Dad has GBS, vented for 2 weeks – Chances of Walking Again???
AnonymousAugust 29, 2007 at 6:44 pm
First of all, I’d like to thank everyone who has posted so much of their experiences on this site. It gives hope to those afflicted with this syndrome, and also encouragement to those supporting them.
Short story: My father was hit with GBS on Father’s Day this year (ironic, isn’t it?). He turned 59 years old 2 weeks later while heavily sedated, paralyzed, and on ventilator. He’s now in a rehab hostpital, and slowly recovering, but I’m wondering if he’ll ever walk again. The doctor told him last week that there was no nerve activity below his knees, so he’d never walk again. I refuse to believe it after only 2 months since he was put on vent. Here’s a long version of the story, to provide a little more background re: his symptoms and milestones.
On the saturday evening (June 16th), he felt tired, and had some tingling in his hands and feet, but thought he might have hurt his back when using a large drill. He’s had alot of lower and mid back problems since he was in his 30s, so he didn’t think much of it, and decided to rest.
The next morning (June 17th), he was feeling a little weak, and the tingling and pain was starting to rise into his legs and arms. My mom and him left their cottage, and drove to emergency, and spent the entire day there having tests done, since they thought it might have been a stroke. Blood was fine, tests were fine. They sent him home, and ordered a nerve conduction test, which they would call him later in the week to make an appointment. The worst part of this is the physician said it was probably a virus that was attacking his nervous system, and it would pass !!!
Monday (Jun 18) passes, and he isn’t feeling much different, still weak, and tingling. Then Tuesday but then numbness and tingling kept climbing, he had wobbly knees and started feeling numbness in his face. Later on in the day, he wasn’t able to walk, so he knew it was getting worse, so my mom called 911, and the ambulance brought him to emerg from home (he has been in the hospital since). They thought it was a stroke (still), so ordered all the same tests, bloodwork, ecg, the whole works. Nothing. They start putting him on pain medication, because at this point, the pain was intolerable (he can tolerate a lot of pain, and it was worse than his worse back injuries over the years). Between Wednesday (Jun 20th), and the next Monday (June 25th), they performed 2 different MRIs, one lumbar, and another thoracic, thinking it was a pinched nerve, or busted disk or something pressing on his nervous system. All tests came back negative… so they told him on the Friday that he had osteoarthritis, and that he would have to live with the pain. They already had him on morphine every couple of hours, and it wasn’t doing the trick, so they went a step higher, I can’t remember what it was, but it was killer stuff. The pain was so intense, he would cry (which I’ve never seen him do). They tried to keep him comfortable over that weekend, and didn’t do much of any testing to try and figure it out. During that weekend, he deteriorated pretty bad, not able to get out of bed anymore, and losing more feeling as the weekend passed. After the last MRI on the Monday (June 25th), they were at a loss, but said they wouldn’t give up on him, and keep trying to figure it out.
I’m living 4 hours drive away from my parents, so I’m receiving all these updates from my sister and mother via telephone.
By this point on the Monday (25th) I’m losing faith in the hostpital’s abilities to diagnose and treat my father. Morpheine and stronger narcotics aren’t a long term treatment.
So I start searching the web on all his symptoms, and find that it had to be peripheral neuropathy… had to be. I was convinced at this point… I keep searching, and find that it’s either diabetes (which my father is not diabetic, and all his blood tests showed fine), or GBS. I start to search more on GBS, and find this site, and others with info on it, and diagnosis. I ask my sister to put the doctor on the phone so I could talk to her, but she wasn’t around. I gave my sister this message:
“Tell the doctor my father is suffering from peripheral neuropathy, and to get a neurologist who specializes in PN, immediately. Test his blood by spinal tap to look for elevated proteins that are causing this attack on his nervous system, and shearing the myelin from his nerves. Have you ever heard of Guillain Barre Syndrome?”
So my sister calls me on Tuesday morning, and said she finally got the doctor who was assigned to him and gave the message. The doctor got defensive, and said “it could not be GBS, because his symptons did not come on immediately. He would have been paralysed within a day or two max. Tell your brother that the internet is not a good place to self diagnose, and he could easily be misinformed”.
I was pissed at hearing this, so I told my sister that if they don’t do the lumbar puncture, I’m going down there myself with a lawyer the next day to get it done. I couldn’t believe they had not done such a simple procedure to test for this. Every site I read on GBS, he presented the symptoms to a tee, which included the 1-2 week onset.
