I’ve finally spoken to a doctor. She’s a radiology oncologist, who recommended I see a neurosurgeon in Oklahoma City. Apparently, he writes papers over AVMs, and they’re his focus on interest, so she seems to think I’ll be in better hands with him. Hopefully, I’ll be scheduling an appointment with him on Tuesday, so radiation here I come! They are going to try gamma knife first, I think. The first appointment with him will only be for a consultation, and possibly to set up a treatment plan, but I’m not really sure. Essentially, I’ll be driving for four hours (there and back), to spend an hour and a half with the man. Which, I suppose is better than having to go out of state. I’m really glad that I’m finally getting somewhere, but it seems like this just brings on a whole new set of worries. If anyone could tell me the side effects of gamma knife surgery, that would be great. I asked the doctor I saw the other day, but she seemed more inclined to let the neurosurgeon explain it all to me. The only things I’ve really heard are that I may lose a little hair, and I “may or may not get sick”. At least something is going to be done, though:) I’m trying my hardest to stay positive, and it really does help, but it’s been a strange week as far a symptoms go. I’ve been extremely tired and head-achey. That may just be from stress. But, I’ve also been having some vision issues and some major pressure. So, there it is. I’ve finally gotten past the financial couseling nightmare and I’m (hopefully) on my way to treatment!

so happy to hear you are finally getting somewhere…as far as gamma side effects i cant help you out there…but there are plenty here that will …there are quite a few discussions on gamma effects in the forum that are very interesting and well worth a look …best of luck and stay positive girl…i know you are going to beat this…please keep in touch and let me know how you meeting goes…you are in my prayers sending you lots of positive energy alicia xxx

Cassie- Glad things are moving along for you! Can’t help with the Gamma info either, but don’t worry about the hair loss…it grows back! Is someone going on the “road trip” with you??? Maybe you can at least make a fun trip out of it. Lots of candy and an obnoxious “mix tape” to sing along to???
Definately search the forum as Gamma has been discussed tons of times. Prepare for your meeting with the Neuro and have a list of questions to ask him. Might as well get the most bang for your buck out of this consult!

Hi Cassie…I am not 100% sure if gamma knife is the same as cyber-knife, but that is what my daughter had done. She had 4 fractions(treatments) and her symptoms were…hair loss(more than they told her, that was the most devastating for Ashley as she was 19 at the time) it did grow back, fatigue and nausea. She did end up developing type 1 diabetes(they think it is from the steroids they gave her during her treatments) but otherwise no symptoms. But on the other hand, we only found the AVM by chance as Ashley never had any symptoms so I don’t know if I am much help, but that is what I know. Best of luck to you and enjoy your road trip!!! Denise