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AVM Survivors Network

Story with a Happy Ending

#1

Hi! I’m a 66 yr. old female and thought I was in good health until I recently found out I had a tentorial dural AV fistula, Borden Type III which was confirmed on Nov. 11th with a brain angiogram by Dr. Dion of Emory Hospital in Atlanta. This diagnosis was obviously not good and extremely scary to me. Dr. Dion is part of the Neurology team of specialists and is an interventional neuroradiologist and neurosurgeon doing these surgeries for 30 yrs. He had discussed with me that after the angiogram he would proceed with an embolization procedure to close off the fistula if it looked possible. Very fortunate for me is this was caught early so I had no bleeding but the location was not good (in the fold area above the cerebellum) so he wasn’t sure if he would be able to proceed and fully close it; if not, I would need surgery to finish. I felt comfortable I was in the best hands possible and trusted him completely. Fortunately, he was able to do the embolization procedure using coils. When I saw him in recovery he didn’t just tell me it was successful, he told me I was cured! I felt as if angel had visited me when I heard those words and know I must be one of the luckiest people on the planet. I write this with hesitation as I have somewhat of a survivor’s syndrome, as why me when there are so many others out there like many of you who I know are suffering greatly. I will never have the answer to that question but I do feel blessed and hope and pray that any of you who read this will have faith and try and stay positive as best you can and hopefully you will also be as lucky and fortunate as I am. If you have questions for me I will be more than happy to try and answer.

#2

I too have a happy ending to a successful embolization of a Cognard grade 111 DAVF fistula in my cerebellum which was very difficult to reach and seal off. I was in surgery for 6 hours. I was in ICU overnight and the next morning a CAT scan showed it was sealed off. My wonderful primary physician found the fistula in a routine MRI with contrast and referred me to the Barrows institute in Phoenix AZ. I was in the hands of Dr. Cameron McDougal and his excellent staff. They did the embolization with onyx and after 6 hours of surgery and a night in ICU they did a CAT scan 8 hours after the surgery and gave me the wonderful news that it was completely sealed. I am a 68 year old woman with no other health problems and looking forward to a long happy life thanks to the wonderful care I got from the Barrows institute, Dr. McDougall and his staff and the St. Joseph hospital and staff in Phoenix. Thanks to my primary physician Dr. Tyler Haberle for finding it before I had a bleed or hemorrhagic stroke. I feel I had a lot of angels looking out for me in the form of the wonderful doctors who I know have a talent that God gave them and an angel on their shoulder. I am going to Barrows Dec 3rd for a follow up angiogram and will share the results with this group. Thanks to everyone in this group that responded to all my questions. It is great to share experiences with others going through something this rare. I had no symptoms so if not for the brilliant Doctors I could have had a different outcome. Cath, how did you find out about your fistula? Did you have symptoms? tazgran (Rexina Fuqua}

#3

#4

So happy to hear of your success too; so thankful for the wonderful and talented doctors that treat us. I too, will go back for follow ups, the 1st in 4-6 wks. On a routine physical back in Aug. I was complaining to my dr. about really raunchy headaches. He wanted me to have an MRI/MRA and the fistula showed up. Next test was a CT angiogram which gave better pictures...then on to a neurosurgeon who told me I was his 3rd patient with this condition in his 28 yrs. of practice. So thankful he said he was referring me to the specialists at Emory. My symptoms were vague...I had these raunchy headaches for well over a year which I think were connected but not sure and I do have tinnitus but have had it for over 20 yrs. (told at the time it was from slight hearing loss). One of the 1st questions Dr. Dion asked me was did I still have the tinnitus. I said yes, I do and he seemed rather surprised at that. Hoping it is still from hearing loss and not a problem.

#5

#6

Awesome news!!! I was thinking about you! Did you have to spend the night st Emory? So glad you got this fixed!!!

BON

#7

Hi Bon, Thanks for thinking of me. Yes, I did spend the night at Emory. I was supposed to go to ICU after I got out of recovery but there were no rooms until 10 pm so I spent hours in the recovery room. I was awake enough to hear what was going on around me and hear the pain and misery many of the folks in there had and so thankful it was not me. On the flip side when I left ICU the next day the nurse walked me to our car and as we passed the nursing station one of them commented 'boy that's different...we don't see many people walk out of ICU!'

#8

We love success stories it helps us stay positive when we face these challenges… God bless!

#9

Hi, I too had a DAVF embolized by Dr. Dion (type 3). This was 6 months ago, after a small bleed that occurred after running the Peachtree Road Race. I just had my 6 mo followup MRA and everything looked good. I know there is a slight chance that it will come back or another will form, but as of now, I feel very grateful for Dr. Dion's diagnosis and work on me. He is an excellent surgeon. I wish you the best of luck!

#10

Very happy that your follow up looked good...I had a follow up end of Dec. and it, too, had no problems...certainly wonderful news. Sounds like we both were blessed by Dr. Dion's expertise...and yes, he is a top notch surgeon in all respects. We are very lucky to have him as our surgeon. Best of luck to you too.