My AVM is unruptured, and i'm thinking about taking the GK treatment (more preferably than surgery). Before doing so, i would like to know how are the effects after took GK. For the ones already did or knew this please answer. Are you still suffering from headaches? Or you the headache just gone after GK? Do you feel any differences? And are there any chances the AVM might come back? :s
hi, i had 2 doses of GK, with no side effects at all. Very tiring day, slightly headache but only from the minimum stress/screws/angiogram etc. Stayed over night, next day rest, day after straight back to work.
is that for real? do the headaches from the past can came back again? So you're now AVM free then? It's really nice to hear that :)
I did Gk almost 7 months ago, and have begun to feel things at the 6 month mark, true to the doctor's prediction. Prior to GK I never experienced any headaches or any other symptoms. Feel free to read my page on my story, but I had embos close off most of my avm after it ruptured. The GK is only to completely close off the AVM. Now I have been experiencing mild to bothersome headaches, nothing which stops me from funtioning normally. Advil/Motrin usually does the trick. I was told that the headaches are an indication that the treatment is working, and there is swelling as it does its job. The only downside that I see to GK is that it takes a while to work, whereas a craniotomy is instantaneous yet more risky since they are really cutting open the head! Please feel free to contact me with any other questions or concerns.
no i dont have headaches myself (touch wood!). I get the odd mild one, but thats about it.
From the GKR ive had 90% removed, but not all. 10% is just too deep even for the GKR and the risks are too great (apparently) but to have 90% removed is great too hear.
I had my first GKR in 2003 or so. Then another in 2007.
I wish u could luck on yours :)
My AVM is unruptured, too. I had GK on June 8 of this year for my AVM. I had a craniotomy 2 clip anuerysms on July 6. I'm scheduled for my second GK next week.
Like Rich said--it is a long, tiring day. I was cranky from not eating, not getting my morning mocha, and from my back & neck hurting due to lying flat for 6 hours post-angiogram. And attaching & detaching the halo was painful. Still--MUCH easier & less painful than a crani.
In September, my headaches increased again & changed a bit. I had an MRI, which showed remodeling, which was good. In October I went to see a neurologist to deal with them. A daily med + better sleep habits seem to be helping. I don't think I've taken a Maxalt in the past 4 weeks. I've been able to control what few headaches I've had with Tylenol & sleep. Haven't had to take a sick day with a headache yet this shcool year! (Have had to take time off for MRI & to see new neurologist).
I had GK on 1st Oct ofr an unruptured AVM, had a long day but wasn't bad at all. I was in great form once everything is over..they started quite early about 7:30AM and I was back in my room at 12:30PM. Overall not as bad or scary as I was expecting it to be. Flight back home next day and had no problems with travel..may be due to high dose of pain killers I was full of energy. Then from 3rd or 4th day, fatigue and headaches kicked in...not so bad again and nothing that stops me function normally (I have had routine headaches all my life so I'm used to it). Stayed back from work for about 3-4 weeks. Working full time now and no major problems so far. Still feeling frequent headaches so my GP put me on a migrane medication which did help but the pain is still there on the site of AVM specifically when I'm going through some stress or in noise so will go back to my doc in next few days. Just trying to monitor the new pattern of headaches.
Good luck to you!
thankyou Rich, it's great to hear that. In my country, GK is not available yet. we have to go to Singapore or China and Taiwan to have cheaper GK. There's one hospital here who already bought the last generation of GK called perfection or something, but it's still a long way to install those things. So my parents told me to do GK outside the country.
Thanks again :)
it's nice to hear your story Birdie :)
Yeah, i agree with you. GK takes a while to work but it less riskier than craniotomy. I'm too afraid for craniotomy, like you said! I can't imagine they really cutting open my head and then putting it back again. Seems really creepy right.
Hope you become a total AVM free soon :)
Hey Collins
So hows your second GK? Do you already do it? Please keep us informed :)
Anyway, which one is worse, the headache before GK or after it? We all know AVM makes us had headache almost everytime right, and frequently the severe ones.
Well, hope you're doing good with your 2nd GK :)
And for ky, thankyou for sharing the story. It seems the GK is not as bad as I think before thanks to everyone who post in this disscussion. Well hope youre doing well :) and good luck to you too :D
Hmm I'm reluctant to answer but I would rather have known. I was treated quite aggressively with GK in June. I know longer have headaches or rarely. I have severe swelling that we monitor with an MRI every three months. I started having focal partial seizures on day one. I now take 2000mg of Keppra per day. I no longer drive or work. I am tired most of the time. I have to be very careful because I get confused easily. I lose number sequences and have a difficult time reading and processing. I had no symptoms of my AVM prior to treatment except headaches. Everything I am experieincing now is a side effect of Gamma.
Im sorry to hear that Stephanie...try and stay positive and my prays are with you God bless.
Hi, Dycha,
I had my 2nd GK yesterday. I didn't have to have an angiogram this time, but still spent 12 hours at the hospital. Mine was the most complicated, again. I started out first in line for halo & MRI, but ended up last in the GK machine because they needed more time to plan my treatment & were sending the other 3 people in first since they needed less time in the machine. Last time was 1.5 hours. This time 55 minutes.
They originally planned for yesterday to be my last GK, but decided it would be safer to do 85% of the remaining AVM today, and then finish up in June.
I woke with a pounding headache at 3:00 this morning, but I've had migraines that have been worse. I've tried to take it easy today, but still have a dull headache. It doesn't help that the weather has been strange here. We went from freezing temps a week ago to spring like weather this week with rain the past couple of days. Changes in barometric pressure is one of my migraine triggers.
Today's headache is the worst I've had in months, so that is actually progress. Normally, I would have had at least 2 or 3 tht were bad enough to keep me home from work at this point in the school year. I've had to take days off for an MRI, to see my new neurologist, and for GK this week, but not because a migraine has incapacitated me.
angela
Thank you Adrian. I just wish someone would have told me that though side effects are rare there are still risks, complications and the potential for serious side effects. My family and I are adjusting to our new normal and all is well. I start fresh everyday. What I accomplish is determined by how I am feeling.
Hi Stephanie :)
Sorry to hear that, please stay positive and keep us informed :)
From what I see, it seems every person has different side effects of gamma knife. Some people doesn't feel anything while some people can feel different.
I hope you feel better soon
Hi Angela :)
Thankyou for sharing with us :)
So you have to have one more GK to finish everything up? It seems many people suffer from the headache after the GK. I hope you feel better soon. Do you take any medicine or something to help the headache?
I want to have GK soon, although my AVM is still unruptured it's better to prevent the AVM before it's ruptured. It's still expensive for me, personally. more because I lived in undeveloped country and they don't provide GK here so i have to go overseas means that will be more money to cost for transportation, accommodation, etc.
Well, hope to hear more from you soon :)
Dycha--yes, one more GK to finish things up, and I had some Vicodin left over from having my aneurysms clipped this summer, so that & ice packs took care of Thursday's headache. The headache is gone. Now just have tender areas on my forehead & scalp from the halo pins.