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Thread: Guillain-Barré Syndrome or Spinal Stroke?

  1. #1
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    Guillain-Barré Syndrome or Spinal Stroke?

    My boyfriend, who is only 21 and very fit, was in class on May 8, 2009 when he started having chest pains and could not control his arm movements. His professor called the ambulance and he went to our local hospital. In about 4 hours he could no longer breathe on his own and could not move anything past his neck although he can feel everything!! His brain was also not effected. They have done the plasmapheresis, 4 times, and I know that takes time to show any improvements. His spinal cord is really inflamed, they tried steroids but his skin broke out so they stopped them after 3 days. As of today, he is now able to rotate his shoulders a little, control his bowel movements (they removed the catheter today actually, he just tells you when he needs to use the restroom) swallow, (eat and drink, although he is still on a ventilator) his lungs are improving greatly, and his reflexes seem to be coming back... What do you think prognosis wise I should expect? I plan on being there for him regardless, he's my prince, but I just need to know any additional information. Both of the diagnosis's are so rare that I can't seem to find a lot of information on them or a specialist that knows a lot. He is now at Vanderbilt hospital, about an hour from our hometown, but they will be moving him to the Shepherd's clinic in Atlanta on Wednesday.

    Thanks,
    Jamie

  2. #2
    What was the pattern of progression of his paralysis? With GBS it is usually distal to proximal (feet and legs first, moving up the body), while that is not common in a spinal stroke. What does his MRI show? Was the possibility of transverse myelitis also mentioned?

    Regardless of the cause of his paralysis, it is good he is going so quickly to the Shepherd Center as this is one of the leading rehabilitation centers for those with paralysis (regardless of the cause). Learn all you can, ask lots of questions.

    You might want to look at more information about transverse myelitis, which you can find at this URL: www.myelitis.org

    (KLD)

  3. #3
    I agree that your boyfriend's case sounds more like transverse myelitis then Guillain-Barre. You describe an inflamed spinal cord, and you don't see this with Guillain-Barre - and KLD is right - the story you tell about how his symptoms progressed is not typical for Guillain Barre. Are you sure they didn't say transverse myelitis was a possibility? Did they do a spinal tap, or a nerve conduction study? These can help differentiate Guillain Barre from stroke and from transverse myelitis.

    Fortunately, he is at a pretty good hospital now so his neurologists should know how to care for him properly. And Shephard Center is EXCELLENT and he will get better once he is there. But you should keep asking questions until you feel like you understand and get the answers you need. And by your tone, it sounds like he is getting a little better, so let's hope that the plasmapheresis is helping.

    It can be frustrating in the hospital, since often the doctors are not as familiar with how long the recovery can take. But please be hopeful and encouraging to your boyfriend. He will almost certainly improve, and it may take a long time so your encouragement will help a lot.

    Good questions now are...

    1) If they think this is transverse myelitis, are there any other treatments that he could benefit from now, before he goes to rehab?

    Ask them if they are considering trying intravenous immunoglobulin (IVIg) or cytoxan? Some observational studies suggest that patients who present with very serious cases (an initial examination of ASIA A.... hopefully the neurologists know what that means!) benefit from cytoxan in addition to plasmapheresis. If he is getting better, they may be hesitant to use cytoxan, since it is a strong chemotherapy treatment with side effects.

    2) Why did this happen?

    Did they look in his spinal fluid and blood to see if he had any sign of an infection (eg. viral/bacterial) that could have set this off? Did they look to see if he had any rheumatologic/inflammatory disease that can be associated with transverse myelitis (eg. lupus, rheumatoid arthritis, sjogren's, sarcoidosis)? Did they check to see if he has an antibody against NMO, which might indicate that he has a disease related to multiple sclerosis?

    3) Do they really think this might be a stroke?

    This would certainly be very unusual/rare, and often you can tell by his examination and his MRI if it is a stroke..... if they are done very carefully. Of course, if they think it could be a stroke, they need to look into the possible causes and make sure they treat those causes to make sure more complications don't develop.

    But almost regardless of the cause, know that it is WAY to early to know how much better he will get and how fast, but it is certain that he will improve. And that he will need to work very very hard in rehab to optimize his recovery. So follow every new movement, new sensation and celebrate.... the fact that his bladder function (? and bowel) seem to be returning is a really great sign.

    You're doing a great job in looking out for him, and trying to find more information. Good luck.

  4. #4
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    It started in his chest and he wasn't able to control his arm movements first, then it spread to his legs in maybe 6 hours or so.


    They did a spinal tap and results were inconclusive. They did rule out meningitis, etc.


    The first MRI didn't show any blood clots or anything just the inflamed spinal cord, the second MRI showed a blood clot and the third MRI did not show a blood clot.

    Transverse Myelitis was mentioned but ruled out on Monday, May 11th.

    Nerve Conduction Study- I saw where they should do this but no, not yet, hopefully it will be done in Atlanta...

    Thank you all for the information... I'm praying for the best outcome.

    Is there anything that they can do to make the inflammation go down on his spinal cord? Could his spinal cord stay inflamed for forever or does it eventually go down on its own? The longer its inflamed, the worse the prognosis is? Sorry for so many questions but the nurses just have to give you worst case scenario or at least it feels like it and I'd rather read the bad news then hear it out loud.

  5. #5
    While it is hard to predict the future precisely, remember that your boyfriend will very likely improve GREATLY over the next weeks/months and fortunately he will be going to a very good rehabilitation facility. While this may be frustratingly slow at times, you should definitely hope for the best and encourage your boyfriend like crazy.

    Do not focus on the "inflammation" of the spinal cord, as that sign alone on his MRI is not a great predictor of the future.

