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AVM Survivors Network

First year checkup since radiation

#1

So i got the call which i was not lookfing forward to at all yesterday its time for the first checkup since having radiation. I actually burst into tears as this is make or brake. Is this monster smaller or gone or do i have to go back for more radiation. So i had my little breakdown yesterday and picked myself up again no use in worrying about something that is out of my control. However i have made 2 decisions 1. Should my little monster not be gone i will not go for another session of radiation and will definitely not be diong a angiogram cause i see it as signing your own death certificate so i will take my chances without either 2. Tell my oncologist to maybe put together a package for future avm patients and to join this group as i did all my own research as you ate treated as a dollar and not a patient. Dont let an avm define who you are or what you can do. Yes there are certain things that you are limited to but you find a way around it and make it work for you. Live like there is no tomorrow and whatever you do do it with 100% passion and dedication. Strongs to all avm survivors you are all heroes in my eyes :heart::heart::heart:

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#2

Hoping for a favourable report! I had gamma knife back in November 2016 and recently found out via angiogram it was gone. I did have MRI at one year and two year marks. The result if the MRI caused the angio as I wanted to have that info. One year post treatment is still pretty early. Mine was small and they estimated about two years which they were pretty darn close.

I’m guessing you’re having an MRI? Take Care, John

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#3

Ally!

It’s a really difficult time but I think you’re being rather hard on yourself and I would encourage you not to feel down if you don’t see much progress.

My reading of gamma knife radiation is that it is quite variable in the extent to which it acts, so I don’t know whether you’ll see progress yet, or see enough progress for you to be cheered by it at any rate. I hope you do get a sign of improvement but I do think gamma is one of life’s greatest challenges. It requires remarkable, unfair patience.

So… it’s ok to have the little breakdown. It’s absolutely right to pick yourself up. The monster will probably not be gone but I hope the scan shows some progress. Be strong if it’s only partial. I hope it is still working and your doctor will be able to take a better guess when next to have a look.

The rest of your thoughts I kinda agree with. If you’re lucky, you get a doctor who is there to do the right things; sometimes it does seem that they see the dollar signs. Your AVM doesn’t define you: be strong because there is so much more in life to do than walk down this side road longer than necessary.

Hoping all the best! You will get there!

Richard

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#4

Hi Ally:
I had my first Gamma Knife Procedure in April, 2014 and the result was that my AVM shrunk by 50%. I had my second one 2 months ago and my Neuro said he “thinks” the GK will eradicate 95% of the 50% that’s still in my head. However, it’s going to take 3 more years to know for sure. Like you, I have already decided that I will not do it again. This monster has been leading me around the neck and controlling my life for 4+ years and I’m done. Whatever the results are 3-years down the road, I’m done w/GK. Part of my scalp is still numb and will likely never return to normal. The awful burning sensation stopped after about a month. The vertigo has ramped up a bit more, and my memory is trying to re-boot, again. Ally, you definitely are not alone in this fight. I’m fighting right beside you. All the best to you.

Sharon D,

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