CT Scans and Me

 Part 1

As noted in a previous blog entry, I need a CT scan as part of the preparation for surgically inserting a feeding tube. I have great fear of any procedure requiring me to get onto a sliding bed; CT, MRI, even X-Ray. This fear is based on experience. While in the hospital years ago I required an X-Ray. I was using a wheelchair and having mobility problems. When I arrived in the X-Ray room on a gurney, the operator told me to move from the gurney to the table. I told him I couldn’t do that procedure and would require assistance. Not wanting further delay this rather large man proceeded to lift me alone. This very rough handling resulted in a great deal of pain in the center of my back. This was another crying (sobbing) experience. After the X-Ray the reverse was executed with similar pain. Surprise! The X-Ray showed a fracture in the T12 of my spine 

Since then, I am very specific about my fear of transfers in these procedures and needing to know how they will be accomplished. On more than one occasion I have demanded more people be involved.

And so I did my best to describe to the scheduler my condition and requirements. I even requested a calming medication to try and keep my anxiety in check.

Off Ingrid and I went on another adventure!

Part 2

Of course it is the coldest morning of the winter but we arrived at the facility the requisite Sendelbach 10 minutes early. Little did we know it must have been one of my distant relatives setting up the appointment. It was an hour between the requested arrival time and the scheduled procedure. More time for my anxiety to build. I decided not to take the calming medication as the nurse had said “it’s not an MRI, only a CT scan” (implying don’t be a baby). What can go wrong?!

I was taken back to the prep room. They inquired whether I was sitting on a hoyer strap? I said no and they asked how I got into my chair. I explained I used a sit to stand machine. They didn’t have one of those. They then had me demonstrate all the ways my chair could adjust and seemed quite pleased. They would improvise with a transfer board. Key word to me was “improvise”.

And so we began. I was constantly checking for gaps between the chair and the gurney and they were constantly telling me to keep my arms over my chest. I made it to the gurney and wheeled into the room with the machine. Same process onto the sliding bed of the scan machine. Very uncomfortable.

The actual scan process was quite uneventful. Then the reverse process ending with me back in my chair. The main operator explained how all the other facilities were much better equipped to handle me. I heard “don’t come back here!”. 

Part 3

Tomorrow I get the results and will post here.

And the adventure continues as we are home. Our meeting with the Dr today was by zoom. Same distant relative must have been involved with this scheduling; sign on 15 minutes before the scheduled time and wait. After 30 minutes we called to find out what was going on. We were told technology issues but they could reschedule us in 90 minutes. Another wait and then success. The doctor played 20 questions and I reluctantly responded. I say reluctantly as all the information being requested was in my medical history. And then came the conclusion: “My anatomical structure would make the typical surgery unlikely to be successful”. My case was being referred to a more traditional (invasive) surgical unit. They would be in touch.

I am tired of being a special case! Although i am grateful to be a special case concerning the ALS progression. An insight! I am very quick to be irritated when special conditions are unfavorable to my expectations and tend to forget when the special conditions exceed expectations. In the scheme of things having a more invasive surgery is an inconvenience where as having a slow progressing disease allowing a significantly longer life is a real gift.

I must admit yesterday and today were pretty tough and down days. Even more of that crying stuff. It seems to be okay to feel that way for a short time. For me, I can’t fall down that hole for very long. I see where it could be a slippery slope if I fall too far. And then what? Being less functional and having less purpose. I want to be as normal and functional as possible. So, I will continue to fight for perspective and purpose.