Hello All. First off, I know everyone is different, but I am looking to see if anyone has had any similar experiences to give me hope of my husband recovering. He had an AVM rupture on 9/29/12 at age 31. He then was kept sedated for about 5 weeks while they installed both a left and right shunt. On november 10th he moved to rehab. He was talking a little and walking with a walker. After a week he had a shunt malfunction and had to be replaced. He was back in rehab within a week on 11/23 (our son's 3rd birthday). The second time in rehab he was much less responsive, no talking, minimal walking, kind of depressed. On 11/29 they did a ct scan and found the left side of his brain swolled so they took the left shunt out and put in an external drain. Testing his csf they found staph, yeast, and ventriculitis (sp?) And removed the right shunt. He was put on antibiotics for 5 weeks and another 3 weeks resting. During this time he was very unresponsive. Maybe a hand squeeze now and then. On January 9, 2013 they put a shunt back in. Ct scan shows it looks great and is draining. But he is still very unresponsive. The doctors want to move him to long term nursing home. Anyone have anything similar that they were able to recover enough to come home? Feeling discouraged.
If I may ask, what do you mean by “unresponsive”. Do you mean he doesn’t respond to stimuli or doesn’t respond the way he did before or how you expect him to?
Hi Melissa. I saw your post on FB first. Your husband maybe depressed. It is a terrible situation but unlike cancer I believe time will be your friend. You have time to make him better. It is not what you wanted to hear but you are in for the long haul. You have the Internet to help you through this ordeal. If he is squeezing your hand then he is still fighting. DO NOT GIVE UP HOPE!
Hi Melissa, I totally agree with Barbara...It takes time to heal when you have a brain bleed. I would find a place that keeps giving him thereapy and you can learn the therapy and keep it going. Talk to him and tell him he can do it....that others have healed...and for him to keep trying! Barbara may be right, he could be very depressed and can't tell you. Stay Strong and Stay Positive, Melissa!
Hi Melissa - I had a similar situation although my coma - if that’s what you’re saying with “unresponsive” - was a bit shorter, and I don’t think that it was medically-induced.
Your husband will most likely be a different person…just from the life-changing experiences, alone…but as I’ve learned, he’ll change for the better, and it will definitely take time -sometimes years - to regain some of the functioning.
Like you said, everyone’s different, and that includes recovery. I think that keeping yourself healthy - both physically and mentally - getting your needs met, etc. will allow you to be support for him.
Hang in there! It will get better - better, not perfect - I’m living proof.
Hi Melissa,
I had my AVM rupture suddenly when I was 10 years old. I was in a coma for 4 days and woke up. The doctors told my mom I would maybe be out of the hospital by Christmas (it happened in July) I was very angry that people were telling me my life would never be normal and that I couldn't do this and that. I'm now 26 and live a pretty normal life.
I perked right up in the hospital when my mom brought my blankets and a stuffed animal from home. I'd say (being a 31 year old guy) your husband probably needs something to remind him of life before the bleed.
Praying for you!
Ashley
Hello All. Thank you for responding, I am sorry for my delay in writting. I am in the process of moving and having a lot of internet issues and for some reason the page does not load on my phone.
To answer the most popular question, by unresponsive I mean, that while Shaun is no longer in a coma he is simply in a sleepy like state and does not respond to stimuli. He would wince if they pinched his finger, but not open his eyes or follow command.
BUT.... yesterday I arrived at the hospital to a whole new Shaun. He was awake all morning and stayed awake the whole 6 hours I was there. He nodded yes to a few things, he rubbed my hand and even pulled my hand to his lips for a kiss. He also played rock, paper, scissors with me (this is a big deal to me. We have been together for 10 years and everytime we play we ALWAYS tie.) He still managed to tie with me.
Today he seemed a little more tired and did not follow commands initially. I let him sleep and sat next to him and held his hand and read a book. Next thing I know my hand is being pulled up for a kiss again, and he was awake for the next 2 hours before Ihad to leave. I called our kids and they talked to him (he still is not talking) and he seemed happy. I suggested next time we can try skyping and he nodded. He nodded yes and no to a few things and made faces at my jokes.
So happy to see any reaction from him. Feeling encouraged. Where there is life, there is hope.
SUPER HURRAH!
Yehhhhh.....You should feel encouraged! Keep us informated on how he's doing! Yehhhhhh!
Heya Melissa! The update on your husband is AWESOME! Thanks for sharing that with us. Please know that a lot of people (including me) are here to support and encourage you on this journey. Keep the faith, it will only help your husband. Best of luck to the both of you! :J
woohooo!!
Hi melissa, my husband had a bleed on feb 19, 2012 and had similar circumstances. he had two embolizations, brain surgery to remove the avm, and a shunt placed. He was only 34 at the time. After 19 days in icu, he was moved. he was unable to speak clearly, chew, sit up, stand, walk, really anything. After 30 days we left in a wheelchair. we are coming up on a year and he still is limited in what he can do. he uses a cane and walks very slowly. other area however have continued to improve. the most difficult part has been his personality. while he doesnt feel he is different, he is. the one area he does really well is his relationship with our daughter. i gave birth two days after we got home from rehab. he shows an immense amount of love for her so i know its in there. anyhow, yes, he can improve. it will likely take a long time and be very difficult so you are going to need to have the strength of many to get through. but i know you can and he needs you now more than ever.
