I was just wondering if anyone had has experience with this surgery and what they can tell me about the recovery and and anything else. Would be much appriectiated.
I am interested too, since my AVM is in my right lobe as well. I had proton beam radiation three years ago, but there hasn’t been any change in the size so far. The severity of the symptoms keeps increasing,so I maybe looking into having a crainiotomy next year.
I’ll be praying for you, Blake. I hope that all goes well on the 20th. Please have some let us know how you how you are diong, okay?
Your fellow AVM Warrior, Connie
Thank you connie, I hope to have more information soon, Thanks for your support. I decided to get the crainitomy to get it over with and as i am telling him this he tells me that he found 2 more, so it seems to be a life long struggle no matter what. take care warrior
Hi Blake! My AVM is in my left pareital lobe and because it’s in the area that controls my right hand they advised trying gamma knife first. I had GK in May '08 and there has been some shrinkage so we’ll see what happens over the next several years.
You will be in my thoughts and prayers and I wish you a speedy recovery. Hopefully you have a family member or friend that will join the group so that we can stay updated on your progress!
Christine
Hi Christine, thanks for the well wishes I will get someone to update my progress for you thanks for prayers. I am glad to hear yours has shrunk and hope it stays stable. take care
Blake
Hi Blake, I hope all goes well with your surgery. I had surgery (craniotomy) in 98 on the right side near my eye and ear canal. I can’t think of the medical term right now. I had the 2 large aneurysms clipped, but now I have 2 very small avms at the base of my brain stem, which the doctors told me about sometime after surgery. I’ve suffered a lot of anguish and pain since the surgery, but I’m very glad to be here. I personally don’t ever want to go through the process of the surgery again, but if I really have to I will. I will opt for the radiation 1st though. I personally would advise anyone to have the gamma, or the coils, before allowing anyone inside your brain, but sometimes it maybe the best thing to do depending on the sitution of the avm. It’s been 11 years since my surgery and I’m still suffering. Physically I look okay to the normal person, but mentally I’m just a mess. I still have short term memory problems, headaches, vertigo, anxiety issues, vision problems, and somethings that I just prefer not to talk about right now. Blake just listen to your body and get all the info you can, so that you’ll make the best choice for you. Make sure you have some therapy after surgery so you’ll know what to expect. I didn’t have therapy and maybe that’s why it took me so long to heal physically. Here’s an old saying that I came up with while I was recovering from surgery years ago, “yesterday is gone, do what I can for today, hope and pray for a better tomorrow”. I came to that conclusion about 5 years after my surgery. Good luck!
Thank you for the straight forward info, its hard to get that, even from the doctor he makes it sound so easy and from what I have learned it is not going to be easy,I am sorry you are still having problems, I wish you well and better improvement I be thinking of you, take care and thanks for the info. take care
I had a craniotomy of right parietal/occipital lobe in May of 2008. I had a rather large AVM that was undiagnosed until it ruptured and nearly cost me my life. Recovery from the surgery itself went very well for me. I did develop meningitis as a result of the surgery, which I understand is common for this surgery. I was on heavy dose of an IV antibiotic twice a day for 21 days. I also had monster headaches for several weeks after the surgery that required some serious medication to alleviate. The biggest challenge for me was the complete loss of muscle I encountered after being in a coma (partially medically induced until my surgery) and in ICU for 3 weeks. I was too weak even to lift my head. I spent a month in a rehabilitation unit in my hospital, working on regaining strength, walking, feeding myself, etc. I have lost most of the vision in my left eye as a result of the hemorrhage but I also have a host of cognitive disabilities and memory issues as well. If it weren’t for the surgery, I’m quite certain I would not have survived. I feel incredibly lucky to be here and still be able to function and be a mother and wife again. I didn’t have the option to choose the surgery once my AVM ruptured, and I was incapcitated. My husband made the decision to have the craniotomy after all of the life-saving procedures were through and based on all of the information I have received from my neurosurgeon and other doctors, I believe it was the best decision. If I had learned of the AVM prior to the rupture and had the option to either have the surgery or not, I believe I would have chosen the surgery as I would have liked to save myself from the consequences of having had the hemorrhage. All of that being said, I wish you the absolute best of luck with your surgery, Blake. I really hope some of what I’ve said was helpful and not too rambling (that’s one of the many fun neurological defects I still have). I will be thinking of you and please let everyone know how you are doing. Another fellow AVM survivor, Trish.
Thanks trish, so sorry it was rough for you but willl be thinking of you, I will let you know how im doing as soon as i can thanks
Blake
Trish said:
I had a craniotomy of right parietal/occipital lobe in May of 2008. I had a rather large AVM that was undiagnosed until it ruptured and nearly cost me my life. Recovery from the surgery itself went very well for me. I did develop meningitis as a result of the surgery, which I understand is common for this surgery. I was on heavy dose of an IV antibiotic twice a day for 21 days. I also had monster headaches for several weeks after the surgery that required some serious medication to alleviate. The biggest challenge for me was the complete loss of muscle I encountered after being in a coma (partially medically induced until my surgery) and in ICU for 3 weeks. I was too weak even to lift my head. I spent a month in a rehabilitation unit in my hospital, working on regaining strength, walking, feeding myself, etc. I have lost most of the vision in my left eye as a result of the hemorrhage but I also have a host of cognitive disabilities and memory issues as well. If it weren’t for the surgery, I’m quite certain I would not have survived. I feel incredibly lucky to be here and still be able to function and be a mother and wife again. I didn’t have the option to choose the surgery once my AVM ruptured, and I was incapcitated. My husband made the decision to have the craniotomy after all of the life-saving procedures were through and based on all of the information I have received from my neurosurgeon and other doctors, I believe it was the best decision. If I had learned of the AVM prior to the rupture and had the option to either have the surgery or not, I believe I would have chosen the surgery as I would have liked to save myself from the consequences of having had the hemorrhage. All of that being said, I wish you the absolute best of luck with your surgery, Blake. I really hope some of what I’ve said was helpful and not too rambling (that’s one of the many fun neurological defects I still have). I will be thinking of you and please let everyone know how you are doing. Another fellow AVM survivor, Trish.