Breaking up with your doctor: my dear John letter

My previous two posts detail a harrowing medical emergency. I mentioned how previous doctors dismissed my symptoms and if it had not been for my own personal tenacity, I would've ended up paralyzed or worse.

This is not the first time that I have experienced such medical dismissiveness. I realize that this medical gaslighting did not start happening until I became an older woman. See this past post. (And yes, I do acknowledge that I seem to often have medical emergencies. What can I say? I live with an auto immune illness that wreaks havoc on my body).

I remember when my mother had lung cancer and she kept getting misdiagnosed as having allergies or suffering the effects of a chest impact from a mild car accident. I kept taking her to emergency rooms and physicians for chest pain. Once when we were leaving an ER without any medication or referral, my mother turned to me and said "they just see me as an old immigrant woman; that is why they don't take me serious". She was right; and by the time they made the cancer diagnosis, it was beyond hope and she had suffered tremendous pain needlessly for nine months. Learning from this, I guess doctors just see me as an older, brown, overweight woman. All categories that get dismissed in our society.

Like most women, I have found it difficult to stand up to "professionals"- people in professions that our culture tell us are experts. We were taught that respect=smiling acceptance. We were taught not to rock the boat. This definitely applies to physicians. But this latest episode of medical dismissiveness nearly cost me my life, so I am definitely going to speak out.

I have been pondering what action I would take regarding the first neurologist I saw. His final diagnosis was that I simply had neuropathy in my upper and lower extremities and all my other concerns could be explained as the result of having RA. Never mind that my rheumatologist had been the one to say my lack of balance was not RA related and he referred me to this neurologist. I remember that I brought a friend to that appointment and even he was shocked at how casual this neurologist was in my appointment. It was even in his posture: the doctor sat slouched, one leg extended and one hand propped up his head. It seemed as if he was tired and maybe even bored with our discussion.

So I have decided that I will write that doctor and tell him about my recent emergency hospitalization and surgery. I want him to hear that 11 days after he dismissed me I ended up almost paralyzed. I am posting here the letter I am sending him.  I do this for two reasons. The first is purely personal. Speaking up and telling a doctor that he was wrong is hard for me so I am doing so publicly as an act of empowerment. Secondly, I hope this inspires someone who may be experiencing the same to speak up for themselves.

Dear Dr X,

I first came to you on June 26, 2024 for balance impairment and possible carpal tunnel consult. You ordered upper and lower extremity testing and consults with a hand specialist and a brain neurologist specialist. I came back to go over the results, July 25, 2024 but it turned out the MRI done on my brain was not inclusive of the one you needed so you ordered another brain MRI and I did not come back for all my results until August 15, 2024.

I remember telling you how my hands were not functional. My fingers were numb and I had burning in my thumb and second finger. I felt crushing pain and rigidity up my forearms. My walking was very problematic and and I was falling fairly regularly. I had to use a walker. Your conclusion was that I had carpal tunnel causing my hand problems and the effects of rheumatoid arthritis was causing the rest. You did mention that perhaps I might consider getting spinal MRIs in the fall/ winter. 

I was stunned by your conclusion as I knew something was terribly wrong with me, and it was not just from my RA, which I had been living with for years and felt I knew well the symptoms. Also, my rheumatologist had referred me to you in the first place because he said my loss of balance was not related to my RA. I did not feel carpal tunnel explained the muscle crushing pain and rigidity up my arm. When I asked you why I was falling, you replied "maybe you have an inner ear infection; perhaps you'll want to consult an ENT”.  I was very disappointed and felt you were not taking me seriously.

I want to tell you what has happened to me since our last visit in the hope that it will lead you to reevaluate what I feel were dismissals of my symptoms and concerns.

I left your office dejected. I felt I was on a runaway train that was going to crash and nobody was helping me. My physical decline was happening so quickly that I feared what my condition would be by January 2025. I sought a second neurological opinion.

August 26, 2024, 11 days after my final consultation with you, I had a consultation with another neurologist. Upon an extensive physical examination, she summarized in her notes ”On neurological exam, patient has impaired proprioception and vibration on bilateral feet and hands, positive romberg and Lhermitte sign positive. Given the symptoms, gait abnormality could be multifactorial due to sensory neuropathy and spinal spondylosis due to RA. Will obtain MRI cervical and thoracic to rule out any structural/demyelinating causes.”

I had my cervical and lumbar MRIs on September 16, 2024 and my thoracic MRI on September 17, 2024. On September 18, 2024, I received a message from the ordering neurologist “Hi Deborah, the MRI of your spine shows compression of your spinal cord. I recommend you go to the ED for urgent evaluation by neurosurgery.” 

This ER visit on September 18, 2024 resulted in emergency hospitalization and spinal surgery. The neurologists and neurosurgeons all said it was a miracle that I came in that night; that if I had jerked my neck in anyway, I would've been paralyzed. They said my symptoms showed severe myelopathy and questioned why I had not sought help earlier!

