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AVM Survivors Network

New member saying hello with my story

Hi Everyone,

Im Wally, I have been following this site in and out since my first and only a back in July 2016 on my dirty 30bday lol, it was nice to see everyone’s success and stories here along with people supporting each other,

My quick story, July 2016 tonic-clonic seizure after a restless night post workout and energy drink, may or may not have been the cause of seizure due to years of drinking that stuff.

Although after dislocating and snapping my shoulder, emergency CT scan. The avm was discovered, fast forward today post angiogram and few scans, I basically live with a left side " low risk" speztler-martin 4 avm.

I am not a doctor but have grown to be quite knowledgeable from research, reading many articles and studies from every aspect to ( biological factor, risks in the treatments available, current new therapies etc ) I even try to find online classes of surgeon teachings on avms etc.

This to say, Hi to all from Canada and feel free to ask any questions and I hope I can help someone as I was helped from readings here throughout the past few years.

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Welcome to the site! I also discovered what an AVM was and that I had one in 2016, although it took a while for me to be able to remember what it was and had to asked my wife, the short term memory was misfiring. Since then I have had gamma knife surgery on a grade II and just passed the two year mark. A ton of experience on here and its great you’re here to be a part of our group and am sure you’ll be able to help.

The people on this site are amazing, and we generally understand each other, particularly in respect to challenges. Thanks for being here, and I’m about 2400km west of you just outside Winnipeg, or Winterpeg as it is affectionately known! Take Care, John.

Hi John,

Thanks for the greetings, how was your avm discovered and what’s your current status / issues with it .

Thanks

Mine was discovered as a result of a hemorrhage. I’m currently awaiting schedule for an angio, which I expect to occur in probably February. Its no longer visible on my most recent MRI 5 weeks ago so hoping Gamma Knife has obliterated it but still to be determined.

That’s good news,

You could also request or ask if a MRA / CTA an option to avoid a angiogram but angiogram is their." Golden standard"

Do you still have any issues post hemmorage, what happened during your hemmorage at the time after you gained your concious etc?

I’ve had all the scans, this will be my third angio and hopefully last. The reason this is next is that mine is not showing up on the others. The staining form the bleed shows up but no indication of the AVM remaining. I have limited residual issues, most nobody but me would know. Memory is not quite as sharp and short term is not as good. Balance is a little off but I can still do everything, except struggle balancing with my eyes closed…but much better than after the bleed. I was using those to judge my progress. I don’t get regular “headaches” as opposed to a bit of an odd feeling although that was subsided considerably. Overall, all is great!

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God bless

That’s amazing man nothing but good news to, I’m in the grey zone of fix it or keep it, keep me posted on your progress

Hi Wally, I’m not from Canada but wanted to say Hi and I hope you can make a desision on what to do.
Also congratulations to John that’s amazing news. I had my gamma knife 7 months ago. John what did your scans look like at 6 months, 1 year and 18months please?
And Wally in your research what is the quickest time you have read that an AVM can be gone by? Thanks Gill

My granddaughter had gamma knife and was told that results would take up to three years. The said most people see substantial change at the 18 month mark. They did an angio at 18 months and hers did not show a lot of shrinkage. However, at that three year mark it was very small and most feeder veins were closed off. It has now been a total of four years and she has recently been having a few issues (partial seizures) that a neuro was chalking up to scar tissue from the gamma knife surgery. We feel that he was over medicating her (which we voiced and he listened) and they are currently reducing the meds. Things have been good for the last three weeks. That is the time frame that we were given - here in the middle of the US. I don’t know if AVM size and amount of radiation changes results or creates different time frames???

Love this site! It is great to compare notes and experiences. Be well my friend!

In your research, have you ran across anything on stem cell trials. I ask, because IF my granddaughters uptick in seizures is due to scar tissue from gamma knife surgery - I’m HOPING research is being done to repair the damaged brain cells. I’ve found one article about this possibility. Thanks.

Hi Danielle,
Thanks that is interesting to know. Yes I expect size plays a part. I hope your granddaughter gets complete recovery soon. It’s a long, horrible waiting game isn’t it. Gill

Hi Gill

From what I know it varies depending on the type of treatment, size of avm, location, complexity etc.

Usually a smaller avm can take 6months to over 4 years on some people according to this forum.

Hi Danielle

I know there is always trials and tests with stem cells etc, you would probably have to go to Panama or somewhere other than the states to get stuff like that although.

I would not know to much other than that, if seizures are under control and the avm is cured, that beats anything compared to a potential hemmorage

Angela posted recently on a stem cell trial in the US here:

Hi Wally thanks. Wow was the 6 months gone after gamma knife? that would be amazing if it could go that quickly. I’m praying for it being gone in a year! Gill.

Gill

I believe there was 2 people here that has a high dose and if I’m not mistaking they said it was gone within that time, but there really is no timeline.

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Hi Wally,

Welcome! My AVM circumstances are similar to yours. No bleed, but discovered by happenstance. You can read my story in Profile if you’re bored. I was your age when this occurred. I pondered surgery for many months. But I ultimately decided to have it.

Being young, no wife nor children, five minutes from Barrow Neurological Institute (BNI, known around the world), and in Ironman physical condition, I chose to have surgery in June of 1993. Youth and my physical condition played major roles in my decision. If the AVM bled when I’m in my 60s - 80s life would indeed suck. No regrets at all!

I wish google, bing, yahoo, wikipedia, etc., were around when I was pondering to vacation at BNI. Was at the library card catalog researching for weeks. Plus I was doing it all alone. I told no one.

So, research, eat healthily, exercise, monitor your AVM then make a decision be it in the near or distant future. And don’t do it alone.

Everyone here has been where you are right now. Reach out. We’re all here to help.

Ho Ho Ho!

Bill

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Hey Bill,

Ya I think most people have similar circumstances, although I have a relative in the states who will review my scan with the team at another hospital to see if a surgery if actually recommended or just lay low.

You being around BNI is a plus since I assume Dr. Spetzler probably did the surgery, he probably did those with his eyes closed lol

I’ll check you story out

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Doctors Zabramski and Greene were my surgeons. Spetzler was there at the time. But he retired a few years ago. Zabramski retired in August. Greene was a resident at the time of my surgery. He’s, I believe, in Wisconsin or Philadelphia now and head of some department I’m sure.

And by the way, my AVM was discovered only after I got a second opinion of my MRI images. The first geniuses missed it! I wanted the second opinion only for piece of mind, since it’s my head and all. So it’s good you’re getting a second opinion.

You’re in Canada? I bicycled across it some years ago. Beautiful country. Beautiful people.

You been well,

Bill

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Ya I luckily have a cousin who’s a neuro in the states, makes things way easier for me but not many people have that luck.

Ya it’s nice out here , crazy that you actually biked out.

God bless