Brain Stem Stroke

[Belle22]

My brother, who's 55, recently suffered a Brain Stem stroke. At this time, he's unable to eat & has a feeding tube in his stomach. He has trouble swallowing. He has no sense of hot/cold on his left side. This is not his first stroke, but the first was a different type & only affected his right side with a tingling sensation.

I guess my question is what can he expect for the future? Once these areas are affected, will they ever come back? Can anything be helped with rehab?

He was very optomistic at first...before he understood what happened. Now he's becoming very depressed. I am very, very concerned about him. Being the only breadwinner in his family, he's very worried about this...but that's not for this message board.

What are his options for any type of recovery...or are there any?
Thank you!

[Curtis_Smith]

Yes !!! Whatever You Do  (Dont pay attention to Bad News That the Drs Might tell you !! Just Focus on your love one and God !!!!) Talk To God Daily & Thank Him For bring your love one this far  !! And Tell you Love one how proud you are of (him or her) smile ,laugh  and talk to them daily !
And watch How God Steps in ! It Might start off slow But just know that Everyday adds to progression !!! :)

[michniak]

is your Dad aware or awake?  Can he hear you and acknowledge you at all?

[suhara]

Hello,

I came across your comment as I was browsing for some info on Locked in stroke of brain stem for my dad , who is currently in ICU from the past 5 days. I would like to know how your dad is now, since it has been almost 3 years now. Please let us know.

[Prophet5926]

Go to you tube and look up Reuven Surall and see his videos. He had a brain stem stroke and had the lock in syndrome and today he is whole. Walking, talking, sleeping everything is good. He believed God!  

[travelyourdreams7]

I suffered a brain stem stroke when I was 18. I am 23 now. I have two bachelor's degrees, speak 3 languages (incl. english). I am a paraeducator for first graders and a concert pianist. I walk, albeit not straight or stable, but I walk. I use a walking stick or someone's arm, I even travel quite often to foreign countries. I have no problem breathing. I do choke on food. But I still eat solid food.
Anyway, what I'm trying to say is...there's hope. Please don't give up.

[iownfrodo]

I had a stroke October 1, 2013 while teaching.  I was in ICU and had tPA protocol. My CVA was in my brain stem. I've been told that my personality has changed, my voice is unrecognizeable, I've lost a lot of the function on the left side of my body,  my body no longer  regulates sleep.  It is now 2:41 AM, I've taken Ambien, and still can't sleep.  It has been like that every day since the stroke except for a few days when I had the flu and a high fever. I have double vision and my neuro opthamologist  said that prisms will not help me because my problem is neurological, not with the lenses. I am supposed to be wearing a patch. I have balance problems, and wearing the patch makes that 100 times worse.  Anyway, I just wanted to say that I have improved and your loved one will as well.  I was on soft foods for I don't know how long.  I'm still on mechanically soft.  But I keep trying to work myself back.  My family is totally non supportive.  It's amazing to me. When I get well, I'm moving far away from them. Somewhere near the ocean. Anyway, a girl has to have a dream and a plan.  Best wishes to you all.

[skhamiltonusa]

My husband had a right side brain stem stroke Jan. 2013. Don't let the doctors over medicate. If they can't prove why they are giving him something request that it be dropped. My husband is only on a blood platelet thinner and a low dose aspirin. Some of the drugs they tried putting him on he did not need once out of the hospital environment. They were keeping him sleepy, lethargic and dizzy. He was in the hospital until April 5 of 2013. He has been doing speech therapy and physical therapy since that time. He still has a PEG tube and cannot swallow at all. His balance is still not good because of the left leg. He has a lot of secretions that he has to spit out. We did try getting a botox treatment injected into his CP muscle in his throat. It did help with the secretions and he did talk clearer. It only lasts 3 months though. It did not correct the inability to swallow because he needs a different procedure for that, a laryngeal suspension lift.

[jenn_jarrell]

Hello, My Dad just suffered from a brain stem stroke as well and your story is very inspiring. were you responsive when it first happened? and what were the drs telling your family? our drs are telling us we have no hope and to make arrangements. but he is being responsive, like when i show him a thumbs up he does it back or when i say daddy squeeze my hand, he does that as well.

[storm55]

Hello, I am so glad my post encouraged you. God bless you for taking care of your nephew and loving him through this. Its my understanding that locked in is not permanent ,so hope is always there. As much as medical science knows about the brain, there are things that will remain unknown to man. I have been told that sleep is the brain repairing . We keep the room bright and some sound going always.  We get him out of bed every day and sit him in his favorite chair.  PT and OT come in and work with him.  I don't turn away any therapy. Since this stroke happened to our family my children and I have been driven to help my husband. He always said "we are four and we will remain four" . Today he smiled for me.!

[teenteen43]

Hello my name is Terina. I am very interested in talking with you. I have a nephew that had a brain stem stroke in 2010 and is still suffering with locked in syndrome. I read your post and it is very encouraging. I take care of him daily and would love to get some tips from you.