So while I’m fuming over this, the doctor orders the lumbar puncture the Tuesday (26th) night, and they confirm GBS the next morning, and procede with IVIG (5 day) on Wednesday (27th). The doctor tells my sister that she apologizes to me, and said that I was right in my assumption. LOL
I just wish I could have researched his symptoms earlier on so they could have figured this out earlier, but I can’t blame myself. We have a system where health practitioners are supposed to do their best job to protect us and preserve our health, and sometimes we blindly put that faith into them until it’s nearly too late.
I realized by this point the progression of the syndrome, and its worst symptoms, but didn’t tell my sister or family, because I didn’t want to put them in a panic that he would probably end up on a respirator and feeding tube. I only would ask my sister how his breathing was, and she would respond, it’s ok, why? 🙂 I would say I was just curious… but asked them to keep a close eye on him to check his breathing just in case it got any worse than losing arms and legs. The long weekend was coming up, and my hectic schedule had an opening. I took that Friday off (29th) so my wife, 9month old daughter and I could go visit for the weekend, and give my mom and family some distraction and support.
I had tried to call them to let them know when I would be in town (later into Friday evening), but I couldn’t reach my mother or my sister… I knew something was probably going on, but that he would be ok. I get a call from my aunt while I’m on the road, and she thought I got news already that he was put on ventilator… she tried to backpedal when I told her I wasn’t aware, but I let her know that I already knew it was coming to that, and they would put him on breathing assitance once his diaphram started to show signs of weakening… she was surprised that I wasn’t breaking down or crying, but said that she would take me to the hostpital the next day so she could be a support for me.
Well, I didn’t think it would do any good crying, since I was confident that this was part of the road to recovery, and without him going through this phase and being on vent and tube, he wouldn’t survive.
The ICU unit did an amazing job for the 2+ weeks he was on respirator. He was unconscious for about 5 days on the vent, since they had him heavily sedated so he wouldn’t agitate himself. They suctioned a few times to clear his lungs, and had him on some medication to keep his heart rate and bp in good order. By this time, the doctor and nurses educated themselves real well on the syndrome, and were able to explain fairly well to family and friends what he was going through. During my weekend visit, the nurse that was assigned to him full-time asked me what medical field I was in, since she heard that I had pushed the doctors in the other ward to get him tested for this, and by the terms I was using when speaking to her and the doctors, I guess they thought I was in the field. I let her know I was in IT, doing tech support and systems admin.. troubleshooting is my job. 🙂 They had a good laugh over that.
So after he woke up (Jul 5), he had only a little bit of arm movement, couldn’t feel anything in his legs, had no bowel or urinary feeling. By the time he was moved from ICU to the special care unit, and off the vent, they kept the trach in, but he didn’t use it after that, since he was able to cough and clear his lungs himself, and breathe well. He was able to talk again at this point, and was a little less depressed. His first thoughts when he woke up was he thought he was going to die, and that he would never walk again, so his optimism got much better over the next few weeks. In the middle of the 3rd week in July, they moved him to a new rehab hostpital they have in Sudbury, Ontario (I live in Toronto).
I called my mom and sister every few days to inform them of success stories that I would read here and on other sites, and that slowly but surely, he would regain function. They would tell me how he was doing, and if he would gain any feeling or do anything new that he hadn’t done before.
We visited again on August 1st, and I was surprised at how well he looked. He was able to brush his teeth with his hands, had been eating minced foods for a week, and had a wristband with a loop in it to hold a fork, since he had no grip yet, but he could drink out of a cup using both hands together. He was also able to swing his knees back and forth, and felt burning in his toes and feet. He was also able to urinate on his own, but had to do it in a tube, and they would take the rest out by the catheter.
(to be continued in next post… went over 10k characters)
AnonymousAugust 29, 2007 at 6:45 pm
2 weeks later, he was able to feel his bowel movements, but no control. Now he is getting control back of that too, and has gone to the bathroom with assitance. He doesn’t need the catheter anymore, and can urinate on his own.
He has OT in the morning and PT in the afternoon in this rehab hostpital. A doctor last week did a nerve conduction test, and said that he wouldn’t walk again, since there was no activity below his knees. As I said above, I simply refuse to believe this, since axonal regeration happens, though it is a slow process for some people. He might not have movement now, but it can come back if they continue with the passive therapy, and he keeps his mind focused on walking again.
I gave my mom a bottle of alpha lipoic acid pills, which he takes twice a day (total of 100mg/day). I read that he can go as high as 600-1000mg of this stuff. My question on the ALA is can it do any harm at 600mg a day for a 200lb male in his condition. He lost 25-30lbs already, and has stabilized at this weight now for a month.
