Would love to hear your story

My sister is 13yrs old, back in October 2015 on her way home from school her Unknown AVM ruptured. We were told the bleeding was so significant she wasn’t going to make it. With prayers & support she did make it through the surgery to drain the blood. She now has a permanent shunt in her head and is in rehab. She has a trach but still unable to talk, she’s not too alert but can focus on something briefly. She’s walked with support of a tram machine but overall; her progress is amazing. I become so grateful everyday. Lately, I’ve just been so worried. Wondering just how much of herself she will ever be. Will she be able to focus? Talk? Does she know what’s going on? Can she understand me? So I stumbled upon this site and it’s amazing. I just ask if someone could shed a little insight on their experiences?

Hi Alexa (sorry I'm guessing that is your actual name?)

Sorry I'm not able to answer most of your questions, but I would ask that if you haven't already done so, please read this page from this site http://www.avmsurvivors.org/page/treatment

My neurosurgeon has advised me that the brain has a great power to adapt to overcome problems.

Apparently from my basic reading it's quite normal that people who have suffered a major neurological event may seem to quickly make a lot of progress with recovery, but after a while the progress slows down but doesn't stop.

I may be wrong as I'm not a doc or anything, but I don't think the mechanisms by which the brain can adapt to issues are fully understood which means sadly our neurosurgeons are limited in how much they can give opinions to how each person will recover.

I would suggest it would be wise to speak to your sister's neurosurgeon to get their opinions as they will be the best informed, but unfortunately they probably still won't have all the answers.

I am sure you have found this site as you have been reading around the net - sadly AVM's seem such a rare condition that there doesn't seem to be much information on the internet, and what is around doesn't apply to each person and their condition.

I can only try and imagine how hard this time must be on you and the rest of your family. Fortunately your sister is still with us, and I pray she surprises everyone with her recovery.

Hi

I had a bleed in November 1986 and my fiancee and father were told to get funeral arrangments going as I wasn't going to make it through the night. (I had stopped breathing and had to intubated) Luckily after receiving a temporary shunt I recovered. It was temporary as I pulled it out myself in my sleep.

I had impaired vision and terrible short-term memory for sometime afterwards but these both improved over months. I began reading books excessively which my doctor emcouraged and was able to even go back to college in January 1987 where I excelled in my studies. The brain is a mysterious thing that I believe can adapt. My vision corrected in about a year (I had to read with one eye until then) and I developed almost a photographic memory which really helped in mys studies.

Every case is singular and I hope/pray your sister can recover further.

First let me add my prayer for her recovery.

I had my bleed, also from an unknown AVM when I was 53, and family was told
that I would soon die or be brain dead. They do not know everything.
It required 4-5 years for me to come back, but it happened. Can your sister
also come back? Who can say for sure? My best wishes for her recovery.

Hi,

How lucky for your sister to have you. My daughter, at 19, had an AVM rupture, also unknown, and she was in a coma for two months. I talked to her all the time. Eventually she began to do little things to let me know she was there . I noticed she would raise her eyebrows. So, I began to ask her to raise her eyebrows to let me know she was there when I talked to her. Little by little she has gained more and more. Keep talking to your sister, she can hear you. Keep looking for little signs. My daughter had a trach for 7 months but eventually was able to get it out. She does talk some now and her personality seems similar in many ways. She is still working on many things to get better. If you have any questions let me know. My daughter's AVM was in her cerebellum and pons area of the brainstem. Best wishes to you.

My sister was 43 when, in October 2013, her AVM ruptured. It was a huge bleed but thankfully she survived. Also has a permanent shunt, and spent about 6 months in a rehab facility. She came home to her husband and three young children, but she was wheelchair bound. Memory is still an issue, particularly short term, but we see improvements all the time. She goes to outpatient therapy about 2-3 times a week. She is walking now with little assistance. Slowly, she is making a comeback. We push her to do more of the daily tasks she was once doing. She helps her kids with their homework every night. Her doctors (from Columbia Presbyterian in NYC) say she's in the beginning stages of her recovery and we will continue to see improvements. We hope and pray that they are right. It's a journey for her and for her loved ones, but I can tell you that things are getting back to 'normal'. Don't spend too much time worrying about how much your sister will recover. No one can answer that. Keep supporting her, and encouraging her. It takes time but she is young - she will bounce back. I tell my sister all the time that she is my HERO. What strength they truly have to come back from this nightmare. All my prayers and best wishes for you and your sister. It will happen for her - you'll see. Sally

Hi. I am an old timer here. I had an AVM bleed in 1959 when I was 8. I was in a coma,and they told my family it was bad. Back then they really were not sure what they were dealing with. A craniotomy was performed, and the AVM had ruptured. It was in my right occipital area in the visual cortex. I lost a lot of vision to the left in both eyes. I fell a lot, but never thought about it once I got better. As I got a little older, I did realize how much I did not see. There are a few other things that are different about me and the way I am.I often wonder what I would have been like or done if not for the AVM.I remember a lot of what went on, but I will never know what I was like before the event. I don't think many people can get an answer to that, but a lot of brain injured people wish they could.I am now 65, doing good, was a paralegal for a lot of years, have two sons, and am grateful I did make it.

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