Thats excellent news that he is responding now...as discussed everyones AVM is different and treatment/recovery is always going to differ BUT i can agree that time is important when going through these times & keep up being positive because he has everything to live for with kids, family etc.
God bless you all and keep us posted as we are all here for everyone going through these tough times.
I just watched Dr. Taylor on oprah's soul series, thought her AVM recovery was very inspirational. It took her a very long time to be responsive to the world around her, but she made a long but amazing recovery. She mentioned it was key for her to have people who brought positive energy around her, gave her energy. Blessings, be strong.
http://www.oprah.com/oprahradio/Jill-Bolte-Taylor-on-Oprahs-Soul-Series-Webcast%20
That's terrific! Good luck to you both.
Hello. Rough 2 days for Shaun. He woke up a littel yesterday, but for the most part slept or cracked his eyes. Today he cracked his eyes, but not much else. Hopefully he is resting up to be active for me tomorrow.
On a happy note our newest nephew was born today, Matthew Jacob Shaun Pearce, named for his uncles. So I had a happy night meeting my new nephew. Of course now I have baby fever. We were actually trying for another baby when the avm ruptured. I have never seen anyone talk about children after an avm rupture.
I know that part of the body and the brain our different areas, but does a brain bleed cause problems with "loving" or "baby making"? Trying to be PG here.
hi melissa,
every recovery is different with its own journey, you'll find most answers will be 'wait and see' and it depends, which is stressful and tough but have faith. With a brain injury, the body focuses on healing and drains so much energy esp in the first 6 months and beyond, but esp in the beginning. I love your 'baby making' reference, nice PG ref! you can have a completely devastating injury and go one to have kids, but you won't know what the challenges will be so think of it as one of many 'i don't knows' you'll be thinking about in the journey and accept that as 'what it is' and try to not add to stress with problems that 'could happen' because why waste precious energy. Just know that that door isn't close today, but if that becomes a challenge, you know you'll be able to deal with it. Sucks, I know, but I'm thrilled to hear the progress you're seeing.
Hi Melissa my husband David had an AVM rupture Sept 22nd 2011 aged 37, he was left in a coma for 10 days and did not respond to anything or anyone, we were told he had 10 minutes left to live, so say our goodbyes!!! i could not and would not accept this, i slept in ICU with David for 10 days till he opened his eyes. Whilst in ICU David had fluid on his brain, a shunt was put in for this, he then caught pneumonia, and C Diff, he was ventilated and a tracheotomy for 7 weeks, docs said if he survived, he would have no quality of life and would need to be tube fed as he had too much brain damage ! he was in a terrible state. After he left hospital 11 weeks later he went to a rehabilitation center, supposed to be for 6 months but after 3 falls in 6 days i demanded i take him home, i had a bit of a fight on my hands as no one thought i would be able to cope as Davids full time carer. He was unable to do anything for himself, he had memory loss, unable to walk, barely move, unable to talk, and had lost some of his sight but i took him back to the rehab center every day from 8.30am till 4.00 pm 5 days a week until his discharge last July. Today we are 16 month down the line, David can talk, spell, tell the time, his memory is about 80% back and can walk as long as someone is beside him as his balance is bad, i know David will never be the person he used to be but he is still my David. I look after David at home, we have 4 kids and if i said i dont miss our old life i would be lying, because i do badly, but every day that David learns something new is an amazing day, yes sometimes i just want to hide away and cry as the healing process can be slow sometimes but progress does definitely happen, never give up hope and try and be as positive and patient as possible, i pray every night for my David to make a full recovery. Stay strong
Hello Melissa
I am so sorry to hear about your husband and you must be feeling scared. I had a stroke due to five blood clots and was in a coma for about a week then a few months later a few more strokes then a I was worse lots of head pain all the time- few more months the doctors found the avm/fistula. I was 43 and in great shape,working 40+ hours, family, volunteering etc normal life. When I was in the coma I could hear everyone talking and when I awoke and could not talk it was confusing to me to have all the doctors a parade of them since what the stroke is very rare less than 1 in a million but thankfully my husband or a family member was there. My husband choose to stay home and take care of me and we both thought I was going to be in need of lots of help. all I wanted to do was sleep. He told me this week I was watching cartoons when I first was home...which is not normal...then I started to watch the old movies on TMC and it was soothing to me. I did not want to talk to anyone cause it was hard to do it and I was depressed. I was craving grapes and jelly which I guess your body craves sugar when you are in pain. My husband did a no carb diet for the most part I also wanted Baskin Robbins ice cream. Your husband is in there trust me he has been through so much you need to touch him talk to him . My husband also started to give me turmeric pills which I think helped and I recently gave them to my friends dad who had a stroke a year ago and after a couple of months he started to improve. It helps with memory and inflammation. Please keep us updated
Angela
I had a similar issue and i guess trying to be PG here i would say that the stimulation would increase the flow of blood to the brain...a year after my AVM ruptured & my surgey had been done my wife did fall pregnant but miscarriaged 6 weeks into it...so its hard on everyone and its in Gods hands to watch over us.
I did ask my Neuro & GP about kids etc and was told it was fine to try but to just take it easy while trying lol ...trying to be PG once again! BUT it shouldnt effect that area at all if that answers your question also just things take time to heal up and get into that swing of things.
God bless