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  • Unresolved problem since May

    Hi everyone,
    I haven't posted regularly as nothing new has been happening worth mentioning and possibly not associated to the surgery.

    I travelled to STL early May for my 6 mos checkup. Structurally everything was fine. I fell over one night on the toilet breaking the tank in half from bottom up all because I did not want to turn the lights on to wake up people. That was on a Friday night and my visit to Bridwell was on a Monday. I was limping a bit but xrays to him looked good.

    During that visit, I now remember the lost of taste. We had gone out frequently with my niece and 2 daughters. Tapas night was ordinary, Dim Sum was bland, Sushi was not worth the price and indian smell good but tasteless.

    Coming home, I bought a treadmill for home in Mexico as the apt complex in El Centro, CA has a gym. As per the PT I should be walking 1.8 m/h by the one year mark but I only heard the first half. So after the first week, I reached 2.0m/h and proud. 2 wks later, I was in so much butt pain that I can hardly walk or sit. I knew I dislodged some newly reattached tissues etc.

    Then, I noticed the lack of taste. Salt at first but not sugar. Now it is everything except a little of salt. Smelling ability is super strong, I cook my favorite and one taste and I am done.

    Therefore I am not eating. Some food I hunger, some I put in my mouth and gag. Some are revolting just to imagine. My GI started bothering me a lot.

    My palms are getting dark spots but not the finger tips which has remained pink. However, the other side of the hand, the nails are separating. Some already halfway the finger. A bit of uncomfort but devastating to see it progress. The thumbs have dark brown starting from cuticle up to tip of finger (slow process).

    I don't wash dishes, don't cook, don't eat. Lost 10 lbs.

    Been to my GP twice, dentist becuase in addition I bite my tongue, my OB/GYN has no idea, the dermatologist checked all my moles and spots but was in awe of my fingers and palm. Only person mentioning mal-nutrition and suggested to take Centrum.

    That's all. Nothing in the web. Thought someone could have some idea as to who can take a look. Certainly Dr Bridwell would not have a clue.

    Help! Mentioning depression is un necessary.

    Gardenia
    Gardenia
    Baja California, Mexico & El Centro, Ca
    pre-surgery 75° and 89° - post ?
    Dr. Bridwell Nov 27, 2012 @Barnes Jewish @62yrs
    T11 to Sacrum Dural leak at L2 & L3 ccmail4g@gmail.com

  • #2
    Has any of your meds changed in this time frame?
    Diagnosed at age 12 with a double major curve

    Braced till age 15

    SSBOB T12-L2 Anterior age 34. (October 22,2012) Dr. Robert Gaines Jr. ( Columbia, MO)

    Revision Surgery T2-Sacrum with Pelvic Fixation Prosterior age 35 (November 13,2013) Dr. Michael Kelly (St. Louis, MO)

    Revision Surgery L4/L5 due to BMP Complication age 36 (November 20,2014) Dr. Michael Kelly (St. Louis, Mo)

    Revision Surgery due to broken rod scheduled for October 19, 2016 with Dr. Michael Kelly (St. Louis, MO)

    Comment


    • #3
      I have no idea of what could be happening but I did want to say that I am very sorry to hear of your problems .

      I hope that you find some answers soon

      Melissa
      Melissa

      Fused from C2 - sacrum 7/2011

      April 21, 2020- another broken rod surgery

      Comment


      • #4
        Me neither Gardenia. I'm sorry to hear this. I know it must be scary. Can your GP refer you to a specialist? Just not sure what type.
        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

        Comment


        • #5
          Went to the Endocrin... person

          Could not get in to see the doctor but only the PA. What a wonderful and knowledgebla person spent a whole hour.

          1. Back to Omeprezol if it worked before why stop?
          2. Will proceed with and endoscopy to find out what is happening in that region.

