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  • #46
    hi rohr
    i am sorry your massages aren't working out...i don't think i could bring myself to let a massage
    therapist make things worse in hope of making things better eventually...

    i am waiting on the blood work so i can have my bio identical hormones checked at the same time...
    to do that, it has to be after the 20th of the month...i forgot about that when i planned my lab
    visit...it is to kill 2 birds with one stone, so to speak....

    i would not let any doctor implant anything for pain management...i had a catheter implanted in my
    chest years ago, for IV antibiotics (for Lyme)...risk of infection...i think what you are talking about
    would be deep under the skin, so infection risk would be minimal, but i just don't like the idea...
    creeps me out for some reason...
    i will probably try nerve ablation....and maybe facet block....
    the NYC pain doc who gives me my oral meds does not know i had shots with CT pain doc...
    and the CT guy doesn't seem to care at all about my cortisol problem...i doubt i will go back to him,
    unless i believe he can do the procedures i want done better than my NY doc...

    i hope you find a way to get relief....chronic pain can be so wearing...and grinding on the spirit....

    jess...& Sparky

    Comment


    • #47
      Hi Jess,
      I was thinking of you and wondering if your cortisol levels were returning to normal by now. I sure hope so. Let us know what the results are. You are so right about pain grinding on the spirit. When your cortisol levels are back up to normal, will you be considering surgery? It almost seems to be your best option. Unfortunately, scoliosis is not something that gets better on its own over time.
      We just got back from a vacation in Arizona to see Sedona and the Grand Canyon, two of God's grand masterpieces, so awesome and now I have a case of shingles near my left eye that is getting more painful as the days go by. I am on medication and my eye is fine, so hopefully this pain will go away soon. Just one more pain to add to the others. Oh well.

      Praying for you, Sally
      Diagnosed with severe lumbar scoliosis at age 65.
      Posterior Fusion L2-S1 on 12/4/2007. age 67
      Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
      Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
      New England Baptist Hospital, Boston, MA
      Dr. Frank F. Rands735.photobucket.com/albums/ww360/butterflyfive/

      "In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.

      Comment


      • #48
        My concerns for you Jess.

        Jess, My fear for you is, that when you get up enough courage to go through with the surgery, your body will be very deconditioned from the pain and the lowered cortisol. Your cortisol supply is needed to deal with surgical stress,healing and immunity. If you would need surgery tomorrow, for say an appendectomy, you would need IV steroids to prevent a dangerous blood pressure drop. Adrenal recovery varies from person to person and is not predictable. It cannot be sped up with any supplements or therapies. At least that is what the scholarly literature says.
        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


        • #49
          thank you, Sally...for your concern..and i hope the case of shingles you got goes away fast....
          i know it is painful, and a nuisance...hope the medicine does the job...i am glad you got to take a nice trip...it sounds
          beautiful

          Karen... thank you for your concerns as well....
          no one would allow me to have surgery with low cortisol levels....it was .39 in easrly February...
          i will have blood drawn next week, April 24th, so i can have lots of tests done at the same time....
          i am hoping the level is going up, though i do not have a whole lot more energy....
          just a lot more lumbar pain....
          i have not made any decision about spinal surgery....i am trying to relax and take one thing
          at a time....

          wishing you both a happy spring....
          jess...& Sparky

          Comment


          • #50
            finally heard from endocrinologist this morning...
            my cortisol is at 2.1, up from .39
            ACTH is 18, up from below 2
            doctor said cortisol numbers usually lag behind ACTH numbers...
            then i saw my GP for scheduled appt...she has Addison's disease herself, so knows this stuff
            from her own experience....
            she said i will feel crappy for a while with cortisol under 5.0, but that
            it is a good sign that ACTH came up...so she is hopeful...
            said i was pretty sick with previous numbers...i know it took all my energy
            to lay in bed and breathe...just breathe in and out...
            i feel better than that point, but still quite tired...
            also...i noticed i do not heal well, and hair and nails seem to grow slowly...
            i asked GP...she said i am right, it is not my imagination...all those things
            are true with low cortisol...

            jess...& Sparky

            Comment


            • #51
              Jess,

              I hope you start to feel better soon

              Melissa
              Melissa

              Fused from C2 - sacrum 7/2011

              April 21, 2020- another broken rod surgery

              Comment


              • #52
                Jess, I'm really happy for you. That's great news! I really didn't expect them to recover as much as they did for some reason. By the next time you have it checked, it may well be in the normal range again. We can always be hopeful. This is exactly what my docs are afraid of for me.

                As I told you in PM, I fell again today. I'm going to try to tough it out until my Botox appt. I've had a LOT of steroids in different forms lately AND if it turns out that my GI problems are something like colitis, chron's, or the lot, short term steroids are the treatment for that. I explained to the gastroenterologist my concerns about steroids just to make sure everyone is on the same page.

