I would like to hear from anyone (teens especially) that had a SEVERE bleed & were NOT EXPECTED TO SURVIVE

I am 17 y/o now when I was 15 on Oct.6,2009, I had a severe bleed caused by an AVM that Drs say I was born with. AT 1st the drs said there was nothing that they could do and i wasn’t expected to live through the next few hrs. I was in the ICU for 6 weeks. They embolized the AVM & installed a shunt (mid Nov. '09),before the surgery to remove it 11-30-09. I spent a total of 6 mos in the hospital. I was called “the miracle girl” at the hospital. My vision was greatly affected,along with my ability to walk. I dont have very much independence. My mom has to type this for me as well as text friends for mee too. I had to repeat 10th grade by homeschool,so i am a yr behind all my friends. I am very lonely and depressed most of the time. I feel very left out and left behind by my friends. I rarely see any of them. Has this happened to anyone else?

Hi Niyia, sorry I am not a teen but just wanted to say hello. There are so many degrees of outcome for all of us. There are always people far better and far worse then myself. I try hard to count my blessings… your story in inspiring and you are stonger than you think. True friends will never leave you behind. My avm was 1999 and many things changed over the years… I am now in the process of some more tests to see if there is any new problems … but keeping the faith and enjoying whatever I can for as long as God allows. Take care and there are alot of people here to help …

Welcome to the site Niyia.
In addition to those that might reply here, you can also go to the search box in the upper right of this page and type in teen, bleed and see more results.
Depression is a very common occurrence in AVM patients; I would urge you to get counseling if you are not already. As for physical stuff, do as much physical therapy and work on your own as you can to rebuild.
Best wishes,
Ron, KS

Hi, Niyia! I was 13 when my first AVM Ruptured. The doctors told me that the amount of blood on the brain should have killed me instantly. Apparently, My AVM was formed at birth. I wasn’t home schooled, but my education was harder because one of my side effects was forgetting how to read. In the hospitaly I was in they said the same thing. The crazy thing is the only reason I got there was because an ambulance from that hospital just happened to be at the emergency room I went to. I couldn’t really walk or identify animals and other things. But that eventually changed. However my second AVM had more effects on me. I was 6 months pregnant and the life of my son was at risk. My doctor was able to monitor my bleed and my pregnancy to make the best decision for both of us. Now, I am completely blind on the right side of my body and I have a serious limp. I don’t really dance as much as I used to because it causes too much pain. I have short term memory loss, and I struggle with everyday life. personal question, have you applied for Social Security? You are entitled to that compensation because of your situation. Also, there are assisted living services available. You can have a nurse come to your home and help with everyday things. There are many services for Traumatic Brain Injury. If you want to go to school, there is an organization that will help you pay for it or pay it in full. There are employment services and many other things!

It is very hard for your friends and even your family to understand because they don’t see the problem. All the time I hear “but you look fine” and that makes me upset because I know I am not. There are programs on your computer that will read everything out loud and there are apps for your text messages (depending on your phone) I had a full crainiotomy when I was 13 so I had to go to High School bald with a huge bandage and staples in my head because my parents didn’t want me to fall behind. Personally, I think it would have better for me, but then again I had already finished the 8th grade. I did however, take 7 years to graduate from college, and perusing my MSW is a serious decision to make. I just came home from the hospital today, I had the Gamma-Knife procedure at 11 this morning. It was hopefully my last AVM procedure.

Hi Niyia. There is a sub-group here you may wish to join…http://www.avmsurvivors.org/group/teenswithavms

You may wish to send a friend request to this young woman…http://www.avmsurvivors.org/profile/Alyssa?xg_source=activity

I am a mother of a 15 year old girl who underwent craneotomy at age 12 because of AVM and last Oct. 27 was subjected to gamma knife.Almost 3 years ago now since the operation Nina, my daughter is possitively responding to the treatment except for the continued PT because of the deficiency in her left arm and legs.No pain or even memory lapses were experienced since then and the family is praying that sooner or later she can recover from the deficiency as she will be in her college education comes June 2012.As a mother i always looked forward to make her life productive despite of what had happened to her. Her positive outlook helped her so much and she inspire a lot of friends and the family.Let us thank for the added life given to us. Nothing is impossible under His hands!!!