RangeRover2
Member
Hi. I have a rather complicated medical history. One that has left me with so many "If Only's!" I was initially dx with POTS, Neurocardiogenic Syncope, Mitral Valve Prolape. Got pregnant via IVF and got severely sick w/ ovarian hyperstimulation which led to severe pulmonary edema. Went on to have a healthy baby but developed severe hypertension with bradycardia. Hypertension was malignant as nothing would treat it. Placed a PM to treat bradycardia. Spent 4 years at U of M, went to Cleveland, Mayo to know eval. Mitral regurgitation was exacerbated by hypertension and became severe, had a mitral valve repair that was over corrected which resulted in severe stenosis and PH. Had mitral valve replacement. Started seeing a progression of neurological symptoms which led me to research my medical records. Came across a letter from neurologist to hypertension specialist that noticed a low lying cerebellum and highly recommended referring me to a neurosurgeon as this may be the cause of the malignant hypertension. Because I had a PM I wasn't, nor was I told about the finding. As soon as I became privy to this record I saw a neurosurgeon who ordered that I have my PM replaced with a MRI safe PM. Needless to say this procedure was a disaster as my left subclavian vein burst upon extraction, fell apart, and they could do nothing to save it and ended up removing it, I lost over 12 litters of blood and almost died. Did due but they were able to bring me back. Anyway, went on to have MRI which confirmed severe Chiari Malformation 1 (brain is too large for skull and compresses against brainstorm and herniated down into spinal column causing a blockage of CSF causing all kinds of symptoms including the "Cushing effect" which causes uncontrollable hypertension. I also had severe tethered cord syndrome. Had two surgeries to help symptoms (there is no cure, just surgeries to help symptoms - brain surgery (decompression sugery) and spinal surgery for TCS. Afterward I developed two clots as neurosurgeon demands cessation of Coumadin for two weeks prior and post with no bridge. Since then I have been dx with vascular EDS. This is the worst type as one is highly prone to spontaneous arterial, vascular, organ rupture along with severe bleeding. Average age span is 48-50. So here I am at 39 with a 7 year old child with a mechanical valve inside me. Should I have it replaced with a tissue so I don't have to be on Coumadin...27-30mg per day I might add. Prior to brain surgery it was 65mg per day. Coumadin is the worst thing for VEDS. Anyone out there with VEDS or EDS? Any thoughts and/or suggestions. I welcome anything right now. I'm terrified. Meeting with Cardiologist soon. Thank you in advance for any and all input. RR
