My brain stem stroke

BMJ 1996; 312 doi: http://dx.doi.org/10.1136/bmj.312.7035.917 (Published 6 April 1996)
Cite this as: BMJ 1996;312:917

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At the age of 45 my mother was at work and had some tingling in her fingers, then numbness, then her hand starting turning colors. She went to the hospital was told she had a blood clot and needed surgery to have it fixed. No surgeon available at this hospital so was transported three hours away. I met her there, because at that time we did not live in the same state. I arrived about 15 minutes of her going into pre-op and I still remember today the nurse saying "don't worry hunney it's a simple procedure she will be out in about an hour". Of course after an hour there was no word, then two, and now four hours before a doctor came out to speak with me. He said to me very casually, " The surgery went well, but we believe that your mother may have had a stroke, either during the surgery or in recovery". Well, I have heard of a stroke and people recovering with slurred speach and one side or the other not working properly, but nothing would ever prepair me for what he said next. I asked to see her and he explained that she had a Brain Stem Stroke, was on a ventaltor, and was still not consious and may never wake up. He said that if she did wake up, with therapy the most she may ever do is shrug her shoulders. Well as I sat and took this all in I thought to myself that he's mistaken that my mom was young and was going to wake up the minute she new I was there. I was the only child of a single mother and in her eyes I was everything and as I would soon learn I was all she had.

After about three days she did wake up. After I called all of our family, her mother, father, sister...we waited, at the hospital for her to respond. All of the reflexes were involuntary, and no speech, she just looked at us and seemed to be crying along with us. Well after 9 months of hospital time, ICU with Mercer, and rehab I brought Mama home. I had a husband, a 7 year old daugter and a 1 year old son, no nursing background and no idea what the days to follow would consist of. But rehab said she was making no improvement so it was time to go. She had a trech, peg tube, catheter, she could speak a few words and move her right hand just a little.

Today it has been 8 years and she has been through a lot in those years. Her condition has not improved at all, but for Mama and our family we still have each other. On a daily basis I can go in her room and ask "are you going to get out of that bed today?" and she will crack a big smile and nod her head yes! She has not and will not give up. We use to spell out words with her nodding and me pointing to the ABC's on paper but over the years I just seem to know what she's saying and needing just by asking and her nodding. I asked her if I did the right thing when the doctors wanted her off the vent and I refused, and every time she smiles and nodds yes. I now have a 16 year old daughter, a 9 year old boy, and a new baby who is one, and when they go in the room and kiss grandma and fight over who grandma loves the best, she smiles. So if she can still smile after all that she has been through, we can all learn a little from her.

We still pray that one day it could happen and she will be healed.

Competing interests: None declared

Competing interests: None declared

Heather L Kim, caregiver

23838

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28 June 2009

My son had brain tumor at age 5 and stroke in stem at age 6. one year later slowly progressing. I feel your pain and know what your going threw. fINDING LOTS UP COMING articles re stem cells to repair damage. we are getting a diaghrarm pacemaker in 9/09 to replace vent. It may help him speak again,

Competing interests: None declared

Competing interests: None declared

Brett Fegel, T

08816

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My husband suffered a brainstem stroke on Dec. 10, 2007. He was 33 years old. He had high blood pressure and was driving home from work and felt very dizzy. He drove to his doctors office where they called an ambulance and he was taken to the emergency room. The Drs thought he was having a stroke but could not confirm it on CAT scan so they tried to lower his blood pressure and stabalize him. They told me that the risk of giving TPA was too high since they were not absolutely sure he was having a stroke although he had all the classic signs. He could talk to me then although slurred but things went rapidly downhill through the night.

His breathing became more labored and what started as left side weakness became total paralysis. He was intubated during the night and a trach put it. It was not until about 3-days later when an MRI finally confirmed he had a stroke. I initially thought this was not that bad as he was so young and surely he could recover from a stroke and he didn't have some mysterious illness. Then the Drs explained to me it was in the brainstem and he would lucky to even survive and would probably remained "locked-in". I read about locked in syndrome and I was devestated. At the time our kids were 3 and 1 yrs old.

About two months in he was able to move the muscles in his face and made some of his first sounds. He spoke his first words to me on my birthday, Jan. 30th. He had some medical setbacks but spent about six months in rehab altogether and came home from the hospital in Oct. of 08. He can talk where most people can understand him. He still has a trach. He cannot eat yet but should have another swallow test soon to determine safety. He can move his head and all his facial muscles and he can move some of his fingers and toes. He has some new movement in one of his wrists and trace muscle contractions that come and go in his arms.

He is receiving home visits from OT, PT, and speech. He has bouts with depression definitely and it is really difficult for him to depend on others for all his needs. My biggest challenge is to keep him motivated and positive to work hard at his therapy and to believe that he will continue to improve. Thanks for sharing your stories as I will read them to his for inspiration - he also has eye trouble - so he cannot read.

