Hospital

Upon reading the two sentences from my Neurologist (see former post), I was stunned. I doubted the urgency of what I was reading so I called the neurology department and asked for the on-call doctor. That neurologist, Dr. P, was wonderful. He talked calmly and kept me on the phone until he got me to promise to come in to the emergency department that night. He said "I am looking at your MRIs and I would get here as soon as you can."

Upon hindsight, I see I was in a stunned, stupid mode. It was Wednesday and I asked 'is it OK if I just wait until Friday when I see Dr. A for my appointment?" He replied "is that the soonest you can get to the ER?" I told him that frankly, I did not feel well; I was in pain and too tired to deal with a many hours wait in ER.  I asked "how about tomorrow morning.?" Again he asked "is that the soonest you can get here?"

It was finally dawning on me that this was an emergency. Dr. P said he was on call and said "how about if I wait for you in the ER and also I will let the on-call neurosurgeon know to be expecting you." Wow. So I packed a backpack with a change of underwear and toiletries because I was getting the feeling I might be admitted overnight.  Little did I know I would be there for eight days and undergo major surgery. 

I never had an ER experience such as the one I had that night. I was taken into triage immediately and ended up waiting about three minutes before I was taken back to a private room. They took my walker and said I would not be needing that anymore; from then on it was a wheelchair. Dr  P was waiting for me and told me they were starting me on high dose steroids to bring down the swelling around my spine.

I was pretty calm as I had a great doctor tending me very closely and a great nurse. I was still recovering from my hand surgery and had stitches in my right hand that were inflamed so the ER nurse cleaned and bandaged that wound. This would later be a point of contention with an unpleasant nurse.

I was held in observation for a couple days, getting steroids through an IV and NPO (no food or liquids) in case I needed to be brought into surgery. Many doctors and students came to examine me because Cleveland Clinic is a teaching hospital. I was finally getting very thorough and detailed examinations and it was there that I started hearing the word myelopathy. And mine was severe.

Eventually, I went to a real hospital room. There, they implemented the most stringent fall risk guidelines and I literally had alarms on my bed and chair that would go off if I tried to get up. I had to call a nurse just to go to the bathroom. My walking was so bad that my daily plan of action was simply 10 steps.
And I was given a big collar to wear around my neck. 

My dear friend, DL was there constantly and my sister traveled from North Florida to be with me. My aide lifted my spirits by taking funny pictures of me.

Dr P visited me often (loved him). At the end of the second day he asked me "you know what we're concerned about, right?" I said "no." He replied "paralysis." Again, I was stunned. 

Several medical professionals would later tell me that it was incredible timing that I came in that night because I was one casual step towards a catastrophic spinal emergency. They said any kind of fall, even a quick jerk of my neck could have caused me to be paralyzed. All the symptoms I had been having for six months were very serious and now I had spinal damage. And I had been walking around going to three previous doctors asking for help in this condition! I do feel it was a spiritual intervention of sorts. I feel my angels, ancestors, God, Godess, intervened, and brought me there. More on than that later.

Friday evening a neurosurgery physician assistant (PA),T,  finally came to give me their recommendations. I had been seeing neurologists up to that point and he told me that from then on I would be dealing with neurosurgeons.

He explained that my cervical spinal compression had caused severe myelopathy and that my spinal cord had already been damaged. I would need spinal surgery to correct the situation. I thought I had been dealing with nerve damage in my spine for the last year, so hearing the spine had now been compromised was tough. They speculated that a degenerative disease, like my rheumatoid arthritis, was a huge factor for the tremendous decline the past year.

He was happy to tell me I did not need emergency surgery, but rather they were scheduling me for surgery Monday or Tuesday. But they would not release me to go home and return. I had to stay in the hospital until the surgery as I was too high risk to be discharged. To me this felt like an emergency surgery!

I asked who actually would be doing my surgery and I emphasized that I did not want anyone touching my spine that was not a neurosurgeon. I was reassured that only neurosurgeons would touch my spine and they were not just neurosurgeons, but also had advanced training to also be neurosurgeon spine specialists.

 The head surgeon, Dr. S, was thinking of two different procedures he might perform: anterior cervical discectomy and fusion(ACDF) and corpectomy. He would decide once he had opened me up and could examine the situation firsthand. I ended up having ACDF of C3 and C4, a corpectomy of C4, and ACDF of C4 and C5.

He then told me we needed to talk about expectations. Uh oh. I had been telling doctors for the last four months to please focus on two things: giving me my hands back and back pain. While I wanted to walk normally again, losing the use of my hands/arms was more devastating. And the daily back pain I experience had become unbearable.

T broke the news to me that I also had spinal compression in the thoracic and lumbar areas and those would later need attention! He said spine medicine dictates that they work from the top to the bottom. Cervical issues are addressed first and are seen as the most important since they nourish all the vertebrae below. So my tremendous pain in the lumbar area would not be addressed at this time.

He also wanted to clarify another difference in their and mine expectations. T emphasized that the medical team's goal was solely to stop the progression of spinal damage, not to reverse or cure any of the damage. If I experienced improvement to my hand or feet functions after the surgery, that was great, but not the goal of the surgery. He stressed that the medical team could not tell me if I would regain any more use of my hands and legs.  They simply did not know how much of the damage was spinal cord related and how much nerve related. The spinal cord does not heal, but nerves may heal. With physical therapy, it will take about four months to a year to find out what I'm left with. 

This was sobering and sad. I am also mad that so many doctors did not take my complaints seriously and never ordered MRIs. And now I was left in this terrible condition. I will write more about this later.

My 4 1/2 hours surgery seems to have gone well. Call me bionic woman as I have so much titanium in my body: spine and knee. Because anesthesiologists manipulate and rotate your head while intubating you and putting you under, Dr. S determined I would have to be put under manually, without the aid of anesthesia. This was to avoid rotating my head/neck as I was so bad off they could not risk rotating my neck for fear of paralysis. This process was horrific for me and I'm still suffering from nightmares from it. No doubt I will write about this as well.

But I came through with flying colors (I think). And I live to write about it with the aid of my Macbook Pro dictation feature. I have to wear my neck brace for eight weeks and I start physical therapy four weeks after surgery. It has been weeks and my voice is still raw and I have occasional difficulty swallowing from the surgeons pinning back my vocal cords and esophagus. They went through the front so I have a scar on my throat. Kool! Hopefully it will lend itself to a mysterious air about me.

I have much gratitude for the people in my life that gave me love and support. My friend DL, my sister who came down from Northern Florida, my other sister who sent loving messages through the phone, friends with whom I shared long voice messages with, my aide who visited me outside of work hours and countless healthcare professionals who did their job efficiently, but also with care and concern. 

I have to be patient and wait and work for any improvements as a result of the surgery. I'll keep you posted on my recovery. And as the dust settles, I will write about other side experiences and also about lessons learned, of which there were many.