I ended up having spinal surgery: ACDF of C3 and C4, corpectomy of C4 and ACDF of C4 and C5. The neurosurgeon says my spinal cord has been harmed, and I am left not knowing if any of my impairments will be reversed.

As I mentioned earlier, I am writing you this letter to highlight what I hope was a rare lapse in

professional judgment. But I can tell you as your patient I left your office feeling you did not take me serious and I  almost felt hopeless. I know you got into medicine to help people. My hopes are that my experience will benefit you in your treatment of future patients.

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.

As the dust settles…

I have been experiencing writers block. You see, I have been on a health roller coaster decline for the last six months and it culminated several weeks ago with emergency hospitalization and surgery. This whole experience has been of such magnitude that I realize I am looking at my life as pre-spine decompression and post spine decompression. I find it hard to write about because I feel I cannot convey the magnitude of the life changing effect the last six months has had on my whole (physical, psychological and spiritual) body. No doubt I will write several blog posts about these experiences because there were many important things packed into this timeline.

I'll start with a brief summary of my physical decline leading up to hospitalization. There are so many healthcare providers I saw over the last six months and so many tests and imaging that I can only give a summary in broad strokes. There were conflicting diagnosis' and treatments offered. I was an advocate for myself and stood up to medical gaslighting. I endured what later would be discovered to be an unnecessary hand surgery. My physical decline and the medical trauma I experienced over six months have forged inner growth that I will talk about in another post. In times such as these, I loved looking at this sticker on my bulletin board near my desk.

As you know, I live with an autoimmune illness, rheumatoid arthritis. I have shared about the constant pain, decreased mobility, exhaustion and other systemic symptoms. But six months ago, I began a rapid decline in the use of my legs and hands. I sensed that something different was going on and it was serious. But my doctors kept telling me it was 'just' my RA and there was nothing much I could do differently about it.  My rheumatologist offered additional medication (sulfasalazine) which I ended up not taking because I was afraid of the side effects. I continued to suffer and decline in my ability to walk and in daily hand functions such as opening a bottle, using utensils, being able to dress myself! 

Two months later, I knew that something was terribly wrong with me. I had lost coordination of my fingers and strength in my grip. I experienced terrible burning pain in my thumb and pointer finger and all of my fingers were totally numb. I had crushing pain up my arms and my muscles felt like beef jerky- stiff and unbendable. I could not walk with one foot in front of the other, nor could I stand for any period of time without losing my balance and falling. I had to use a walker and wheelchair and even installed a chair lift in my townhome because I could not handle the stairs. And the pain up and down my spine was intractable. My quality of life was quickly decreasing. In addition to the loss of daily functional abilities, my days were filled with pain, pain, pain.

My pain doctor increased my nerve medication to its' max limit, gave me Tylenol 4 with codeine, a  muscle relaxant and we were planning for more spinal epidurals. I was miserable. Living in constant pain is no quality of life.

In an emergency visit to my rheumatologist, I was given a short course of steroids for inflammation. The terrible pain and burning and loss of function of my hands was attributed to carpal tunnel. And I was (finally) referred to a neurologist for my loss of balance and difficulty walking. This Neurologist wasted months of my time gaslighting me. He sent me to a hand surgeon who ended up performing hand surgery altering three things in my right hand, which I would later discover was probably not necessary. I will write more about that later. I do believe the universe keeps sending you lessons until you master them. Medical gaslighting was something I had difficulty standing up to in the past. I'm very proud of myself that I pushed past my self doubts and searched for another neurologist for a third opinion. It saved my life.

I researched neurologists with five stars reviews, and I decided to pick a woman, thinking perhaps a

woman would listen to me more. I found a brilliant young, black,  female neurologist, top in her field of multiple sclerosis, Dr A.  Her fellow conducted an hour long thorough physical exam, and took note that I was severely impaired. When Dr A came in, I looked her in the eye with tears and told her I felt I was on a runaway train that was going to crash because my symptoms were declining so rapidly and nobody was doing anything. She looked back at me and said "what's happening to you is not normal and we will find the reason. " She ordered blood tests for obscure illnesses that could produce my symptoms and a complete MRI of my spine.

Interestingly. when her fellow was finishing paperwork with me, she asked me how I came to choose this neurologist for another opinion. I told her I went by her credentials and high ratings, but that I also picked her because I felt a woman might listen to me more. Without missing a beat, that female fellow told me "We do."

The MRI's were divided over two days. Monday, I would get cervical and lumbar MRIs and I would get my thoracic MRI on Tuesday. I had to take tranquilizers to do the MRIs as I am very claustrophobic. On Wednesday, 6:30 PM,  I check my email and saw I had an email on My Chart app. Thinking it was an appointment reminder, I almost did not look at it, but I decided since I have MRIs pending results I would check it out. When I checked the message, it was from Dr A and her message was just two sentences:

“Hi Deborah, the MRI of your spine shows compression of your spinal cord. I recommend you go to the ED for urgent evaluation by neurosurgery." 

And thus began the beginning of my treatment. Finally. Someone had listened.