Jan 24
Jenjane1973 , Posted on SUPPORT NETWORK Blog

Massive Hemorrhage stroke in brain stem

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My best friend had a severe hemorrhage stroke in her brain stem and another one in her cerebellum. She was unresponsive for a couple of months as well, but we've also battled insurance issues with any real physical or speech therapy. She is a veteran. She has been moved so many times the last 12 months, going from rehab facility to skilled nursing centers, then to hospitals because of her lack of proper care in the nursing centers. Her progress is very slow. She is almost completely paralyzed on the left side, still has a trach and can't talk, eat, or anything. However, her cognitive skills are all 100% or close. She is so depressed, she cries all the time. I made her a communication board which is somewhat helpful. And she has gotten to where she can shake her head yes or no and her right arm is starting to get to the point she can use it some. I'm also wondering what the chances are fir further recovery. I was also told that most recovery progress is during the first six months after that not likely. She has started trying to pull herself up but no major progress in several months. It's the most heart wrenching thing I've ever gone through to see her like this. She is only 52. Anyone with similar stories or advise would be so helpful. 

  • JKViggiano

    First, I am so sorry for you and your friend.  Stroke is devastating but to have substandard care only adds to the devastation.  Second and most important:  RECOVERY DOES NOT END AT 6 MONTHS, A YEAR, 2 YEARS OR ANY LIMIT GIVEN!!  Recovery ends when the survivor decides to stop working on recovery.  It is long, slow, tedious, and difficult, but it happens.  

    My husband suffered a massive stroke at 51 and was also told he had a year to recover.  Fortunately, we had a neurosurgeon who helped us see past the limitations.  He said his experience showed that those who wanted to recover most, recovered best.  We threw off the limitations and kept working. We are 10 years post-stroke and while he is still disabled, he has far surpassed all expectations. 

    There is a wonderful book called "How the Brain Changes Itself" by Norman Doidge.  He writes about how much recovery can happen just thinking and visualizing and imagining muscles working.  It is a great book with lots of great information.  I also wrote a book chronicling our experience (Painful Blessing by Jill Viggiano). I kept a general timeline of my husband's first 5 years of recovery in the appendix. As the caregiver, I needed to know recovery was possible after the short timeframes given in the medical community--I thought others might need it too. Just for some perspective, I moved his arms and fingers and legs for him in those early days when he couldn't move while we talked about what it would look like and feel like if he could move them himself.  Slowly he was able to participate more and more.

    I always say Recovery is a Team Sport.  No one with a brain injury can recover alone.  Your friend is lucky to have you.  I pray she receives the proper care she deserves. I don't know if this will help but you might contact your senator with facts on her lack of competent care. You might also research other avenues in the military to lodge a complaint and seek better care.  

    In the mean time, keep hope!!  Move her limbs!  Include music if she likes music!  Take it on like competitive sport with goals and benchmarks.  (We set all sorts of goals and benchmarks and I don't think we hit any of them in the timeframes we set BUT we always moved forward.  We were always better off.)

    Good luck and God bless.  jill

  • 1Christina

    My husband of 27 years had a severe stroke to the left side of his brain at age 47., he went in the hospital for and ICD to be implated under his muscle due to a low EF, procedure went great he had dinner talking etc, I was to pick him up the following moring.  Sometime in the middle of the night he had a unwitnessed fall on the floor and had a severe stroke.  He has severe brain damage on his left hand side, he also had a small stroke on the right the following day., he was in a coma and ICU for two weeks , they did remove his brain flap due to swelling.  The doctors told me he was not brain dead but he would be a vegetable they told me I need to consider taking him off of life support the first week of his event., I refused to do so, well my husband sure showed them wrong. Weeks 3 and 4 my husband has made HUGE progress, he is off the ventilator follows comands, tryig to talk over the trach, follow commands, his right side is numb there is miminial movement at the moment.  He understand us nods his head, gives me kisses., it is so heartwrenching, to see my healthy boby builder husband be so fraile and helpless.  He tends to lean to the stronger side when he sits in his chair, this I am so depressed, I miss him dearly, I miss my strong husband.  The doctors are shocked with his improvements, I just wish I could get more information, no one knows nothing about the fall, I have no idea what kind of stroke he even had, I wish you and your friend the best for her to make a full recovery.

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