I have been diagnosed with a cognard scale grade 11b or grade 111 brain fistula. My treatment options are embolization and possible craniotomy. Does anyone know the risks of treatment or the chance of a stroke with no treatment. I am a healthy retired 68 year old woman with a wonderful husband that is healthy and active. I do not want to end up with him having to care for me the rest of his life if something goes wrong with surgery. We have been married 49 years. I have not been able to find statistics on risks versus treatment. Any comments will be appreciated and I know the decision is in my hands only.
Hi Tazgran and thanks for sharing with our wonderful community. Where are you receiving treatment and how confident are you in your neurosurgeon? How many patients similar to you have they treated? My husband has a large and complex dural AV Fistula and he had retrograde drainage into his brain which put him at high risk for stroke. We went the route of his having numerous endovascular embolizations and he did have one major craniotomy at the Barrow Neurological Institute with Drs. Spetzler and McDougall. Where are you located? I'm sure my husband, Robin, would welcome speaking to you if he can share any wisdom. I think these things are very individual and it really is a personal, informed choice.
I can happily say, as of this moment, to look at Robin, you'd never know anything was wrong with him. He is living an independent, fully functional life. We are very blessed!
Praying for a positive outcome that allows you 20 or more years of wedded bliss! What's your secret?? :-)
Joy
Thank you so much for your words of encouragement. My treatment will be at the Barrows Institute in Phoenix with Dr. McDougal. Monday we will discuss my treatment options and I will trust the Doctors recommendation. The Barrows institute came highly recommended to me and Ihaven’t met the Doctor yet but have talked to Renia several times and am very impressed. She has worked there for 24 years and assures me he is a kind and caring Dr. I would love to hear of your husbands experience if he is willing. I live in Mesquite Nv. We will decide on Monday when to schedule treatment. The secret to our marriage is don’t give up when times are troubling and above all else, love each other every minute of the day. You never know how many there will be. Thank you so much. Rexina(tazgran)
Rexina: you are in the BEST hands. We love Dr. McDougal. He is expert, yet humble. Feel free to email Robin at: ■■■■■■■■■■■■■■■■■■■■■■■. My email is: ■■■■■■■■■■■■■■■■■■■■■■■■■■.
I love your words of wisdom re: marriage!
I am not familiar with the cognard scale. I was diagnosed with a Level 3 dura fistula in February after an angiogram. The Drs told me it was the highest risk and that I could have a major stroke within 3-5 years The neurosurgeons discussed my case and recommended embolization. I had the embolization treatment done in March where the dr injected the vessels, etc with a glue-like substance called onyx. When I went back for a followup angiogram, the fistula had returned and was at about 20%. Again, the high risk came back and so I had a craniotomy done on July 7th. Thee doctors were surprised it came back as they had told me it was like a 1-2% chance that it would.
For me, anyway and after talking with the Drs, I did not want to take a chance of a stroke. Maybe mine was a higher risk than yours, I don’t know. I would talk to the doctors more about all this.
I am 65 and healthy as well, so for me there was no doubt. Neither procedure was bad. With the embolization, I had a headache for about 3 weeks and has to sleep at no less than a 45 degree angle. For me that was the worst part. The craniotomy was successful and, like the Drs said, I’m pretty much back to my normal activities. I spent 1 day in ICU both times and a few days in the hospital.
Your case may be different than mine. My fistula was under the dura and not actually in the brain, but if it hemorrhaged it would bleed in the brain. I have a followup scheduled on August 12th and will probably have a couple of more followup angiograms over th next year or two.
I went to Emory University Hospital in Atlanta and my neurosurgeons were Dr Tong and Dr Barrow who did the last procedure. They were wonderful.
Hi Bon. Thanks so much for the information. I have heard that fistulas could return. This site is so wonderful as it is good to talk to someone that has the same experience that I am facing. I hope you are still doing well and on your way to permanent fistula free living and able to do fun things instead of spending all your free time at the Dr’s office. I guess the thing that scares me the most is the thought of a craniotomy. I think I have watched too many old Frankestine movies. And I just spent big bucks for a haircut!! Oh well. Did you have to do any physical or brain therapy? My fistula is near the part that controls balance. Also I have had some vision problems. I have never suffered from headaches. I have had several TIA’s.(mini strokes) Thanks again. Rexina
Yes, I wish I had found this site sooner! I am doing great! The thought of the craniotomy scared me, too, but it wasn’t bad, maybe easier in some ways than the embolization I don’t know where yours is, but I had no symptoms. Mine was located at the base of the brain I guess you’d say, just above and to the left of the cerebellum. They cut the back of my head from the middle and up about 4-5" I have a small titanium plate/screws where they removed the skull and replaced it but I can’t tell They only shaved about a half inch strip of hair along the incision line, so you can’t even see it when I comb my hair. They had to cut thru the neck muscles, so that is where most of the pain is, as the Dr had told me. I think I was more afraid of the pain but it wasn’t that bad and I only took pain meds about a week and a half. The surgery was about 5 hours.
I haven’t had any TIAs thank God the PT lady came in ICU the day after surgery and we walked the hall and again the next day but I didn’t have any issues, so passed that test. An OT lady came in a couple of days later in my hospital room and went thru a few things brushing teeth, getting to the bathroom, etc., I had no problems. So I have no ongoing therapy.
Hi Tazgran! I am brand new here and this is my very first comment. I also have a DAVF, Cognard grade 2 a+b but also grade 3. Sounds a lot like yours. I am having embolizations in stages. My first was August 25. It didn't go as well as I would have liked. The artery they were in to access the fistula was damaged and they had to shift focus to repairing that. Stage 2 is scheduled Sept 22, exactly 1 week from today. I'm nervous, but all in all the first treatment wasn't too bad. Oh and my groin site bled and I had a huge hematoma, so that added to my misery.
I'd love to hear from you, if you have decided to go through with any treatments.
Hi small town girl. Thank you so much for your inquiry. I am happy to answer any questions you may have. I too am a small town girl. Actually a 68 year old small town girl with a young attitude. I actually did have embolization treatment on Aug. 4th at the Barrows institute in Phoenix. Like you I was nervous but after the consult prior to the procedure with Dr.McDougall and his team I felt very confident I was in excellent hands. Make sure all of your questions are answered to your satisfaction by your Doctors. It was very important to me to understand what the risks were. I hope you are being treated with a Dr. With a lot of experience and credentials. My procedure took over 6 hours. The next day they did a ct scan and said it looked like they had successfully sealed it off. I will go back in Nov. for another angiogram to see if it is still sealed. I did not have any problem with bleeding at the groin but it was tender and very bruised for a couple of weeks. My davf was in the dura matter of my right cerebellum. You will be in my thoughts every day and even though we haven’t met we have a bond that is special. I am here for you so please respond with any more questions you may have. Taz (Rexina)