What is the recovery process like for brain stem bleeds?

Hello,

Like all strokes, brain stem strokes produce a wide range of deficits and recovery. Whether a stroke survivor has minor or severe deficits depends on the location of the stroke within the brain stem, the extent of injury and how quickly treatment is provided. You might like to read some more about brain stem strokes here.

I would suggest speaking with the treating Doctor and rehabilitation team to discuss progress as every stroke is so different, as is recovery unfortunately. Is your wife still making gains? If so, that is very positive. Keep building on that progress, day by day, no matter how slow it may feel. The key is to set realistic goals, monitor progress, celebrate achievements and practice, practice, practice. We know due to the concept of neuroplasticity that ongoing recovery is possible, months and year down the track with and ongoing practice and therapy.

Hopefully there will be others on enableme who have had a brain stem stroke themselves or have a loved one with this type of stroke to contribute to the conversation from personal experience.

If you wish to discuss in more detail, please don’t hesitate to call StrokeLine on 1800 787 653 (Mon-Fri 9am-5pm).

Best wishes,

Simone (Occupational Therapist for StrokeLine)

I suffered a brain stem stroke in April this year. The stroke affected my heart, speech and limbs. The stroke caused bradycardia (slowing of heart rate). The first 2 weeks of my stroke was spent in icu fighting for my life. I am currently in rehab learning to walk and move my right arm again. 

3 years since my brain stem bleed. Have had endless physio. Surgery to my face and eye, still have ataxia and nystagmus. Am still trying to walk unaided, recovery is a very slow process. I have bought myself a recumbent bike which I am riding a couple of times a week. Very difficult to stay motivated some days. I wish you all the best Joe.

Hi Joe, 

we had a brainstem Stroke in March 2016, we are struggling with balance and coordination and still not walking unaided, I have found that a personal trainer has helped tremendously and also a feldenkrais practitioner and acupuncture, you are very welcome to send me a message if you want to ask any questions .

Kim

I had a brain stem bleed eight months ago. I had a week of unsteady gait and three months of diplopia (double vision). I was rated fine for driving again after six months.

Fully recovered now.

Hi James and all of you have suffered this incredibly debilitating stroke.  My daughter also suffered a brain stem bleed - two and a half years ago now and spent 10 days in ICU.  She has come from nothing - unable to do anything - she was a full hoist as she had virtually no ability to move and she couldn't speak or swallow for the first 3 months.  But she could move a thumb on one hand and we knew she could hear and understand us.  She also suffered a major set back with encephalitis caused by infection from the cerebral fluid drain that they had to leave in for 10 days while they waited for swelling to reduce.  She has had a tough time. She was 21 at the time of her stroke.  But she is a fighter and we all strongly believe in the power of neuroplasticity.  My daughter has to deal with nystagmus and double vision - she is virtually blind in one eye which also will not close properly due to facial paralysis also caused by the stroke. And she has bout 40% vision out of her good eye. She also has a Holmes Tremor which is very rare and for which she underwent a very traumatising thalamotomy which didn't work.  The doctors advised that in their experience a Holmes tremor doesn't get better it gets worse.  Yet she has finally found a medication that has helped considerably and we can see ongoing improvement.  Due to the tremor she has virtually no use of her right arm and hand but it will now sit relatively still yet in the early days her tremor was extremely noticeable in her hand, arm, shoulder and head.  She is working hard every day to regain her balance and gait and is definitely making progress. She can now walk with a crutch in her good arm and with a bit of assistance from one person (as she still loses her balance a bit).  She has also had major nerve transfer surgery on her face in an attempt to correct the paralysis.  It will be a few more months before she will know if this has worked (it's complicated so I won't go in to detail). James no doubt you have also had to deal with the psychological battles of trying to help your wife stay positive - I am sure all of the sufferers of stroke can relate.  It is an enormous psychological battle.  My daughter has put on quite a bit of weight which depresses her as she is doing everything she can to eat healthily and exercise to the best of her ability.  And despite her poor vision she can still see people staring at her everywhere she goes (she has always hated to be the centre of attention!).  She can speak now but it is hard for her and many people do not have the patience to listen, or assume because she is in a wheel chair and has facial paralysis that she cannot speak or understand  Nothing could be further from the truth. James, you have a long battle ahead but try to stay positive and strong.  Continual improvement should be the goal.  My daughter is still improving and some of her most notable improvements have occurred in the past 6 months.  The standard therapies - physio, speech and exercise science have proven to be instrumental in her recovery but I think depending on the individual personality -  alternative therapies can be very beneficial too.  My daughter looks forward to her fortnightly massage and some of my friends have had great results from non conventional treatments (of course investigate with care).  An ICU nurse told me the significant recovery timeline for stroke is 3 days (critical), 3 weeks, 3 months, 3 years.  I have revisited that many times to stay positive.  I also know recovery will continue to take place long after 3 years and have read many accounts of this.  Stay strong and I wish you and your wife the very best in her recovery journey.

I had a brain stem bleed , it occurred in nsw , I woke up 20 days later , ad was not able to have physio for 2 months , after 2 months they put me in rehab for 6 weeks and said I will need a chair for the rest of my life , and 24 hour care a nursing home can give me.After being sent to Melbourne it has taken me 6 months to get on a list , luckily a hospital has taken me in for rehab , I swathe specialist who hopefully will accept me and start rehab after i get checked out for rehab , one thing I learnt so far in my journey is the health system is slow and pathetic , having a stroke doesn't mean you are a second class citizen , you are a person with needs which it is hard to get in the system. only thing I can say to others is keep  complaining till they finally here you..

 I had a stroke last year , and am paralyzed on the  right side , me hearing, speech and talking is affected, and cant use my leg or hand and arm.