ITS ONLY A FLESH WOUND
I'm alive! And I am home! It’s been tough for the past week but everything looks to be on the mend. Oh, I still have a way to go before I can even visit the barn but for now, I am just happy to be home.
Most of you know that I have a genetic condition called Neurofibromatosis. Over the last four years I have had increasing chronic pain. I've been on oral meds; switched from one kind to another, increasing dosage with less and less results. Typically, a fibro gone wild is simply removed but for some reason many, many of the little bastards that share my body have been causing trouble. Too many to remove all at once. Some impossible to remove without drastic physical problems.
Obviously, it was time to try something else so over a year ago I began a long search to find another way to cope and settled on a SPINAL CORD STIMULATOR.
This handy, dandy device is implanted…leads along the spinal cord and a control along the flank.
First I had to qualify. Two MRIs later I learned I was a candidate. Then we had to talk the insurance people into it. They denied me at first but after talking to a very helpful woman, she gave the ok.
The first phase is a trial run in which they implant the leads but the control device is left outside the body. In early January, my trial run went VERY WELL. In fact, before even half the number of days went by I was feeling GOOD…I slept through the night TWO NIGHTS in a row! TWO! I haven't slept through a night in well over four years.
I was so excited! My pain issues were to become a thing of the past!
The surgery was set for February 23rd. Everything went well. The surgeon was pleased. I stayed overnight in the hospital, came home the next day, a Friday. The surgeon left for vacation.
On Saturday morning, I woke up in a puddle of some type of liquid. That was NOT supposed to happen. The back of my head was POUNDING and the back of my neck felt like it was in a vise grip. We called the appropriate numbers and were sent to the ER. By the time we got there I was very ill. In fact, I was a good way to anaphylaxis shock but no one knew it yet. They thought I was leaking spinal fluid.
The on-call neurosurgeon came in and for the second time in 48 hours, I was on my way to the operating room. The plan was to see if they could find the source of the problem leak. In all likelihood, my stimulator was going to be removed.
Once I was knocked out and they were able to get a better look at things, they discovered I was having an allergic reaction to the adhesive used to close up my two incisions. A very bad reaction that looked like a chemical burn.
They irrigated all the nasty glue away, did a spinal tap and admitted me.
I spent the rest of the day Saturday until last night getting IV antibiotics to ward off infection, IV fluids to flush out my system and being treated for some very bad skin issues.
My poor husband Pete was left to organize an instant long(er) term farm care team, notify my family of the complications and keep me from falling apart. Friends, Sadie, Anna and Giya jumped to the rescue. A new volunteer, Tracy, called just at the right moment and another volunteer from the past came by. Kathleen came and sat with me all day on Sunday so Pete could help the volunteers clean up the barn. At least I didn’t have to worry about the ladies! Between all those wonderful people and Pete, they were well cared for.
Meanwhile, the wounds were weeping to the point that I had to have the dressings changed every three hours. By that time, my bed and gown had to be changed, too as I was losing fluid almost faster than they could get it in me.
Talk about painful! Layers of skin came off with each dressing change. The drainage itself was causing my skin to break down. And every place that any tape that touched my skin set off a new reaction! I was still trying to recover from all that general anesthesia, too. The surgeon, bless his pea sized heart, shook his head and said, “I have never seen a reaction like this. Only one in every 15,000 people react at all. But NEVER like this!”
Kathleen just shook her head and told replied, “One in 15,000? Those odds just aren’t in Jeanne’s favor. You have no idea who you are dealing with”
No one could tell me how long I’d have to stay in the hospital, how long it would take my skin to heal or, given that the back of my neck and head still hurt quite a bit, if I was, indeed, leaking spinal fluid on top of it all.
We finally got the wounds under control…they weren’t getting worse and a new dressing was found that didn’t eat my skin. They pumped me full of antibiotics. And I am home!
I have a home health nurse coming daily, doctor appointments every other day and a ton of side effects from the whole ordeal and no idea how long I am to be laid up. I am still woozy in the head, sore all over but, on the bright side, my stimulator is working very well! On the down side, my skin has started to react to the new dressing and we will have to try something new.
I am constantly reminded of the Black Knight in Monty Python and the Holy Grail. After all, it is only a flesh wound and I’ve had worse…