I Love this Support group ☺

General Blog
1

One of the things I liked instantly with this support group was that people was honest, the stories was real!

I could connect, I was no longer on my own...

Hearing other people experiences has made me realize both the similarities and differences in each case.

It has been something worth having back in my mind during this journey of avm knowlege.

I know that each avm story is unique and special and that it is important to have this in mind all the time

while searching and reading different stories.

Still, I am searching for any experiences with Proton Beam treatment, be it the good ones or the bad ones.

I want to know as much as possible to be prepared for possible complications as well as a possible positive outcome :) Sum sumarius it helps me with my final decision, that is if i have a choice?

Knowledge is good, especially when dealing with a new avm diagnosis and a tool to use before meeting the medical team and the different treatment options that lie ahead.

Often as a newly diagnosed avm patient you might have many questions that general doctors can not answer.

This site is often found by people that seek out, googling, desperately searching for some answers or to find other people they can connect with. Like I did!


Finding this support group where you can let go, being open about your worries or sharing moments of feeling good, being helpful, or simply writing down the thoughts that you are thinking in a blog...

...has been really therapeutic for me and for a lot of other members in here.


Thank you Ben for creating this support group!

I love it ☺

Peace and Love

Hanne xxx

2

Hi Hanne. Massachusetts General Hospital used to do that procedure a lot if I remember correctly. I know you live across the pond but maybe you could e-mail them. NEVER GIVE UP HOPE!!!

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Thank you Barbara, I will never give up hope :)


I am still waiting for an answer from Sweden, if I can get treatment there. I recently found out that they might not do Proton Beam on avm´s at the moment (?) and that they recommended the National Hospital in Norway to apply the Paul Scherrer Institute in Switzerland!


At this point, I do not even know if my hospital know, about this new information? Having said that, they have mention earlier that either Sweden or USA might be options for me if they decided on Proton Beam treatment, so why not Switzerland?


Since I am not a candidate for gamma or any other treatment, this will be my last chance to get rid of this avmonster... Luckily the state will pay the hospital bill abroad, finger crossed and I will soon get a letter in the post with some dates and more information!!


I will keep on posting my progress on my profile...hmm...something must happen soon before my profile turns into a book...lol

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My current airline flies to Oslo. My base in Charlotte NC… does not go there.All my Philly PA based friends have promised to contact me if they get a trip there. It goes super senior…35 years plus. I have shown your pics and they love you already!!! My airline is USAirways …we landed in the Hudson River 2 years ago. Sully proved me wrong…water landing possible. Google it…he was amazing!

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Hi Hanne.

I have to post this one since so many have forgotten. Already flown this leg in Dec....have returned to flying due to a family illness. Happy to be working and no complaints!!!!!!

http://www.youtube.com/watch?v=imDFSnklB0k

I know I survived for a reason!!!

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We are called Cactus because we merged with America West…think we are on this earth for a purpose???

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Hanne,

Though I'm not a 'true' AVMer ;) (I'm a CMer - same 'family' as the AVM), I didn't know they were still using the proton beam, but I see Loma Linda, CA is @ http://www.protons.com/ , so maybe that could be another long-distance option?

Am not certain if Stanford Neurosurgical Fellow Dr. Nadia Khan is practicing yet, but the last I heard she was going to be practicing ?somewhere? in Switzerland.

Take care,

Patti

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Barbara: wow… that was amazing… were you at work on this plane when it happened?

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Patti: Proton Beam treatment has been going on and still is very alive, but is mostly used for avm´s that are large and in a very sensitive area, not suitable for gamma (photon radiation).

I have added a discussion in here that explain it more in detail http://www.avmsurvivors.org/forum/topics/photons-vs-protons-whats-the

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No…I was not working when this incident happened. I realized after I posted this last night it sounded like I was on it. I have just recently returned to work with this airline and one of my first trips back was this route and this type of airplane. 7 years ago I took a voluntary leave of absence…just for fun. In Nov I took an intense 2 week re-training course and started back as a Flight Attendant. I wanted to post this link on here for a reason. Miracles can and do happen. I am sure every person on that plane thought this was the end. In fact…there has never been a truly successful water landing. However, due to knowledge and training of the pilots and flight attendants…everyone survived. It was called the Miracle on The Hudson.

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I should probably also clarify the statement…I know I survived for a reason. For the last several years I have been involved with animal rescue. Just found out that one of our volunteers has suffered 2 strokes. She is only 34 years old.The director of the shelter has asked me to speak with her. I have done this sort of thing numerous times over the years. Mainly because when I was ill…I had not seen anyone make a full recovery.

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Thank you for the info about Proton Beam treatments in USA.

I think that the National Hospital probably has some sort of an agreement with certain hospitals abroad for this sort of "exchange".

All I hope now, is that my avm is not to complicated for any of them!

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Hey Hanne; Hope you are well. I had stereotatic radiosurgery or gamma knife and I believe my avm is located in the spot as yours, upper parietal lobe. Anyway they gave me a booklet on the machine they use. If you would like I can scan it and e-mail it to you. If so my e-mail is ■■■■■■■■■■■■■■■■■■■■■ just let me know.

14

Jason: Thank you for caring :)

Even if I wanted to take the risk involved in Gamma Knife radiation, the state will not pay for it...

...and I think I am pretty convinced now, that it is not a suitable treatment option for me, due to the high risk that most likely will follow...

... which is permanently paralysis!

I can not use Gamma radiation (or any x ray radiation) on my avm, due to the many feeders, the size and the location (not suitable for fractional treatment ). So the only option left is Proton Beam treatment (particle therapy), because of the more precise radiation (to the millimeter) and because the radiation do not pass all the way through the brain!


Hopefully the risk of complications involved with Proton, in my case, is smallish (?) that is what I hope for...and the answer I would like to find in my post...soon... !!