E-mail letters to attending physician from hospital

Posted by on Oct 16 2013 | Health Care , Letters to doctors , MS

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I felt it was important for future patients at the hospital I was in (Dec 27, 2011 – Jan 6, 2012) to continue educating the doctor who was in charge of my care — the one who almost pulled my feeding tube out because I was being ‘non-compliant’ with the treatment plan that was developed without any input from me. At the time I wrote the first e-mail, I knew I had MS but I was unable to identify a lesion in the pons. I was holding onto hope that the facial pain had been resolved, although when it worsened a couple of weeks later, I was pretty sure I had MS-related trigeminal neuralgia .

August 24, 2012
Dear Dr. M:
I’ve been working on some trauma issues related to my health and the care I received. There are a couple of outstanding items I want to bring to your attention and hope that this will be of value to you with future patients.
First of all, the sinus infection and subsequent surgery has been most effective in removing my facial pain. I have been able to manage without Lyrica since May. Following the surgery, I have had two MRIs that reveal MS type lesions in my brain — cortex, cerebellum and brainstem. I haven’t been officially diagnosed yet but the numbness in my feet that I reported while in hospital is likely connected to that.
I was powerless in my situation and wasn’t prepared to argue with you when you were my lifeline. Yet, it was difficult for me to have you say that my swallowing difficulties were ‘perceived’ when there had been no assessment of it. As I was being treated as psychiatric attention-seeker, there was no discussion with me about my care at all, yet, I was supposed to comply with the ‘plan’. It was very tough.
For a bit of background, working with swallowing disorders was one of my areas of clinical expertise. I did focused training on it during my clinical fellowship at Marshfield Clinic in Wisconsin. Ironic, eh? I have taught lots of people about swallowing, including other speech-language pathologists, occupational therapists and radiologists. Not being seen by any swallowing expert was difficult for me. Fortunately, I had compensatory strategies to use to help me as things improved, reaching near ‘normal’ by late February.
The only ‘assessment’ I recall having was one of the residents who ran in to check my gag reflex. Ever since then I have been bothered by the thought that the old myth still survives in medicine. An intact gag reflex tells you that the gag reflex is working. It tells nothing about swallowing.
Thank you for listening. My great hope is that you and your residents take advantage of some internal expertise and learn a bit more about swallowing.
Thank you for your care. I needed your help to survive. Now that I’m alive, I need to figure out what to do with the rest of my life, even if it leads to greater disability. I may continue to do some more speaking and teaching once I get on a handle on the next step of my health journey. I have just started reading “The Autoimmune Epidemic” where surveys have revealed that 45% of people (mostly women) in the early stages of autoimmune diseases have been labelled as hypochondriacs. I am not alone.
——————
And after the official MS diagnosis, I felt it was important to let her know about it.
December 3, 2012
Dear Dr. M:
I just wanted to give you an update on my status. Following sinus surgery, I had an MRI that revealed evidence of demyelinating disease. A follow up MRI supported the probability of MS. Unfortunately, my neurologist didn’t believe I had MS because I have no evidence of motor problems or reflex problems. I believe this is why I have been dismissed as a ‘psychiatric’ case.
I worked with my great new GP to get a referral to the MS Clinic and had the official diagnosis on November 15. It was an easy diagnosis for Dr. Kastrukoff to make just looking at the MRI and listening to my history. He believes I’ve had MS for at least 7 years now. There is a lesion on my right pons (trigeminal nerve) that is consistent with my recurring facial pain. And the lesion on the left medulla (autonomic nervous system) likely explains my gastrointestinal/slow digestion problems.
It’s a relief in some ways to have the diagnosis as it’s validating. I can’t imagine what it would have been like for someone like me before MRIs. Likely would have jumped off a bridge.
It has been a long and difficult road over the past 15 months but at least I have answers and can move forward.
I did mention my numb feet several times in hospital. It didn’t make it in any chart notes or on my discharge summary. Interesting that I have reported numbness on other body parts at different times and it never seemed to make it into reports. I always tried my best to give full and accurate information.

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