On sunday aug 27th my 33yr old sister, had a server headache and suffered a stroke. She is currently in the hospital. She is having her brain drained and yesterday they put in the ICP to ck her pressure. She AVM is located on the upper right lope. I dont know the exact size but the doctors say surgery is an option when she recovers and her brain swelling goes down. I never knew of this condition before and am very scared. Can someone please give me some information on what i can expect. She wasnt woken up yet so we dont know how much has been affected from the bleed but the doctors say she is table and is responding to well. They are slowing reducing her oxygen to allow her body to breath on its own. In the morning and the night they try to take her off sedation to see if she wakes up but she hasnt yet. Do these things sound familiar to anyone…please i would love to read ur success with avm
Hi Kneenah! I am sorry to hear about your sister!! Here is a group of success stories-hopefully the link copied right! http://www.avmsurvivors.org/group/s
I hope your sister is ok. I have not gone through a bleed as of yet or an operation, as I am just being monitored for the moment due to the size/location. Please keep us posted about your sister & my thoughts & prayers are with you!!
Thank you so much, I will defiantly keep update the site on her recovery…
You’re welcome!
We have been through a similar story, only my daughter was 6 years old when her AVM ruptured. She went from cartwheeling through the living room to unconscious in a matter of 30-45 minutes. She was hospitalized Jan. 13th. We didn’t see her eyes or hear anything from her for at least a week. We saw her first smile on her 7th birthday, which was Jan. 24th. Her first smile was pretty slow, crooked and short-lived. Those first days felt like they went on forever. Get your rest now, relax and let family and friends help. When she comes out of it, she’s going to need all the support she can get.
She will likely need some therapy for a while as she recovers use of the left side. My daughter’s AVM was on the right side as well, so my daughter’s deficit side is her left side as well.
We have had a few issues since the original bleed (parts of the original AVM that weren’t removed). But right now, my daughter is a busy and active 9-year-old in a regular classroom. She frequently needs a little extra time to think through problem solving. She occasionally has challenges with her memory and getting too easily frustrated. She also rides a bike, jumps rope, loves to play four-square and spends time with her friends.
The honest truth is that your lives will likely be changed forever. I just can’t lie about it or diminish this fact. Nobody ever boldly told me, so I’m telling you so you won’t be as surprised as I was. Your sister may have different feelings and interests about things. Not many 33-year-olds have to fight for their lives. But she sounds like she’s doing as well as can be expected. Relax for now, let her body heal as much as possible. The real challenge will be when she wakes up and needs some extra help for a while. Then she will really need all of you.
My thoughts and prayers are with your entire family. I know ours has affected our entire family, so I’m sure your sister’s will do the same.
Take care. Best wishes!
– Tina
Hi Kneenah!
Your story is so familiar to me and my sister and I just read this together. First and foremost, I am truly sorry to hear that you, your sister and your family have to go thru this terrifying experience and she is also in my prayers! I had a very similar experience as your sister back in FEB of this year and am very lucky and happy to tell you that I walked out of the hospital 1 month after my bleed without any deficits whatsoever and am on the road to a full and complete recovery! The doctors were telling my family the same thing they are telling you and your family. Your sister will need your love and support thru this as mine was to me in so many ways!!! What I can tell you is that your sister will have intense fears and anxieties after learning about her AVM but please tell her about this website so that she can read thru the success stories that keeps us all so hopeful that this is a condition that is very treatable yet terrifying.
Many blessings to your sister!
Michele
Hi Kneenah. You are most welcome to read my profile page. As Marcy Lynn suggested check out the sub-group Success Stories. I know you are worried about your sister. However, there are over 3457 survivors on here. You are no longer alone!
Welcome to the group Kneenah. I’m very sorry that this has happened to your sister. When I had my bleed I was kept in a coma for a while to allow my brain to settle down before any treatment. I had the AVM successfully removed in a craniotomy a couple of weeks later. I don’t know exactly when I “woke up” and was able to communicate with my husband. I have no memory of anything before I was in the rehab unit one month after my bleed. Rehab was important early because I had lost all of my strength after being in a coma for 3 weeks. I know you and your family must be very scared right now. Just know that this is a slow process with as many disappointments as there are successes. Sometimes it’s 2 steps forward and 1 step back and it can be very frustrating. Your sister will need lots of support as she recovers. Encourage her to join this site when she’s able. It has helped me so much. Please let us know how your sister is doing and whether or not she has surgery. I wish you all the very best.
