Replies to This Discussion

Permalink Reply by vivian on February 29, 2012 at 11:24am

Suzy E,

Thank you for good advise and inspiration. I become so tounge-tied and my mind goes so blank that I am too verbally disabled at the time to reply. I will keep trying. I guess it takes a lot of practice.

Vivian

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ModeratorPermalink Reply by Suzy E on February 29, 2012 at 12:35pm

Vivian,

I hope it helps. I am going through the same struggle myself and know I'm still learning so take the advice with a grain of salt :J It does take practice as well as time. Don't beat yourself up. We are all just at different places on this journey. Hope you are feeling well. :J

Suzy

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Permalink Reply by JR on February 28, 2012 at 2:41pm

Vivian, I am very much like you. Although, sometimes I don't mind people helping me collecting my thoughts. But deep down I wish they were more patient because I know, I can eventually, come up with the word. I think we should let people know when they are rude, otherwise they would never know! Good luck to all. things could be worst!

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Permalink Reply by vivian on February 29, 2012 at 11:29am

JR,

Thanks for the reply. I need all the help I can get. I probably need more patience and assertiveness myself.

Vivian

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Permalink Reply by PAL on March 2, 2012 at 11:35am

Hello Everyone,
I am new to this site as well as new to AVM. i have been reading alot of peoples profiles on here and alot of you have stated that your AVM was detected months before operations or other procedures. I am just curious as my AVM was never detected until I woke up one early morning in December with undescribable pain in the right side of my head and when I opened my eyes I noticed right away vision impairment. I sat at the edge of my bed rocking myself due to the pain, then the alarm clock went off and my husband woke up, asking me if I was okay? As I am never awake before he is. I stated to him that no I had a severe pain in the right side of my head like I have never had before and that my vision was screwed up. So he went outside to start both of our works vehicles as we drive children to school. When he came back in he noticed I was still on the edge of the bed rocking and tears were coming from my eyes, cause of the pain and as well as I was scared didn't know what was going on. He then phoned the ambulance and I was rushed to a near by hospital where they did a CT Scan and informed my husband that it didn't look good as he didn't understand what they meant, they then told him that I was bleeding in my brain and that there was nothing else they could do for me at that hospital and rushed me to another hospital. I can only imagine what he was feeling or thinking. As for me I don't remember much of that day nor the next week or so. Everything has been a blurr to me. I kept and still keep asking him questions about that day and the following week in the hospital. The other hospital did more scans and testing on me, as well as an angiogram test. That was all on the day of December 9, 2011. They had told me that they would have to operate and told me the risks, of course, I signed the papers, but was not in my right state of mind, as everytime the doctors or nurses would talk to me, I would have to call my husband right away to tell him what they had told me, as I know I wouldn't remember and was not comprehending everything. That was a Friday morning when this all started, then by Monday they were telling me they were going to operate, well they didn't on that day. Then they told me Monday night they would operated Tuesday, well Tuesday came and still no operation. So once again on Tuesday night they told me once again that they would operate on Wednesday, well they did finally operate, but they postponed it by a few hours, and according to my husband I started to freck out and couldn't breath. He told them at the hospital that they best give me something to relax as I was not dealing well with all of this. He stated to them, as for three days they put off my surgery and was told they would do it on that Wednesday just for them to tell me they couldn't do it for a few hours, my hopes kept being shattered each time and I couldn't deal with it anymore. As to the side effects of all of this happening, I ended up with depth perception problems, which that has come back, however, my periphal vision, has not come back yet and they have revoked my license, so i am not able to drive, no can I work for the time being. I am going nuts and crazy and emotional all at the same time, as I have been working since the age of 14 and driving since the age of 16, I find that with this happening to me, that my indepence has been ripped right out of me and am having a hard time dealing with it. My mother keeps telling me that I am strong as well as others, yes in once sense I am strong, but in another sense I am not. I hate the fact of being dependant on someone to do everything for me or to take me places. I was married once before and I lost my independence in that relationship and when the relationship was over I fought long and hard to be independant and now once again I have lost it. My husband is a great support but doesn't fully understand what I am going through and what it is like to be this way. Well I think I have babbled on long enough. Any advice would really be appreciated.
Thanks
PAL

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Permalink Reply by Armand on March 2, 2012 at 7:51pm

Congratulations on keeping up with those who don't know what AVM means. It has been 23 years since my operation. Yes, I have memory problems, short temper, difficulty concentrating, and more. But, when I see your story, it helps me keep going. I have to push now to prove that I can stay strong like you.

I will accept that I can't do everything like the normal people. I write everything down and keep paper files. By taking care of my limited abilities, I will be able to do what I need to do to take care of myself. It will always be an uphill struggle.

Thank you.

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