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AVM Survivors Network

Passing on the AVM Website to others


#1

Last week I had a followup with my rehabilitation Dr. I was suprised that when I mentioned the AVM website that she was totally unaware it existed. We talked about the positive use of such sites as our AVM site. I asked her about why such information on these online sites were not provided to her other patients who going through other rehabilitation needs. She agreed that it was a good and useful idea, but having the staff to spend time searching for these other web sites created a problem. Has anyone else shared our AVM website with others? I have provided the websites URL to all my other Dr’s as well.


#2

@LESR
My doctors too did not know and dont seem to be passing along this site
I pass it along when I am at the avm doctors office its a great opportunity to share this info when we are at our avms office.
Just yesterday I saw a neighbor who was walking with some help and I stopped to see if I could help and asked if she had a stroke she said yes and then said she had an avm. Wow I thought what were the odds two people on the same block have avms? Then she told me another neighbor has one too.

I have shared this site with her and her husband as being both a patient and a caregiver for my sister I think its important that both get advice and support.

I think if more of us stop and chat up people who resemble having had a stroke I am sure there are more people out their with avms who do not know about this site.

Sharing is caring
hugs
Angela


#3

I told my podiatric surgeon about it and his reply was “Really?! That’s so cool! I’ll definitely have to check it out” :slight_smile: (He had never seen/treated an AVM before nor did he know about the website)


#4

The only doctor I told about all the years I have spent on this site is my psychiatrist. She was thrilled and wrote the information down. I know she will use it if she comes upon another depressed, mood disordered, anxious person with an AVM or, like me, a person who had an AVM obliterated in 1959. I lost much vision from it, and I have always looked for answers. I am mentally ill, partly from the AVM, partly because I was born with Polycysric Ovarian Syndrome. That is also known for depression. Or maybe it is because I have always felt like an alien. Not so much now, more in the past. Keep telling your doctors or anyone interested about AVM Survivors. In my whole life, it is the only place I felt I belonged.
beans


#5

Beansy,
I wish I had the words to help. Since my bleed, I had a major stoke, diplopia, and a host of other problems. Some of those problems have since faded away, others have not, but I try to look at each day as a new experience and do the best I can. It sounds like you have had your share of ups and downs, but just be yourself.
Les


#6

Well Beansyv I went through your prior history w/AVM. Your a remarkable person to have gone through some much, yet retain your spirit.
R/Les


#7

Thanks LESR. It is quite a history, and I should write a book. I have a title - I Was Born in the Leroy Sanitarium. Tat is ecause I was born there. It was a fancy birthing hospital in the Upper 80s in New York City, but it sounds more like an asylum. Being myself is what I try to do now after years of hiding all of it from most. It feels so good to be myself, but it surprises some and that is why it still can be hard to do at times. Thanks for writing.

Is diplopia double vision? Where was/is your AVM? Mine was in right occipital, the vision area. I could have diplopia but because I was young, my brain decided what signal from my eyes it would use. It chose the right side of my right eye. I can see out of the right side of my left eye, but my nose gets in the way. A doctor at some point explained my visual loss to me. Take care. beans


#8

Well, Beansy, just for your info, I too am in my sixth decade. My AVM was located in the central brain stem, to deep for anything else but Gamma Knife (Radiology). As I have said my life was turned upside down. I had to learn being different, just a bit b is not so bad. I just don’t give be up. It’s better to be alive than otherwisr. Hope


#9

Beansy really is one of our most remarkable members! Beansy, I wish you would write a book, or at least a short biographical article. If you did, I’m betting the mods here would give it pride of place!

C’mon … tell your amazing story, Beans!

Seenie from ModSupport


#10

Thanks.


#11

Seenie, you are something else. You encourage me and I know my story is unique just because it happened 58 years ago. No one now would understand the lack of knowleedge, lack of technology, and the inability to see the brain. They had EEGs and spinal taps, and pneumoencephalograms. It was done this way. They took spinal fluid out and put air in the spine. They watched on some kind of xray machine while the air moved around. It moved around because I was strapped in a chair with needles stuck here and there. The chair moved around and almost upside down to make the air move. It was awful. The headache after was awful. The results: INCONCLUSIVE. They were waiting for the air to stop at a blockage in my brain, but I had a bleed, and it never stopped. They finally went by the EEG which showed an area of irritation in the back of my head. The doctor did exploratory brain surgery. He found it. Most kids or people died from bleeds back then. I am a lucky person. Thanks.
beans


#12

LESR, do you have double vision? My thought is it must be much harder to go through a bleed as an adult, rather than as a kid, like me. Kids don’t realize things. I knew I lost vision, but I never thought about it. No one explained anything to me. I cannot know and don’t want to know how it is when you are older.


#13

Hi,
Yep I have diplopia (double vision). It is unnerving at times. However it’s better than it was after my bleed. Still very bothersome. Going through this at my age has been difficult. Having to learn how to do so many things again. But as I say "don’t Give up."Les