                I wish you all the best and am very hopeful that you will completely recover from this setback. Just take extra good care of yourself so you don't need any kind of surgery until you are well.

                ((((HUGS))))
                Rohrer01
                Be happy!
                We don't know what tomorrow brings,
                but we are alive today!

                Comment


                • #53
                  dear Melissa and rohr...
                  thank you both so much for your kind words...
                  i am glad things are going in the right direction, and hope time will be the answer, without
                  needs for any meds...

                  rohr, i am worried and wonder if, after all the steroids shots, that you need a cortisol check...?
                  are you sure you are not falling from getting a little dizzy...it can happen with low cortisol....
                  i know other things could cause you to fall...but it takes a blood test, results can be fast....
                  mine were slow due to doctor being busy...but you could know in a day or two....
                  please think about it...you do not need any more falls....
                  and i wonder how tired you are....?
                  just concerned...

                  jess...& Sparky
                  Last edited by jrnyc; 05-09-2012, 01:30 AM.

                  Comment


                  • #54
                    Keeping my fingers crossed that things keep going in the right direction Jess.
                    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
                    ---------------------------------------------------------------------------------------------------------------------------------------------------
                    Surgery 2/10/93 A/P fusion T4-L3
                    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

                    Comment


                    • #55
                      Dear Jess,
                      I'm so glad that your Cortisol levels are moving in the right direction. I can't imagine how awful you must feel. In recovering from the shingles, I have had a couple of days where I couldn't fight my way out of a paper bag. I surely hope your energy level starts to improve very soon.
                      I'm having one of those night where I can't sleep and laying in bed, the restless leg syndrome started up, so here I am at the computer trying to keep my eyes open.
                      Take care, Sally
                      Diagnosed with severe lumbar scoliosis at age 65.
                      Posterior Fusion L2-S1 on 12/4/2007. age 67
                      Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
                      Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
                      New England Baptist Hospital, Boston, MA
                      Dr. Frank F. Rands735.photobucket.com/albums/ww360/butterflyfive/

                      "In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.

                      Comment


                      • #56
                        Hope your body can keep up the momentum Jess and you're feeling better very soon.
                        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


                        • #57
                          Originally posted by loves to skate View Post
                          Dear Jess,
                          I'm so glad that your Cortisol levels are moving in the right direction. I can't imagine how awful you must feel. In recovering from the shingles, I have had a couple of days where I couldn't fight my way out of a paper bag. I surely hope your energy level starts to improve very soon.
                          I'm having one of those night where I can't sleep and laying in bed, the restless leg syndrome started up, so here I am at the computer trying to keep my eyes open.
                          Take care, Sally
                          Just a side Sally, did you have the shingles vaccine? If you didn't I believe that you can still have it even if you have had shingles. Sorry about the shingles. That is misarable! I had a very mild case, but caught it very early since I knew what it was and started medication immediately upon the first sign of the tingling.
                          Susan
                          Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis

                          2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
                          2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
                          2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
                          2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
                          2018: Removal L4,5 screw
                          2021: Removal T1 screw & rod

                          Comment


                          • #58
                            Linda, Sally, Jenn...thank you all so much for the kind words and thoughts...
                            i am still really tired, but the overwhelming exhaustion that i first felt when
                            my cortisol was at .39 has lifted somewhat...it was as awful as you said, Sally...
                            and i know shingles is terrible...years ago, my mother had it...really bad to go thru...
                            i hope you feel better every day....

                            jess...& Sparky

                            Comment


                            • #59
                              Originally posted by susancook View Post
                              Just a side Sally, did you have the shingles vaccine? If you didn't I believe that you can still have it even if you have had shingles. Sorry about the shingles. That is misarable! I had a very mild case, but caught it very early since I knew what it was and started medication immediately upon the first sign of the tingling.
                              Susan
                              Yes, Susan, I had the vaccine pretty close to when it became available (about 5 years ago?), so I had a very mild case and I too caught it very early on. Actually I thought I had poison ivy and as good luck would have it, I had an appointment with my Dermatologist the day after the blisters appeared. He knew right away and got me on medication the same day and made me get an appointment with my Ophthalmologist the same day. The blisters were scabbed over in one week and it took me another week to recover with no residual pain. I have heard of so many people who got the shingles and were young. Now the vaccine is available to people aged 50 and over, I believe. Thanks for asking.

                              Feel better Jess, Sally
                              Diagnosed with severe lumbar scoliosis at age 65.
                              Posterior Fusion L2-S1 on 12/4/2007. age 67
                              Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
                              Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
                              New England Baptist Hospital, Boston, MA
                              Dr. Frank F. Rands735.photobucket.com/albums/ww360/butterflyfive/

                              "In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.

                              Comment


                              • #60
                                Shingles/vaccine

                                The vaccine is covered under the Affordable care Act/those on Medicare have price reductions using Medicare Part D. The vaccine is expensive.
                                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

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