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  • #16
    Originally posted by Singer
    Thank you, ladies.

    The overriding feeling I have that I wish I DIDN'T have (aside from pain) is that I am afraid of my spine....fearful of injuring it. I think I may be losing perspective on things and may take a break from the Forum for a while, as it has been feeding my fears and worries lately.
    Chris

    At 7 months post op I had pain and at times bad but I was afraid to go back on the prescription pain meds too. Now I am almost 1 yr. post op and for the last couple of months the pain has reduced a great deal, and I have a staph infection and crooked hardware that will soon be removed. It’s normal to worry about hurting you back. You have been through a lot physically and mentally so continue to stay strong you are doing fine.
    Sue

    Comment


    • #17
      Chris:

      The pain doc is the right source.
      Neurontin(gabapentin) was given to me and helped nerve pain like nothing else;
      certain antidepressants have great pain relieving abilities, especially easing one off narcotics. The TENS machine, when properly used(the manual is a great help) is very effective.
      Also, what works for one does not always work for another.
      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


      • #18
        Hi Chris,

        Sorry to hear that your nagging pain is getting you down. Like you, I take copious amounts of Tylenol. I'm also afraid for my liver so I only smell the wine cork at dinner. I got a bit braver on New Year's Eve and had a half of a glass of champagne. Before surgery, I took Arthrotec for arthritis pain in my back and many other body parts. It was tough on my stomach but an effective pain reliever. Dr. Rand has asked that I stay off it for another 3 months. I miss it. It might be worth asking your pain doc if there is a non-steroidal pain medication that is used for arthritis pain that you could try.

        At my 6 month check up, I got the ok to start PT. It is a pool and land program. Yesterday was my first session. I cannot tell you how good it felt to be submerged in the warm water. I could feel the lobster claw/bear claw lessening its grip on the mid section of my back. The therapist also suggested I try some acupuncture for the spasms and nerve pain. So I did that today. I also have the heating pad on when I go to bed -- the automatic timer shuts it off after a few hours hopefully while I am asleep.
        When I compare my current pain level to where I was a year ago, there is no question that it is both different and less than what I had become used to for many years.

        My pre-surgical expectation of being totally pain free after surgery was perhaps a bit too optimistic. One of the house docs at the rehab hospital had a candid chat with me before my final discharge. He said, "Get a grip, Linda. You will never be totally painfree with 3 pounds of stainless steel in your back. You will experience far less pain than you ever had before but you will probably always have a bit of a back ache." I was still pretty highly medicated at that time and probably just smiled and said "Thank you" without absorbing what he was really saying. My worst days now are 100% better than my best days before surgery. My correction is about 50% and it works well for me as I am pretty well balanced and standing straight. I did come out with some weakness in my right arm which is getting better over time, and I am hopeful that it will be completely resolved.

        I can totally understand if you decide to take a break from the Forum. Please know, however, that many of us would miss you and your honest, candid posts and your sense of humor. Where else could you find such a sympatico group of friends who are here for you duirng the good, the bad and the ugly? If you take a break, don't stay away too long.

        Linda
        Linda
        Two-stage A/P fusion T6-S1 with lumbar implants June 12 & June 27, 2007 at age 57
        S curve 75+ degrees with kyphosis
        Now 45 degrees and standing 3 inches taller!
        Dr. Frank Rand, New England Baptist Hospital, Boston

        Comment


        • #19
          You guys are so sweet...thank you.

          Thank you so much for the encouragement.

          I see my pain management doc on Thursday and will have a heart-to-heart with him and take some of your ideas with me.

          This has just been such a scary surgery and recovery. I wasn't prepared for how challenging it was going to be! I don't want to scare anyone facing this soon; it's just the way it's been for me.
          Chris
          A/P fusion on June 19, 2007 at age 52; T10-L5
          Pre-op thoracolumbar curve: 70 degrees
          Post-op curve: 12 degrees
          Dr. Boachie-adjei, HSS, New York

          Comment


          • #20
            Joann5 & others---I totally agree with you Joann about the P.T. I have been the only scoliosis surgery case in the out bound rehab center I go to(as I continue to use their facility) & I can tell you they did not seem to know what to do with me in the beginning on exercises though they worked it out. I continue to do the same routine now & can only hope it's doing me good. I am now wondering what exercises others are doing who have the lower fusion??
            thks-Lynne

            Comment


            • #21
              Hi Chris

              I feel that I can relate to you because my surgeries were June 26,27 and July 3, 2008. I had 3 surgeries because during my 2nd surgery I bled too much. I am still in pain and I am limited to what I can do. I don't want to get hooked on the pain meds but it does help alot. My dr took me off oxycontin and oxycodone and gave me ultram. He said it is stronger than a tylenol and not a narcotic. I've been taking this since the beginning of January, it eases the pain a little, b ut I am glad it is not a narcotic. Now I wonder if my pain will ever go away. Also my legs are very weak and my hamstrings are extremely tight. The dr said this is all due to to the muscles and nerves being manipulated with during the surgeries. The dr feels that I should give it a year and then see how I feel.

