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AVM Survivors Network

My left occipital embolisation story


#21

Cor!

You’ve had a week and a half there! Thank goodness you got the revised message about your hair!

As I was scrolling down the page, picture by picture I was going to say what a good looking woman Sinéad O’Connor is and to feel free about buzzing off the fuzz but then you went the full nine yards! Great strength to you. You look good!

The main thing for me is you sound more up than last week. Bit of a rollercoaster for you but I’m glad to read more positivity between your words than just before.

Very best wishes with all of your recovery. It’s going to be an interesting ride, I think!

Love,

Richard


#22

Sounds a bit like a scotoma to me, usually a migraine aura symptom. Mine appeared as a dot and became a teardrop and split into a “C” shape but it wouldn’t surprise me to find that other shapes are possible. They usually vanish in 10-20 minutes, I believe.


#23

Hey Richard,

Thankyou! Feels good, feel alot more confident without than in the patchy phase :smile:

Yeah its been intense! Definently feel a bit better than last week. Still exhausted but feel happier about getting seen at the hospital being reassured everythings being investigated seriously. I think the drastic differance in how I was feeling after going off the steroids was a bit hard to cope with. But back to feeling confident things are gonna move forward! :smiley:

Looking forward to the angiogram too and happy they think im ready for one, information on what’s going on is scary but soothing.

Lots of love,

Corrine


#24

Mine was still there after around 30-45 mins, it could be a migraine though! Regardless it seemed to be the final complaint that led to me being seen!

I forgot something… I’ll edit my last update :smiley:

Love,

Corrine


#25

Well done! Stay positive! This group is called AVM Survivors for a reason!

Very best wishes, Richard


#26

Well said, Corrine. You mentioned that recovery might be longer than we thought, and BOY, do I understand that. When I was in 2 rehabilitation center, month by month by month, I saw so many patients coming and leaving, yet I was always, it felt, there FOREVER! At least the good news of that, is that the rehabs lots of times will keep a patient in LONGER than others because the patient is STILL getting more and more IMPROVEMENTS. So I just tried to keep ‘pushing on’ forEVER!!! :wave::wave::wave:


#27

Thankyou @BoxBarge,

This part really touched my heart, I love your positive and inspiring perspective:

Completely agree, they saw rehab was successful for you and that there was still further development to be had! And there is still development to be had indeed every day :smiley: :raised_hands: you have a very empowering outlook on life - something I will look back on in hard times and find strength in :heart:

Love,

Corrine


#28

Corrine, I love to see all the SUPPORT here for you, and I, also, admire your quite POSITIVE ATTITUDE during a very difficult time. I have a great feeling you will recover better than you will ever expect!
TOAST TO YOU!
Lisa


#29

Hi Corrine. Sorry to take ages to get back to you. I could have cried when I read your email because this is the most understanding thing of my position that I have ever read. My AVM is low flow (due to my very low blood pressure) and does not give me any everyday deficits. I do not have to take medication and do not have seizures. Yes I have to live with it and the knowledge it could rupture anytime. But I’m really not prepared to risk my current quality of life and make things worse for myself. After all, any of us could get killed in an RTA tomorrow. What we don’t know isn’t always scary, although it is because having an AVM makes you more aware of your mortality. I think you are right about getting as many opinions as you can and being accepting of what those opinions are. It has reminded me that I could do with following up and getting an up to date referral. So thanks for that. So glad to hear to have come out of your own treatment okay. Best wishes Lulu


#30

Corrine, thank you for the compliments you give me here! When I found out I had an AVM, it was in the early 1980’s, & I knew NO ONE ELSE with an AVM, probably until I found this AVM site @ 10 years ago, I think! You are right, the SUPPORT here is so helpful for all of us.
My name is really Lisa, but I go by BoxBarge, because that was a nickname that my fab older brother gave me when I was really little (I am 56 now), but I still use the nickname because I love my brother so much!) All these decades, both my brother and I do not even know HOW the nickname came about!! Too funny!!!