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AVM Survivors Network

Davf worrying symptoms

#41

Have you looked at the web site “whooshers.com”? Everything you’d ever want to know about PT, successes, failures and medical articles including stenting. |Could be of interest.

#42

Yes! Thanks Jenny. Without the “Whooshers.com” site I wouldn’t be where I am today. This was where I initially found a lot of information when my ENT said that I would “have to live with it” when I asked what could be done about the sudden onset of PT. I looked up “PT” and found the Whooshers facebook page. From there I read about Dr. Amans in San Francisco and sent my MRI to him to review. He sent a letter to me with a copy to my doctor saying that he could see at least one fistula and I needed to see a neurosurgeon immediately. I was referred to Dr. Fleetwood in Victoria, but was told it was about a 3 month wait, so I faxed Dr Amans letter to Dr. Fleetwood asking to get in sooner and he called me to come in the next day! So, yes, Whooshers is a great site with lots of resources, but I haven’t been on there since I had the burn on my head from the glue embolization, but I will go and see what I can find about stents. Thanks for that suggestion.

So do you have any more surgeries in the future or are they monitoring you annually to make sure everything is ok?

Hugs, Carol Wilde

#43

No, not unless I have some symptoms. I went for 2 MRIs 6 months after the embolization then for CAT scan and angio a year after that and an MRI 6 months later. Then in July just passed I had a couple of CAT scans and the stent placed. In December I had a final CAT scan which confirmed all my hardware was still firmly in place. Hope that’s the end of it for awhile.
Jennifer

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#44

Hi Jenny,

Thanks for the suggestion of the whooshers.com site. On there I read about a case study they are doing at Cornell University in NY. It sounds very similar to what Dr. Haw was talking about doing. I emailed thta doctor for more info, so will wait and see what he has to say. In their write up they go through the neck to place the stent, whereas here they want to drill a hole in the top of my skull and insert another catheter to place the stent. We shall see. I am finding I can’t remember words that I want to use in a sentence lately. It has been happening more and more oftenat work and is concerning me. Have you had any issues like that? It could just be that I am old (62) and work is extremely busy, but I can’t help thinking my fistula situation has something to do with it.

Thanks, Carol

#45

You may think you’re old, Carol, but I’m older! I’m 67. My short term memory is getting worse by the day. We cope by laughing about it. A lot of hand gesturing and “you know what I mean” type conversations. It’s like a black hole, not even any hint of what I’m trying to remember then boom! It’s back clear as day. I made a point of having my Will updated by a lawyer in case I left it too long and couldn’t remember what I wanted to do. Hope you hear back from “whooshers”. I like to think of my experience as the “procedure that almost failed”. You’ve never seen so many shocked faces as they tried to stop the blood gushing. I said to the neuroradiologist as they were rushing me away to critical care…“scared the crap out of you, didn’t I?”. And that I did. Maybe my experience will be lucky for you. In hind sight, if they had offered me the cranial entry option, I think I may have considered it. Let me know how you fare.
Jennifer

#46

Thanks Jennifer. It’s nice to hear that my memory loss is probably just age related, however, my husband is 8 yrs older than me and he doesn’t seem to have these issues. Your situation sounded very scary. I’m sure it was because of what happened to you that my doctor said they can’t send the stent up through the groin! I’m hoping the doctor in NY can tell me what they would do differently and then maybe I can discuss that with my doctor. Drilling a hole in my skull just seems a little extreme. The NY doctor talks about sending a balloon up the artery first to open up the stenosis in order to place the stent…is that what they did with you? Glad my will is up to date, but I’m not ready to go yet! Thanks for keeping in touch.

Carol

#47

Hi again Carol
Just a thought I had. You’ll see a number of people on this site refer to the Barrow Neurological Institute in Phoenix, Arizona. They offer 2nd opinions and even remote interviews. It looks promising and may be worth looking into. Just google the name. Hope this helps.
Jennifer

#48

Thanks again Jenny, will do! I did hear back from Cornell University Hospital and they asked me to send them my scans. I have just sent off requests for these records, but they will take up to a month to obtain them by mail. Hope you are doing well! Thanks
again for your support!

Carol

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#49

Carol,

Just realised I never answered this, sorry. If someone is “diminutive” it means they are small. So, diminution means something like “smaller than usually seen” in my anatomy. In other words, my right transverse sinus has a part of it that is narrower than normal.

The transverse sinuses are major veins that drain blood from the brain, flowing from the middle of the back of your head, one horizontally to the left, the other likewise to the right, where they become the “sigmoid” sinus, which is an S shaped vein that goes down past your ear. It is abnormal flows in the sigmoid sinus that are most often heard as a pulsatile tinnitus, I believe.

Very best wishes,

Richard