Hello there my name is Joaquin and was diagnosed with an AVM on my right side Occipital lobe, I start my first embolization on September 3rd, I have read a lot about AVM's on this site and it has help me stay strong and confident, I would like to get to know some one that has had embolization's and surgery and know about their outcome, I am still debating on having surgery or treat my AVM utilizing Gamaknife instead,
I have four beautiful kids 3 girls and one handsome boy,
I want to treat this because I know this is a clock ticking in my head that I need to keep running to se my kids grow, graduate and get to know my grandkids in the upcoming future,
Thank you s much for the support to all
The best way to decide between the "big three" options is to get several opinions from top neurosurgeons, Joaquin. We have a radiosurgery/gamma group where you can learn more about the possible effects of gamma -- you can click on "Groups" at the top of the page to find it. Typing "embolization" or "craniotomy" in the search box will give you more stories than you can count. I would suggest, however, that you start by typing "occipital" in the search box, as those stories may give you the closest indication of what to expect. If you like, you may even start an Occipital Lobes group yourself by clicking the "+" button on the Groups page and following the instructions. Then you can open a discussion there and get feedback.
Hi Joaquin and welcome to the group. My AVM was in my right occiptal and parietal lobes. I didn't know I had it and unfortunately had a very serious bleed. My surgeon believes that had we known about the AVM before the bleed that he could have removed it successfully without causing much damage. After my bleed I had a series of embolizations and finally a craniotomy to remove the entire AVM. The defecits that I have are a result of the bleed and not the surgery. Of course, every AVM is different and what works for one may not be what's best for others. Like dancermom said, seek out additional opinions.
I had one embolization and then the surgery. It was not half as horrible as I thought it would be. Actually, I would rather have five craniotomies than 1 hemorrhage hands down. It was frustrating because I ended up half bald rather than having one little patch of hair gone like the nurse said would be the case. People stared a lot and some asked questions and pretty much everyone thought I had cancer until I stopped covering my head. No lie, the surgery takes a lot out of you and it takes a long while to get back on track with everything BUT I am SO SO SO GLAD I did it. My AVM is 100% gone. In one surgery Dr. Singer made sure that I will never have to relive the kind of nightmare a hemorrage and recovery is. It's a little painful and there are some whacky side-effects you should read up on if you have not already, although your DR will give you a run down of those I am sure. I experienced some tics with my vision mostly. Little neurological things here and there. For a while my eyes would start jumping around when I tried to focus them, like they were moving very swiftly side to side. Just know that the side effects, at least in my experience, do get better after the surgery. It may be slow going but it is like with anything else, as you get back to doing the things you have always done things start coming back to you. I have no experience with the Gammaknife treatment so I am definitely not able to give you a comparison, but I have no regrets from the surgery. I have a nasty scar in the shape of a horseshoe that takes up about half my head but after a while your hair comes back in and other than having a weird little part in one spot no one even knows it. Like with Trish, the majority of the issues that I experienced were caused by the fact that I had an actual bleed. I won't say the surgery did not cause a few issues here and there because it did, most noticably pain at the surgery site every now and again, but after two years or so most of the issues are not even noticable unless you were someone who knew me well before hand. Good luck whichever route you decide to take.
thanks to all of you for your support and experience comments, I had my second embolization so far, the second one went a lot easier than the first one back in September, since I had a small bleed after my first embolization keeping me at ICU for seven days and really bad headaches and nightmares, the second embolization was a lot better and ending back at home the next day!! I have my third and final embolization scheduled for the beginning of January and craniotomy the following day, the day is getting closer and a little nervous about it all. I have to keep strong and have faith in our father God. my AVM is 75% sealed and have small head aches every now and then.
again thanks a lot for you support and comments. God bless you all and good luck.