My best advice is to fight for all the help that you can get from the doctors, nurses, rehabs, your insurance company or medicaid, state agencies, etc. Do not give up. It is exhausting but you must keep pushing so that you do not fall through the cracks. It is a long hard journey but do not give up.

There is so little information out there on brainstem strokes and for survivors and caregivers. Does anyone know of a website dedicated specifically to brain stem strokes? I cannot find one and have been interested in starting one but do not have hardly any free time to do so. I think that the brainstem stroke community is grossly underepresented. I can be reached at mjh_jbb@yahoo.com if anyone is interested on starting somehting or has ideas on how we can get better information, research, rehab etc. for our loved ones.

Good luck to all and hang in there!

Competing interests: None declared

Competing interests: None declared

Mindy Berg, Caregiver

34653

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17 November 2008

I too had a brainstem stroke in April of 2008. My doctors thought I would be dead or a quadrepelegic. I am neither and here I am on the way to recovery. I am only 37.

Competing interests: I had one.

Competing interests: None declared

Angel Milligan, none

none

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18 September 2008

I was driving a 40 ton truck on the M6 when i had my brain stem stroke, i was very lucky i have been told by the doc,s.I was only 49yrs old when it happened and a heavy smoker and being a truck driver not very active, also i used to eat junk food when i got the chance to eat and i was about a stone overweight all these things contribute to a possible stroke.

I am still on long term sick but i am determined to get my life back(with a few changes).I had the same symptoms as Mr Grant but as i said i was lucky in that i have total control over my body.I want to let people know that you can survive a stroke and live a normal life after.

Good luck to Mr Grant.

Gary Frank Brierley age51yrs.

Competing interests: None declared

Competing interests: None declared

GARY F. BRIERLEY, not working

ol4 1pb oldham

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31 August 2008

I am 26 and sufferd a brainstem stroke while skiing in my native province B.C. I started throwing up at the top of the lift minutes after I lost my balance and my right hand formed a claw, I had no idea what was happeningg to me and niether did the paramedics. They called for S.T.A.R.S. air ambulance and I was take to the Golden hospital. The one doctor had no idea what was going on and at one time told me that I just having an anxiety attack. After consulting another doc in Calgary it was decided I was to go there. The doc in Calgary wanted me there ASAP from STARS the Golden doc insisted an ambulance would be fine for the three hour trip. 8 hours after arriving at the Golden hospital we departed to Calgary. 1 hour into the trip I started to crash my breathing decreased rapidly and my heart jumped to 250 b.p.m. So we turned around and headed back to Golden. This time there were 3 doctors and 1 helicopter waiting for me, which was good because my breathing had ceased and they had to intibate. I awoke at the foothills hospital with my girlfriend standing over me and was told I had sufferd a stroke. I was unable to move or speak had double vision and had a trake in my neck.. I was told that I would be seven months in the hospital. My first month there I caught ammonia and had a major neck infection caused by the trake. After I started getting some movement back I was put in a rehab unit were I did 7 hours therapy a day. Because of my age, shape and determanation I was walking in 3 months and fully functinal in 6... Despite popular demand and everyones wishes I went straight from the hospital to living on my own...IF YOU DO NOT PUSH YOURSELF YOU WILL NOT PROSPER....Currently I go to therapy 15 hours a week and if it wasnt for my Ataxia and lack of sensation in my hands you would not know I suffered a major stroke......Soory about the spelling

Zak Salter, Calgary Canada

Competing interests: None declared

Competing interests: None declared

Zak Salter, skiier

t2t 4v3

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4 August 2008

I suffered a brain stem stroke on 05/18/2008. I was more fortunate than you that although I am still mobile I suffer from short term memory loss, trouble finding simple words, weakness on my left side, swallowing, blurred vision, veritgo, headaches still,etc...My primary physician can't understand why I'm still having trouble with my speech. He doesn't seem to comprehend that half my face and tongue I barely even feel. He says that I must be deeply depressed and something else must be going on. Well the depression is correct. I have been out of work, unpaid for over two months, I am a 911/police dipatcher and can't react fast enough to even answer the phone at home before 4 rings. My employer seems to think that I should be better by now because I've been out so long. People don't seem to realize that the brain makes its own decisions. The only way I can discribe what it does for me is that sometimes I'm trying to find a word and its there on a posted note in my head and I see it in my minds eye just drifting away. I can't catch it or grab it, it just goes away. Not very good for my line of work. My family is very supportive and they say they understand but when your 50 yrs old and get lost at the hospital cafeteria and cry until someone finds you, thats childlike. Your story, although more estreem than mine makes me feel that I'm not alone, I'm not crazy and I will get through this. Time is my friend. And the only one that really knows what's going on in my head is ME. Thank you for sharing your story with me and my husband. It truly was a blessing. Ann Engle.

