About a month or two ago (time slips away from me) I began having significant trouble breathing, occasionally. My chest and upper back muscles would tighten sufficiently to make me feel like I was being crushed. Indeed, I was. According to a CT scan of my chest, I have some passages in my lung that are collapsed and I have a cyst that has formed. My doc believes the cyst is from when I aspirated while I was out cold for a few days in the CCU. We have a three-month CT scan scheduled to track the progress of the cyst.
However, the victory comes from the treatment we started.
First is an Albuterol inhaler to help the inside of the lungs. That is a welcome addition. My O2 levels were dropping to 89%, now they are back up to 95% and sometimes as high as 97%.
In addition to the Intrathecal Baclofen, I started taking 20 mg Baclofen three times a day. However, this was putting me on a crazy roller coaster. I would fall asleep with the Baclofen and then wake up just in time for the meds to wear off and spasms to begin. I had an idea scamper across my brain. Instead of taking the Baclofen three times a day, spread the pills out to one every four hours, even through the night.
The bands around my chest have lessened. But, the big win is in my mobility. I have experienced a significant decrease in my wheelchair time. I still have bouts of spasms, however, they are treatable by taking a Zanaflex. I keep the Lortab in reserve for when I can take no more.
I stumble around the house, but I’m mostly vertical. I call it a win.
I am concerned about the amount of Baclofen I take. As what I have is muscle atrophy, taking muscle relaxers are counter intuitive. However, there is no other defense against the incredibly painful, and crushing spasms. I never dreamed that my muscles would spasm tight enough to crush the air out of me.
SBMA continues to confuse and confound me. However, we are getting smarter in my treatment plan. If I remain on the treatment plan for a couple days of the routine medication, I am able to stay out of the chair most of the day. However, today will not be one of those days. I had a spasmodic event from 5 pm until midnight and I strained some muscles in my hip and thigh. I can’t really support myself with them this morning. They will heal in a few days and I’ll be back “up” again.
That is a win and a Blessing,
Jay C. “Jazzy_J” Theriot