After being in remission for 2 ½ years for a very rare debilitating neurological illness, MdDS, when it was time for me to have a routine colonoscopy, my PC referred me to Dr. Sue Lee for a consultation. My research doctor at Mt. Sinai considered me "cured", as long as I avoided my triggers. It was imperative and in writing from my specialist that I could not be given Propofol and I had to have a conscious sedation, not General Anesthesia. The only reason for the consultation was to see if Dr. Lee would agree to these conditions. My specialists had seen Propofol take patients out of remission with this illness due to their weak vestibular system, which I had. Propofol was a trigger I had to avoid. I explained in detail that I would take no chances on going out of remission. The one year I lived with this illness was absolutely horrific! I would do anything humanly possible to keep from going out of remission. I explained to Dr. Lee there were no doctors in Tennessee that could treat… me. I found specialists in Atlanta and my research doctor is at Mt. Sinai in NYC, where I had treatments and went into remission in 2014. I told Dr. Lee that if she did not feel comfortable with making sure I was not given Propofol and a conscious sedation, my PC would find me another GI that would. Dr. Lee agreed and assured me I would not be given Propofol. She documented in my record that she and I had agreed on a conscious sedation.
Three weeks later I was given Propofol with General Anesthesia under the care of Dr. Lee. For 23 months now since the colonoscopy, I have been disabled, primarily confined to my home except for my many specialists appointments. I cannot walk without a cane, certainly cannot drive. In addition to the typical debilitating symptoms I had during my first onset of MdDS, the Propofol caused: constant dizziness, tinnitus, double vision (I have to wear a patch over one eye to be able to see), and debilitating migraines. I have to spend 2-4 days in Atlanta for vestibular treatments each month. Since my colonoscopy, I have had to add 20 pills per day, two neurologists, a neuro opthomalogist, hyper-tension physician a neurotologist, and I have PT two times a week. I have been back to Mt. Sinai for treatments but remission has not been successful.
This review is based on what happened the day of my colonoscopy in the surgery room. Never did I change my mind and agree on being given Propofol! How does this happen when Dr. Lee was given the paper saying NO Propofol, she documented we agreed on a conscious sedation in my record. My husband accompanied me to Summit, but was asked to go to the waiting room when I had just put my gown on and entered the prep room. (Every other procedure or surgery I have had he was allowed to stay with me until being taken to the surgical room.) Before leaving, he announced to everyone within that area, “You do know she has to have a conscious sedation, she cannot be put to sleep?” My prep nurse said he would be sure to inform the person doing the sedation.
After finally receiving my records months after the colonoscopy, unknown to me, I found that on the morning of my colonoscopy there was supposedly a 7:44-7:48 “Anesthesia Team Pre-Op interview” where it was decided I would be given General Anesthesia “to achieve a total unconscious state”; a“Time-Out” at 14:44 where Dr. Lee and the nurse anesthetist reviewed the sedation that was to be given which they decided was General Anesthesia with Propofol. I was later told a “Pre-Op interview” and the “Time-Out” are in place to make sure the correct sedation and procedure are reviewed so there will be no mistakes! This record proves that it was decided early in the morning before I even arrived that I was going to be given exactly the opposite of what Dr. Lee and I agreed upon in our consultation, with her knowing that it would probably take me out of remission!
I never saw Dr. Lee the day of my colonoscopy when I was coherent. She never came into the surgery room before the surgery although I repeatedly asked the nurse anesthetist for her. When Dr. Lee came by to talk with my husband afterwards, (he not knowing anything that had taken place) I was still incoherent to the point I just mumbled and do not remember her being there. Dr. Lee hurriedly told him everything went fine and I never had to have another colonoscopy (I was 65) and she quickly left. When I was able to talk I asked my recovery room nurse to write down the name of the sedation I was given. She laughed and said it was “Propofol.” She said she didn’t know how to spell it, just google Michael Jackson because it is what he died from! At that point, Dr. Lee was nowhere to be found. We were the last to leave the surgery center.
Dr. Lee has never reached out to me or my PC who referred me to her. I wrote her a letter(s) which my husband hand delivered to her office manager. My PC made calls; talking with Dr. Lee’s nurse and asked her to have Dr. Lee to return her call, and talked with her office manager and asked that Dr. Lee return her call. 23 months later, Dr. Lee has still not tried to contact either of us. Does that sound like a caring, compassionate doctor? For almost two years now, my life has been destroyed and it may be for the rest of my life. Our retirement that we planned to spend with our children, four young grandchildren, and traveling, is spent on medical bills, going to specialists and using our life savings on treatments in Atlanta, Mt. Sinai, and my many local doctors. Whatcould I have possibly done differently to have kept this nightmare from happening?
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