I feel that I should tell my story in case there is somebody with a similar case. First of all, I had NEVER heard of an AVM, but had heard of an aneurysm because of a friend dying from one. I was rushed on January 16th to ER where they found a brain bleed and air lifted me to Mercy Hospital in OKC. They did an arteriogram where they found both an aneurysm and an AVM. (they did not know which bled, but thoght it was probably the aneurysm)... Both were small, and I was extremely sick, but had not suffered a stroke or any problems with my brain......yet. I was stabilized while they got together to figure out my way to recovery. An arteriogram operation was set for Monday, January 19, to coil the aneurysm......but the neurosurgeon was on call to clip it if it could not be coiled. (it was extremely hard to reach because it was in the cerebellum and very small. There were also curvy blood vessels to go through to get there). Dr. Tytle was able to coil it and I was sent back to ICU to recover. However, I managed to get double pneumonia and became very sick. My neurosurgeon came in and said there would have to be something done with the AVM, but I had to get better first. So, I recovered, went back to see the doc and he gave me a choice of having the gamma knife done, or having a craniotomy. I really didn't like either thing and was feeling great at that time....(why do I need to have anything done??) It did not feel like I needed brain surgery. I even wrote the institute in Arizona and got a 2nd opinion. They also suggested surgery. I decided I had to get it done. I had so many emotions because of all the risks, and I had just gotten out of the hospital. I went in on Monday, April 20th for my craniotomy. My doctor, Benjamin White, was awesome! He actually sees many of these, which just blows my mind. I was in surgery 4 hours and they woke me up. He said he was confident they got it all, but I had an arteriogram done later that day. It was confirmed that the AVM was obliterated!!! He did tell me that it bled a lot during surgery (because the AVMs do that.....600ml!!!) However, it is gone forever!! I am already home and recovering. I know I am a miracle. I am so fortunate that I did not have a stroke or paralysis from my first bleed. Thank you Jesus!
I hope this helps somebody else make a decision on whether or not to have an AVM removed. Keeping one in your brain is NOT a good decision...
Lynda
Lynda
How wonderful. So glad they found it and got rid of it!
Thank you for sharing your story its always great to hear a good success story-
Angela
Lynda, thank you very much for posting this. You have no idea how much this speaks to me. Today, especially! I was diagnosed with an AVM in February, following a seizure and subsequent MRI scan. I had an angiogram 2 weeks ago. My neurosurgeon, who I saw today, gave me the option of surgery or radiotherapy. I’m seeing the radiotherapist tomorrow. I’m leaning towards surgery, even though my neurosurgeon scared me today, with the risks associated with it, e.g. Haemorrhage, stroke and (almost definitely) visual field loss. So, hearing your success story today has given me hope! Thank you!
X Kate
Hi Lynda, Thanks for this posting and I see you have boosted Angela, Kate, and me! I wish you a great recovery!
Lynda...Thank Goodness....You are AVM Free! Congratulations!
Hi Lynda
Your post really spoke to me too. Two sentences stood out. "I really didn't feel like I needed brain surgery and "Keeping one in your brain is not a good decision. I have been tooing and froing for 2 months now and am nearly ready to commit to surgery. Its so easy to live your life, go to work and put it on the back burner. You have to shake yourself out of your false sense of security. Thank you for writing this, it has helped me more than you know.
Hi Lynda,
Thank you for sharing your story. Best wishes for a speedy recovery!