I am definitely not looking forward to the actual experience of an arthrogram, as I can't say they are comfortable. I have had 2 before--right wrist, left hip--and both times were excruciatingly painful. At least I know that I am going into my appointment with everything I need--as to not waste any time in scheduling surgery.
MRI Arthrogram
I heard back from Boston last week confirming that I need an MRI-Arthrogram of my left shoulder--I am interested to see how badly my labrum is torn after what I saw on the ultrasound. I have an appointment set up for Tuesday and we fly to Boston on Wednesday.
My name is Jill and I am 29 years old. I am a former competitive gymnast and I have Ehlers Danlos Syndrome (hEDS), Chiari Malformation- Type 1 (8.5mm herniation), craniocervical instability, Neurocardiogenic Syncope and POTS (forms of Dysautonomia and secondary conditions to EDS), slight/minor Mitral Valve Prolapse, bilateral acetabular hip dysplasia (corrected in a procedure called Periacetabular Osteotomy--PAO), gastroparesis and delayed intestinal motility, Hashimoto's, Graves', Autoimmune Neutropenia, and Complex Regional Pain Syndrome (CRPS).
hello, my name is sarah benoit and i was diagnosed with ehlers danlos hypermobility form 4 years ago, though i always knew there was something wrong since i've been in serious pain since i was 8, but every doctor told me there was nothing wrong. i'm not exactly the kinda girl that sits still very well so i spent my life training horses at a polo farm, and used to manage stabls wth up to 40 horses and nos it's all over! knowing what i know now i probably should've had a different career but i still don't regret getting to have my dream job. anyway, because i have had no help i've been trying to manage on my own, trying to stay in shape, eat well, but the damage is already done. both my wrists dislocate, shoulders, neck, knees, and i have a huge tear in the labrum in my left hip from when a horse landed on me 8 years ago. i have 2 daughters, and i was diagnosed after having my 4 year old. i just spent 8 months in the hospital (with complications from my tubal) and after spending a couple months in bed i got so weak i couldn't walk an was in a chair for 7 months...now i'm barely up on crutches but still can't walk on my left hip because of the torn labrum...lord i know his story is dragging on but my prblem is i can't seem to find one doctor in canada who knows ANYTHING about this disease and no one will do the surgery i need on my hip! if i don't get this surgery im really scared of what these crutches are gonna end up doing to my upper body (which is already screwed) if you know ANY doctors or surgeons and could give me ANY info i could give my dr here that would be so awesome! i just want to be able to get home and be a mother to my girls again! I am currently living in a hotel while my dr tries to find someone and i can't sit around and wait any longer! m e-mail is sarah.benoit@live.ca any info would be awesome! and omg sorry for rambling, i'm desperate and never know where to start when i have to explain this to ppl lol hope you are feeling alright
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