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Comment by beansy on May 5, 2012 at 12:14am

Hi:

Do all survivors of AVMs stay up too late, and sleep at odd times? I know I do, and there you are, unless you live on the West Coast. My health at 62 is pretty good. Until I got an infected knee bone (sepsis) about a year ago. I still have a bum knee, and gained some weight due to not being able to walk for months. I don't think it will ever get better than it is now, but my weight will, and I understand that will help the knee. We'll see.

I went to guide dog school last month, as I am legally blind from the AVM bleed and surgery. It only took me this long to decide to go for it. In 1959, as far as I know, there was no rehab or visual therapy. I am blind in both eyes up, down and to the left from center, no depth perception much of the time, and to me there is no world other than what I see. I always thought (or really never thought) anyone saw anything differently than I did. Anyway, I live by myself since my husband died 15 years ago, and getting this dog is the best thing I ever decided to do.

The visual problems never got better and never got worse. As I get older though, all the accidents and falls I have had over the years are catching up with me. I still have small seizures and still take meds for that. I am still an emotional mess sometimes, I still have OCD which I think somehow is related to the AVM bleed because that is when it started.

But I know how lucky I am to be alive, how lucky I am to have a great son, how lucky I was to meet a good man and know him for the time I did.

Good night

beans

Comment by AMME on May 4, 2012 at 10:26pm

Hey Beans, thanks for caring!
Primary Progressive Multiple Sclerosis is the most rare of the three types of MS. The symptoms I have now are numerous, but the most disabiling ones are constant dizziness/lightheadedness (24/7 since 1999), unable to stand for more than a couple minutes without a quad cane or leaning on a wall or table or the like, tremor, and clumsy fine motor skilla, like dropping stuff.
My AVM was located in the left ventricle, very deep into the brain.
How is your health?

AMME

Comment by beansy on May 4, 2012 at 10:02pm

Hi AMME

That's some story. What were the neurological symptoms that started showing up so many years after your two craniotomies? What is PPMS? Last question - where in your brain was this all located? Never apologize for going on. I am here to listen whenever I can, although sometimes I do disappear for a month or so. If I get an email saying someone posted here or there, I do come here and see what's up.I also arrive at this website when I need to vent, too. Please let us know how you do going forward.

beans

Comment by AMME on May 4, 2012 at 9:05pm

Hi All,

I suffered a ruptured AVM while running track in April 1976 when I was 17 and a senior in high school. It's a hugely long story, but basically I was not expected to survive through the night, although I was totally unaware of the severity of the situation. Everything was minimized to me, so as not to cause emotional upset and further damage to the brain. My aneurysm was located in an area that was previously non-operable, but had been successfully done on a patient in Austria by Dr. Yarsigal four years before. A very skilled and world renowned team of neurosurgeons at MGH (I lived near Boston) successfully completed my 14 hour surgery, making me the first patient in the USA to undergo such a procedure. A few days later there was another bleed and it was determined that they would have to go back in and repair the remaining 20% of the aneurysm. That surgery was done about two weeks after the first one, and lasted 10 hours. I was in the hospital for about seven weeks, returning home within three weeks of my high school graduation. My recovery was termed a miracle and a big fuss was made when I accepted my diploma the night of my graduation. I walked very slowly up to and back from the stage, refusing to be in a wheelchair.
The next 16 years were very eventful (college, grad school, marriage, 2 children, move to Oregon) and I was perfectly fine except for some numbness on my right side (a small price to pay for a miraculous survival).
Then in 1992 I began having neurological symptoms and after nearly 20 years of tests and doctors throughout the country, I was diagnosed with PPMS, although not all doctors agree. There's still a question as to whether or not is could be due to the long term effects of the AVM, stroke and surgery.
It's been difficult having to go on early diaability retirement and becoming progressively worse. I've been using a cane for the past 13 years or so.
Sorry to be so long.........................

Comment by beansy on September 30, 2011 at 3:34pm

Hi guys:

Been out of touch since my uncle became very ill and I came to Ohio to be with my aunt who is 82. Don't know how long I will be here, I have no internet at her house, so walked up to McDonalds to use their internet. I'll be back online in a couple of days. Uncle in Cleveland Clinic. Aunt lived with us when we were little. I am ok, just wondering how long till I go back to FL. I am where I am supposed to be right now.

beans

Comment by Rick N on September 5, 2011 at 9:06pm

Can't remember not having one. Can't remember...ha! That's a good one.

Moderator Comment by Ninibeth Ramirez on August 31, 2011 at 10:37am

I was 19; not exactly a kid but I was young :-)