Know anyone else paralyzed from Critical Illness Polyneuropathy (CIP)?

Hello @scottydot, Welcome to Connect. I know this has to be difficult for you as well as your brother. While you wait for other members who may have experience, I was not familiar with ICU acquired neuropathy so did some digging and found a couple of reference articles that discuss the topic. The one from Science Direct has a lot of related articles listed and might be helpful if you haven't seen it.

-- Critical illness polyneuropathy and myopathy: a review of evidence and the implications for weaning from mechanical ventilation and rehabilitation: https://www.sciencedirect.com/topics/medicine-and-dentistry/critical-illness-polyneuropathy
-- ICU-acquired weakness: Critical illness myopathy and polyneuropathy: https://pubmed.ncbi.nlm.nih.gov/40158422/

Are you providing caregiver support for your brother?

Hey John, so nice of you to respond, and I really appreciate the links 🙂
Indeed, my brother is receiving good care at home. And we are extremely thankful (and lucky) that he was able to progress from a vegitative state/pneumonia/respirator/feeding tube -- all the way back to a freely breathing, eating, talking, laughing father and husband again. but I would love to stay current on alternative or experimental therapies aimed to restoring movement. And I would love to hear from others who may have this extreme form of neuropathy. Thanks again for your note!

Hi @scottydot, Thank you for the update. It's great to hear that your brother is receiving good care at home. I forgot to mention that there is a Caregivers Support Group here on Connect with many different discussions that you might find helpful. Even though the ones being cared for might not have the same condition, I'm sure that there are others that can relate to what you and your brother are experiencing. Here's a list of discussions if you want to scan through them - https://connect.mayoclinic.org/group/caregivers/.

Hello, yes I have C.I.P. since 05.23.2020. In ICU, on ventilator for 12 days, related to unconsciousness state from double pneumonia and complete exhaustion, valley fever, severe bladder infection, and high blood sugar.
While on vent, I was not waking up after a few days, and several scans that all seemed okay, organ failure soon followed, kidney issues, fluid around heart.
Thankfully I did come out of coma, organs stabilized, then transferred to inpatient rehab facility. (This was the start of lockdown covid days, and no visitors inside any medical facility.)
I was not officially determined CIP until 3 months afterward when I was finally able to get into Neuro.
It is from my ankles to toes, in both feet. Severe CIP, unable to stand and walk on my own since this happened. I have been in and out of physical therapy (outpatient and home health), I have had to stop therapy when other medical condition or complications arise. So I basically feel I am just starting over with p.t. again and again.
Never had inpatient therapy, insurance discharged me from inpatient rehab facility after 12 days because I was not making sufficient progress in my therapy. From there I was transferred to a private home assisted living, 3,000$ per month, not covered by insurance. There for 4 months then finally able to come home with nurse aide part time for a month (out of pocket as well).
I have come along way since then, but still frustrated not back on my feet. Adjusting to life wheelchair dependent has not been easy. Depressing in fact, I have good days and bad but am determined to continue to try and go as far as I may go with therapy.
I see my neurologist 2x a year, and finally on a medication regimen that has helped, but I wonder if life will ever be even close to what it once was.
Sadly, prior to this experience, I had never heard of anything like this from an ICU stay. It just stinks - so glad I came across this discussion group, as I have found very little on any support group or others who have experience with this.
Any questions or comments welcome, best of luck to your brother and family
Ann

@iamdetermined33 Hey Ann, thanks so much for the reply. It sounds incredibly frustrating to feel like you can not get any momentum, and I am sending you positive vibes, and wishes for a quick recovery. Indeed the wheelchair is a tough thing to get used to. My brother's incident happened during covid as well, and I imagine this may have complicated things more than usual, as understaffed hospitals were operating under abnormal and stressful conditions. Have you tried to go to a pool? It might help your brain become familiar again with your feet, as you can 'walk' (or have someone guide your feet) across the bottom of the pool. My brother enjoys the pool as it helps him feel more free to exercise the muscles that do still work. We also had never heard of anything like this from an ICU stay, and it is a sad reminder that the body is still largely a mystery, and so much more reserach is needed. Perhaps as we find more people with CIP, we can share more experiences that could be helpful. Thank you so much for reaching out!