NUTS! 8 months since gamma knife and I had a cluster yesterday

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JayJ
Regular Member


Date Joined Sep 2004
Total Posts : 26
   Posted 4/11/2005 8:54 PM (GMT -7)   
I had gamma knife surgery 8 months ago and I know it takes a long time to show full results. I really thought I was getting something out of it last month. I guess I really have. After the surgery I started having clusters at least twice a month, but before it was once a month. I'm just getting back to the once a month pattern and I made it more than 30 days. Not much, but it's an improvement I guess. I made it 34 days. I was counting the days. That's probebly the wrong thing to do but I've never found a trigger like stress or lack of sleep or anything. After these clusters I get depressed and can't do anything. I'm suprised I'm online now typing this. I don't know if anybody has any experience with gamma knife surgery for epilepsy but if you do I would like to hear a thread from you. Thanks a lot. You all will be in my prayers tonight.   Jeff

kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 4/12/2005 6:27 AM (GMT -7)   
Jeff I am so sorry you have clustered! I have not seen others here who have been through GAMMA knife surgery. I am wondering if there is a way to find others through your doctor's office? If they would let you post on their bulletin board maybe to connect with others who have been through it? I will do some searching, there might be an on line group just for Gamma knife.

Hang in there. I know it is so frustrating to have things start again. I think seizures in hte first year after traditional surgery do not necessarily mean it is not a success. I know they say keeping meds steady for at least a year is key as well.

I sure hope they can get these clusters to stop. Glad you did come on. Praying for you!

JayJ
Regular Member


Date Joined Sep 2004
Total Posts : 26
   Posted 4/12/2005 9:08 AM (GMT -7)   
Thanks for responding to such a rediculously desperate thread. I'm the first one at this hopital to have this procedure done. I'm at a teaching hospital in Milwaukee but it's not an accepted way of treating TLE at this time. I found one group of people that have 3 members that have had gamma knife over the past few years so it's hard to get much info. It's not very active either. It's hard even getting technical info online if you don't subcribe to these magizines. I really am not going to subscribe for one artical. I take all my meds every day because if I don't I know what happens....I end up in the ER. I'm taking 300mg Dilantin, 500mg Lamictal and 400mg Zonegan a day. I had neurologists that used to accuse me of not taking my meds untill one finally decided that I was intractable. I've had "clusters", my neurologist says that I go into a state of status every time, for years. My neurosurgon when I first saw him said I was lucky. I told him, if I was lucky, I'd be a neurosurgon making as much money as he does. LOL He doesn't have a sense of humor. Last time I saw him I told him I thought he was a very brave man doing what he does, he told me thought I was a very brave man. That's scary!. God bless all and you will be in my prayers.     Jeff

RanMan
Veteran Member


Date Joined Feb 2003
Total Posts : 665
   Posted 4/12/2005 10:21 AM (GMT -7)   

Jeff,

I'm sorry for what you're going through right now.

I haven't had gamma knife surgery nor do I know anybody who has but I did some research and I found these links on the web, hopefuly they can provide the information that you are looking for:

www.cduma.com

www.umm.edu

www.gammaknifecentre.com (this is the best one)

Goodluck

Randy


Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.
 
275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day


DBG
Regular Member


Date Joined Sep 2004
Total Posts : 235
   Posted 4/13/2005 5:19 PM (GMT -7)   

Sorry about the sz's, I know how depressing it is to have sz's after surgery.  It's been 2 years since my last surgery and I still count the days in between sz's hoping that maybe this month will be the month that i'll be sz free.  We get such hopes up that it's almost impossible to not count the days and then end up disappointed when or if the sz's do come back.  Hope your feeling better.

Christine


Shawnallen
New Member


Date Joined Oct 2006
Total Posts : 1
   Posted 10/19/2006 8:40 AM (GMT -7)   

 I am going from Dallas to Chicago next week to meet with a surgery about doing gamma knife for my chronic cluster headaches.  I can only find a couple of studies about doing gamma for clusters.  Anything anyone can tell me would be a great help.

Shawn


kman78
Regular Member


Date Joined Jul 2006
Total Posts : 74
   Posted 10/19/2006 6:54 PM (GMT -7)   

Hi jeff,

I'm sorry to here that you continue to have seizure clusters after surgery.  May I ask why you had gamma knife surgery rather than a temporal lobectomy.  I actually had a temporal lobectomy recently at a teaching hospital in Milwaukee.  May I ask the names of you neurologist and neurosurgeon.  I'm just curious if we may have the same doctors. I wish you the best, kurt


HALO
Regular Member


Date Joined Nov 2004
Total Posts : 167
   Posted 10/25/2006 1:12 AM (GMT -7)   
JayJ,

Actually, counting days until or between clusters can be very stressful or depressing itself. Which can bring on more seizures. I understand how hard it is not to worry about when the next seizure is going to happen. I'm guilty of it too. I think we all are. It's a viscious circle. But, that could explain why you're experiencing what you are. Keep us posted. I hope things get better for you.
Intractible Epilepsy,7 knee surgeries, 1 shoulder surgery, compressed discs in spine, Curvature of spine, sacroiliac joint disfunction, leg length deficency. Meds:  Topamax 300mg's, Klonopin 1.5mg's, Lamictal 200 mg's
No one left behind!
RLTW!
Educate, Enlighten, and Empower!
Epilepsy Forum Co-Moderator

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