          But a couple of questions: About the and dark palms & nails she does not like is
          a) had I been in any accidents, cuts, etc requiring a transfusion... it could be HIV or AIDS
          b) When was my last colonoscopy as it might suggest some type of cancer... NEVER! has just become the 14th of August.

          My Mother had a quadruple bypass at 79 years old at Stanford University. After 2 years, the hospital send us a letter. Her transfusion has been contaminated with HIV. So this is very close to home and nothing to laugh at. Barnes Jewish? hope not.

          Oh well, if all this was a mental thing to lose weight then I better start eating.

          Thanks for the responses but it will be nothing at the end.
          Gardenia
          Baja California, Mexico & El Centro, Ca
          pre-surgery 75° and 89° - post ?
          Dr. Bridwell Nov 27, 2012 @Barnes Jewish @62yrs
          T11 to Sacrum Dural leak at L2 & L3 ccmail4g@gmail.com

          Comment


          • #6
            Gardenia--
            I'm so sorry you are having all of these problems. When I first started reading about your fall and breaking toilet tank, I thought that had to be a very huge fall. I was talking to a friend last night who said she had seizures in 05 and besides losing parts of her memory she lost her sense of smell totally. I know that's different than your case but the taste and smell are so interrelated. Could the fall have been more than just a fall? I know there are a lot of other strange symptoms too I have no idea about. I'd sure keep seeing doctors until one sends you to the right specialist! You need some nutrition as you heal. Good luck. Janet
            Janet

            61 years old--57 for surgery

            Diagnosed in 1965 at age of 13--no brace
            Thoracic Curve: 96 degrees to 35 degrees
            Lumbar Curve: 63 degrees to 5 degrees
            Surgery with Dr. Lenke in St. Louis--March 30, 2009
            T-2 to Pelvis, and hopefully all posterior procedure.

            All was posterior along with 2 cages and 6 osteotomies.

            Comment


            • #7
              Janet,
              Thanks for the update. When I fell breaking the toilet tank, it was my lower hip butt area. I did not harm my upper body.

              My nails continue to separate and my palm is blotchy.

              The PA called me at 9pm and left a voice message to go to her office prior to getting the blood test. She was thinking about my case all day and think that my LEAD & MERCURY levels should be tested.

              We live in a brand new constructed house and the paint was purchase in the U.S. I don't eat a lot of salmon specially down in Baja.

              So we wait.
              Gardenia
              Baja California, Mexico & El Centro, Ca
              pre-surgery 75° and 89° - post ?
              Dr. Bridwell Nov 27, 2012 @Barnes Jewish @62yrs
              T11 to Sacrum Dural leak at L2 & L3 ccmail4g@gmail.com

              Comment


              • #8
                Nails, etc.

                http://www.medicinenet.com/nail_disc...n/symptoms.htm

                You can look at this link from Medicinenet maybe to understand some causes.
                Karen
                Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
                Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

                Comment


                • #9
                  Nutrition

                  Hi, I don't know why you have these symtoms. I do know that in 2008 I stopped eating because of some serious GI problems. My opening that the food is suppose to drop through closed completley and until they figured it out I lived on Boost. And it took a year to figure out what was going on and what to do. Believe me , it kept me alive. It's great nutrition. I couldn't keep anything else down. Just thought I would share this , although I realize yours is a different situation with the smell and taste problem. I do know my Boost has to be very cold to drink. Would a endocrinologist be a specialist you could consider? They have a lot to do with hormones functioning right. That includes thyroid, adrenal, any hormone in the body. They can cause a lot of problems. Just a note, my grandmother lost her sense of smell from some kind of flu she had years ago.
                  My thoughts and prayers are with you. It's tough enough healing from huge spine surgeries, let alone have other worries. God Bless~~~Linda
                  Linda Brozik~~60 yrs. old at time of Lenke's first surgery. 62 now!
                  Surgery 2006 L3/4 L4/5 double fusion/ instumentation/ With 2 cages
                  This started adult onset scoliosis
                  July 1st, 2010/ surgery ~~fused T10 to pelvis (long rods/ screws)
                  Oct.20th 2010, extended rods to T4 / did osteotomy at L3
                  Oct. 29th 2012 Dr. Lenke St. Louis Mo. T4 to sacrum osteotomy anterior cage L3/4 titanium rods
                  May 30th 2013 revision
                  May 8th cervicle surgery 2016
                  May 31st Dr. Gupta revision 2017