Thank you so much, ur story does sound familiar… The doctors continue to say they have high hopes for her. saw her yesterday and was surprised with the size of the ICP in her head but i knew it was to help her. The doctors really want to wake her up but her swelling goes up and down so they waiting… we playing day by day…we have limited the visiting time with her to 2mins because she is very sensitive she senses people in the room and her pressure goes up… I am a nervous reck and getting headaches from all the emotions but i am thankful my mom and her husband have been in the hospital with her cuz its affected me really bad but i am trying. I am so happy i found this site everyone is so supportive. thank you soooo much for ur story. I am so happy to hear ur daughter recovered well hope she continues to get well…
thanks soo much
Nina
thanks so much, I cant wait to tell her about this site. I my self have been writing a day by day dairy of her recovery so she can read what she went through. My sister is a person that if a doctor tells her something about her health she wants to do research about it like a mad woman so i am sure she would appreciate that dairy.
Were you in a coma, if so for how long?
I could imagine what ur sister went through, I was just telling my best-friend this is the hardest thing ive ever went through. My sister has a 11yr old daughter we are trying to be strong for. I had to call her teachers and inform them. Its just been very hard but she has a good support system we not sure what to expect when she wakes up but we are ready…
I hope u continue to recover… blessings to you and your family
Nina
thanks, glad u are doing well and hope u continue to recover. I will definately update everyone as she recovers. i feel like you guys are all i have to understand what i am going through aside from my family. thanks a million…
Nina
Hi barbara, I am pretty new to this site and have yet to fig out how to use it. How can i read your story on ur page?
Hi Nina. I did a search on the word coma for you on here…
http://www.avmsurvivors.org/main/search/search?q=Coma
You will notice quite a few people on here were put into a coma at first! It gives the brain a chance ot heal!
I am thinking of you and your family. Last year my 33-year-old daughter had an AVM removed from her right frontal lobe. She had been sick with undiagnosed neuro symptoms for three months. When they finally did a CT scan, she was admitted on the spot. It was a very traumatic time but after waiting a month for her brain to settle down from a bleed, her surgeon worked on her for 6.5 hours and removed the AVM completely. While we had prepared ourselves for every eventuality, fortunately she was left with absolutely no deficits. Recovery from this kind of surgery is slow and challenging. if your sister is anything like my daughter, she will be impatient to get on with her life. You need to help her slow down over the short term. My daughter now admits she went back to work too quickly. Instead of rushing back at 3 months, it would have been better to wait until she was much stronger. If I can answer any more questions, just ask.
thanks for ur story… its been really hard on our family. We stopped her visitations from other family and friends bcuz she senses when people are around and her pressure goes up and one thing the doctors want to do is keep her pressure so they can wake her up. Was ur daughter in a sedation coma if so for how long?.. And yes my sister is very independent she has a 11 yr old daughter who she will want to rush her recovery for but she has a very strong and ready support system to let her know healthy recovery is first and her daughter will be ok…
take care hope ur daughter continues to recover
Nina
Thank you Kneenah :)! And my family and I now look at the many blessings that were sent our way during this very scary time in our lives!!! I was that mad woman researching AVMs as soon as I was able to and am so grateful to have found this site!!! I wasn’t really in a coma and can’t recall much until about a week after my bleed, however, they did put me on a ventillator the night of my bleed and kept me very heavily sedated for a few days to help with the swelling and pressure. Keeping a day by day diary is a wonderful idea!!! I found myself asking alot of questions to my family to try and understand what the heck had jut happened to me and am now jouraling my recovery over the past 6 months while it is still fresh in my mind. I sent you a friend request last night where you can read more about my experience with my recovery and how my AVM was treated once you accept the friend request. This is the hardest thing, by far, that you, your sister and your family will have to persevere thru and I have faith that your sister will find the inner strength to fight this demon and have a full recovery, in time. Time is the key word here as recovering from an AVM is a long process both physically and emotionally! As she recovers, she will have a renewed focus on life as she looks back at all that she had to conquer !!!
