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Thread: I am a medical mystery . . .

  1. #1

    I am a medical mystery . . .

    It has been a year since my injury. I have finally regained strength, but still have no answers as to why this happened to me. I have no diagnosis.
    Last year, I started getting blood clots - one in my arm, then two more in my leg. When treated with blood thinners, I began to internally. I developed a hematoma on my spine and had emergency surgery to remove. Four days later, another had to be removed. I was tested for lupus and other autoimmune diseases and they said my blood work didn't really fit into any category.
    I was moved to another hospital for a higher level of care. I continued to bleed into other parts of my body and was given more and more transfusions. I believe, it was over 30 in all.
    Hematology believed it was a Factor 8 inhibitor problem. In other words, I was acting like a hemophiliac, but was not one.
    I agreed to try another surgery to "clean out " the mass on the spine. Unfortunately, the blood pooled again and was the size of a small football. The specialists basically gave up on a diagnosis, and began to concentrate on how to get me into the rehab. unit.
    Once in rehab. I was extremely weak, and since the wound was not healing right, a wound vac was installed. I was told I was a level T8, incomplete paraplegic!!
    After 5 mos., I left the hospital, mostly because I was afraid of being "poked and prodded" any longer. Outpatient began, as well as a line up of other specialists for second opinions. My hematologist told me that without a diagnosis, this could happen again, possibly up higher along my spine or a stroke. I am not on any blood thinners due to my extreme reaction to them. I do have the greenfield filter .
    The rheumatology/autoimmune specialist I am now seeing feels that commercial based testing (bloodwork) is not giving answers. He wants me to go to Strong Memorial for research based testing. My primary is in the process of getting this ready.
    My daily life exists of going to outpatient, seeing specialists, and trying my best to recover.
    I have developed severe neuropathic pain and spasticity. The meds. are taking any energy and quality of life from me. Pain Specialist suggests, perhaps time for the "pump." I don't know if any neurosurgeon would even try to operate on me with my history and lack of diagnosis.
    I have regained feeling, but no movement. I had to leave my family, and move in with my retired parents for "full time" care.
    I wish I had answers, I could handle being in the chair, but with all these complications and fears - my quality of life sucks. . . I've had to take the one day at a time approach. It is the only way to survive!!!!

    It's getting to the point where I'm no fun anymore . . .I am sorry!!!!!!!

  2. #2
    Super Moderator Sue Pendleton's Avatar
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    I can emphathize with the no energy part. During my first rehab I was so doped on pain meds and sick from antibiotics I was constantly tired. My saving grace was the pain specialist taking me off everything and putting me on low doses of methadone. So much easier on the body. I am still amazed people get high on that stuff. Anyway, I just needed it for several weeks and things improved rapidly.

    Good luck with the research docs. If they send you down to NIH for an inpatient stay give me a PM. It's not that far a trip for me. :-)
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  3. #3
    Senior Member wheelchairTITAN's Avatar
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    Sarah

    Thanks for sharing. Being able to write down what your feeling and thinking on any given day is important for you in the short and long term.

    One day at a time is sometimes the only thing we can do.

    William

    William

    ... rolling since 1989
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    BE NICE!It's free

    P.S. ~ I have "handicapabilities"

    TWITTER: @MacBerry

  4. #4
    Senior Member keps's Avatar
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    Hello and welcome, Sarah!

    What a lot you are having to deal with. I find your experiences interesting, as I had a spinal haematoma too, which left me a complete paraplegic.

    I had lots of blood tests, to see if I had a blood problem too. Nothing odd was found, and I was told it was just "one of those things", and that it was probably a one-off (I hope so!).
    I do fear if this has happened once, it might happen again.
    But like you, I think a "one day at a time" approach is best.

    How worrying for you to have all of these clots problems. In your case, certainly something is going on, and I hope you get some answers soon.

    We're all here for you at CareCure, whenever you need us.

  5. #5

    Hi Karen. .

    I would be interested in the details of your hematoma, I am told it's very rare to have that happen. I went to both specialists today, and the blood work is coming out fine for now. It is scarey, bec. you don't know if it can happen again.

    Thanks for all the input, everyone.
    It's getting to the point where I'm no fun anymore . . .I am sorry!!!!!!!

