Gamma Knife surgery

[ericamanda01]

I have TN and wanted to hear from people who suffer/ed from it and had Gamma Knife surgery. How long were you in recovery and if it has reduced or stopped the TN.

 

[mickeyboat]

I am so glad you posted. I was just diagnosed with TN and had a 6 week flare-up over Christmas. It was terrible. I bumped one of your old threads and someone posted that she worked at a facility that did these procedures and that they were fairly successful. Hopefully she will respond here.

I hope you find relief.

Denae

Eta - the poster's name is OhhBother

 

[Travlin' Fool]

I did at Mayo Clinic in Rochester, Mn back in 2003. The proceedure only took a few hours & the treatment was totally painless (I had a brain tumor that couldn't all come out so they nuked the remainder a few months after surgery). For me the painful part was the metal head frame that they put on before the proceedure to make sure you didn't move. It was a painful few minutes while they put it on, but the discomfort subsided pretty quick.

I didn't experience any side effects after the proceedure, I was more bored than anything. I don't want to ever do it again, but this was a lot better than surgery again.

Good luck.

 

[Poohlovr]

Me-me!

I had the Gamma Knife done (for TN) done in--gosh, was it around 2001??
Anyway, I was pain free for almost 6 yrs and now have a little pain, easily controlled by a little Tegretol. Prior to my GK, I was on 1600mg of Tegretol a day + 64 mg of Gabitril. I had gone through Neurontin, Topamax, Prednisone, Elavil and pain pills--none of them helped. I was in constant pain (to one degree or another) and had huge, incapacitating attacks frequently. Now, I just have little shocks that come and go.

The actual procedure took 35 minutes. Of course, I was there several hrs to get the giant colander thing attached and for a MRI prior to the GK. Then they had me stay for about an hour after. I'm not sure why.Total was about 5 1/2 hrs.

The night before the GK, I could only eat food that didn't have to be chewed, because of the pain. I remember we ate at Cracker Barrel (we had to go out of town for my GK) and I had mashed potatoes, mac & cheese and cooked apples, because they didn't require a lot of chewing.

After the GK, we stopped at KFC and I ate fried chicken, with no pain.

About 3 weeks after the GK, I had one big shock and that was it for the next 5 1/2 yrs. Nothing, nada, zilch. No pain at all. Within one month, I was med free. Off of all of it.

I understand the usual time for the pain to go away is about 6 weeks.

If my pain gets to the point that the Tegretol no longer works, I'll be going back for another GK. The success rate a second GK is not high as for the first, but it's still the way I'll go.

Good luck with your decision!!!

 

[mrsv98]

OK, I will ask, what is TN? I don't know anything about it but I think gamma knife surgery is way cool.

 

[ericamanda01]

Me-me!

I had the Gamma Knife done (for TN) done in--gosh, was it around 2001??
Anyway, I was pain free for almost 6 yrs and now have a little pain, easily controlled by a little Tegretol. Prior to my GK, I was on 1600mg of Tegretol a day + 64 mg of Gabitril. I had gone through Neurontin, Topamax, Prednisone, Elavil and pain pills--none of them helped. I was in constant pain (to one degree or another) and had huge, incapacitating attacks frequently. Now, I just have little shocks that come and go.

The actual procedure took 35 minutes. Of course, I was there several hrs to get the giant colander thing attached and for a MRI prior to the GK. Then they had me stay for about an hour after. I'm not sure why.Total was about 5 1/2 hrs.

The night before the GK, I could only eat food that didn't have to be chewed, because of the pain. I remember we ate at Cracker Barrel (we had to go out of town for my GK) and I had mashed potatoes, mac & cheese and cooked apples, because they didn't require a lot of chewing.

After the GK, we stopped at KFC and I ate fried chicken, with no pain.

About 3 weeks after the GK, I had one big shock and that was it for the next 5 1/2 yrs. Nothing, nada, zilch. No pain at all. Within one month, I was med free. Off of all of it.

I understand the usual time for the pain to go away is about 6 weeks.

If my pain gets to the point that the Tegretol no longer works, I'll be going back for another GK. The success rate a second GK is not high as for the first, but it's still the way I'll go.

Good luck with your decision!!!

OMG This is so what I want to hear. I was diagnosed in 2006 and the past year it has gotten out of control. The cold just makes it worse. I used to love the cold weather until about 6 years ago. I am looking to get GK in the summer. I hope it works because the only thing that works right now is massive amounts of pain killers and I just can't live like that.

OK, I will ask, what is TN? I don't know anything about it but I think gamma knife surgery is way cool.

Here is the long version of what TN is. http://en.wikipedia.org/wiki/Trigeminal_neuralgia But the short version is Pain. Nothing but horrible pain.

I am so glad you posted. I was just diagnosed with TN and had a 6 week flare-up over Christmas. It was terrible. I bumped one of your old threads and someone posted that she worked at a facility that did these procedures and that they were fairly successful. Hopefully she will respond here.

I hope you find relief.

Denae

Eta - the poster's name is OhhBother

So sorry to hear you have it as well.