                  Comment


                  • #10
                    I'm so sorry to hear of your problems! This article says you should see an ear, nose and throat doctor to have tests about your sense of taste... http://www.nidcd.nih.gov/health/smel...ges/taste.aspx

                    Here is also a Mayo Clinic article on nails: http://www.mayoclinic.com/health/nails/WO00055

                    You may have just hit the tank of the toilet so hard that you did some damage that is manifesting itself in many ways. (Obviously, I don't know.) I wish you the best in finding out the cause of these problems.
                    71 and plugging along... but having some problems
                    2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
                    5/4/07 posterior fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
                    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

                    Corrected to 15°
                    CMT (type 2) DX in 2014, progressing
                    10/2018 x-rays - spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

                    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

                    Comment


                    • #11
                      Hey gardenia,

                      So sorry you are going through all this!! How did you know I was going to say depression? It can cause a lack of taste. But it sounds like you've got more than that going on. Just some random thoughts...hand, foot & mouth disease (a virus)? Could you have cause some minor head trauma with you fall that is affecting your brain & hence sense of smell? Could the hand problems be fungus? We are given a lot of antibiotics with spine surgery, which tends to promote fungal growth. I will pray for you that your problems get diagnosed and resolved quickly! Thinking of you.

                      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.

                      Comment


                      • #12
                        Hello Friends,
                        Thank you for being out there for me. I appreciate that you are someone who understands. It is ok that you do not have an answer but you don't casually say: "UHM, I don't know. It must be a vitamin deficiency or something." Thank you Dr. Dematologist.

                        Aug 14th - I get so more tests.

                        Gardenia
                        Gardenia
                        Baja California, Mexico & El Centro, Ca
                        pre-surgery 75° and 89° - post ?
                        Dr. Bridwell Nov 27, 2012 @Barnes Jewish @62yrs
                        T11 to Sacrum Dural leak at L2 & L3 ccmail4g@gmail.com

                        Comment


                        • #13
                          Thinking of you, Gardenia, and hoping the tests will help discover what is going on and you can get relief.
                          Karen

                          Surgery-Jan. 5, 2011-Dr. Lenke
                          Fusion T-4-sacrum-2 cages/5 osteotomies
                          70 degree thoracolumbar corrected to 25
                          Rib Hump-GONE!
                          Age-60 at the time of surgery
                          Now 66
                          Avid Golfer & Tap Dancer
                          Retired Kdgn. Teacher

                          See photobucket link for:
                          Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
                          Before and After Picture of back 1/7/11
                          tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
                          http://s1119.photobucket.com/albums/k630/pottoff2/

                          Comment


                          • #14
                            I hope that you get some answers which will lead you to some relief

                            Melissa
                            Melissa

                            Fused from C2 - sacrum 7/2011

                            April 21, 2020- another broken rod surgery

                            Comment


                            • #15
                              EOSINOPLIC GASTROenteritis

                              Entire tract severely inflamed due to over production of eosinophils = histamines

                              On Prednisone (used for an eternity by medical world)

                              Diagnosis: commonly known but caused unknowned other than blame it on food or environmental ALLERGIES and we all know how vague that is.

                              slowly back to normal, very slowly

                              lost 20 lbs
                              Gardenia
                              Baja California, Mexico & El Centro, Ca
                              pre-surgery 75° and 89° - post ?
                              Dr. Bridwell Nov 27, 2012 @Barnes Jewish @62yrs
                              T11 to Sacrum Dural leak at L2 & L3 ccmail4g@gmail.com

                              Comment

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