He also changed from having to be lifted from bed to wheelchair, he’s now able to use a board to manoever down into the wheelchair. I think this is great progress, and hope it continues!
My mom was really down last week, but my phone calls to her has helped keep her spirits up, and I told her not to rely on the word of one doctor… I told her to recall what the doctors were saying when they thought he had osteoarthritis… they are sometimes wrong, more than once!
I also wanted to find out if there are other supplements he can take to encourage axon regeration, since I realize that not getting IVIG treaments for 11 days since onset could have done more axonal damage than had he received the IVIG say, 5 days after onset.
With his case, what are your thoughts on him being able to walk again? At what point does it become less likely? If there is a slowing down in progression of recovery at 6 months, to the point where no new improvements happen, does this lessen his chances?
Any word of encouragement or reality would be greatly appreciated.
Thanks for hearing my father’s story from my point of view. His name is Bob.
August 29, 2007 at 7:03 pm
welcome! I am glad you did your research…that is how I had to help myself as well.
Keep your dads spirits up. Recovery could take a while but there is a very very good chance he will walk again. Alpha lipoic can be like a stimulant and sometimes stimulants can aggrivate GBS residuals. I cant even have caffeine anymore and I used to drink really strong coffee and enjoy sodas. I tired the ALA but it was too much of a stimulant for me. I take extra C, Omega 3 and 6, coQ 10, vitamin b complex, magnesium and calcium, and Ambrotose (controversial but I have found relief with it). LOTS OF REST! I cant stress enough how ture that is. I have learned the hard way and now dont hesitate to take it easy or spend the day in bed reading.
He is only a couple of months into this. He has a ways to go yet. But, he will recover. How much, no one knows. But dont let the doctors tell him he will never walk again. He has come so far, what an accomplisment. Is he in PT or OT? There are others here who can help with pain med advice.
This is a great forum and you will get a ton of great info!
August 29, 2007 at 7:35 pm
I don’t see any reason why he won’t be walking again. Before I got my strength back to even sit up in bed, one of the PT’s Pulled me up in a sitting position, then after I got my equalibrium, he does a maneuver that had me standing while leaning on him, just to see if my legs could support my weight. It was about a month and a half after that point that I was able to stand by myself. I remember the butt scoots from the wheel chair to the stool, pt matt or what ever. which even then was 3 to 4 weeks befor I started learning how to stand again. As for the bowel movement and control, it took me a while to gain it back, however, when I did have some control, I still had to use the diaper, as I didn’t have the strenght in either my arms or legs to raise or even roll onto the bed pan. Even when the PT is helping you walk again, you have this fear your knees are going to both go at once and you end up on the floor, unable to get back up.I’d say he is ‘right on course’ to recovery when comparing it to my ongoing recovery.
AnonymousAugust 29, 2007 at 7:53 pm
There is absolutely no way the doctor can say your dad wont walk again. I can just imagine what would have happened if some of us were told that after we had been completely paralyzed …… I wonder if we would have just accepted that and not tried as hard as we did to walk again:eek: . Nobody can make the prediction yet, and there IS MOST DEFINITELY a great deal of hope, he is only 2 months in! (angry with doc. 😡 ) Nerves take years and years to regenerate, and improvement can take years. Dont let the doctors say that improvement stops within a year or two, that is simply not true. Your dad seems to be doing absolutely wonderfully, and please make sure he understands this so that he doesnt get into a slump – Your mom sounds as if she needs some encouraging news too 🙂 .
With regards to supplements, there has been a great deal of discussion with regards to this. Just a word of caution on what you use though. Some people have sworn by certain supplements, cant think of the names though, will try and look it up.
AnonymousAugust 29, 2007 at 11:01 pm
Rob, Welcome to The Family. Kudos to you for saving your Dad’s life! Well Done!! Tell that Dr to not say anything Negative around your Dad-It hurts and Hinders recovery efforts. A Positive Atmosphere is essential for a good recovery. There are times in recovery when the patient hits plateaus, what seems to be really slow to no new improvements. Don’t panic, its normal. There are no time limits on recovery either. Keep a journal for your dad, or have your closer family members do it, it helps to keep the spirit up, and is great to look back on to see just what big small improvements have been made. He will probably walk again, no one should tell him any different. I was paralyzed and had no ivig or no other treatments for that matter during my first event. I was up and walking within 2 weeks. I have a problem with sensations to this day, of course it doesn’t help when I have paralysis events every now and then. I had axonal damage after the first event-Aug 05, I still have recovery plateaus and I’m still recovering new things every week. Boy I cringed just from reading about all the high powered narcs your dad was on, he is really lucky he didn’t go into distress from the narcs surpressing his breathing. Thank goodness you went with your inner feelings and investigated online. Rob, Keep up the Good Work! Please give Your Mom a Big Hug for me, and tell her she will have her Husband back soon. He will have limits and a new normal life, but He is the same man. Hugs and Take care.
