Hiya everyone has anyone had the gamma knife treatment as I’m waiting for my date to have it done, id like to know how it affects your life after it. As I’ve been told I could go blind after it due to where my avm is located, I’m scared as I’ve got a 20 month old little boy, the consultant told me I’m lucky that it hasn’t hemerged yet as I’ve had it since I was born and I’m now 25 and the chances of it hemorging is 80% and everyday it’s in my brain without any treatment the percentage goes up by 2% and the risk of it hemorging is that it could kill me, I’m so scared, it’s making me ill please can someone help me
Thanks jodi
Hi, Jodi,
I just had my 3rd GK treatment. I had the first one in June 2011, the second in December 2011, and just had the 3rd one on June 6.
Due to the size & location of mine, GK was a much safer option than a craniotomy--I had a much higher chance of vision & motor deficits from a craniotomy to remove the AVM than of having it rupture while treating with GK.
With the first GK, I also had an angiogram that day. It took me a few days to feel better from the angio. After the 2nd GK, I had a couple of days of feeling yucky & cranky, then was sweeping & mopping my floors 3 days later because my brother was coming to visit with his new girlfriend.
This week has been the worst for me. I just haven't been able to shake the headaches. I went in to the e.r. & they have given me some pain meds to take every 4 hours for the next couple of days to try to stay ahead of the pain. I do have a history of migraines, and this isn't the first time I've had headaches for sevral days. I'm hoping to be back into the swing of things in another day or two.
I'm 43. And, luckily, my AVM hasn't bled. Neither did the 2 aneurysms that were discovered during the 2 angiograms I had last year. I had a craniotomy & had them clipped--and had no deficits from surgery.
I have confidence in my neurosurgeon & have gone with his advice. I've gone in knowing the worst that could happen and mentally preparing myself. However, I have had good success with my treatments. I was able to see my scans from June 2011 next to the ones from this June--it was very cool to see that the AVM is already visibly smaller.
Feel free to messaage me & ask any questions.
angie
Hiya angle
Thank you for your comment it’s has put my mind at rest abit, but it’s is still a scary thought of going thru this as I’ve only know it was an avm in February after been taking in to a&e after not feeling well before that I had a fit in November 5th 2011 where I was out cold and fitting on and off for near four hours and thy just said it was epilepsy and gave me anti seizure meds and tht I’d have to go and see my doctor when I did get to see my doctors 3 weeks after being in a&e my doctor didn’t have any information about me going in to a&e and was totally comfused as all he could go off was what me and my partner was telling him about what had happened that night, to this day he’s still only just recieving information from January about seeing my consultant. All my family and friends are beng so supportive of me but I can’t seem to keep it together I just start crying at everything and loosing my temper easy, my dad and partner say its because I’m scared and just thinking of the negatives and that I should think of the posatives of having this treatment but I can’t as I keeping thinking the worse just n case it doesn’t work as I’ve got to look for the future of my little boy, he sees,e upset and says stop crying mummy which I try to be strong for him
Jodi xx
Hi Jodi,
It’s scary finding out that you have an avm but the good news is that you’ve had it your whole life and it hasn’t bled yet and soon you will be having treatment. That’s the way I’ve tried to look at it. My daughter was 3 months old when I had my seizure and my avm was discovered. It’s now 18 months since I’ve had gamma knife and my avm
Has shrank considerably. I can’t wait for the day to get the all clear but until then, I tried to stay positive and carry on as ‘normal’ as possible. Try to be strong as your little one and partner need you. Sending you lots of hugs Karen xxx