So, as I said, here is an update. I woke myself up Jan 11 gasping for breath. I sat up and regained my breath. I suspected Covid and called right away for a test (which I haven’t had to date) Got in that morn and rapid test showed negative. Also took 24 hour more reliable swab. X-ray showed some fluid in lung. The guy that saw me was an opthomologist, as they are short staffed and filling in for each other. Went home to wait for 24 hour test, couldn’t recline and breath.
Next suspicion was a Myasthenic Crisis, which I had a mild on 4 years ago when I was loaded with magnesium ( a no for Myasthenia Gravis and Gastro guy said ‘don’t worry, it will pass right through you’) I had a slight respiratory failure and ended up 5days in hospital to receive IV Immunoglobulin – standard treatment for such. But, that respiratory failure felt different than this I was now experiencing. So, with nothing better to do not being able to recline, I began to research more on respiration function, and came across med journal articles on Phrenic Nerve compression. I have been having sore neck rt side for months. I attributed it to my catastrophic rt shoulder irreparable shoulder. But, as I read more on the compression of Phrenic Nerve, I thought I was ticking many of the boxes of the described syndrome. The day wore into night and breathing was impossible in recline. I resolved to go in the 12th. I could not sleep in recline and rested in straight back chair. At 4Am, it was worse and I got in a bit of panic. I have a regular Neurologist who does not have privileges in Green Bay Hospitals and the Neuro Science Center he practices is 35 miles away and affiliated with Theda Clark Medical Center of Neenah, 40 miles away. I called their ER and learned my Neuro guy was actually on his weekly duty on call for the entire week. Also, suspecting the nerve compression thing, I know that Neuro Science has a hotshot Neuro-Surgeon. So, I called my son to convey me to their ER as I gasped for breath. I was admitted and my Neuro guy came in at 7am and began the work-up for the obvious Myasthenic Crisis – as that is why I see him for Myasthenia Gravis management/care. He ordered IVIG to begin immediately, to go 4 days. But, I mentioned to him my discovery of Phrenic Nerve issue and explained this didn’t feel like previous Myasthenic crisis. He order CT and X ray an bunch of blood tests for markers of blood clots, etc. CT showed markedly dysfunctional one side diaphragm and fluid and odd particles in lungs But, they continued down the IVIG route, and brought in a pulmonologist. Placed on Bupa breathing machine in hospital. Days went by, blood work, IVIG, and no response. Usually in MG crisis, IVIG can become effective to readjust the auto-immune attack of the Neuro-Muscular junction. But, no response. I started pushing more for other classic tests to look at Phrenic Nerve. Thy relented on day 6, and gave me a cervical MRI. Sure the heck enough, the C-3-C-4 is a mess, and nerve is bulged or inflamed, a child could see it. My Neuro sort of faded back to his regular practice in the clinic, an the next of their associates whose turn for the weekly rotation came in to organize a follow-up in a month with Neuro-surgeon, a few follow-ups with Pulmonologist, and weekly IVIGs, They set me up with the Trilogy breathing machine for home, and home maintenance of machine and refills of oxygen. I can sleep and breath with machine. (I think it is actually more comfortable that the BiPap that hospital used)
To date, no improvement in breathing while reclined. Totally dependent on Trilogy non-invasive ventilator. Waiting for my follow-up appointments, particularly with Neuro-Surgeon. I have to see if I need Phrenic Nerve decompression, if I qualify, and if the guy can do it competently. My research shows only 2 surgeons in the country have made a practice our to this Phrenic Nerve effecting the diaphragm; one at Jersey Shore Med Center (he pioneered the surgery technique, and his partner he trained working collaboratively on west coast UCLA Med Center) So, I have a long way to go…
Thank you everyone for your spiritual offerings and friendship. I hope to be able to drive out to the Lido project once underway. Maybe get the smell of diesel in the lungs!