

and I love your "parrot in the office" quote.

I have had two GK procedures. The first took 3 months for pain relief and that lasted 8 months (4 years ago). I white knuckled it without the pain meds that zonked/zoned me out until my second GK, two years ago in March. I have had no pain since the day after the procedure and no side effects. The second time they gave me dye that lit up where they lesioned the nerve the first time, so they went further down the nerve . Success! I am not a candidate for MVD due to previous brain surgery/scarring in the area, so I went this route. I know without insurance the cost is $65,000!

Have a pain free day! I wake up every morning and thank God for another pain free one,.

Mollycule

I wish you a pain free life Molly. No one should have to suffer the pain of TN i wish they could reverse the affects of my husbands GK. Unfortunately not xx



Georgina said:

I wish you a pain free life Molly. No one should have to suffer the pain of TN i wish they could reverse the affects of my husbands GK. Unfortunately not xx

I would never do Gamma Knife again. It sets you up for severe nerve damage. My MVD worked well, but the Gamma Knife damaged me so badly. Do not do this procedure.

Hi Santafared, So sorry to hear of your problems, in what way did the GK damage you, i wrote an article on this site listing all my husbands problems post GK, i would be interested to know if you suffer in the same way. Georgina. UK

Where should I start? I'm in my 16th year of this monster. All the usual with 2 not needed root canals, switched dentists (mine thought I was crazy). Then a friend's friend(a surgeon) told her what I had. Got an MRI, neuro, and was on Tegretol for 6 1/2 yr. It quit working. Christmas got really bad and couldn't fine Dr. They all go on vacation. ER and they didn't know what to do. I ended up with 3 months FML from my job. Lost weight, could not talk, no answering the phone, etc. Found a new neuro. Over the next few years tried all different drugs. Most of us try them all at some Finally decided on Gamma Knife. It was non invasive. Only lasted 6months no pain. Then back with a vengence. Neuro suggested an MVD by only the best, Dr. Peter Janetta. So I contacted his office and got an apt. Had to travel 9 hours.

Well, he had retired. So Dr. Raymond Sekula took great care of me. No problems. The TN pain is gone. But he now thinks I have AD. Suffer with numbness on whole side of head along with soreness on the whole left side of head and scalp. Can not eat or drink on that same side. I drool, can't feel anything. Left eye hurts, all the whole side of face. It is something one can not explain. Pain with no TN pain. Now I'm on 1500 mg of Neurontin. Was on 2700mg of it. Cut myself back. I feel in my heart the Gamma Knife set me up for the damaged nerve. I think the nerve was damaged long before my MVD. He fixed the initial TN. They were 2 yrs. apart. They is so much more to tell.

But I'm miserable and I've decided there is no one that can help me. I'm just stuck with this monster that lives in my face.

Please keep in touch. Let me know your story.

.

Hi SantAfered,
My husband who has had TN for 13 years, and is also diabetic walked/ran 5 mile a day when almost overnight he started to have trouble with his legs in as much that he was hAving problems placing his right foot and his brain was not sending messages to his legs. His legs kept buckling and he was losing his balance. Also unable to stand on toes He was sent for numerous tests and eventually MISDIAGNOSED. with ALS. However we went to see one of fhe top ALS/MND Professors in the UK Dame Prof.Pam Shaw. For a second opinion. After more tests she ruled out ALS but told us that in her opinion later confirmed by the TN team that the Gamma Knife procedure he had In 2012 had caused damage to the nerves in the brain. Like yourself he was pain free but in his words similiar to yourself he said he felt there was something inside his head and face trying to get out Constant feelings of water trickling down inside his face, feelings of burning, pins and needles, something pulling behind his right eye, his nose, his mouth, numbness in the jaw, drooling when he eats and now more recently problems with his right eye, he is never free of these feelings and he says he would prefer the pain back as he did have pain free periods whereas this is constant. He has times when he feels suicidal, he has extreme fatigue after the shortest of walks or exertion. His legs have got worse and he has motor axonal neuropathy whereby the nerves in the brain are not sending messages to his legs/feet. Not sure if this is diabetic related or TN related as it started three months after the GK procedure. The team in charge of the GK op met with us last October admitted that damage had been caused but repeatedly pointed out that we knew all the risks before signing the op papers. This was untrue in as much as we knew it could cause slight paralysis in one side of the face but nothing as extreme as he is suffering. They told him to go away and get on with life as he was one of the unfortunate ones who seems to have all side affects possible and nothing could be done. They put him on antidepressants but nothing helps, He seems to be on a downward spiral, understandably he has periods of extreme anger. (The TN was caused by a loop pressing on the nerves at the top of the head)
Do you have problems walking we are still not sure if this is caused by the TN GK procedure or diabetes, no one seems to know. I pray every day that they will find a cure, my sister also has TN and recently diagnosed with MS which apparently in many cases goes hand in hand.
God Bless you. Georgina x


santafered said:

Where should I start? I'm in my 16th year of this monster. All the usual with 2 not needed root canals, switched dentists (mine thought I was crazy). Then a friend's friend(a surgeon) told her what I had. Got an MRI, neuro, and was on Tegretol for 6 1/2 yr. It quit working. Christmas got really bad and couldn't fine Dr. They all go on vacation. ER and they didn't know what to do. I ended up with 3 months FML from my job. Lost weight, could not talk, no answering the phone, etc. Found a new neuro. Over the next few years tried all different drugs. Most of us try them all at some Finally decided on Gamma Knife. It was non invasive. Only lasted 6months no pain. Then back with a vengence. Neuro suggested an MVD by only the best, Dr. Peter Janetta. So I contacted his office and got an apt. Had to travel 9 hours.

Well, he had retired. So Dr. Raymond Sekula took great care of me. No problems. The TN pain is gone. But he now thinks I have AD. Suffer with numbness on whole side of head along with soreness on the whole left side of head and scalp. Can not eat or drink on that same side. I drool, can't feel anything. Left eye hurts, all the whole side of face. It is something one can not explain. Pain with no TN pain. Now I'm on 1500 mg of Neurontin. Was on 2700mg of it. Cut myself back. I feel in my heart the Gamma Knife set me up for the damaged nerve. I think the nerve was damaged long before my MVD. He fixed the initial TN. They were 2 yrs. apart. They is so much more to tell.

But I'm miserable and I've decided there is no one that can help me. I'm just stuck with this monster that lives in my face.

Please keep in touch. Let me know your story.

.

Hi there. I got an email asking for email address. Not sure if it was intended for me because this site is so screwed up and all of my posts and conversations appear to have been deleted. Anyway, mine is sheilabarnes007 and I’m at yahoo (I only left out the ampersand, etc, because sites often delete full email addresses).

Thank you. It was me. I don’t get this new site. It is very hard to navigate. I will probably get of of here permanently. do not understand it at all, do you? I have been on here longer then it says. At least 7 yrs. I sent you a personal email. Have a great day.

how was the procedure? did you find relief? i’m so desperate!!

Hi there,
Feel free to give me your personal email if you’d like to communicate that way.