I was recently hospitalized at Shawnee Mission medical center, after going in through the emergency room with severe spinal headache. I was admitted there, under the care of the hospitals IPC group of family practice/internal medicine doctors, as I was told my internist no longer visits the hospital. I have Chiari malformation, a rare, incurable, and congenital brain disease, Cranial Cervical Instability, Basilar Invagination, Tethered Spinal Cord disease, Ehlers-Danlos Syndrome Type III, POTS, and have struggled with these diseases, for 8 years. I have been forced to travel to NY, where I found a world renowned neurosurgeon, who specializes in Chiari & its related disorders, and has operated on me 3 times. Two brain surgeries, and a spinal cord surgery. I've recently been suffering from chronic spinal pressure headaches, which after having several tests done, my neurosurgeon in NY believes that I have intracranial hypotension, caused from a spontaneous spinal cord leak. So, after… being admitted to SMMC, for nearly two weeks, and due to the extreme difficulty & rarity in treating my disorders, the hospital consulted out several specialists (neurological & neurosurgical), to run some more tests to locate the leak. Although, the hospital was not equipped/trained in carrying out the special tests my neurosurgeon & the local neurosurgeon wanted done to help locate the leak, due to the fact that I have undergone a craniocervical fusion, and the hardware limits the tests ability to see my cervical spinal region. During my stay, the IPC doctors had me on 1-1.5mg IV dilaudid (hydromorphone) every 2-3hrs, for severe headache, after nearly two weeks. 3 days before I was released, I told Dr. Tran, that I was concerned about getting off of the IV dilaudid, since I was still having severe headaches, and knew that I would need to travel to NY to have further testing done, that unfortunately there is nowhere/no doctor trained or equipped in Kansas City to carry out these complex medical tests, and I needed to get home to my four year old son. However, just for my concern over how I would be either titrated off of this very powerful narcotic, that had been given to me in IV form, for two weeks, or switched to an oral equivalent, that would not only prevent me from going into physical withdrawal, but also from continuing to suffer with severe headache pain, since they were nowhere near medically versed enough to help me locally...Dr. Tran accused me of wanting to continue the IV dilaudid, because I "must have a drug problem", yet all I was asking was to be either carefully titrated off the IV dilaudid, that they had put my body on, or switched to a comparable oral equivalent, to where I could safely go home, without needlessly suffering, to care for my son, whilst preparing for how I'm possibly going to get back up to NY. Dr. Tran was flippant with me, slanderous towards my character, and said, "at some point we have to just rip off the bandaid", and when doing so, caused me to go into horrific physical withdrawal (severe sweating, shaking, sudden feelings of panic, etc...all very common symptoms of physical withdrawal from narcotics), and this doctor had the nerve to say, it was "all psychological", because they had supposedly switched me over to a small dose of oxycodone & hydrocodone "oral equivalents", which I kept trying to tell her & anesthesiology, that I was in horrible withdrawals, and still having a severe headache, and that the conversion could not possibly be correct bc I was miserable! I know my own body better than anyone! And, given my complex medical history, I didn't think that they should be treating me like just "any average patient". I was verbally berated by Dr. Tran, all because I was asking too many questions of her & anesthesiology, bc I just knew something was not right at all when they converted me from the IV dilaudid, to oral meds. My family was there to witness & advocate for the agony I was in, and to witness the slanderous comments made about my character by Dr. Tran. She stood there swinging her stethoscope around her neck, and said, it was "simply all in my head", and "I don't know whether you have an anxiety disorder, panic disorder, or just a drug problem because we've tracked you filling narcotics at multiple pharmacies", which I tried to explain that's probably due to my husband losing his job, therefore losing our private insurance, and having to switch pharmacies, not to mention all the times that my pharmacy ran out of my pain medicine, and had me fill at a sister pharmacy because they had it in stock, or the fact that my rare diseases have had me in the ER many times, where I may have received care for my severe chronic headaches, and pain, or kidney infections due to my neurogenic bladder. This doctor not only treated me like someone I couldn't be farther from, but yelled at me in front of my family, despite my family's defense of my character, acted incredibly unprofessionally, and refused to even hear me out, while proceeding to say, "I have more important patients to attend to", and walked out on me mid sentence...kicking me out of the hospital in worse shape than when I went in. Be forewarned! This doctor doesn't care about getting to the truth, she'd rather judge you, treat you like an animal, and kick you to the curb! Be careful!!! ??
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