Competing interests: None declared

Competing interests: None declared

Ann C Engle, police dispatcher 911 operator

police department 63074

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27 July 2008

I suffered a brain stem stroke March 13, 2005. I had been a little dizzy for about a week prior but did not pay attention to it. On Saturday, March 12th, I my stomach became upset. I vomited and went to bed. Awoke the next morning feeling fine. As I prepared for church, I leaned over to grab the trash can in the bathroom to empty. That is when it happened. I was barely able to make it to my bed. Thinking I could sleep it off agin, as I had the night before, I layed there. This was about 7:30AM. By noon I realized something must be wrong I called my doctor who instructed me to call 911. The point here is time is of the unmost importance. Had I known, and went to the hospital, I may have prevented this. Instead, I have weakness and paralized partly in the right side. I have had several operations on my eye. But there is always hope. Never give up. You have proven this. Recovery happens long after doctors and so called "specialist" say. Thanks for "hanging" in there, you have helped others more than you will ever know.

Competing interests: None declared

Competing interests: None declared

Larry L. Bernard, Retired

Home/70816

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25 July 2008

My 17 year old daughter Joanne suffered a brain stem stroke during her last exam on 17 June 2008.She was taken by ambulance to th Ulster hospital in Dundonald where she spent the night before being transferred to the Royal Victoria Hospital in Belfast.It was at this stage the stroke was confirmed.That day she went through surgery which involved the clot being removed by inserting a coil through her groin up to the brain stem which was then 'screwed' into the clot & pulled out.The skill of the surgeon astounds me.Joanne was taken to Intensive care where she spent 3 weeks during which time she was rushed to theatre on 3 occasions due to bleeding in her lungs caused by the tube in her mouth which was helping her breath (complications are common & expected in intensive care).After a week in Intensive Care a consultant told us that he could'nt see 'any good outcome' & started to talk about her being 'locked in'.Naturally we were devastated & left to contemplate the future.Eventually the source of the bleeding was found & a coil inserted to fix.The sedation was stopped & she quickly came round.

This was difficult for my wife & i as at first she just lay there only able to communicate by blinking yes or no but she was alive.Then the miracle began, there wee small movements in her right arm & leg & she started to cry (hard to watch) but there was emotion.Joane was moved to High Dependency Unit on 9th July where she continued to make progress.She added laughter & smiling to only occasional crying & small movement in left arm & leg began with right side becomming stronger.On 15th July Joanne moved to a Ward where her progress has continued.Just over 5 weeks since the stroke she is speaking, albeit weakly but getting stronger & more coherent every day & is eating breakfast, lunch & dinner (pureed).The physio's have had her on her feet taking small steps & we hope that she will be moved to Musgrave Park Hospital in Belfast which specialises in rehabilitation when a bed becomes available.All the medical staff who have nursed or treated Joanne are amazed by her progress,long may it continue.Finally I would like to thank all the staff in Intensive Care, High Dependency & Ward 4E of the Royal Victoria in Belfast & those who treated her in the Ulster in Dundonald, we will never be able to repay you.The National Health Service is alive & well in Belfast!

Competing interests: None declared

Competing interests: None declared

Derek Johnston, Bank official

Bangor Co Down

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You sure haven't lost the ability to share your story so eloquently! In September of 2004 I also suffered from a stroke in the brain-stem immediately after undergoing the clipping of a 8.5 centimeter aneurysm in the same location. During the first few years of recovery from the stroke so many of the negative things experienced stay fresh in your mind and you are sure these memories will never fade...in spite of any brain damage suffered! No amount of memory loss seems to erase the awful recovery memories. Eventually some things do fade though, but I think after reading your story some of those highlight returned! Especially recalling the feelings of giving up all of your physical privacy! How terrible to experience! You have came such a long way in your recovery. Don't let a designated time stand in your way. Sometimes it's an unbearably slow process. Last year at this time I was first able to read a computer screen without double vision creeping in. Fortunately I got involved with the support group of Daily Strength. It has tons of categories for assorted afflictions. Members (free membership) are then able to become friends with other members that share in the condition. Sometimes people that have experienced similar things are the only ones that can truly understand. Anyhow, my whole point in mentioning this is that it wasn't until February of this year that I began to feel somewhat normal! Because of the stroke, separation from family and few friends I became very reclusive. However, being able to begin communicating with others helped open the door to my facing the world. Hopefully you will continue in your recovery and things will speed up! I wish you the best! Debby

Competing interests: None declared

Competing interests: None declared

Deborah S. Allen, transitioning

Home 28144

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