I was diagnosed last June, and underwent 2 embolizations in Oct and Nov 2010.
I am having problems with my speech, seems I’m out of it quite a bit, spelling and computer skills are bad, and slow, I can't remember the words that I am trying to say. I lost a lot of my hair (back and left mostly, some on the right side), and I didn't know I would loose any. My right ear still hurts, and there is severe ringing. I have a severe metallic taste in my mouth. I fall daily or almost fall, continually. l am anxious and a bit upset ALL the time.
I am scheduled for my Gamma Knife on 16 March, but am so worried about WHAT ELSE might happen, I'm thinking about canceling it. I'm 58, and just don't want to have to deal with more than I am now. Please, let me know your thoughts.
Pam, I have two questions, if you don’t mind. Is gamma knife the only option you have? Could the problems that you are having be a temporary side effect from the embolizations?
Unfortunately, there seems to be no right or wrong answer when it comes to AVM treatment. The treatment option is up to you. Regardless of what you decide to do…you will be in my prayers.
Thank you, Barbara.
Ben,at this point that's all that's left. I am sure the problems are from the past embolizations, I just thought they'd be getting better by now.
The reason I asked you about the possibility of side effects. Is because it takes a lot longer for our brain to heal. Depending on what has been done/occured to it, of course. I had a friend who had brain surgery once for a cyst. She gradualy got better as time progressed but, it took her almost ten months to year to completly heal from it. I wouldn't give up hope quite yet. :)
Gamma Knife - I agree with what Barb said. I wish there was an easy answer but, everyones 'case' is different in one way or another. It's a tough desicion to make. The best advice I can share with you is..Do your research, ask your doctor as many questions you can think of, and weigh the pro's and con's of having it or not having it done. And say a lot of prayers. :) Often times, Our fears are our worst enemy. The question is: "Are they legitimate fears or not?" Sorry I couldn't be of more help. :(
Believe me,..I know where you are comming from.
As we are all individuals our AVM's are individual to ourselves, (ie) each one is different and so are our AVM's. (location, depth, size, etc,..etc.)
As it stands right now, I have chosen to do nothing (no procedure at all) and monitor my AVM via twice yearly MRI's.
(please visit my "My Page/blog" for more details)
Pamela,..you have my most sincere empathic thoughts and my best wishes for your decision.
Thanks, William, I appreciate your thoughts…
Hi Pamela, Happy Belated Birthday:) I completely understand where u are coming from… I too, am in a similar situation. After my 4 embo’s fortunately my symptoms were relieved, however I am know that my avm is still with me. I declined the proposed 8-10 Cyberknife treatments b/c the radiation oncologist flat out TOLD me…“Greg, I’m afraid I’ll hurt you.” In doing my research and from what my neuro team told me, Gamma was not an option b/c of the size of my avm(my understanding is anything >3cm gamma not effective). Multiple Cyberknife treatments were the only option to POTENTIALLY* rid me on my avm. Now, had my symptoms not improved or become worse following my embo’s, or if there was a previous rupture, I would definitely consider the radiation treatment. Because my symptoms are gone and my avm is aneurysm free, I choose to live with it. I am a true believer in “quality of life rather than quantity of life”. Finally, just b/c one team of neurosurgeons couldn’t help u, doesn’t mean another can’t. Research other facilities across the country if u can. I hear Stanford is very good, as well as I was pleased with the Drs here in Dallas at UTSW. Stay positive, exhaust all ur resources to determine the best treatment if any? Many people long before u and I have lived well into their golden years WITH an avm! Just my humble opinion, thoughts and prayers are with u. -GK
First, thank you for the birthday wishes.
Next,"quality of life rather than quantity of life,"is pretty much my new motto. My neurosurgeon, who is a great neurosurgeon, told me last week UMD has a program where you head isn't screws into a head thingy. I want all the symptoms/residuals to go away before I do anything else. Thank you for your kind words.
I have hunted for information about the history of AVMs, and found it on the web at: http://brain.oxfordjournals.org/content/124/10/1900.full
Since their first clear description over a century ago (Steinheil, 1895), arteriovenous malformations (AVMs) of the brain have been increasingly recognized as an important cause of death and long-term morbidity, mostly due to intracranial haemorrhage and epilepsy. Technological advances in imaging the vasculature of the brain and the widening availability of CT, MRI and intra-arterial digital subtraction angiography (IADSA) have augmented the rate of detection of AVMs (Brown et al., 1996a), to the extent that they now pose a regular management problem. There is a growing interest in the frequency and clinical course of AVMs, although the pace of development of endovascular, surgical and radiation therapies seems to have overtaken the impetus to study their clinical course (Sellar, 2000). The prognosis for any individual remains uncertain, as do the risks and benefits of the available treatments, leading to variation in practice and disagreement
Pamela, sounds like u are describing Cyberknife with the screwless head frame. Check out Keith S’s profile, as he has good pictures from his multiple Cyberknife procedures:) -GK