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AVM Survivors Network

What do survivors of AVM'S do for work?

Hi slowcatharsis! You will, it just take time. One thing I had to learn and still is work in progress. is Patience. For 36 years I was very independent, then in one day my whole world changed. It took some time, crying, anger and embarrassment. Soon I conquered it all. I am the same person as before but with slower mobility. With time you to, shall do the same. Just be patience.

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I am an AVM survivor. I work as English bilingual teacher for more than 25 years. I use to teach in the UK, in London where I worked for nearly 14 years, then moved to Asia Malaysia I worked there for almost 10 years, now I am in my hometown Colombia in South America. Still teaching. The doctors said please do not stop doing what you love and if you are good at is even better. So here I am doing what I love.

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Thank you very much John for taking the time to answer my question. I appreciate your insight.

Thank you for taking the time to respond @John_O . I wish you the best of luck on your journey

Thank you @Adrian1 for your response and advice. Are you able to give me any advice on which sectors are less demanding?

Thank you very much @Loulou for your response. It has helped me a lot.

Hi @Joanna_V_Davis, thanks for taking the time to respond. Can i ask if your employer was supportive after you returned to work and made adjustments?

Thank you @Lulu1, yes i agree with you on that one. I too suffer from anxiety and i think i just need to find methods of copping. It can just be difficult at times and take over.

Hello @LenkaB, Yes i asked my neurosurgeon and neurologist about this treatment but because of the size and location they said it would not be possible to embolise such a large AVM. Thank you for your response. Good Luck with your son, All the best.

Hi Angeee! Yes I did have a very Supportive Director and co-workers. They let me take control of my own direction. My co-workers knew that I was a very independent and hard working person. They let it be known to me that they were there for me, no matter what changes had to be made. That support still continues now today. Please feel free to ask or inquire about any questions you may have.

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Joanna, it sounds like you have a great work place! I would hazard to guess that your approach to challenges and your personality are contributing fators to your co-workers response! Take Care, John.

Hi Angee,that’s what they have said in UK to Thomas too. Now they eliminated the large part of his AVM but he still has to do a surgery for a tiny part that is left.
So surgery seems to be the final option for him. Good luck!

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i had a large avm too, embolizations, radition, the works but for the longest time they couldnt get it all because of location… years later (15) technology advanced more and they were able to get in there deep and cut it out. my point being keep on checking with docs to see if with new tech something can be done. and it doesnt hurt to try other places, doctors, etc. i was amazed at what they eventually were able to do for me. docs in indianapolis were miracle workers, dr. troy payner is a good man

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Well to address the original question, the founder of Bens friends who’s AVM burst and spend 3 years recovering went on to Med School and recently started his own succesful company: https://www.nadinewest.com/
If you have not seen his story: https://www.youtube.com/watch?v=EJoOzDlhf1A&list=PLho5Q53hrd4arNr-uM9ToVKSo09Lvg8Cx&index=4&t=0s

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I was recently trying to figure this out too.

Currently working in IT at a government type position, at times highly stress full… either the work load or politics… you know yeah… I don’t know much else other than IT stuff. Its not uncommon when i leave work have my right leg and arm shaky and having trouble speaking properly.

I’m hoping the professionals can figure me out or at least help me manage the stress, if not i’m going to have to find another profession at 41 years old or hope for SSDI

When I had my 2002 AVM bleed, and craniotomy to remove it, I already had more than 30 years of service in my government type job, and so only needed a few more to retire the normal way. I went back part time, and then soon after back to full time, and was able to work the rest of the time that I needed. Part of my job I remembered
exactly how to do it as I used to, but part of it I had to relearn almost from scratch.
Some of my coworkers were fine and supportive, while some were not. As soon
as I got the necessary time in that I needed…I retired. Since then I have sold items
at an antique mall. I love buying at auctions, and then researching them and selling them. I am a collector also, with much experience in this area. Have been doing this
for some years now, and at times I make good money, and other times I get by,
but I enjoy it! J.

Good luck to all of you!

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A post was merged into an existing topic: Friday Filings

I haven’t worked since 2001. Social Security Disability.
Dyscalculia diagnosed after my stroke some 40 years after the fact of teachers telling me I’m “Not applying myself”. All that time I thought something was doing something wrong.
I had my stroke a couple of weeks before my 51st birthday. Physically, you couldn’t see anything wrong with me unless you were trained in neurology. I can’t read anymore beyond a few paragraphs. My memory is gone. I tire quickly and sleep more. That’s the tip of the iceberg.
And still the world turns.

hi all. I was in electrical apprentice when i had my second AVM bleed when i was 18 - lost the power of speech totally. So i had to start from scratch, with my dodgy aphasia. Im now 42, im a graphic/web designer. IT work, so it can be a bit stressful, but im rarely on the phone. Communication is not my forte, but i guess you just do the best you can. I do enjoy my work, for the most part. Probably the only job i could do!

Hey Angeeee!,
I am a federal employee, so I know nothing about stress. I supervise a mail room. My AVM never ruptured, located on the left side of my head just above my ear… I had laser surgery in 2015, in 2018 I started getting daily headaches, severe. I called my PCP’s office the day after a visit with a another severe headache, the triage nurse told me to go to the ER, that was January 2019. The DR’s there did a MRI and flew me to a trauma center. After many hospitalizations for mega doses of IV steroids, my wife and I decided to have the surgery. I was very lucky I only lost a small amount of short term memory. I was told I could lose speech, mobility, and memories. I had a great DR. at the Univ. MD. Medical Center. Surgery is a huge risk and a very big decision, the worst part is my HR department seemed to be wanted me to retire on disability, but I feel I am to young.