              I guess we all have to hang in there and hope for the better

              Thanks for listening
              Maria

              Comment


              • #22
                I don't know if it would be of any help with your cases, but my doctor prescribed PT for me at 6 months post-op, but for legs and arms only-- nothing that would be stress/strain on my back. I realize some P.therapists may not know what is ok or not, totally, but that's not to say they can't help. There were a couple of things I said "let's wait till I check with my scoli nurse"-- one was ok and one was ABSOLUTELY NOT!!!! That's how she put it. (It was a "bridging" exercise...) And she said the golden rule is, if it hurts, don't do it. I am amazed at the difference in both my arms and legs from before I started, but especially so with my legs-- including stretching the hamstrings. Even though my PT guy wasn't totally right in all things, he was so good and helpful, and very cautious. He started me off very slowly and conservatively, but built me up within those 6-7 weeks quite a bit. I miss going there! He's hoping I can come back when I've been cleared to do more with my back. In the meantime, I'm keeping up with my home regimen...
                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


                • #23
                  "copious amounts of Tylenol

                  I take copious amounts of Tylenol.
                  Linda W

                  My pain doc said the maximum safe dose of Acetaminophen(Tylenol) is 4 gm a day(4,000mgm). This would mean 2 Tylenol Arthritis 3 times a day. Also watch any other medications with acetaminophen hidden in their composition.
                  Problems with the liver came from taking it with alcohol-since it's metabolized by the liver or taking excessive amounts.
                  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


                  • #24
                    Thank you, Karen Ocker!

                    Karen,

                    Thank you for your note. My personal limit is 4,000 mgm per day of Tylenol. I have been at 4,000 for a long time, and I'm careful to insure that I am not taking anything else with hidden Tylenol in it. I'm actively working to bring my current use down to 3,000 - 2,000 mgm. Believe me, when I say I only smell the wine cork!

                    Thank you also for your consistent, helpful and thorough responses on this Forum. I'm certain that all of us appreciate and benefit from your experience and wealth of knowledge. Thank you!

                    Linda W.
                    Linda
                    Two-stage A/P fusion T6-S1 with lumbar implants June 12 & June 27, 2007 at age 57
                    S curve 75+ degrees with kyphosis
                    Now 45 degrees and standing 3 inches taller!
                    Dr. Frank Rand, New England Baptist Hospital, Boston

                    Comment


                    • #25
                      CarolS,

                      I didn't realize that I had saved that many messages in my box! Thanks for letting me know. It is now empty.
                      Theresa

                      April 8 & 12, 2004 - Anterior/Posterior surgery 15 hours & 7 hours
                      Thorasic - 79 degree down to 22
                      Lumbar - 44 degree down to 18
                      Fused T2 to sacrum
                      June 2, 2005 - Pedicle subtraction osteotomy @L3 7 hours
                      MAY 21, 2007 - Pedicle subtraction osteotomy @ L2, extended the fusion to S2 and added pelvic instrumentation 9 hours

                      FUSED T2 - SACRUM 2

                      Comment


                      • #26
                        have you tried using a TENS unit??? I've got the IF3 wave and that does wonders. Use that with an herbal heat pack you pop in the microwave and voila! I try to stay off meds as much as I can. I don't want to give the govt a reason not to keep me around. lol
                        25 yr old female =^_^=
                        Thoracic curve 48 degrees (with kyphosis)
                        Lumbar curve 23 degrees
                        surgery from t5-l1 25 July 2005
                        Two rods and 16 screws later . . . 0 degrees YAY!

                        Comment


                        • #27
                          It breaks my heart to read so many reports of you people having to take pills for pain. Nobody seems to have picked up on Susie's post about being helped by physical therapy. To me that is the first thing I'd try.

                          In fact I did (for scoliosis, though not post-op), and it worked. I have no more pain. In my case some simple physiotherapy exercises did the trick. I know people including a post-op whose cases are more complex but who also reduced or eliminated their pain with proper exercises.

                          I suspect the hardest part may be finding a PT who can accurately diagnose the source of the pain and design the right regimen for you.

                          Comment


                          • #28
                            Writer,
                            I wouldn't be to quick to label everyone with one brush stroke. Granted there are those out there who do not exercise and therefore make their conditions worse but I for one did yoga daily, exercised 5 times a week, worked in a very active enviroment, had tried Chiropractors, Massage, Physio Therapy, reflexology, and even a cortisone shot once. My surgeon told me I had done everything possible to keep my back as healthy as I could but with degeneration it was inevitable that I would need surgery one day.
                            CarolS
                            68 degree right lumbar scoliosis, mild kyphosis at L1-2
                            Anterior/Posterior Correction, T8 to Sacrum, Sept 20th, 2007
                            Osteotomy March 20,2008
                            Thrilled with results!

                            Comment


                            • #29
                              I'm afraid the point has been missed. Most of us have tried regimens that did little or no good. I suggest that if the right exercises are prescribed and performed, then physical exercises will often alleviate a great deal of pain and the need for drugs. An example:

                              http://www.ministryhealth.org/displa...px?DocID=27612

                              Comment

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