Friday, May 16, 2008
Not over yet...
My mom had her angiogram on Friday then she met with Dr. Polin on Tuesday to go over the results. The angiogram was not the most fun experience of her life, she felt like it set her back a couple of days (energy, strength wise), but she survived:). Tuesday Dr. Polin shared that the angiogram showed no additional AVM (PTL) but it also showed that he was not able to get all of the AVM during the initial surgery. There was so much bleeding during the surgery that he had to focus on that and was not able to remove all of the malformed blood vessels. Sunday I am taking her in to have an MRI - this will tell the depth of the AVM, whether it is close to the surface or deeper in her brain. Options - 1) if the AVM is close to the surface Dr. Polin recommends surgery - with the best (99%?) chance that he would be able to remove the remaining blood vessels; 2) if the AVM is deeper in her brain then another option would be radiation. This would be a one time treatment (at least from my understanding) and then they would monitor her for eighteen months as the AVM slowly disappeared. There is an 80% success rate with the radiation.
I could tell that my mom was a little down after hearing this yesterday - I think we all were. For all of us it raises the anxiety and stress once again - do we go through surgery again? Do we forgo surgery and stick with radiation - although not 100%? Once the MRI results are read Dr. Polin wants all of us to meet with him and mom to make the decision.
God's best - that HE would lead us as we make the next decision
Timing - Stacia's baby is due in eight weeks - if my mom has surgery again the timing of it will be critical (in terms of recovery, etc.)
Life - all areas of our life are really stretched right now - pray for God's grace as we go through this next hurdle
THANK YOU to everyone for their prayers - it is the BEST thing that we can do!
say a prayer for them....
I've been sick. Seems that i have pnemona i know that my liking of Cigarettes is the cause...
Monday, May 12, 2008
This about says it all...
My sweet little baby sister has Brain ArterioVenous Malfunction (AVM). It's basically abnormal vessel growth. and that stupid blood vessel burst which resulted in all this rubbish. She was most probably born with it. Only 1% of the world's population has it. and out of that 1% a smaller percentage of it occurs in the brain. What are the odds?
Her brain's rather swelly right now, which makes her a little bloaty looking. The doctors have done whatever they can (surgically). They've shaved off part of her head, and haphazardly chopped off some of her beautiful beautiful hair. She's got like 67345372942 tubes going in and out of her. Her fingers are cold and stiff. but it'll all get better ya? Her hair will grow back, the bloating will go down and she'll get warm and laugh her stupid constipated laugh whenever we mimic her. :)
I'm trying to pray but I'm confused. My mom's telling me one thing, the pastor's telling me another. oh well. whatever goes ya?
give her a click... will ya?
Sunday, May 11, 2008
ok so I fibbed!
I know most of the members here have recently been diagnosed or treated for their AVM. Well I am many years further down the road to recovery. I want to let you know that the hard slog of treatments is worth while and things can get better. When I was first diagnosed I had suffered a brain haemmorhage and was in a coma. I have had a lot of treatment, which has not been the greatest experience, especially the fitting of the cage/halo to my skull.
I had no memory of life before the haemmorhage, when I woke up I knew nothing and nobody. I was expected to die or be physically disabled. That was a long time ago and I have moved on, things have improved. I went back to school, mainly to prove to others that I was not mentally challenged but also because I had the chance to do something that I wanted to do. Firstly I learned to read and write, then I taught my three children to read and write as well. When they started school the teachers were very impressed with the standard of their skills. I was still unable to return to work so I decided I wanted to do somthing in education, I was a civil engineer before the AVM.
I did three years at college and qualified as a nurse, yes quite a difference from a civil engineer. Then I needed further stereotactic radeosurgery which resulted in me having uncontrolled epilepsy. I slipped down the path of self pity, I hated what was happening to me. I became very recluse and refused to go anywhere, just incase I was to embarris myself in public. It took a while but I got over that and went on the hunt for a job.........arrgghhhhhh. I was not allowed to do what I had just got the qualifications to do. The schools council cannot take me on as a nurse because of the uncontrolled epilepsy.
So back to the self pity and reclusive behavour, that lasted only a couple of months because I could see it was not doing my family any favours, so I decided I wanted to do more education, even if I was unable to use this in the future. I went back to college, I have said this bit before but will again, so just skip this bit if you already know. LOL. I managed to get degrees in three subjects, Physics, Chemistry and biology.
That done I thought what can I do next to improve my life and fill time. well when I was first poorly I had my own home, that had to go because I was the wage earner and we were living in rented accomodation. We had invested the money from the other house and decided it was time to get back onto the property ladder. We bought a delapidaded property and I went to work on that. I rebuilt much of it, with a little help from a few old friends. I built another three room onto the house,I dug out all of the footings for the walls by hand. I mixed 22 tons of concerete for the footings. I did all of the electrics, plumbing and heating. I plastered 48 walls. I converted the loft to make a further two bedroom and a bathroom. I fitted bathrooms and the kitchen.
I did it all single handed. Whilst this was going on I was having many epileptic seizures every day. I managed to break fingers, toes and ribs. I had more cuts and bruises than I could care to count.
If I can move on and manage to get some stability and recognition in life then everybody on here can do so as well. Just remember this is 20 years of my life. Most of you are just starting on this road. Please take heart from my story, you can get better. I have typed this for the reason of inspiration and in no way want anybody to feel inadequate.
God Bless all of my AVM friends.