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Pre-surgical symptoms other than pain???

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  • Pre-surgical symptoms other than pain???

    Hi. I am 50 years old and was diagnosed at 12 with mild lateral scoliosis at the waist area. Fast forward to age 45 and I developed dysautonomia, or POTS(postural orthostatic tachycardia syndrome). Basically, when I stand up, my heart rate increases, as does my b/p, and then I feel faint. The basis for all this is blood pools in the lower extremities and the brain does not get enough, so the body goes in panic mode.

    Anyway, since that started, I have had to do ALOT of sitting. I don't work, as I can't drive, so spend most of my time at home, sitting in my recliner.

    Over the last few years I have come to be able to only sit comfortably in a set position--leaning a little to the right and somewhat slumped. If I sit in a straight back chair, I start feeling like my abdominal contents are pushing into my chest, then my chest feels pressured and then I feel pressure in my face/head. I know this sounds a little weird,but it happens every time. I am limited to sitting in my vehicle with the seat somewhat reclined, I bring a lawn chair to doctors appts. as it is floppy and allows me to slump some.

    This has gotten out of hand and am now wondering if it could be that my scoliosis has gotten alot worse. I think I now have it in my thoracic area, as I seem to have one shoulder droop more than the other.

    Did anyone ever feel like their stomachs were being pushed up into their chest area when sitting? Did you ever feel like your blood circulation in your chest area was being pressed on and uncomfortable when forced to sit in an awkward position?

    Did you ever have problems with sitting that felt awkward????

    I am so lost! I appreciate anyone's stories. I am going to make an appt. with a Houston doctor, but it is such a hassle as I get lightheaded walking those huge buildings, can't sit straight up so have recently asked offices if I could wait in a room where i could lay on my side.

  • #2
    Hi Sue. I wish I had something practical to say but I don't have any experience with this problem which must be life-changing. Your post opens up lots of questions but no answers for me. Are you seeing a Scoliosis surgeon in Houston? If not, what kind of doctor?

    I hope you get some answers. Welcome to the forum.
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

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    • #3
      Sue,

      I haven't had this problem, but there was a thread on here recently that talked about "turned heart," and some of the replies talked about organs that have shifted. Another person posted recently about scoliosis affecting her stomach and surgery helping to reduce acid reflux. My surgeon has told me that if I don't have my scoliosis corrected, it will affect my organs. So, while I don't know about your problem specifically, it sounds rather common for severe scoliosis to affect various organs. Do a search for "heart" and "stomach" and you will probably come across various posts.

      Also, I think almost all of us have had discomfort with various sitting positions, though possibly for different reasons.

      Good luck! Let us know what your doctor says.

      Evelyn
      age 48
      80* thoracolumbar; 40* thoracic
      Reduced to ~16* thoracolumbar; ~0* thoracic
      Surgery 3/14/12 with Dr. Lenke in St. Louis, T4 to S1 with pelvic fixation
      Broken rods 12/1/19; scheduled for revision fusion L1-L3-4 with Dr. Lenke 2/4/2020
      Not "confused" anymore, but don't know how to change my username.

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      • #4
        Jennifer,

        I am planning on finding an orthopedic surgeon in Houston. I guess I even wonder if my orthostatic issues could be standing at a bad angle and organs pressing on my large vessels in the abdomen. I could mentally picture that as having a large impact on my circulation. I guess I'll ask that in another post!

        Evelyn,

        I will look up stomach and other certain things. Stomach bloating is a HUGE issue for me and wonder if it would just be mild if I was standing up straight.

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        • #5
          Sue, Sorry you're in so much discomfort. I truly hope you are able to get to the doctor to see how much your curves have progressed and how the symptoms may be related. I've had symptoms other than pain, that bother me more than the pain actually. I have problems breathing when sleeping in certain postions, and at times feel some difficulty breathing. I have gone regularly to a pulmonologist over the past few years and have mild restrictive lung disease. He believes this is from the scoli.. I also have something called LPR. It's reflux that come the top part of the esophogus valve not closing properly and causes my voice to become hoarse and have post nasal drip. The Ear Nose and Throat doc thinks this is also from the scoli.. I'm not sure what the surgery will correct other than straightening my spine, but believe these symptoms are related and will only get worse if I don't have the corrective surgery. I know you'll find good docs in Houston that can accomodate you, you can put a note out to others in that area. Keep us posted.
          Debra
          Age 45
          Pre - surgery Thoracic 69, Lumbar 48
          Post-surgery Thoracic 37, Lumbar 39 (unfused)
          Fused T4-T12
          Milwaukee braced, 11 years old to 15 yo
          Surgery Sept. 1st, 2010 Dr. Boachie

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          • #6
            Greetings!

            Reading about your problem, I remembered postings from tonibunny who replied to my Ehler-Danlos thread with reports of her own experiences, including POTS. She related it to her EDS.

            I too experienced much the same but it was confounded with a medication side-effect (wound me in the hospital for ten days after I was in and out of consciousness for three days, io the floor of my home.).

            Here is the thread in question - notice tonibunny's entry, after my long intro. You might want to write her about it.

            http://www.scoliosis.org/forum/showthread.php?t=10451

            Note that there is a medicine that treats the symptom also described in her post. It's what I used to get out of the hospital. One of the conditions they needed to R/O with me was familial dysautonomia.

            Best of luck. It's a horrible feeling! I was completely unable to stand or walk because of blacking out.
            Not all diagnosed (still having tests and consults) but so far:
            Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
            main curve L Cobb 60, compensating T curve ~ 30
            Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

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