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: 58
Latest Activity: Sep 9

Discussion Forum

Recovery

Started by Nicolette Haley Aug 25. 0 Replies

Hi, I am new to this. I found this group and thought I would join. Back in February of 2014, my boyfriend had his bleed. He all of a sudden complained of a sharp pain and next thing I knew he was in…Continue

Speech/Writing Issues

Started by Skye. Last reply by Skye Jul 14. 2 Replies

Hi, all. I'm writing on behalf of my boyfriend Jackson, who had a freaking huge AVM explosion on the left side of his brain on January 1, 2014. He was in an induced coma for a month, during which…Continue

Seizures after Craniotomy

Started by cmd91. Last reply by andsotheysay Jun 21. 2 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 Msamberxo on June 29, 2014 at 4:05pm
Skye I agree it is extremely isolating I was 22 when I was finally diagnosed after 7 years of physical and mental pain and searching for a dr who would take me seriously! This page is very helpful to find information or for me it is a place to vent and let go of the daily struggles where I know other understand because most people don't and can't understand what we go through.
Comment by Skye on June 29, 2014 at 1:42pm

Hey,
My boyfriend had a massive bleed from a huge left-lobe AVM in January. No one knew it was there. He had the full range of issues--right-side hemiparesis, expressive aphasia. He's been recovering very well, but he still has a lot of trouble with writing (by which I mean sentence construction/words, not the physical challenge--although that's hard, too, of course). He had surgery to resect the AVM in April, which was hugely successful (anyone in DFW Texas area, I HIGHLY recommend Dr Anthony Lee). But it would be nice to connect to other young people (and your significant others?) who have been through this, or something similar. It's pretty isolating when the only people around who have any concept of what has happened to you are 80+. Things are a lot different when you're our age.

Comment by Mountfort77 on June 18, 2014 at 10:36am
Hey guys
I dont really know how the group works, so I'm just going to go ahead and introduce myself! My name is Mountfort, I'm turning nineteen in a few weeks so I thought I might as well join this group! I was diagnosed in jan 2013 (brain AVM) and received gamma knife treatement in March 2013. Soooo I felt really depressed for a while and then somehow I started getting better and that was awesome, still is (thought maybe I could help someone feeling depressed too). Was crazy finding this network! Thought I was like the only one in the world with a AVM (hahah), peole usually dont really understand what it is that I have and they're kinda freaked out so they tend to avoid the subject hahah :) I thought that maybe I could help someone, get some advice, and it's just nice to know I'm not the only one going through this.
Love, m.
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.

 

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Results of 3rd procedure

Posted by Svetlana on September 10, 2014 at 2:49am 3 Comments

It's now 2 weeks after the 3rd trip to Arkansas that was the most successful. Dr Richter did lasers and bleomycin injections (he chose bleomycin again because it showed better result than doxycycline), it worked very well, with no complications,…

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