Rare situation of severe GBS case

    • July 22, 2016 at 9:04 pm

      I am writing this post on behalf of my brother who is still currently in hospital. he was hit, and actually run over by a drunk driver and suffered multiple traumatic injuries to his upper body and needed to be airlifted to A trauma centre.

      He was kept sedated for approximately a month, while they were trying to keep him stable to undergo surgery to repair the severe damage to his lung, as well as repair a fracture in his neck. We are so grateful for the success of these complicated surgeries. However, once they started to reduce the sedation medication, the medical team observed his movement began to slow/stopped completely. (He was put on a ventilator immediately following the accident due to the damage to his lungs). It took a period of time for them to diagnose him with Guillain-Barre, as it is a uncommon syndrome to begin with; and to develop this after surviving all his other injuries is extremely rare and unfortunate. Also given the ventilator and sedation, it took a number of tests for them to confirm the diagnosis. He underwent both PE and IVIG treatments once he was finally diagnosed but no immediate responses to the treatment were noted. We are staying very positive and patient however, that with time, he is will regain movement in his extremities and recovery from his current quadriplegia.He is making great progress with regaining strength related to his breathing and has gain some strength in shoulder shrugs. He now completely off the ventilator and with some more time, I believe he will be able to have the trach extubated.

      I am hoping this forum can help with a few questions:
      1) has anyone else had experience with GBS after a traumatic injury?
      2) it has now been 4 months and he does not yet have any movement in his arms or legs. Has anyone else experience with paralyzed limbs for many months, with recovery then happening?
      3) are there signs or anything we could be looking for to signal the movement is coming back?

      This has been an extremely challenging and painful time for him, but he has an incredible sense of humour and resilience through it all. If there is any guidance or insight anyone can share on this unique circumstance, we’d be so grateful.

      Thank you,
      A caring and concerned sister.

    • July 23, 2016 at 10:04 pm

      Hi, I’m Jamie. I’m currently in my 5th month with GBS and only started to regain movement in my hands a few weeks ago. Every case is so different so it’s difficult to put a timeframe on it. I’m 28 years old. Just make sure to help him with passive moveMemes to keeps his joints loose and prevent muscle contractures. They’ve tried electronic stimulation on my quads and calves without any improvement yet. It just takes time for the nerves to regenerate. I’m definitely improving and getting stronger every day. Make sure he tries to exercise anything he can by moving. Even if he can’t physically move his extremities, it helps keep engaging the mind by thinking about movements. Does he get PT and OT?

    • GH
      July 24, 2016 at 1:21 am

      It is known that GBS is sometimes associated with surgery. Presumably this is because the body is more exposed to infection, which is believed to trigger GBS.

      I was quadriplegic not for four months, but for a few weeks, and paraplegic for a few months. My paralysis was complete in my skeletal muscles below the neck, but I was fortunate in not needing a ventilator. My first sign that recovery was beginning was when I was able to move one finger. I am know (five years out) normal above the knees. My only residuals are weak knees and mild pain in my feet. Don’t give up hope!

      My advice is to get as many PE treatments as you can. Recovery does not start immediately after only a few treatments. I had nine and first noticed that I could move a finger after seven or eight.

    • July 24, 2016 at 8:00 am

      I had absolutely 0 movement in my left wrist for 6 months and 4 days(who’s counting). But, the next day it moved a bit. The day after that I had OT and she measured the movement at 19 degrees (which isn’t much but it is not 0). That was late April 2013. Today, I have complete use of the wrist with slightly less strength. I still do my OT exercises daily so that maybe someday all the strength will return.

      Keep up the support. He’s lucky to have you.


    • July 24, 2016 at 9:21 am

      Thank you all for the feedback, it means a lot.

      Jamie- Paul is 25, so close in age to you. He does have PT everyday weekday, and I do range of motion on the weekends with him when the PT isn’t there to help keep things from getting stiff. Glad to hear you are improving and I expect the same for him. We’re just going to keep doing what we’re doing and try to be patient that this all just takes time and we’re grateful he’s alive after everything he has been through.

      GH- thanks for your comments as well. He had 7 rounds of PE and then IVIG but said they wouldn’t see a benefit in doing more this far along, just need to give the nerves time to regenerate.

      Eric- appreciate your insight as well. We aren’t giving up hope and it’s great to hear all of your positivity.

      Thanks again to you all, this is very helpful and encouraging for us.


    • July 25, 2016 at 12:44 am

      I had a nurse tell me that an older gentleman with GBS said he started getting better when he felt a hot burning sensation inside his body and he felt pain. The same thing happened with me. If your brother or your family ever have any more questions, I would lovely answer anything I can. I can send you my personal email if you’d like. Wishing your brother all the best and your family as well! None of you are alone in this fight!

    • July 27, 2016 at 1:29 pm

      Thanks for the perspective Jamie. Paul has actually experience severe pain and sensitivity in his feet and hands since early on with the diagnosis. It took quite a period of time for the medical team to have his pain managed through various medications. There is still sensitivity, but not the pain and discomfort he had in the past which was so difficult to watch.

      We’ll keep an eye out for any burning sensations- I asked him if he has felt anything like that yet and he said no.

      I would love to connect directly and hear more about your story and experience if you’d be willing to share. Just let me know how best to get in touch.

      Thanks again,

    • July 29, 2016 at 7:25 pm
    • August 14, 2016 at 12:12 pm

      Hi Lauren,
      my mom (73) was admitted to the hospital with GBS on december 1st, put on a respirator on december 3rd, and in a coma for a week after that. Today is day 257 in the hospital. She went to rehab on May 1st, but has been back to the hospital 3 times. In May, so after 4 months, she had a (very) limited range of motion in her hands, nothing in her legs. A month and a half ago, so after 7 months, she was admitted again to the ICU (because she’s still on the respirator) and only then did we first notice tiny movements in her toes. By now, she can wiggle her toes a little bit, and move her feet and knees a few millimeters.
      Of course, mom is a lot older than your brother, which explains the slow recovery, but I wanted to let you know that even after many months (research says even after more than a year) recovery is still possible.
      Last week, my mom was taken off the ventilator for the first time, for 30 minutes; she has now improved to be able to do that for an hour, twice a day. And last thursday, she was able to eat something for the first time ๐Ÿ˜€ ๐Ÿ˜€ ๐Ÿ˜€ This is a horrible disease, but the worst part for patient and family is that you need an insane amount of patience. Please hold on – he WILL recover from GBS.

    • August 29, 2016 at 6:58 am

      Hi Marcel,
      Apologies for the delay in responding, but wanted to thank you for your post, the info and encouragement. Really appreciate it. Sending thoughts and prayers to you and your mom that her progress continues. Paul’s weaning from the ventilator felt like a journey of inches, but we eventually got there and your mom will too!

    • October 8, 2016 at 3:24 pm

      Thanks Lauren. How is your brother doing now? Any movement yet? I am running a charity race for GBS research, tomorrow, together with my sister, and will keep him and all of you here in my thoughts.