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  1. R

    Vascular EDS with Mechanical Valve and Chiari Malformation facing multiple surgeries!

    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...
  2. R

    What would you do?

    Thank you to ALL for your thoughts on this. My cardiologist was/is very concerned about the previous two surgeries and complete lack of anticoagulation for 4 weeks but could do nothing as this was/is my neurosurgeons demands. Great concerns of bleeding with neurosurgery. As I mentioned, I just...
  3. R

    What would you do?

    Yes, that dosage is per day! Prior to my decompression surgery it was 65mg per day! Swear to GOD. After, I've been between 25-35mg per day. Had all testing done. Thought I was warafin resistant but eventually hit target after 6 mos. I've just had bad luck and I wish I just had a tissue at this...
  4. R

    What would you do?

    Yes, it could. This is the question I have before me. And as for bridging my neurosurgeon will not allow Lovenox for 4 weeks leaving unprotected. Too risky. And I've already experienced two clots thus far but far better than brain bleed which is a huge risk with this operation. List a friend...
  5. R

    What would you do?

    Thank you for your response. I'm 39, will be 40 soon. It's the vascular EDS that concerns me more and as I've almost lost my life to it already, and at the time I was off the Coumadin. EDS Type IV places one at grave risks of spontaneous eruptions and I am a young mother with an active child...
  6. R

    What would you do?

    It's been two years since I've had my Mechanical Valve Replacement for Mitral Stenosis which was induced from my Mitral Valve Repair w/ annuloplasty ring which was ultimately too tight causing severe stenosis and pulmonary hypertension. Since my MVR it's been nothing but problems - took 6mos to...
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