AnonymousAugust 30, 2007 at 5:03 am
I had a quiet chuckle to myself about you diagnosing your father over the internet … i did the same thing myself but didnt dare tell the doctors what i suspected was wrong when i went to emergency – they already thought i was hysterical without thinking i was a hypochondriac as well. My GP said she probably wouldnt have picked it and would ahve been grateful for the input.
I think your father is doing brilliantly. He has already regained a lot of the functions that we take for granted. They may not seem like much but you have no idea how great it felt to brush my own teeth for the first time – even if i was dribbling toothpaste all over myself, i was so proud of the achievement. If he is eating, talking and toileting then he probably feels a lot more human than he did before. As to whether he will walk again, i dont know if the doctors can even tell can they? All i can say is MOST people seem to regain some level of mobility – whether it is walking unaided, with a cane or walker. I can honestly say when i took my first steps with a walker i was so over the moon i honestly didnt care if that was how i had to spend the rest of my life, it was just so liberating to be up and about again. Luckily it didnt come to that … i went from unable to sit up in icu to walking with a walker within a matter of days and walking a few steps unaided within a week. i walked out of hospital completely unaided 7 weeks after being paralysed from my head to my toes so you have to believe that a good recovery is poosible.
AnonymousAugust 30, 2007 at 10:14 am
Actually, I felt that your father is doing remarkabley well for someone just dx the middle of June. On the respirator & now able to do what he can after just a few months? It seems like the doctors are always telling people they have axonal damage & way too soon. Axonal nerve damage can heal, it might just take a little longer. Remember the statistic that 80% of GBS patients make almost a full recovery. I say almost, because lingering fatigue can be a problem for many. My neuro said I would never walk again, yet I do; he still says I don’t have enough nerves functioning to walk? But your dad seems to have the textbook case of GBS & I think he will continue to heal & walk again. Just remember that nerves regenerate very slowly, so give him a year, or two, or even 3 years to see where he is at.
AnonymousAugust 30, 2007 at 12:32 pm
Just like the others I agree, your dad will walk again. Perhaps with an aid but if he can hang in there it’s a great possibility. I was told after 5 weeks in the hospital there would be a possibility I would never walk only I never heard the doctor, only my family and friends did. So when they were getting close to releasing me and I was still on a catheter I took it upon myself to just get out of that darn bed I was sooo tired of. The nurses were mad but the therapists were glad because that said they didn’t realize I was stronger than they thought. Sure I fell but I took 2 steps on the way down! Anyway, I don’t recomend that! But I do recommend keeping positive thoughts around your dad you see nobody told me I was never going to walk again I always thought I would so it was no surprise to me. By the way I’m 5 years post GBS now CIDP and still on a cane.
AnonymousAugust 30, 2007 at 12:50 pm
Im 73 years old, GBS nov 9, 2006. Traced. coma for 4 weeks paralised head to toe. The nuro drs told my wife that all my nerves were gone and there was a very good chance I would not live. This was in a major NYC hospital. Here I am walking without help, not far but a few city blocks, I feel great came home in wheelchair to walker to cane and bingo…Keep the faith, GBS is a mystery to all but ONE….gene
AnonymousAugust 30, 2007 at 4:22 pm
Thank you so much everyone for your kind words of support and information.
I will let him know there are others out there who are rooting for him and wishing him a strong recovery.
I don’t think I mentioned this in my previous post (with its length, you thought I would have…LOL), but before the onset of symptoms, he did not have any viral infection, didn’t show any signs of fever or stomach illness.
What he did have was dental surgery (Jun 6th) in preparation for implants, and this involved drilling into the bones of his lower jaw to prepare them for dental implants. They prescribed him amoxycillin just before the procedure. He doesn’t recall every taking amoxycillin in his entire life before that.
Is it possible the surgery triggered this, or the antibiotic itself?
