People in their early 20's

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People in their early 20's

This is for the people in their early 20's to connect and share their stories and all around just chat.

Members: 43
Latest Activity: on Monday

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Seizures after Craniotomy

Started by cmd91 on Monday. 0 Replies

Hi everyone, my name is Caroline and I had my AVM removed Feb. 14 2013 and I've been on Keppra ever since. I'm in college and last month I had my first grand mal seizure during an exam. I'd only had…Continue

Early Detection

Started by Michael. Last reply by Movie_girl Mar 21. 3 Replies

In my case, I'm glad for my AVM to have been discovered and treated at a young age. Having had these medical events occur early in my life has done two (main) things for me. Looking at the…Continue

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Comment by Michael on March 31, 2014 at 5:41pm
Kayleigh, my AVM was discovered at 15. Duri g one of the surgeries to correct it, on my 16th birthday actually, I had a stroke that affected me in much the same way as the rupture you experirnced ( paralysis on my left side, couldn't catch balance, even when sitting, significant memory loss, and hemianopsia , loss of peripheral vision.) I was left handed, now right handed In fact, I currently use my right to go in my left pants pocket.
If nothing else, please know you're not alone.
Furthermore, I downplayed what I've been through, bit now I think I'm gonna adopt the title 'survivor'
-Michael in Nashville, TN.
Comment by Kayleigh O'Connell on March 22, 2014 at 6:11am
I know the feeling hun, people see that things are done differently and automatically assume "aww you poor thing" I used to want to scream at people.. We are all the same but some of us have our little quirks lol hope your well x
Comment by Movie_girl on March 22, 2014 at 6:01am

hey you guys,

I'm 22 and paralyzed on the entire left side of my body. My AVM ruptured back in 2003. This caused my hemiplegia. I couldn't do a thing. I couldn't eat, speak, walk, sit, .... . It was terrible. But I survived and made the best of it. Now I can almost do everything. I learned to live with my left arm and leg being "lazy". I may do things not the way they should be done. But I don't give a damn about it. People seem to stare at you, think there's something wrong with that girl. But don't have the courage to look me in the eye and ask or even talk to me. It used to drive me crazy.

Comment by Kayleigh O'Connell on February 7, 2014 at 11:36pm
Hey all,

I'm 23 n have known about my problem my entire life... I'm finding it difficult to get in touch with anyone with a similar sort of problem as mine affects my entire right arm hand and neck.. They have come to the conclusion that no operation or treatment can help and I've been under a pain management team that can't seem to help me either is anyone in the same boat

Hope to hear from you

Kayleigh
Comment by Michael on September 10, 2013 at 6:45pm

Cmd91, I can tell you my AVM was discovered after I had a seizure, my first one, when I was 15. 7 months, 8 embolizations later I had a 23 hour craniotomy split over two days. Three more surgeries after that (operations dealing with hydrocephaly, installing a shunt, then repositioning the same shunt), I had(what I thought was) my surgery on my 16th birthday. I had a stroke, lost all feeling and motor function on my left side. I was in medical rehab for 5 months before I really regained any use of that side. ( I was left handed) I also was diagnosed with left homonymous hemianopsia. Now, at 23, I've got full use of my left leg again, it is weaker lacks fine motor control. I can feel my left arm and hand again. Like my leg , Less strength/motor control but I can say with a degree of certainty not immediately, but it does get better.
As difficult as it is and as cliché as it sounds, the largest thing is to give it time. While passing time, working the affected limbs will help the recovery.

Comment by Brian on September 10, 2013 at 2:34pm

Welcome cmd91! My situation is very similar to yours. I was 18 (now 21) when mine in ruptured, no idea it was there. I was sleeping when I woke up and was mumbling sounds that didnt make any sense. My right side was completely numb. So my roommate called 911 and they rushed me to st. francis hospital where I was in a coma for 15 days. When I woke up from the coma, I lost my speech and ability to move my right arm and leg completely. After almost 2 years of therapy, I am now walking without anything, just a little limp and talking almost perfect just a little slow. I expect my speech to continue to improve, not sure about my arm and leg. My arm has definitely come along the slowest, as I have no movement in my hand. My AVM was in the left frontal lobe and I had 2 craniotomies, 1 to relieve to pressure from the blood and 1 to remove the AVM. I have seizures now due to the iron in the blood. I guess it reacts with the neurons in my brain. Anyways, my doctor and I are trying to get them controlled

Comment by cmd91 on September 9, 2013 at 11:11pm

Hi everyone! I'm very new here, and I am 21. I had a stroke on February 2nd caused by my AVM rupturing. I never knew I had the AVM as I would only get headaches that I thought were normal. My AVM was on the left parietal lobe of my brain, and I had an embolization two days before my craniotomy which I had on Valentine's Day. I was in the hospital for a month and learned to walk and talk again with therapy; the hardest thing to get back has been my right hand, I still can't write or even type that well. Have any of you experienced problems with your fine motor skill? And I'm happy to finally be able to talk to people with similar situations.

Comment by Mia on August 19, 2013 at 4:04pm
Hi Jaana!
We're almost in the same boat.
I also have a big AVM on the right side of the brain and my leg is not fully functional. My doctor told me that i shouldnt do anything cause it's too risky to do radiation treatment (big risk to make my whole left side paralyzed). Tomorrow I'm going on a meeting to see him and i don't know what to say. Hard to live with the fear of getting a brain bleed.. I'm always afraid when I'm alone. We can just hope that better machines and stuff is invented so we can be treated and get rid of it! :)
Lots of hugs!
Comment by Boston Celtics on May 30, 2013 at 3:30pm

@ Michael Reed

What do you mean paralysis? Complete paralysis or a disability? I have cerebellar ataxia.

Comment by JaanaRämö on April 24, 2013 at 1:47am

Hello.

I am 21 living in San Francisco where I study illustration at CCA.
Anyway, December of 2012 I had a brain bleed and found out that I've been walking around for 17 years with a massive AVM on the right side of my brain. I've had a cerebral aneurysm on my right side at age 4. Leaving me with partial paralysis. I am no longer paralyzed but I do have weakness on my left side and left hand no longer functions. Anyway, I'm still pondering treatment. Its a really tough choice for me to make. The only options I have are to get multiple radiation treatments(with the chances of making things worse) or just leave it like it has been all these years. Focusing on school and giving my all to illustration and dealing with being in love with someone that you cant be with and other life things has been extremely tough. I'm not sure what to do anymore. I feel really lonely in a way that I can't explain.

Please let me know if you have any kind words of wisdom or anything at all really! ^.^

Thank you kindly,
Jaana

 

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Walking Again

Posted by John P. on March 18, 2014 at 8:00am 4 Comments

My craniotomy to remove my AVM was early in the first month of the year, but at first I could not walk at all and

many who had the same operation I am sure had the same

problem. After two months in the hospital I was able to

use a…

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