My hands

I've had five surgeries to restore some function to my hands. Here's the story.

In 2014 I was diagnosed with  acute motor axonal neuropathy, AMAN.  That's the rare variant of the rare disease known as Guillain-Barre Syndrome. After I got food poisoning probably from some under-cooked chicken my immune system got confused and attacked my motor nerves. I went from marathon ready, to doctor there's something wrong with my hands and feet, to the emergency room , to the Intensive Care Unit in one day. I received IVIG (kind of blood plasma transfusions),  plasmapheresis (blood-filtering), more IVIG,. Then eventually and off-label non FDA-approved chemotherapy. That stoped me from getting worse. I was a quadriplegic unable to move my arms or legs. I was able to breathe and move my head and neck and wiggle my core. There really aren't any drugs to get better. It's called GBS for a reason.Getting. Better. Slowly. So worse would have meant assistance in breathing and eating. With tubes

When I was initially hospitalized and my diagnosis was Guillain-Barre syndrome. The doctors kept saying you'll be fine in a year. It did't make me happy to hear that but that's what they kept saying. (I think that's what a gardener might say to someone whose tree was damaged.)  but after a few months in the hospital my diagnosis changeed. Because I had axonal damage.  Instead of saying  you'll be fine in a year they said "we should talk in 3 years". Those words were more honest but since I'm using voice to text to get this onto the screen hearing myself say them turns my stomach. (Reading this as I proofread it doesn't make my stomach feel that much better either. Yeah I proofread.)

After spending a 135 days in hospitals and a nursing homes I came home I needed to use wheelchair that I couldn't push by myself to get around.  After a year I was able to walk around with a walker.....and a pair of Canadian crutches Then I use the cane for a while. I wore a glove with velcro on it and put the other half of the velcro on the cane so I can grip the cane. Then I put a hundred rubber bands around the handle to make it bigger and stickier. It's been almost seven years  and I still deal with the foot drop  I use ankle-foot Orthotics. I'm running marathons again, it just takes me twice as long.

But the healing in my hands was not so much.  So after 3 years of  occupational therapy my therapist mentioned that I should see a surgeon about my hands.  If I were to hold them out with my Palms facing the ceiling I would be able to  lift my hands from the wrist. But if I were to turn my Palms facing down I was unable to lift my wrists. The fingers in my right hand barely worked at all and the fingers in my left hand just hung there.

One of the benefits of going to a giant research hospital was that everybody  works together and talks to each other. My occupational therapist suggested I see the surgeon she works with. He said he can help me but he wanted to hear from my neurologist that I was done healing. He didn't want to start moving parts around that we're going to get better on their own anyway. So I went back to my neurologist and I had another lovely EMG test. She took a big breath and looked up and said yeah nothing's changed in a year, and it's been 3 years since your diagnosis. You're done healing. I knew that. We both pouted and moved on.

I went back to the surgeon. We had a great conversation. He asked me what I wanted to dooh, what was important to me? I told him my number one priority was to be able to use toilet paper. That would open up a whole new world to me. He told me no. That was # two (absolutely no pun intended).  He was going to fuse my wrist at a slightly up angle. He said the most important thing for people to be able to do was to hold things like pens, forks  And doorknobs. He said your wrist had to bend the other way to use toilet paper. It really made sense for him to bend my wrist up so I could use those tools with my dominant hand. I agreed I knew that I still had a left hand for them to work on after they worked on my right. The picture is here show that the first surgery was to install a rod in my right wrist. Before that I would use a splint to keep my wrist straight so I can hold a fork. The second surgery transferred the tendon that used to move my wrist a little bit to my fingers. So now that I'm all healed I'm actually moving my fingers by activating the tendon that used to lift my hand. 

After my right hand healed I went back to the surgeon so we can work on my left. I told him I still wanted to use toilet paper. okay, my wrist was okay on my left hand because it moved in the direction it has to move when you use toilet paper but my fingers were useless. So two little surgeries he fused each of the knuckles at the hand so they were in the shape of a cup. And in the fifth surgery moved some of the tendon from the wrist to the thumb so I can open my hand a little. At home I still use a bidet. But I can travel confidently because of this great product. 

  

oh, And the answer to that other frequently Asked question is has a person recovering from GBS who was surgery?

I had no problem with anesthesia or the nerve blocks. Each anesthesiologist needed to check with my neurologist if I was okay to have a nerve block and they went ahead and did that. No problems.  The thing that was kind of a fake problem was that since they don't let you eat  or drink anything the day of the surgery I was both hungry and dehydrated. Hungry with mostly my problem. Dehydrated meant it was harder for them to find a vein. So one time they actually put the IV into my foot which made it so much fun to walk into the OR.