  6. #6
    Super Moderator Sue Pendleton's Avatar
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    You got answers the same day, Sarah? I had a specialist from Georgetown come and suck like 19 tubes of blood out of me in rehab trying to find a cause for my spinal stroke. It took weeks to get a we "still don't have a clue" what happened to you.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  7. #7
    Senior Member keps's Avatar
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    Quote Originally Posted by SARAH B
    I would be interested in the details of your hematoma, I am told it's very rare to have that happen. I went to both specialists today, and the blood work is coming out fine for now. It is scarey, bec. you don't know if it can happen again.

    Thanks for all the input, everyone.
    Hi Sarah. I had one doctor stood over my bed shaking his head and saying what had happened to me was extremely rare, and they had no idea why it had occurred.They said right from the beginning they had no idea.
    Unlike you, though, I hadn't had any previous problems with clots, and so far - touch wood - I haven't had any since.

    Basically one morning I was woken up by huge back pain, which radiated into my chest (I thought it was a heart attack). It felt like the pain was emanating from the bottom of my left shoulder blade, radiating through my upper back and chest.
    The pain was phenomenal, and when I got off my bed to tell my boyfriend I should go to hospital, I collapsed on the floor, as my legs has suddenly gone (paralysis, although I could not concentrate on anything much but the pain).
    Had emergency mri when I said I couldn't feel a nurse taking my shoes and socks off, which showed a mass on my spine. Got transferred to another hospital, and then had an emergency operation of 5 hours to remove the blood. Until they went in, they didn't know what it was on my spine, and I was told it could be a tumour.
    Apparently, I had an enormous clot on my spine. I was told pretty much straightaway that I had very little chance of ever walking again.

    My surgeon told me he had never heard of spontaneous spinal haematoma happening to anyone twice, but I think he was trying not to worry me.

    Did you get the big quiz about your history regarding bruising, clotting, bleeding etc? I had nothing out of the ordinary to speak of.

    I know I had a lot of blood taken for testing, but nothing odd was found there, either.

    I know of two other people (not members of this board), who have had spinal haematomas. But again, with them, they had a one off event like mine, with no previous or subsequent clotting problems.

  8. #8

    Thanks For the info, Karen....

    Now, the latest thinking with my "condition" is some sort of circulatory disease. It also has affected every aspect of my recovery. I have developed severe tone, and pain issues. I have very cold feet and hands all the time. I also think they will never have the answers. I do have a greenfield filter in place so if I have any clots in legs it will catch them.
    I will probably never know the whole story and still when I see Dr,s and Rn's at the Hospital, they remember me and are still amazed I survived it all.
    Sometimes, I wonder how much more I can survive, I don't really know how much more my family can take either. They seem so tired all the time. It's from constantly being on the go with me. I feel so bad for everyone. - esp. my kids.
    I feel very weak and tired all the time, too. My appetite sucks and I'm depressed. It's not like i've just been sittin home doing nothing. I go for help almost daily. Maybe, I just expect too much, too fast.
    It's getting to the point where I'm no fun anymore . . .I am sorry!!!!!!!

  9. #9
    Senior Member keps's Avatar
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    Hi Sarah, I'm really sorry you have all this to deal with. All I can suggest is you keep striving to get answers, and try to see the best medical people.

    I looked at your profile and saw you have been injured about a year - that's not all that long. I know many of us here still hadn't reached our full potential after being injured a year (I know I hadn't). I mean, not just physically, but mentally, in terms of dealing with the stuff that sci and related problems throws at us.

    It's only natural for you to feel tired of all this - anyone would who was dealing with what you are. I'm hoping for better things for you soon - and remember things may improve.

  10. #10

    Thanks for encouragement . . .

    I Have decided to try a new pain doctor and to be reevaluated for the baclofen pump. I am still not home with my daughter and boyfriend and it will be a year out of the hospital on April 1st!!!
    I cannot deal with all these meds any longer, my wheelchair is still not right, (comfortable), and I have decided that I do want to live. It's just a matter of how I am going to do it!!!!!
    It's getting to the point where I'm no fun anymore . . .I am sorry!!!!!!!

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