I am by nature a glass-half-full kind of person and for most of my life have been very healthy so I am trying to keep a positive outlook as I adjust to health issues. So far no tears, just lots and lots of questions. Who knew that the whooshing, chirping sounds I began to hear in June would take me down such an interesting, scary, but interesting road and I'd be having to make a decision about getting my head zapped with radiation. Hearing some of the other stories people have shared, including yourself, reminds me that there are so many things for which I am thankful. Thanks for the encouragement.
I've also been presented with the option of waiting to see what happens. My family and I aren't big fans of doing nothing and having the possibility of a bleed hanging over my head for the rest of my life. Like you, I'd like to get my questions answered, make a decision and then move on and not look back. All of the information I have gathered from articles I've read this weekend and the feedback my family has provided is helping to inform my decision. Thank you for adding to the information pool. Your perspective on attitude and decision making has been valuable.
Hi Gypsy,
It is normal to worry about procedures like this. I had the treatment about a year ago and got a leaflet beforehand explaing what is done. My AVM is in the middle of a brain area that deals with motor control on the left leg and arm so I was also worried about loss of use or other things. The leaflet said that in a "few" cases there was some deficit. Personally I had no side effects at all. In fact since the treatment most of the "weird" feeling in my leg have now gone away. From what I was told by the neurosurgeon it is a very slow process, so hopefully synptoms in your case should lessen gradually. Doctors have to cover their arses on everything these days. Maybe you had to sign something for tha angiogram you had? Same thing really.
The bottom line is that it is worth doing. Way better than leaving things and running much worse risks of the kind your surgeon already mentioned. It only feels scary because it is out of your hands but the people doing the work know what they are doing and there are checks and double-checks. Bit like getting into a plane and letting the pilots get things right.
The procedure isn't so bad - the worst part for me was the angiogram but you now know what that is like.
Hope it goes alright for you. Try not to worry.
Hello! I had Gamma Knife at Mayo Clinic in 2010. I had an AVM in my occipital lobe and the doctors here in my hometown wanted to do Onyx and/or surgery. I am so glad that we went to Mayo for another opinion! The team up there is the best! The procedure is really not that bad, and I agree with the comment below that the angiogram is the most uncomfortable part. I did not have any trouble during recovery. I did have more (and more severe) headaches in the year following the procedure. I also had some slight visual trouble--maybe because my occipital lobe was involved. I currently do not have any visual problems or headaches and my AVM is no longer showing up on my yearly MRI scan. I would not hesitate to trust the doctors at Mayo again. Best wishes!
Hi Gypsy;
I had radiosurgery 24 years ago. I experienced no short term side effects but recently had to have brain surgery to repair a spinal fluid leak that may have been caused by the effects of radiation on the inner fossa bone above the ear canal. All in all a good trade-off as I would have not had the past 24 years and future years had I not had my avm treated.
Chrisf, thank you so much for sharing you experience and advice. Much of what I am feeling is the result of trying to align my emotions with my intellect. As you said, this is scary, in part because it is out of my control, but also because I have such limited background knowledge. The more I learn from all of you, the booklet I received from Mayo about the procedure, and articles on my condition and treatment the more able I am to process everything without the freak-out reaction overwhelming me. Your post provided me with a very logical way to analyze the situation. Thank you.
Best of wishes to you as you continue your healing.
Rebecca, thank you for sharing your experience with me. It was interesting to find out that side effects that present right after the procedure may be temporary. Congratulations on your outcome. Wondering if you are willing to share who your neurosurgeon was? Mine is Dr. Michael Link.
Best wishes to you as you move forward without your AVM.
Steve, thank you for sharing your experience and congratulations on your long-term recovery. I hope that you are having equally positive results from the recent repair work. I look forward to the time when I can say that the DAVF is gone and I no longer have to worry about the possibility of a hemorrhage.
Hi,I had radiosurgery for an avm bleed back in 1995. I had no side effects after the procedure Went back to work 3 weeks later. The procedure wasn't pleasant but obviously a lot shorter recovery time than surgery.wish you all the best.xx
Tracy, thank you so much for your response. I have not had a bleed and the doctors feel that there is only a slight chance for developing one, so I have decided to put off Radiosurgery for a while. We'll see how well I do with the uncertainty factor. Thank you for the support.