Getting Real…the Mayo Clinic

Ah, the Mayo Clinic…this Tuesday I will return to Rochester for an evaluation. This time it will be of my left thoracic region…aka my left chest and shoulder. I have had multiple visits to the Er in the last year with symptoms no one has been able to attach to a diagnosis and after a difficult PT experience last week, I went on a mission to find someone somewhere who can accurately diagnose what’s going on.

Last August I had a day where I woke up in the morning and couldn’t stand up because I’d slept on my left side and along with my arm being numb, so was my head. As I woke up and tried to move around I began to experience chest pains. My left arm was throbbing and in pain so I got Dean to come home and take me to the ER. It was an uneventful visit and after they ruled out a heart attack, they sent me home. It was late afternoon before I felt somewhat normal but there was no diagnosis beyond, “this is probably related to your thoracotomy so continue with physical therapy and stretching”.

As the summer wore on I figured out how not to sleep on my arm, we bought a bed that elevates each side and I continued doing exercises. After several other weird episodes and visits to doctors, MRI’s and X-rays taken, there was still no resolution. Medicine is so specialized that when one discipline finishes up with you they often just let you go. I know from a lifetime of experience that we are each our own best advocate.  

After working with the GI specialist and rheumatologist at Mayo, some of my symptoms were thought to be coming from Sjogren’s Syndrome. I began to take high powered meds to suppress my immune system. If you’ll recall, taking the third of those meds put me in the hospital fighting for my life. I’ve recovered well from that nightmare and have simply continued to try to do the exercises and work I can to make things better.

Last spring I began to have a sore throat that would not go away. I was tested for strep etc. but nothing showed up  but nothing showed up. Eventually I was sent to a ear, nose and throat doctor. After looking into my throat he discovered that my left vocal chords are paralyzed. No idea if that’s where my pain is coming from but it is likely.

Simultaneously I was seeing an orthopedic doctor to rule out a rotator cuff injury as cause for the pain in my shoulder. He said my shoulder blade was in the wrong place and ordered  yet more PT. I did really well with it and found a lot of relief. I was very optimistic. On the follow up visit, the doctor said my shoulder was in much better shape but the issues of numbness in my arm, pain in my chest and changes in my heart rate have been attributed to Thoracic Outlet Syndrome. He ordered more PT and last week during a PT appointment, the therapist began the process of lowering my left rib cage through intense and deep massage. I have a lot of scaring on that side and apparently the left rib is causing a lot of issues.  

The next morning I woke up with excruciating pain in my shoulder, my chest and my neck. It lasted for 3 days.  I realized then that I needed to find someone who specializes in this syndrome so that I actually have a clear diagnosis and plan for treating it.  After doing multiple Google searches, I discovered that the Mayo Clinic assesses it with their team approach, which I’m very familiar with, so I made an appointment there to get an evaluation. When I was making the appointment, the scheduler asked me if I felt symptoms in my face  in order to determine whether I would begin with neurology or cardiology first. I have brought this face pain to the attention of other doctors and it was either minimized or was thought to be coming from a disk injury in my neck. Two MRI’s on my neck proved that it wasn’t coming from that. I found it reassuring to know that this is a symptom of TOS and does have to do with cardiac issues even if the heart itself is in good shape. After that question, I know I’m heading in the right direction. 

I’m scheduled to see the cardiac thoracic specialists on Tuesday and will be back and forth until they figure out what my next steps are.  I sincerely hope there is something that can be done  because the condition continues to greatly alter my life. 

Please send your prayers or positive vibes my way next week. I’d really appreciate it.

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