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AVM Survivors Network

How long does it actually take to heal - cerebellum bleed


#21

Our Mother’s Day was in March :joy: I have a cat to lol a tabby. He not the most affectionate…
I have heard of the name you refer to our avms as. I thought it was a intracerebral avm - how wrong was I. Well no one tells you anything here. Its great (in a roundabout way) that you have experienced similar symptoms to me, as it’s hard to find individuals experiencing similar experiences.
The problem I have at the moment is that it’s nearly a year and it’s still controlling me. It seems a large majority of individuals control there symptoms within 6-12 months and I’m a yr on in June and still struggling . Seems pretty unfair unless it’s all going to start kicking in. You are very fortunate that you were able to get on with day to day living so soon :blush: I like happy stories.


#22

I agree with lifeisgood :blush:


#23

You’re not alone. There are plenty of us here still trying to shake off the beast.

Richard


#24

Hi, Cornishwaves!

I may have gone home at about nine months post-op, but I wasn’t totally independent, or symptom free! I was never able to return to work… I had worked so hard to complete nursing school and then receive my university degree. I had been a veteran critical care nurse. I just focused on activities of daily living.

I did a great deal of researching to understand what had happened to change my life so much. And, that was frustrating. There was so little in medical literature, no support groups, etc…

Hope you have a good week! Micki (my tabby): :two_hearts::cat2:. Lifeisgood


#25

Hi, @Cornishwaves!

How are things? ‘Haven’t heard from you in some time! I hope you are improving. Believe it or not, I am noticing small changes even 25 years post-op! I was unable to listen music or television at even a normal volume. Now I can at least tolerate it. ‘Hope to hear from you again. :cat:


#26

Hi @Lifeisgood
I’m still going, just taking each day as it comes… I’ve calmed down a bit with all my crys for help. Think I’ve just accepted that it’s a work in progress :blush: I’m still not independent living as yet, though it is improving. I truly just want my independent walking back, at least then I can go out and about on my own. I’m still being assisted everywhere. Did you suffer with a bouncing sensation where the damaged area is? I think it’s that which is preventing my walking. I can walk I just get bounced off balance to the side usually. So frustrating. I’m keeping strong though that it will calm right down
Nice to hear from you
Jo


#27

Hi, Cornishwaves!

So nice to hear from you! I completely understand how frustrating it is recovering. It takes FOREVER! Meanwhile, you just want to regain independence and be productive and happy.

I didn’t have the same sensation you describe. Rather, I had a feeling as if there was a stiff, very tight grasp on the tissues under my incision. I had a very wide gait. I walked like a duck, while grasping my father’s arm. VERY slowly I gained more stability (and a more normal looking gait!) and began heading out to walk on my own. Twenty-five years later, I walk on my own for several blocks on FLAT, DRY surfaces. Other surfaces, or winding days, put me at risk!

As I am pretty sure I said in the past, concentrate on what you CAN do. Thinking of what you can’t do (yet) is counter-productive. Build from there. It WILL get better!

Life IS good!.


#28

(

The word is “windy”, not “winding”!)


#29

I had an AVM bleed in the cerebellum back on Dec 7th, 2017. It was operated on that day, I spent about 3 weeks in intensive care at the hospital. I rehabbed for 6 months and now It’s a Little over a year and I am still pins and needles on my right side, especially on my joints, double vision my right eye looks 5 degrees above my left eye, (I wear prism glasses for that) and I get spins when I look up I do everything now, I just wear glasses which I never did before. My balance is better, so is my noise tolerance. I need to get rid of pins and needles on right side and double vision and I’ll be normal. I was 57 when it occurred.


#30

Hi, Dday103!

I am so pleased for you! Recovery is so frustrating. I struggled with it for years before I finally settled down and accepted the way things ARE. I had to accept that I could not return to life as it was or how I wished it to be. I came face-to-face with reality. Each day is precious. There are no guarantees in life. This realization is so powerful. It changes one’s perspective. I am grateful for little things every day. I am not rattled by many of the things that irritate others.

I understand your “noise tolerance” issue. I am really put to the test when I get together with my mother. She is hard of hearing (even with an aid) and puts the television on at twice the volume of my usual tolerance!

I also used get “spins” when I went to bed. I still do unless I position my head and neck in a slightly flexed way. (Thank goodness that is not as pronounced as it once was!)

Things may still improve.
:blush:


#31

Lifeisgood

    February 8

Hi, Dday103!

I am so pleased for you! Recovery is so frustrating. I struggled with it for years before I finally settled down and accepted the way things ARE. I had to accept that I could not return to life as it was or how I wished it to be. I came face-to-face with reality. Each day is precious. There are no guarantees in life. This realization is so powerful. It changes one’s perspective. I am grateful for little things every day. I am not rattled by many of the things that irritate others.

I understand your “noise tolerance” issue. I am really put to the test when I get together with my mother. She is hard of hearing (even with an aid) and puts the television on at twice the volume of my usual tolerance!

I also used get “spins” when I went to bed. I still do unless I position my head and neck in a slightly flexed way. (Thank goodness that is not as pronounced as it once was!)

Things may still improve.

:blush:


#32

Dday103,

Did you mean to send a response? ? ?

Lifeisgood


#33

I thought I responded to your email, if so I meant too, why do you ask?


#34

Dday103,

I received an email. But, like here, I saw a copy of what I sent only…no reply. Am I missing something? Could be. I am not computer savvy.

Lifeisgood


#35

I received your email on my gmail and I replied to it this morning. I’m not a computer genius either, but everything I said was factual so if my emails show up somewhere I didn’t expect. Oh well. Thanks for messaging me to find out, I’ll be more careful from now on.

Tom


#36

Guys,

When you reply to emails, it depends on how your email system shows the message to you. For example, gmail on Android seems to mess up and show you old emails so you need to collapse the messages to find the most current.

However if you log into the system, you’ll see each step of the messages clearly.