The doctor, physio and occupational therapist want to sit with him and my mother, and discuss “their” plan to discharge him from the hospital within 4 weeks from now. I want to make sure I’m there for that visit, so hopefully they can set a time, and I’ll take the time off to be up there to let them know that his condition is not permanent, and that they shouldn’t be planning for him to be in a wheelchair for his entire life. If I can convince them all during that visit that he will recover over time, they can focus on his rehab rather than their hospital budget. 😡
Thanks again for all the kind responses. 🙂
AnonymousAugust 30, 2007 at 4:52 pm
could be the surgery. hosp discharge is based, not on a time schedule, but when he can do certain things. use that as a basis for the whole agenda. they don’t know if he will accelerate or slow down his recovery speed in the next 4 weeks. take care. be well.
gene gbs 8-99
in numbers there is strength
August 30, 2007 at 8:34 pm
Progress is a factor in being discharged, but in my case, my wife had to fight with the hospital’s service excelence department to get me admited to in-hospital rehab, so I was able to go from hospital discharge to rehab. Providing you have the insurance, in-hospital rehab is a lot better than at home, or nursing home rehab. You get more hours per week of therapy. The hospitals head therapy doctor will try to talk you out of in-hospital therapy for budget reasons, but with my case, I had several of the therapists rooting for me in their weekly meetings with the chief therapy doctor.
AnonymousAugust 31, 2007 at 1:19 am
There you go, gene is proof positive! 🙂 Doctors are people too and they have to give their best guess, which is frequently incorrect. Keep up the fact finding and point your Dad to this web presence! If he doesn’t have a computer print some of these threads out for him, so he knows others afflicted care and wish him well! Good work, LAV!
/me wonders if gene will dance in a Broadway musical sometime soon?
AnonymousSeptember 2, 2007 at 5:57 pm
I am Gene Greene’s wife. He could do a stand up comedy act on Broadway–believe me. …. Rob, I skimmed your story because I am short of time right now but it seems so similar to Gene’s. A couple of points… I was happy to have Gene on heavy narcotics–eventually he described some post ICU hallucinations but he was very calm in the early weeks. He was weaned off the drugs carefully and because I was with him nearly constantly I was able to judge his condition from moment to moment. I was able to massage and move his limbs off and on all day and into the wee hours. I think this helped his body and mind. I also kept a very close watch (obsessive!) on his skin condition. I brought Gene new memory foam pillow and eventually a memory foam bed pad and super soft sheets. Very important to keep flexing those ankles to prevent foot drop! Gene never had to wear those uncomfortable booties because i manually exercised him and wedged pillows between the foot board and his feet. I cleaned his mouth with those lemon swabs regularly. The nurses allowed all this excess of care and ignored visiting hours because I was extremely considerate of them and the other patients…brought everyone food and stuff like that. Speaking of other patients: there is another up side to being kind and helpful to the other patients…when you do go home for some rest THEY can speak up if your family member needs assistance! Everyone (except a few gloomy docs) knew that they were caring for a patient who WOULD recover and go home to a good life… Also bring pix from home and an ipod can be helpful. One more thing…I diagnosed Gene on the internet to! But I told them in the emergency room right away. Gene is doing great and we just took a 6 block walk.
AnonymousSeptember 25, 2007 at 9:39 am
I seen that the last posting that you had was on 8/30/07 and I was kinda curious as to the status of your father. My father was diagnosed on Aug 15th and right now in the process of being taken off the ventilator and put on the trache. Is he able to walk or progressing? Your information as well as everyone elses has also help me and my sister get through this and stay positive. I would like to know how your father is doing?
AnonymousSeptember 25, 2007 at 4:28 pm
Thank you for the letter on your dad. you were so blessed to find this site. I feel you were guided to it. One thing that was a great support to me was each morning I would look for something different in my improvement and I always found something that had improved.
As mention NEVER allow anyone to talk neg around or to your dad.also do not patronize your dad. He will walk again and as long as he is postive and everyone is postive around him he will be fine.We are a family here and we know more about GBS than 60% of the doctors do.
Caregivers are lifesavers. BUT listen to the patient and his wishes. if he wants to do something on his own let him. if he is excited over a small improvement be excited with him.
Rob you were brought to this site. you were guided to bring this to the attention of the doctors. bless you. Your dad over time will be fine. GBS–1-19-07. Mine was from a flu shot (Steve)
AnonymousSeptember 25, 2007 at 11:18 pm
He will walk again. It will be a battle and a struggle but you will need to encourage him alot. I have been up and walking then back in a chair then walking then to a cain. You need to say things can be alot worse and march on. I was told with the permanent nerve dammage I would never walk again but the body does amazing things. I was also told lately that he doesn’t know how I am functioning because of my emg results. Many of them are NR’S.
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