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AVM Survivors Network

Jobs that an AVM survivor does?


#98

Hi. I am an RN. I don't work in a hospital setting. I work in a blood donation center. I had a seizure on our mobile October 9, 2012. That freaked everyone out. Since then I have had 2 embolizations and one radiation treatment. I find I have so much trouble getting my thoughts out. I know what I want to say but it is like it just won't come out. Donors look at me like I don't know what I am doing sometimes. It is embarrasing. My co-workers have gotten used to it but they know what is going on. I get all self conscious when I can't find my words. But life goes on...... Could be worse.


#99

Hi melissa, are u aphasic would u say? Im totally in the same situation. Often my words dont come out well, or i just dont store enough information. Im also very self conscious - and if i get bad, i get even more nervous, it all spirals out of control. Sometimes my office co-workers team me a bit, and i just dont like it. and its very embarresing, my entire face just turns totally red when my words just dont come out well, etc


#100

Hi Again Rich - I read this, and although somewhat surprised at what I personally think is backward-thinking in building or maintaining a culture, this is A perspective/argument (in the U.S. anyway) regarding work from home/results-based employment.

Don’t shoot the messenger…and hopefully there’s a different majority perspective in the UK.

http://www.businessinsider.com/tony-hsieh-work-from-home-zappos-2013-3


#101

I get all splotchy on my neck and chest. Looks like I have hives or something. Totally embarrasing. Looks like I got some kind of disease or something. Then I am really embarrassed!


#102

Hi Rich, I am a First Grade teacher. I went back to work one year after my surgery. It was a challenge but. It has been worth it.

Maria


#103

Hi Rich!

Welcome to the AVM site! I have not been on this site for more than six months, maybe? Prior to my AVM, (2008), I was an Alcohol/Substance Counselor. In 2009 (following my craniotomy), I ret'd to work under a State "Senior Community Employment Program: aka SCEP - designed for seniors, retired and those receiving SSDI, SSI, the like. I was able to work 20-25 hrs wkly @$8.00/hr (prior to my ailment, I earned at least $18/hr. I worked with this program for at least 2 years. I stopped in March; it became stressful. I stopped eating regularly; additionally, it was difficult for me to take the bus because I had to walk at least six blocks. Tho good exercise, I tired easily. You see, I wear a leg brace. Now that I am healthy mentally, physically, I plan to return soon. I had difficulty at times -because my left side was affected by the AVM. But you know what Rich, I look f'wd to returning to work! I will be ok!

Good that you were able to return to work!

Best regardsm

Faye


#104

Yes headaches are by far my biggest thing and I have two types - 1 migraine type headache and 2 pulsating headaches with ear pain and more lately pins and needles, I’m lucky not to have seizures. The headaches can come and go but more stress or activity related or pre longed computer use. I’m waiting for my craniotomy to remove my avm. I found this on the net to do with headaches

Because of the high flow and thin walled nature of AVM vessels, the most dangerous presentation is that of HEMORRHAGE in the brain. This might cause severe headache

Although bleeding is the most dangerous presentation of an AVM, HEADACHE is the most common symptom. Any type of headache can be associated with AVMs of the brain, but typically they are pulsatile in nature and are located on the side of the head that harbors the malformation. In that regard the symptoms of an AVM can mimic migraine.

EPILEPTIC SEIZURES are a very common symptom of an underlying brain AVM. The irritation from tiny microhemorrhages and/or the lack of nutrients that result from such fast flowing blood cause the local brain cells to become unstable. This can result in a single seizure or even multiple hard to stop seizures.

A less common but nonetheless ominous symptom of brain AVMs is temporary paralysis or numbness. This results from the fact that blood is rushing so fast through the AVM that nutrients like glucose and oxygen can’t be transferred from the blood to the adjacent brain. Whatever area of brain contains the AVM temporarily stops functioning. This is known as STEAL PHENOMENON. Depending on the location of the AVM, those disabilities can be loss of speech, memory, vision, or strength.


#105

yes, same here! I can feel the burning, and thats makes it even worse cos i KNOW that its happening and then i get even more embaressed. Some terrible catch 22. Always because of aphasia.


#106

look forward t reading your responses. Three weeks since brain bleed, I was in construction for the last fifteen years and enjoyed spearfishing and free diving. All those are on the shelf for the moment. Very lucky to have a girl friend who is helping me, as well as folks with bills. Do you drive a car? I have a little but concerned about possible seizures.


#107

I did not drive for a few weeks after my bleed. I did not drive for 3 months after my surgery. Primary reasons are due to loss of vision and learning to work with that. Biggest issue is if they (doctors) consider you epileptic because of the injuries. The local license bureau might have issues licensing you to drive.

I drive significantly less than ever after surgery. I have good moments with vision and bad moments and know when to go or stop.

Hope this helps you some. Get better.


#108

I work 3rd shift as an autoworker in tn. After having my embos and crani I found it extremely difficult to keep up with the line speed! things are getting better now for me but i have lost cordination on the left side of my body so thats difficult. i don't have to think a whole lot it is very repetitous, but I really can't afford to have another siezure at work, i have had 2, that has stopped production for an extended period of time. 2 1/2 years siezure free now but i'm afraid of how my company might handle it if it was to happen again. management seemed irritated after my 2nd one. the first one lead to my diagnosis so they were understanding about that.


#109

My AVM ruptured when I was 9 so I didn't have my first non babysitting job until quite awhile afterwards. But since then I've been a part time nanny, a tech at an eye doctor's office, I worked at the same clothing store throughout my time in college, and I currently intern at a lobbying firm in DC.


#110

I am Clinic Nurse. I had my AVM removed from my left leg, so as a nurse i'm always standing. That causes a lot of pain and inflammation. But the doctor told me the inflammation was going to be for life. I take pain medication but will not give up what I love doing most. I am currently in college trying to get my bachelors degree in Nursing.


#111

How are you doing ? Are you still working? How do feel ?

I am curious I was a paralegal and now office manager I don’t think I can keep up any longer


#112

Erin - I first was diagnosed when I was 13. Had a significant surgical removal in 1978 and had very little in terms of symptoms for a long time. Was able to graduate from college, spent 20 plus years in banking and 6 years in non-profit work. Raised 5 kids - youngest two are teenagers - oldest is 31. I had to limit my jobs to avoid manual labor - and limited home improvement jobs etc. No snow shoveling - buy a snow blower, etc. But this most recent Embolization has, as my therapist said, “got me” this time. Yes, it is possible to work - but it obviously depends on the severity. Hope that helps - let me know if you have additional questions.


#113

Guys,

Can I just caution that this is a VERY old thread – 5-7 years old – so some people are still active here but others will have moved on. Don’t expect a reply from everyone.

If the conversation resumes, that’s ok. If it stays quiet, I’ll close it but do feel free to start a new conversation with current members.

Richard


#114

hi, yes this was created many years ago. I moved to a different company, now i do part time and freelance. Made it better for me. Im enjoy the work, but its the aphasia that makes it hard still after so many years


#115

Hey Rich, and Dick D.
I also have aphasia, just learned it is called Broca’s Aphasia. For me, it is difficulty finding words, and expressing complex concepts. It seems that the more stressed I feel, the more difficulty I have.
Eb.


#116

WOW Never came across this thread until now i guess… anyway I am a building development inspector… God bless!


#117

Hi eb, i would say myself in a Anomic aphasia area now; altho i was Global aphasia for a while! Indeed, as soon as you get flustered or stressed, pressure is on, the words are even more harder to bring back…