Phantom Equipment Syndrome

For update on my health, skip to the bottom of the page.

In a past post, I talked about what's been nicknamed Phantom Wheel Syndrome. I was in a wheelchair for 2 years after my accident. I started decreasing the amount I used it but I didn't give it up entirely until this January. I had to transition from the wheelchair to canes, and I found myself constantly reaching for my wheels out of instinct... only to find them not there anymore.

Your brain makes a mental picture of your body, sometimes including certain pieces of equipment, like my wheelchair... until the wheelchair wasn't there anymore! My brain still had a mental wheelchair which it instinctively relied on. Think on that!

I'm now having Phantom Equipment Syndrome. I was equipped with a V.A.C. Pump that I had to carry around in a bag, which was about the size of an Ipad. I'd remove the strap if I was sitting or if I was in a car to relax my much abused back muscles. My first move whenever I sat up was to put the strap back over my shoulder and go. Thankfully, the wound on my back has healed enough so that the pump is no longer necessary. Yesterday when I got off the couch to go outside the first thing I did was reach for my bag... only to find it not there anymore.

The V.A.C. pump that's been traveling with me since May. Until one day... it wasn't. My brain still had a mental V.A.C. pump. Think on THAT!

While not a limb, my equipment is a constant part of my life in one form or anther. It's part of who I am and for few months that bag around my shoulder was part of me. I won't miss it (I named him Cato from The Hunger Games, take what you want from that) but I will remember it. I can't say too much against it, because there's always a possibility that I could end up using it in the future. Hopefully not any time soon but I thought I'd escaped the vacuum pump before. Only time will tell.

Update:

My previous post on the possibility of surgery turned out to be unnecessary. The only option at the time was to put a drain into the large fluid engorged tissue above my spinal hardware; we didn't end up doing this. They attempted to use an ultrasound machine on the mound on my back to see if they could find any fluid collections they could drain. They found one, but with barely any pressure the collection fled into the tissue. Unless a major fluid mass forms instead of the current fluid filled tissues, the doctors won't touch it.

There's a great chance that all the fluid will be absorbed by the body eventually. Until then I will have a weird looking hump on my back. To accent this particular feature, below it is where the Wound V.A.C. sucked out all the excess fluid; that skin is now sunken in, leaving my whole back marked with interesting geography.

"You know I'm a rather brilliant surgeon... perhaps I can help you with that hump." "What hump?"

I'm otherwise healing up nicely, though I won't be declaring “Mission Accomplished” again any time soon. I hope I heal up enough to go in a a pool or swim in the bathtub warm waters of the inlet sound that surrounds our house out here in the middle of nowhere. Who knows, these hopes and wishes might even come true.

On The Precipice

I'm on the edge of another choice, one that is not up to me. After a week of doctor's appointments I'm left with the prospect of a few-minute procedure or hours of surgery. All this is in respect to the bubble that's been steadily forming on my back over the past few weeks. I've been patiently awaiting the verdict on whether I'll have another major surgery.

To be fair, I have total faith in my surgeons. I just hope this isn't what they ask once I'm under.

The doctor I saw today was from plastics (plastic surgery). He recommended a drain, guided in to the correct spot with the help of an ultrasound machine. This would be a quick procedure and allow me to leave the very same day. On the other hand if the pockets of fluid that have been collecting in my back are dangerously close to anything vital, they will have to cut me open and clean out the area by hand. This would be far more invasive and keep me in pain for a much longer period.The decision over which route to choose is up to my neurosurgeon, who I see tomorrow.

I thought having concrete answers over what my options were give me some piece of mind or clarity. I admit I'm freaking out less than I was and I'm slightly less frustrated. But that doesn't mean I like it. I feel like in a constant game of Marco-Polo with my doctors, always in search of the final solution. They shout their hints to give me a general direction but they don't tell me exactly where I'm going. It's frustrating, like I'm flying blind.

But brooding over it won't change my fate. While it's true that I have the final say on any procedures done but I trust his decisions, since he's the one who rebuilt my spine from the ground up (not an exaggeration). So I value his word, his insight, and his wisdom. But that doesn't mean I wouldn't value an answer a little sooner! And if he chooses to abstain and not really give an opinion either way, I'll be getting the drain in tomorrow! Wish me luck.

A Retraction (Sort Of)

Here at The Turtle Walks I strive to set the bar high and keep the record as accurate as it can be, considering I write whenever I feel like and pretty much say whatever I please. So I want to hereby issue my first retraction. Okay, not really a retraction so much as an update. In my last entry I talked about the bubbles on my back as well as the tunnels of fluid working their way through my back tissue. Thanks to the vacuum pump (Wound VAC) that I've had attached to me, the pockets of fluid had pretty much vanished and the wound had healed all but for a few cm's near the base of my spine.
The problem? A new bubble has started rising out of the top of my back. Again! What does this mean? For one thing it means that I spoke too soon and I'm not miraculously healed. The underlying infection in my back is still active and giving me hell.

I've just finished with the summer class I've been taking in New York and will be visiting with my doctors, surgeons, etc. in Baltimore at the beginning of this next week. The bubble takes a while to build up so it's not an immediate threat. This does mean that there is the chance of surgeries, major or minor, in my future.

 He ain't kidding.

While I'm not going to let this stop me I am a little sad. Not because I'm worried about surgery (14 and counting) or that it'll interfere with my life (just let something try). No, I'm sad because this means I won't be able to get in the water. While any wound on my back is open (as has been the case since March) I'm not allowed to swim lest I get further infections. Not counting the 2 weeks I was allowed to swim in late February into March, I haven't been allowed to swim since my back surgery last December.


Think about this: My symbol is a sea turtle. What do sea turtles do mere minutes after they hatch and for almost their entire lives. SWIM!!! I know eventually I'll be allowed to return to the water, but until then I'll just have to visit the water while I sleep. Sweet dreams...