Please do keep us posted and know that your sisters has many prayers being sent her way!!!
/Michele
Just click on my profile pic of the airplane and my page should come up. I will continue to pray for your sister!
Hi Nina.
No, Anna was not in an induced coma, she was aware of everything and quite at peace. But she vomited every time she moved her head and was heavily drugged. It was like that for a month: it took doctors that long to decide how to approach it and they were also not sure if it was an AVM or hemangioma. I feel for you all because there are so many unknowns: what is it, can they remove it all, will she have deficits of some sort, will she survive. It is a living hell.
Your sister’s story is so much like ours: we had a heck of a time keeping friends away from the hospital. I am sure they thought we were crazy because she looked so well. The day after she was admitted we went in to find 9 people in her room! In neurological ICU. Everyone wanted to come and eventually we had to get staff to put a sign up on her door to check at the desk. She was kept in a specially darkened space for 2 weeks and was in ICU for 4 weeks before the surgery. But we had the same concerns you have: her pressure went up when there was any kind of excitement. In the end, we took matters into our own hands. We limited visitors to her boyfriend and two others a day, and we made a chart to hang on her bedside table as she was so confused as to who was coming and when. There was no TV or music etc. and eventually we had to limit her cell phone use as she was replying to friends’ messages and texts from overseas at night when no-one was looking! It isn’t fun doing that to your adult child. As we were at the hospital at least 14 hours a day, we quickly arranged for a support group who took turns to stay with her,especially at mealtimes. We chose people who were calm and were not upset if she vomited up the sushi they brought her! >
I think it must be even harder for your family as she has a young child. This is difficult stuff to understand for older members of the family, let alone a vulnerable pre-teen.
I do want to stress a couple of things that we learned from experience. Our surgeon was terrific but he avoided dealing with us or talking to us until he had a plan. That was hard, but we understood. After the surgery he called immediately and said he’d got it all, that it constituted a cure. It was amazing. But she suffered a brief surgery-related seizure. That meant no driving for 6 months. Again, a small price to pay. He felt she had been in hospital so long that he decided to discharge her to our care 3 days later. Her boyfriend brought her home, we did not get any information on what to expect in the early days. Her face swelled up like a football, she didn’t sleep, her bowels didn’t work, her voice sounded tinny, a bit robotic, her personality seemed different. We had to manage complex pain and nausea meds, just to find a combination that worked. So, when this is all over, and she is discharged somewhere where she can get the care and help she needs, make sure you know what to expect and have a contact at the hospital. Our daughter’s GP moved while she was in hospital and her neurologist (I use the term loosely as we saw her only the once) retired. So there was only the surgeon. Our discharge was handled very badly as was her diagnosis.
There were a lot of ups and downs along the way, mostly ups. Anna got her car back after six months, then in March this year, she suffered a grand mal while taking a course at a local college. Again, six months, no car. But at least she wasn’t at the wheel when it happened. We hope that will be the end of it. Other than that, her recovery has been incredible, on so many levels she is better than she was before the surgery.
I hope all this helps. If there is anything else, don’t hesitate to ask.
Best to you all: hang in and stay positive.
Vicki xx
Kneenah, my wife had a AVM in April of this year and had a Gamma Knife treatment in April. She has progressed quickly with hardly no side effects. She worked them out with rehab. Yesterday her right hand had weakness and needles, second morning her right hand weakness is worse along with needles. Doctor on call says go to either ER or wait until 0900 hrs and talk to our doctor.
Lots of prayer will help and faith that she will recover well.
Andy
Wow thanks for sharing ur story with me! Sounds like Anna had a tough journey! Happy to read she is showing progress! My sister still stays in coma till her swelling goes down buts she remains stable which is good! They are hoping to start reducing her meds but she is so sensative! We stopped all visitations except for my mom n her husband! I actually stopped going cuz she reacts to my presence! The doctors feel we have a strong connections and it will benifit when she wakes up!!! They mentioned something about sending her home when she recovers n doing sugery in five yrs I don’t get why, I have to speak to the doctor!! So for my nerves have clam down alot because she is showing improvment! My prayers are always with her and I know god is working with her!!!
Take care and I hope Anna continues to improve
Nina