[storm55]

Hello ,  My husband had multiple strokes at the brain stem august twenty second 2013. Its been just about two months. The doctors gave him no hope. He was on a vent and had a peg tube and limited consciousness. I was told to think about his quality of life. All I could think was that he is alive. He is my husband an I love him.  He deserves a chance to recover. He was pushed all most immediately from the first hospital to a so called rehab. He came off the vent in  three days of beening there. He still has the trach because his level of consciousness didn't alow him to manage his own secretions. Because of his sleepy state he was pushed from rehab to home. Since being home he is more alert and awake. He has shown movement in all his limbs where doctors said there would be non..  We play his favorite music and talk to him all the time. Believe in the power of god and love.  The lord has the last say!

[ShelliK]

Looks like you posted a couple years ago, but would be very interested in learning how you are doing. My boyfriend had his BSS in Nov 2011 and he has come a really long way, but I am constantly looking for ways to help him more. His biggest problem is alertness...sometimes he is right there and other times he is locked in. It's so sporadic I keep trying to figure out how to help him be more present, more of the time, so he can benefit from the little bit of therapy we are able to get for him, or do ourselves. Please, I'm sure we'd all love to hear how you are doing and what you did to get where you are.  Thank you.

[ekunina]

Please tell me what happened a year after his 2005 stroke.  My mother suffered August 2012.  Thank you.

[rujuta]

How long did you have a tracheostomy tube?

How long did you have a PEG tube insreted into your stomach?

My father, aged 57, suffered a brain stem stroke on 29th Sept 2012. He is at home now. Doesn't need oxygen. Can breathe on his own. Had a trach for one month. Can swallow only 2 spoons of water, has a PEG tube in his stomach. He has full paralysis except for head/neck movement and eye blinking.  

Can you share your story in detail with us for us to draw inspiration?

[emilia2012]

Hi,
I have post a comment concerning my mother condition. Do you think after a brainstem stroke my mother will breathe again? Do you know a specialist in this field?

[emilia2012]

Hi,
My mother had a brain stroke she is 66. she was strong women and independent. Now she can't breathe by her own, eat, walk, talk, we don't even know her capability. The doctor is saying they can not do much for her. It happen this summer. Do you think there's hope for my mother? I really try to believe one day she's going to breathe again or a doctor can help her to regain at least 85% of her capability.I will do anything for my mom to come back to us. I am ready to travel any where in the world to find the doctor that going to help her.

[hlocain]

My mother has just been diagnosed with a brainstem stroke and is in a locked in state other than wiggling her toes or blinking her eye.  How severely were you affected at first?

[Patani]

Your story seems very similar to what happened to my mother in March of 2009. How is he now? After all of this time, have any major changes occurred? Thank you.

[kinger5]

I had a brain stem stroke up a mountain in  italy so it took a while to get me to hospital.I couldf'nt swallow or even sit up,apparently i am lucky to be alive! they got me on my feet(but i woulndnt call it walking) and eating in the first three weeks. when i got back to England my rehab really started. I was in hospital for 6 months(but felt longer) I can walk long distances ride a bike  and horse eat, talk and go to the gym. so don't give up have been looking everywhere for stories of inspiration but can't find any. i am hopeing that once you are better you wouldnt bother writing. but anyway looks like im lucky. So im writing this to give hope to all of you in recovery.  

[wolf1945]

I too had a brain stem stroke in 2010, Christmas.  Sound sleep is one of my issues.  I do not like taking drugs for sleeping.  Is this a problem for you as well?
I AM 66 YEARS  old and went though intensive therapy for 4 months.with almost complete recovery. I still have some balance difficulty but I am told that will improve with time.  This is my second stroke but the first stroke was mainly some facial paraslysis which was corrected with surgery. I am taking a host of drugs and wonder if that is the problem with my not being able to sleep.

[chuck807]

I had a brain stem stroke, Aug, 2008, with help of wife and therapy, I have come far, but still have some issues would love to hear from you.

Chuck Taylor
***@****

[stanleefeiyew]

Thank you for giving us hope!
My dad, 65 years old, suffered brainstem stroke (dt basillar artery thrombosis) on the 2nd of Feb, 2011, he is now in the locked-in state, fully conscious but unable to move all limbs, only blinking of eyes, on trachy as well with NG tube feeding.
I hope my dad can recover with time, you strengthen the hope, our family will pray hard and have faith, we will work hard and not give up.
To all other stroke patients and family members, stay strong and have faith, which i keep telling myself.
Another thing, some may consider acupunture which i read very helpful as well.

[SKP2121]

My cousin in law suffer a brainstem stroke.last 2 days. He is now unconcious, lying in ICU. Doctor said nothing can be done !!! and doctor also said, the percentage to do surgery is 0% !! due to the location is deep inside the brain.Doctor's comment is like cant rescue d. Now he is lying on the bed inside ICU,and is depend on the breathing equipment to breath. What should we family do ? is there anyway to recover him ? Anyone meet this situation before ?  

[lil_one2010]

God bless you, you just gave me some hope for our good friend, that had a brain stem stroke on Feb, 28, 2008. He has all your symptons exepet he has never been in coma. good luck to you and your family.