Hey Charles, out of all the comments yours has struck me the most. You have made me realise that I am still grieving for the pre AVM me and really that has gone now and I must accept the new me. You are the first person to make me realise that the weight gain is a symptom of the fatigue and not just me being a fat ****. I like your words of 'you must push yourself to exercise'! You are so bloody right. I feel inspired by you but I am weak willed and only I can make that push. The new me is something I am going to work on with my therapist. She has brought this up a few times but I have disregarded it as I don't want to accept the new me I want the old me back. I am starting to realise that this may not be possible. Thank you so much Charles you have helped a lot xxxx
Hi Renee, my AVM sounds a lot like yours. They called mine diffuse, saying it was spread out and mixed in with important brain tissue and also sitting on my optic nerve. Therefore surgery was not an option to remove it. My craniotomy was just a clear up operation of my haemorrhage. I was advised the only treatment was Gamma Knife. I was terrified of having this done because of the after affects I had read about etc.I also had the added risk of blindness as my AVM was on my optic nerve and the Gamma could cause me blindness or loss of vision. I asked my Gamma specialist 'If I was your wife or daughter would you be telling me to have this treatment with the risks involved etc?" He said YES without any hesitation. The treatment was unpleasant but over very quickly. I suffered extra fatigue and a couple of headaches for a couple of weeks but that was it. At my 2 year scan they said the treatment was progressing well. I will find out the full results June 2015. I don't think I have had any long term effects from Gamma. If you want to ask anything more please feel free to get in touch. xxx
Hi there, yes being kind to myself is one of the things I have not been very good at. I am starting to accept that the tiredness/weight gain and anxiety is part of my recovery. I am getting the headaches looked at thanks for your caring reply xxx
Hey, thanks for your positive words, I am medication for anxiety now. Hopefully when I am in a slightly better place I will be able to deal with things a bit better and remember how far I have come and what I have overcome. Please let us all know how you get on in September. Good luck with it xxx
Hi Shirl, don't worry I have spoken to my doctor about the headaches and we both think they are stress related. The first sign of anything abnormal and I will be straight up to hospital. I am 3 years past Gamma now so hopefully if I was going to have any bad side effects I would have had them by now. Hope your daughter is making a good recovery. XXXXX
Hey Beans, your reply warms me. 50 years post bleed!You are a remarkable person. A baby granddaughter is a wonderful gift. Hope you have people in your life who love and appreciate you. lots of love xxx
Thanks Yvonne. I am glad my story helped you. and hope it can help others.
I am checking in to see how you are doing after your Gamma Knife. The full results of the procedure was to have been reveled in June 2015. I am hoping that you received a good report. Where did you have your Gamma Knife performed? I have an appointment at the Barrow Neurological Institute Phoenix, AZ in August. I am trying to decide whether to have the Gamma Knife or leave my AVM alone. I have never had problems and my AVM was found accidently..One doctor says to leave it alone and the other says I am too young(52 yrs) to chance its rupture.
As you mentioned your daughter suffered a massive edema after 6 months prior to radiation.
May i know what to look out for? Cause i worry about that as "6 months" coming soon.
Hope to hear from you
Thank you Good Day
I had surgery 3-4yrs ago and still have headaches, dizziness, tiredness, stress and anxiety also…seems to be something I’m trying to just live with…stay strong and God bless!
You know Yvonne. I do not remember seeing this response from you until tonight. But,that is normal for me, and that's the way it has been for 50+ years. As you can see, I did respond the same day back in March. I usually remember when I hear from someone down the road, that I know, or spoke to or emailed them. It is hard sometimes, and always surprises me when I have an AVM moment that involves memory. I have 5 siblings, all of us aging. They say (when we see each other and that's not much anymore) that I have the best memory of all of us. They will ask me about this Aunt or that Great Uncle or the house we grew up in. I do have vivid memories from pre AVM surgery. Memories of the whole deal are also very clear. Teenage years I just want to forget, so I do. Married life (12 years when Norm was well and 10 when he was sick) are clear until after he became ill. Now 20 years after he died, my memory sucks for short term things. Maybe it always did, but I doubt it because I worked as a paralegal at the State Justice Dept. for years. Don't think I could have done as well as I did with memory problems. Even this conversation I am starting sort of rambles, and really what I wanted to tell you just came back to me. I will snd you a message.
I don’t want to scare you. Please remember everyone is different and Gamma Knife has come a long way since my daughter had hers done. That being said, approximately 6 months following her procedure Rachel began to lose her coordination. She actually got to the point where she appeared to be highly intoxicated. A couple of times she simpoly fell to the floor. Over a period of 10 days to 2 weeks her weight increased by 20 lbs. or so (you could really see it in her face). She developed a severe tremor in her right arm which remains to this day. She began to slur her words and started having difficulty processing information. In other words she knew what she wanted to impart but she simply couldn’t find the words she needed. My husband and I were terrified because we thought she had suffered another bleed and the first one had been massive. When we got her to the hospital the MRI showed massive brain edema due to the radiation. She was treated with extremely high doses of IV steroids, which in turn adversely affected her pancreas, resulting in diabetes. Following treatment she was rendered functionally blind for a year and a half because the muscles that operate her eyelids and eyeballs were destroyed. She had to have three surgeries in order to regain the use of her eyes. She lives with a permanent limp on the right, a severe right arm tremor and continued brain processing difficulties. She is the most beautiful and brave person I know! Please be aware that this didn’t happen because of the Gamma Knife per se. It happened because the procedure was not developed with pediatric patients in mind and she was over radiated. They tried to do too much at once. My best advice to you is to not be afraid to force your doctors to listen if you experience symptoms that concern you. You know your body better than they do! When Rachel first started having the symptoms I kept calling her surgeon and he kept downplaying what I was telling him. We finally took it upon ourselves to take her to the emergency room. Its a good thing we did or we might have lost her to the “cure” for her AVM. How ironic would that have been? I wish you the best of luck and health.