Father with Axonal GBS- No change after 3+ months

    • October 21, 2015 at 5:15 pm

      Hi – thanks for reading this. My family has learned so much in the last few months about this awful disease..

      I am reaching out to this forum for help and answers. My father was diagnosed with axonal GBS in early August. His GBS started out as Campylobacter (stomach issues) for a week and then over night he went paralyzed from the shoulders down. He received a tracheotomy and is now in an acute rehab facility after 45 days in the hospital. He is on a ventilator and has had no movement in almost four months into this disease. He also suffers from pneumonia from the trache so we have been told he cannot receive another round of the IVIG until that is better. He is 78 years old but was in excellent condition prior to this illness. He cannot speak nor move and is so frustrated – its heart breaking. Each day he has limited PT from his bed and respiratory therapy works with trying to wean him from the trache. We try very hard to motivate him but he is losing hope. Has anyone had any experience with axonal GBS and no movement at all for such a long period of time? The doctors tell us the nerves cannot begin to grow while they are fighting the pneumonia but Im starting to feel like many doctors just don’t know. Perhaps the plasmapheresis should be tried?
      His severe case of GBS and his age make his situation very rare.
      I am hopeful someone might have feedback or suggestions.
      Thank you!

    • October 21, 2015 at 8:39 pm

      I think Plasma Exchange should be tried soon. If no ill affects after the first 1-2, then perhaps a couple times per week. It was the only thing that worked for me when IVIg failed to help.

      I was made quadriplegic by GBS/CIDP/MFS. I was barely able to breathe on my own and didn’t need the ventilator, just oxygen and breathing devices. I couldn’t move or speak or close my eyes. I was numb all over. I lost hope and wanted to end it all, but couldn’t pull a trigger if I tried. It took 5 months for some movement to return so I could begin to feed myself again. I too had pneumonia and was placed in intensive care with those awful breathing apparatuses taped to my mouth and face. I hated it that I couldn’t scratch all the places that itched on my face or ask someone for help with that. And the catheter gave me many infections before I regained bladder control.

      3 months is, unfortunately, too early to begin recovery from this awful disease for many of us. Maybe 4 to 9 months is more realistic to feel partial recovery. I’m still in recovery from 2008, but I had a bad case.

      I hope you are with good doctors that have real hands-on experience with this disease. Text-book experts couldn’t help me properly and I remain in a wheelchair because they didn’t act quickly enough with the right treatments.

      What is your location? Perhaps there are more experienced treatment centers near you in case you would like a second opinion.

    • GH
      October 22, 2015 at 3:15 pm

      Plasma exchange seemed to help me when IvIg did little, but it is not possible to say. With this disorder, doctors try a treatment and hope for the best. If the doctors don’t know it’s because medical science doesn’t know.

      In any case, they wouldn’t start PE until the pneumonia is cured. That is absolutely the first priority. I also had pneumonia and my PE was started after it was defeated or very nearly so.

      Isn’t it just two and a half months, not four? I was a quadraplegic for few weeks, but I now walk without assistive devices. I was 63 when I developed GBS (or something similar), and was able to walk without a cane after about a year and a half. Recovery from complete paralysis is possible, but with axonal nerve damage there is likely to be some permanent impairment.

      Frequent visits and support are important. Keep it up.

    • October 24, 2015 at 6:16 am

      Your father’s GBS seems to be quite similar to mine. “Luckily” for me I was unconscious (10/16 – 12/10) during the time I had a trache and pneumonia so I had a later start on the mental anguish he is now going through. My wife tells me that the respiratory doctor was very aggressive. Fortunately his approach worked for me.

      On 12/19 I was shipped to a rehab hospital. At that time I could bend my right arm to touch my ear but no other movement. My left wrist was limp and my right foot dropped. I also had extreme difficulty swallowing on my own which required several weeks of therapy to correct. Also, I did not have the strength to change the channel with a remote. The buttons were too hard for me to press. When I was released on 1/24 I was able to take about 100 steps using a walker and get from my wheelchair to either a couch or a car.

      On 1/29 I began out-patient physical and occupational therapies which continued until 6/30 for occupational and 7/31 for physical. By 3/1 I was out of the wheelchair and using the walker exclusively. On 4/19 (the Saturday before my birthday) I had the first movement of my left wrist. I can’t be as definitive about my right foot since I was always working it with the walker. Though not perfect it is no longer dropped. By 7/1 the walker was gone and I was using a cane with braces. By 8/15 I was walking (with a noticeable limp) and began drive.

      Today, 3 years out (10/15/12) I still limp a bit but I am able to play golf 2 to 3 times a week. I continue to do my therapies for about an hour a day. My left hand remains a bit weak and my right leg aches a bit. I always feel I need to loosen up a bit but can’t quite do it. And the feet. Everyone who knows me stays clear of them.

      If you ever hear that the want to use a “tilt table” REFUSE. It is extremely painful and did nothing to stretch me out. Also, keep in mind that time drags for your father. He can’t believe that he will ever be able to do anything but lay there. He really needs your support.

      Please let me know if I can be of any help.


    • GH
      October 24, 2015 at 3:33 pm

      Eric, the purpose of a tilt table is to accustom a patient who has been bedridden for a long time to being upright again. This is a very important part of therapy. The heart becomes weaker during a prolonged period of immobility, and it must be strengthened in order to stand, or even sit upright. Otherwise, the patient will have too low blood pressure and be lightheaded and subject to fainting.

      It is best to go with the treatment plan of the physical therapist. There is a reason for everything they do.

    • October 24, 2015 at 6:37 pm

      I might be using the wrong term. One piece of equipment I was strapped in as if it was a bed and raised up close to 90 degrees. That was okay. The other I was strapped in and they tried to straighten my legs and stretch out my Achilles tendon. That was unbearable. I thought the later device was a tilt table. I guess I got the names mixed up.

    • GH
      October 25, 2015 at 12:02 am

      I never heard of the second device. That does sound painful. It is necessary to stretch the atrophied muscles and tendons during rehab, but in my case it was all done by a physical therapist by hand. It cannot be done quickly but is done by regular treatment over a period of weeks. There must be some pain involved, but a good therapist will find the point at which there is enough pain to indicate that some good is being done, but not too much to be easily bearable. My therapist was very good at this and I would give her feedback to tell her she could move it a little more.

      Unfortunately, the Achilles tendon can be a real problem if foot drop is not attended to in time. I wore special boots called “splints” to counteract the foot drop and would also put my feet against the foot of the bed to hold them up when not wearing the splints.

    • October 25, 2015 at 8:01 am

      They tried those boots on me too. But, my feet were so sensitive that I could not bear to wear them. The fluttering of the sheets when anyone walk by the foot of the bed was excruciating. I did however, try to put my feet against the foot of the bed to stretch them out. When I could bear having them touched (my right/dropped foot especially) the most effective attempt was when a therapist placed it against their chest and leaned forward. That didn’t begin until mid January, about 3 months in.

    • November 8, 2015 at 9:55 pm

      Hi Bridge0828, My story could be yours, except substitute father for father-in-law, pneumonia for MRSA and bedsore, and age 78 for age 74. Same diagnosis, axonal GBS, still on vent since 9/1/15, and still no motion below neck. Please let me know if you would like to get in touch via email, and we can commiserate together about this sad situation we are both in.