    Actually, plasmapheresis is helping to address the "inflammation" or abnormal immune response that your boyfriend is having. Steroids, IVIg and cytoxan are also strong anti-inflammation/anti-immune system medications and the use of these depends more on the diagnosis then just the finding of "inflammation" on MRI.

    So the doctors right now think that he has had either a stroke or GBS? It is true that a repeat lumbar puncture and nerve conduction study can be helpful for diagnosing GBS so they should be doing those for him if the diagnosis is unclear. You cannot really see "blood clots" on MRI..... so maybe what you are telling me is that they actually saw a change on his MRI that seemed to be consistent with a stroke? And then that went away over time? If this is what they think he had, it is very important for them to try to explain why he may have had the stroke, since this is very rare and they want to be sure that they treat any underlying problem that could have led to the stroke. Because the last thing you would want is for him to have another one!

    I'm sorry these neurologic illness are so complicated. If you can, try to pull one of the neurology resident doctors aside and ask them to explain to you again what the tests showed, what they think is going on, and what the remaining treatment options are.
    It is ok to ask to have things explained more then once. This stuff is very confusing.

    What would be great for you to do now is to think about protecting your boyfriend from developing anymore problems that could slow down his recovery and rehab in the near future. It is essential that he does not get pressure sores on his skin from lying in one position too long without moving. The nurses should be turning him from side to side every two hours and he should be on a special low pressure bed. Make sure the doctors know this and the nurses are doing this. We had to often turn my father ourselves, as the nurses wouldn't do it, I'm sorry to say.... But fortunately, if his sensation is not affected this will help him from getting these sores because he will be able to tell you when he is uncomfortable and when he needs to turn. Ask when the physical therapists will start to see him in the ICU, and ask them to teach you the range of motion exercises to help keep his joints limber -- and do them with him every day. And talk to the nutritionist and make sure he is getting all of the protein/vitamins/calories that they recommend (this will help his recovery).

    Remember, unfortunately the nurses and doctors often don't really have a clue what happens after these spinal cord injuries, and how long it takes to recover. Do not listen to their horror stories. Most GBS patients in general do well and get better. Spinal cord strokes are more rare and can be more serious, but it will still take months and even years to find out how much he will recover. Meaning there is still every reason to be extremely hopeful. Now your boyfriend needs the best supportive care to get him safely to rehab. Then the hard work.... and progress begins.

    Remember - listen to the doctors/nurses with a grain of salt. The ones at rehab will probably answer your questions about the future a little better.

  6. #6
    Hi JStewart804:
    I commonly see the members on this forum who suffer a spinal stroke from something other than surgery, say that the reason for the stoke was never identified. My Dr. gave me a theory, but told me it was only a theory based on the fact that they could not find anything else wrong. For me, they found the strep throat virus in my blood and they think the cell was too large to pass through the vein, stopping blood flow to the cord… that was their best guess. My stroke was similar to your boyfriends; it started in my arms and within hours I could not walk or breathe. People who suffer spinal stokes have an good chance at recovery. I hope you boyfriend the best!

  7. #7
    I don't know why I got the SCI but the only thing I know is that it started in my toes and was going up to the sensation T11/12 in two hours. But I have heard in here that it couldn't be a spinal stroke because it started that way so then I am curious again what happened.

    No pain, only loosing function and got numb in my legs and hips up to T11/12, I still have the same numb sensation. I got back some function (2-3 and I did walk) but started to loose it again 30 years later. My spinal shock was about 2-3 month and I did not have any function at all that time.

    I have heard a spinal stroke is painful too. When I started to get back function it started in the toes and my toes have been a 5 all the time and still is. The rest is still 2-3, but now I can't even stand.
    TH 12, 43 years post

  8. #8
    Junior Member allen54's Avatar
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    I had my spinal stroke in Oct,07 and the pain was unreal.I still today take alot of pain killers and never regained bowel and bladder function.I was also told I would never walk by a jerk of a Doctor that I ran into again a year later.I told him he should go back to school or do everyone a favor and quit when there was 4 other doctor near him

  9. #9
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    spinal stroke

    My boyfriend, Dustin had a spinal stroke on May 8, 2009. He was in class at Western Kentucky University when he started having chest pains and couldn't control his arms. His professor called the ambulance and by the end of the night Dustin couldn't move neck down and needed assistance with his breathing.

    Things he can do below his neck: eat/swallow, (he does have a trach) he has feeling everywhere, a burning/tingling sensation in his arms/legs, he has some reflexes in his legs, and he can control his bowel movements.

    It has now been a month and he is at a rehab facility in Atlanta, GA called Shepherd's. There are no significant changes and the doctors said if they don't see any changes within the next few weeks then Dustin will more than likely be quadriplegic and I just don't understand.

    I am looking for someone that has gone through the bad news with the doctors and still came out on top. I am looking for advice, words of wisdom, options, anything to get us through this tough time.


    Thank you,

    Jamie

  10. #10
    Jamie, I combined your two different threads about your boyfriend's spinal cord stroke so the responses flow better.

    The Shepherd Center is one of the leading spinal cord injury rehab centers in the country. He is lucky to be there.

    His cord damage appears to be incomplete, which is good, but only time will tell if he will get any more return. It is common that in vascular injuries that return may continue for 2 years or more, but no one can tell when return may stop.

    The best thing to do right now is to maximize the function he has with intensive therapy and learn as much as you both can about how to keep him healthy in spite of the SCI. Getting back to life, school, work, etc. is also critical. At this point, there is nothing anyone can do that will cause return to occur, and it is not due to any lack of will or hard work on his part (or on the part of his rehab team) that he has not had more recovery.

    Come back and ask as many questions as you want, and get him on-line here too as soon as possible.

    (KLD)
    Last edited by SCI-Nurse; 06-10-2009 at 02:31 AM.

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