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    I'm new here!

    I'm here because I have a few rare diseases 1st was a congenital heart defect #ScimitarSyndrome which lead to 3 #OpenHeartSurgery and 1 #stent after I was diagnosed with #PulmonaryHypertension and now testing is in the works for #Scleroderma non skin so here I am figuring it all out !!! Hello 👋🏾

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    A Life Update - Where Have I Been #CheckInWithMe

    I was going to start this off by apologizing for not posting and for not being as active, but something I say to others and that I believe in very strongly, is that health should come first. And that’s what I had to do for the last week. I took some major steps to (hopefully) sending my health down the right path.

    As some of y’all know, my pressure headaches and neck and back pain have been increasing for a short while now. They ended up getting so bad that I couldn’t lay down for very long without the pain getting unbearable (this is a normal symptom of a major high pressure headache). So the Thursday before last I was directly admitted to neurosurgery and plans for a shunt was made.

    However, the next morning, they came back to me and said I was a candidate for Venus Sinus Stenting, which is much less invasive and could also help me drain csf fluid from my head. So for the next four days they helped manage my pain, prep me for surgery using specific medications, and introduce me to the team that was going to operate on me.

    Tuesday late afternoon, the procedure happened on my right side. I honestly can’t remember all the fancy scientific names, but basically they stuck a small metal tube in a vein in my head to hold it more open and to allow more cerebral spinal fluid to be drained.

    As of right now, I am home, still recovering, but excited to see how much this can help me in the long run!
    💕

    #stent #IIH #iihwarrior #IdiopathicIntracranialHypertension #IntracranialHypertension #IH #CheckInWithMe #LifeUpdate #Hospital #hospitalstay #Surgery #Headache #Operation

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    Sorry for the long post, kind of an intro, kind of a seeking support, mostly a vent/rant, not really a way to TLDR this though

    In my process of trying to get pregnant (3.5years) we went to an infertility specialist, she had me go for some testing, where they found I have a blocked left fallopian tube, and my ovaries had endometriomas. I had been trying for over a decade to get someone to take my period pain seriously and agreed to have them go in remove the endometriosis. They preliminarily deduced that it likely had spread to other organs.

    Background: I have 1 runted kidney, scoliosis, lordosis, a bulging L4-5 disk, partially bulging T1-2 and T2-3, chronic unknown cause migraines, bells palsy (initial occurance in May), unknown cause muscle/nerve issues in my left leg, left lower back, and left fore-arm. I am hyper-mobile (31yo and can stick both feet behind my head when my body is not otherwise in pain) and for 2 years I have suspected a connective tissue disorder. my belief is ethler danlos syndrome, for which I got laughed out of the geniology office after missing the test for it by 1 point, and she didn't run any others.

    They scheduled my procedure as out patient on the 30th, laprascopic, as would normally be scheduled. With the concern of a connective tissue disorder (my gyno was the first to take that concern seriously) she ordered an echo of my heart to check for aortic problems. They found some minor (like barely detectable) excess fluid on the heart, but nothing else was wrong, my new cardiologist cleared me for surgery.

    My surgery went ahead as scheduled Sept 30th, they cleared the endometrioma from my right ovary, the outside of my uterus, the outside of my bladder, and a small bit on my abdominal wall. They did not detect any on my fallopian tubes or GI tract. They drained the endometrioma from the left ovary prepping to remove it at some point, but did not get to removing it because of course, something went wrong.

    My left illiac artery developed a tear and started pumping blood into my abdominal cavety. They sliced me open belly button to groin and sutured the tear, the sutures tore, then they got the next set to stick. They closed me up and sent me to recovery. Where they decided to also keep me overnight for observation.

    Overnight I developed a thrombosis (clot) and had to be taken for emergency surgery the next day. By mid-day I'm under the knife again. This time they had ambulanced me to the other location for the hospital which had the trauma 1 center with the imaging equipment in the same room as the surgery theater. My father (an anesthesiologist and intensivist) said this single decision probably saved my life.

    (see comment for the rest)

    #Infertility #Pregnancy #Surgery #Endometriosis #clot #stent #almostdied #NearDeathExperiences #Depression #MentalHealth #Anxiety #frustration #Insomnia #Scoliosis #lordosis #bulgingdiscs #nervepain #BellsPalsy

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