I had my gamma treatment on July 23, 2014 for my dural av fistula at Emory in Atlanta. Its been almost 3 months and for the past month I haven't been feeling well, I'd like to think the radiation is fixing me up inside. Most days I feel so much pressure at the back of my head along with sharp stinging pain, is this all normal as in healing? I am thankful to be part of this group because we tend to relate and understand people who share similar experiences as we do, simply because its not easy to go through.
I was experiencing the same thing you are going through but it wasn’t because of the Gamma knife. The pressure pains in my head are still there every once in a while & I had my procedure done back in 2002. I was told that will not go away because I had 2 AVM’S pop in my head. Hopefully your pains go away.
Interesting. I have similar disorder but because of where it was I have to have a craniotomy to repair. But I do remember the neurosurgeon saying that there was really no side effects with Gamma.Should check with your doctor. Best of Luck
My daugther had gamma knife and has not had any real side affects. If not counting losing her hair where the procedure was done. She had hers in June of 2012. Her AVM was rather large and drs considered doing two seperate procedures as opposed to one. She had headaches periodically after but nothing ibruprofin could not handle. It is rare for her to have a headache now. She had her 2 year MRI last summer and her AVM is shrinking and the brain around it is looking mormal. Drs did say after the procedure that she may have increased headaches and a higher chance of siezures. She is not having siezures and was able to discontinue the medication. Have hope that you will feel better as time goes on. My daugther is 13 and you would never know she has an AVM.
Keith, I really wish surgeons wouldn't say that. We have many members report side effects with radiosurgery. Often, they were not informed of possible side effects before their procedure.
Pains like that sound like “microbleeds”.
Gamma (and regular radiation) work slowly over time, to fill veins missing capillaries in, so the blood flow can reroute to healthy areas. Unlike a tumor, that would dissipate with the same treatment.
I’m told gamma VERY slowly closes the area missing capillaries off.
I’d be asking the doctor for an angio with contrast. At the very least an MRI, while the pain is occuring, to check for bleeds.
How did that feel when it popped? I hope the pain goes away too, thank you!
So glad to hear that about your daughter and thank you!
Ixi, hope you're doing ok...considering.
I've no experience of brain AVM as mine are spinal. I had Cyberknife to 2 sites at L1 and L3, 14 june 2014. While the procedure is painless and boring I noticed nothing for a few days. I diarised everything and recorded a reduction in my fitness & mobility, increase tiredness and feeling sorry for myself. I was warned that the radiation so close to my nerves could cause further damage and future deterioration but not having it done could also eventually end in a bleed or nerve compression leaving me in a wheelchair. I've 18 months more to wait for a conclusion, but what I do know is, the radiation and subsequent rerouting of blood flow can do weird stuff along with stress and worry cause other biological changes that are not easy to quantify. That's why the consultants want to see us on regular appointments to record what has happened. I bet they can no more tell me what will happen than giving me the lottery numbers in advance...
All I can say to help is, keep asking the questions of your doctors, reinforce your real friendships and do stuff to distract yourself, i help my kids and others to cloud my own problems...
I have an MRI schedule for Jan 2015, I will definitely be asking the doctors.
This made me feel so much better, thank you so much!
i had my gamma knife a week ago tommorrow, and its been fine. the angio was even better than the second one. i did experience a really bad headache right after the frame was taken off but that got better after about an hour. they told me that it if there were any side effects it usually would be 6 to 9 months after and maybe three years for the thing to work// i wish it was sooner so i could get it over with but feel good overall
Wozza, do you mind if I ask where your surgery was done. My hubby’s is going for surgery on a very large Duran fistula in his spine and I must say I’m a little nervous about the whole deal
I’ve had two gamma knife so far. I have two breeders right now one at the stem of my brain the other is in the central part of the brain. I can tell you that I have gone through a lot but I’m still here and feeling blessed to be here. JUST NEVER GIVE UP. God is good. I felt bad for about 6 months. Did both times. My headaches were killers but now 11 months out I am not getting them as much. But I am still here. Bottom line hang in there.gods speed to recovery.
I’ve had Gamma Knife in january 2014 and i remember that for 2-3 months, i had headaches, my doctor said that it’s normal because you know, we have still an AVM in our brains… just never give up, they are all normal and you’ll be very well in a few years still i have headaches and some other symptoms sometimes but i know in a few years my AVM will be gone(i am not sure about the grammer sorry:) )
I'm in the UK and had Gamma Knife to reduce my AVM in March 2013. I was told it was like sunburning my brain where the AVM is. I felt some discomfort at first but it went away. You should probably check with the neurologists if your's continue. My neurologists told me I had fours years recovery ahead. Two were where the Gamma Knife was having the greatest affect and I would be susceptible to further strokes (I'd already had one) or seizures (I'd already had one too). I've had a few seizures since. I will be checked for progress in March 2015. The 2 years after that I should be out of risk of strokes but could still have seizures (i've been told this is probably a situation for life). A year and a half on I feel well and just keep positive focus on that part of the brain healing. Have faith that you are being healed. It is slow but you will get there. Sending healing thoughts. Martin
I hope by 6 months that the pain should go down some
I’m also sending healing thoughts your way. Thank you so much . My MRI is sched for jan 2015, hoping to hear good news.
I had the embolisation done at Royal London Hospital Whitechapel on NHS, the Cyberknife done at the cyberknife centre, Harley Street London privately, as this was refused funding on NHS. (I have to thank Mr Simon Stevens crew for that - CEO of NHS England)
Checkout thecyberknifecentre.com - Dr Nick Plowman - consultant oncologist (at Barts and privately)
My mom had gamma knife for cvm in August 2012. She started having the same headaches soon after that. In October 2013 she had sudden onset memory loss. After several MRIs and a few neurologists later, we finally were told she has radiation necrosis from the gamma knife procedure. It has progressed pretty quickly over the past year. She is 58 yrs old and has been in rehab hospitals on several occasions. She is now in a skilled nursing facility “hoping” she will get some better. I pray for her everyday that I will get my mom back. I pray that no one else ever has to deal with this. Prayers for you! Keep your faith in God that he will heal you in his time.