Hello everyone! I am so glad to find this support community.
Back in January 2009 around the time of my birthday, I had the worst flu
(so I thought) of my life. Turns out it was a cerebral cavernous malformation. I didn’t go to the doctor for three weeks thinking I
would get better but I didn’t. Back then I was an anti-med/doctor/let your body heal by itself type of person. But my roommate at the time forced me to go to my primary physician which in turn advised me to go get an MRI scan. That same day got a call from my primary physician who sent me straight to ER after receiving the images. Apparently the bleeding was a size of a grapefruit. I was admitted immediately and had cranial surgery the next morning. My neurologist stated I almost died. Lucky for me I was young and healthy (otherwise) and had the luxury of living close to Cedar Sinai Medical as they are renown for their neurology department that I was able to come to full recovery in two months. And most importantly my family and friends that overwhelmed me with love and care =)
It’s been a year and a half since then but behold they discovered a cerebral AVM two weeks ago. I started experiencing loss of appetite and sporadic dizziness followed after which made me paranoid enough to request for an MRI. It’s odd… Last year I felt nothing in terms of emotions going into the surgery but right now I am emotionally unstable for some reason. Perhaps because I have experienced it once before? My neurologist told me I will be going under the Gamma Knife this time as the AVM is on the smaller side and it hasn’t ruptured. He also mentioned that the success rate is 80% and a 4% chance of bleeding in a year. Additionally it is somewhat near the speech region of the brain - also a 4% chance that I will have speech difficulties? All of these statistics and percentages are giving me a headache! I’m trying to stay strong and positive but honestly reading this forum has scared the living crap out of me with all the side effects the survivors have gone through.
Any words of advice or support will be greatly appreciated =)
I understand completely how u feel, Diana, but u need to be strong and trust what ur dr. has advised for u. Is this the same dr. u had b4? Bc it sounds like you had a good one and ur fortunate to live near a very good hospital. My neurosurgeon recommended no sx @ this time b/c of the size and place. Like u I was completely freaked out by the horror stories of side effects, but i believe they have come a long way in research on AVM’s.
I pray that everything goes well. Good luck and PLEASE keep us posted. This site has helped me emotionally very, very much. Just to have others that even have the same thing that u do helps. I get so tired of trying to explain to people; the seizures, the balance issues, nausea. It’s frustrating, but i can get on here and just vent…and feel free to do so, we do understand.
Lots of luck! Let me know if i can help or just listen!
Jackie Hargrove
Hi, Diana. It sounds like you have been thru alot and now more to come. My son had Gamma 2 years ago. Yes, he did have side effects but they were all managable and he was in univsersity last year and is working full time now. We know that the GAmma is working really well on his AVM. It’s not the perfect story but it is a positive one and AVM’s are never simple.
Also every single person has a different experience with Gamma and their AVM so you need to remember that when you read all these stories. If you have a good doctor in a hospital where they have treated lots of AVM’s then you should be reassured by that.
I think your emotional state is pretty normal- This is HUGELY stressful!!! Give yourself a break and some time to get used to all this information. So glad you have good family and friend support. Sometimes that’s the only thing that helps. THinking of you.
Hi Diana,
I don’t know if this is reassuring or not, but I just wanted to let you know that you are not alone when it comes to feeling more panicked at the second surgery than at the first.
That being said, while I have only had one craniotomy (well, two, but they were within a few hours of each other and I can’t even distinguish between the two) I have had three angiograms, all of which were prior to my surgery. Oddly enough, I became more comfortable with each of these as time went by. By contrast, I had perhaps a dozen MRIs prior to my surgery, none of which left me the least bit concerned or uncomfortable about being in the MRI machine for an hour or more at a time. However, following my surgery, I started having claustrophobic feelings when I got MRIs.
The same can be said about dental work. While I have never exactly been a fan of having dental work, I was able to have standard cleanings and fillings done without a problem (aside from maybe a little gag reflex), but much like with my MRIs, my reaction to dental work after my surgery is much different. I get incredibly uncomfortable and borderline panicked.
The logical side of me knows that I have been through more MRIs and CTs than I can count and I have made it through each one of them without a problem. I have had many trips to the dentist and again, no problems. Heck, I’ve even had multiple angiograms and have had surgery to have a big chunk of my brain removed and I made it through that. So what is sparking my fear of being in an MRI machine or having a dentist work on my teeth? Fact of the matter is, all of the medical stuff has been quite stressful and emotional, and emotions are often stronger than logic. This doesn’t make you a weak person, it just means that you may need to work harder to control the emotional side of your mind in situations like this.
I wish you the best!
Diana it is normal to be scared I am anxious each time but I would go back and do it all again even with the side effects I’ve had and I have more to come. It sounds like you have a wonderful doctor and a very experienced facility to take care of you. Each of us handles it in different ways but I can only tell you how I handle it. I believe in positive thinking and keeping myself strong. I even talk to myself when I think the negative I ask myself well Lee Ann what is the positive of it and concentrate on that. Sometimes I even write down the pro and cons and the pros always win out. I have had my bad times emotionally don’t get me wrong and that is perfectly normal. Sometimes you have to release it and that is what this site is for. We are here to help and give support when you need it. Stay strong and all my best to you.
Thanks everyone. I really appreciate it. Apparently after taking other tests, they found a cavernoma on top of the AVM. My surgery date is next Wednesday… my Gamma Knife procedure will be deferred until after the anticipated swelling goes down.
Continuing to think good thoughts…