This is my first post, so I am a little nervous, but so happy to finally feel like I am among people that understand how I feel and what I am going through.
I have been fighting my AVM for 6 years. Surgery is not an option due to location. It is right between my vision and speech and doctors have said that I would either die or be blind if they tried surgery.
So, 12 angiograms, 4 embollizations, and now on my 2nd attempt at the Gamma Knife, I am still fighting this battle. The embollizations have also caused me to have visual seizures, so I will now be on seizure medication for the rest of my life.
On June 15th, I head to UVA Hospital for my second Gamma Knife treatment. My doctor is Dr. Steiner who helped create/invent the Gamme Knife machine. He is amazing. He is no longer at UVA and is now in Germany, but I am now with his counter parts and in good hands.
Getting nervous. I feel that the worst parts of the Gamma Knife are the halo and afterward, I lose my hair. They say it's because my AVM is so close to my skull. Does anyone else lose their hair?
Also, I am doing this second treatment because one of my first embollized parts of my AVM has opened up and started allowing blood to flow again. They said this was so rare and almost un-heard of. Has this happened to anyone else? I know that the embollization process is rather new and this is bound to happen eventually to someone, but just wondering if there is anyone out there.
I havent' had embolization. I just had my 3rd Gamma Knife treatment last week.
Last summer, I had my first GK for the AVM, then had a craniotomy for aneurysms. I did end up losing a patch of hair in the fall. My hair dresser told me that anesthesia can cause hair loss, so I don't know if it was from the GK or from the crani. I had my second GK just before Christmas, and haven't noticed any hair loss since then.
I agree that the halo has been the worst part of GK for me.
I am already starting to show results from the first & second GK. The doctors let me see my MRI scans from June 2011 next to the scans from that morning. It was very cool to see that the AVM is already shrinking.
Oh wow! You sure have been through a lot! I have also heard that anesthesia can cause hair loss. Where is your AVM if you don't mind me asking and how close to the outside of your head is it?
I was told from the doctors that it is so close to the outside of my skull that the radiation is actually leaking out and causing my hair to fall out. I lost a lot of hair and had a huge bald spot. As a woman, it was very embarassing. And scary to be in the shower and all of a sudden all this hair was falling off my head.
That is great news that you are getting results so fast!! Congrats!! My AVM didn't show results, the first time, until almost 3 years after the radiation. Strange how different people react.
My AVM is in the right parietal lobe. I'm not sure how close to the skull it is. It was 6 cm before treatment began. It is in eloquent tissue. If I'd had surgery to try to remove it before shrinking it with GK, I'd probably have lost my left field of vision & possibly have some motor deficits.
I had asked about hair loss prior to GK, and had been assured I wouldn't lose any. I knew they would have to shave part of it for the crani. I wasn't prepared for the section adjacent to shaved area to start falling out--and when waist length hair starts falling out, there is a LOT of it!
I ended up having it cut into a chin-length bob with a side part to cover the odd lengths fromshaving & the thin spot. Luckily, my hair grows quickly. The strip above my ear that was shaved last July is nearly to my chin. The chin length haircut (major cut in October & trimmed in December) is almost shoulder length.
I'm a teacher. I had started the new school year in August wearing scarves daily to cover my scar & weird hair. School staff who didn't know me well & all of the new kids just thought it was a fashion statement. :)
It is quite amazing to hear others stories. Your AVM was twice the size of mine. And just amazing that you were able to have surgery afterward. I wish that was an option for me. I just want to get rid of this thing.
Thanks for sharing your story with me. Must have been hard to cut your hair. I would have just cried. Losing it was hard enough. I love the fashion statement part!!
So even after surgery, you are still having to do GK treatments? Why is that?
The crani didn't touch the AVM. I had developed 2 aneurysms & the surgery was to clip them.
The first aneurysm was found in the scans they did for the first GK. The second aneurysm was found when they opened me up to clip the first one. The surprise 2nd one was in danger of rupturing, so I'm very glad they found it & were able to clip it.
Regarding the hair--I cried more about it falling out than cutting it. If I had known it was going to fall out, I'd have cut it before GK & surgery so that I'd have had more to donate. I had previously donated my hair to Locks of Love twice before.
I had 2 Gamma Knife sessions last year (June and September) and honestly I did not experience that many symptoms. My hair fell out but not in large patches or anything. If one did not see all the hair in my clothes one would never guess that my hair was falling from looking at my head (no bald patch). I did get a feeling like a worm inside my head at the location of the AVM afterwards for a couple of months though. It was not painful, just weird. We think it was the AVM shrinking. Ive seen other persons describe the same sensation. Definetly, for me at least, it was a really painless, simple procedure and I wish I had had it before my AVM bled!