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  • Re: fear before surgery

    I'm starting a new thread because i see this issue expressed in parts of many threads. I am a recently retired 59yo ENT surgeon. In my career I performed over 30,000 surgeries, major and minor. I have had 2 minor back surgeries already and am now scheduled for T11 - sacrum fusion with Dr Lenke in a month. This gives me perspective from the point of view of doctor and patient. I think the following points might reassure those who fear upcoming surgery:

    1. it is human nature to first think about the worst possible thing that could happen, so it is entirely normal to worry about complications; all the fears expressed on this forum are ones i heard from my patients on a daily basis
    2. dire complications are rare; with advances in anesthesia monitoring and nerve monitoring during the surgery, the risks of death or paralysis are miniscule
    3. almost all complications are treatable; they may cause some increased discomfort, length of hospitalization and inconvenience but, in the end, will not effect the outcome of the surgery nor your satisfaction with the result
    4. keep in mind, this isn't cancer; our biggest problem is pain and pain is always treatable
    5. there is dual responsibility: the surgeon does his part, then the patient has to do his/her part in the recovery/healing process; it is best faced with a positive attitude as one would face life's other challenges

    i remember, with our third child, my wife needed a C-section; a lawyer friend asked me, "weren't you worried, since you work at the hospital you know about all the 'screw-ups' that happen;" i told him that, on the contrary, working in surgery impressed on me the almost mind-numbing boredom with which things go RIGHT; as a surgeon it can be a challenge to maintain one's vigilance against the possibility of problems because they are so unusual

    as i said once before, i have no fear; as it is, my degenerative scoliosis is slowly getting worse every day; the day of surgery is the day i finally begin to get better; i am thankful that help is available
    junosand
    59 yo recently retired otolaryngologist (ENT surgeon)
    schedule oct 2010 for T11 - sacrum fusion, all posterior approach with pedicle screws, steels rods, revision decompression left L3-4, right L4-5 & L5-S1, transforaminal lumbar interbody fusion L3-4 L4-5 L5-S1
    with titanium cages
    Dr Lenke, WashU/Barnes/Jewish St. Louis

  • #2
    Thanks so much for starting this thread and giving us your perspective from a surgeon's point of view. I really appreciate you sharing this. Good luck with your surgery - you are in excellent hands with Dr Lenke.
    Laurie
    Age 57
    Posterior fusion w/thoracoplasty T2-L3 Oct 1, 2010
    Thoracic curve corrected from 61* to 16*
    Lumbar curve, unknown measurement
    Disfiguring back hump GONE!!
    Dr Munish Gupta
    UC Davis Medical Center, Sacramento, CA

    Comment


    • #3
      Post of the month nomination

      Originally posted by junosand View Post
      I'm starting a new thread because i see this issue expressed in parts of many threads. I am a recently retired 59yo ENT surgeon. In my career I performed over 30,000 surgeries, major and minor. I have had 2 minor back surgeries already and am now scheduled for T11 - sacrum fusion with Dr Lenke in a month. This gives me perspective from the point of view of doctor and patient. I think the following points might reassure those who fear upcoming surgery:

      1. it is human nature to first think about the worst possible thing that could happen, so it is entirely normal to worry about complications; all the fears expressed on this forum are ones i heard from my patients on a daily basis
      2. dire complications are rare; with advances in anesthesia monitoring and nerve monitoring during the surgery, the risks of death or paralysis are miniscule
      3. almost all complications are treatable; they may cause some increased discomfort, length of hospitalization and inconvenience but, in the end, will not effect the outcome of the surgery nor your satisfaction with the result
      4. keep in mind, this isn't cancer; our biggest problem is pain and pain is always treatable
      5. there is dual responsibility: the surgeon does his part, then the patient has to do his/her part in the recovery/healing process; it is best faced with a positive attitude as one would face life's other challenges

      i remember, with our third child, my wife needed a C-section; a lawyer friend asked me, "weren't you worried, since you work at the hospital you know about all the 'screw-ups' that happen;" i told him that, on the contrary, working in surgery impressed on me the almost mind-numbing boredom with which things go RIGHT; as a surgeon it can be a challenge to maintain one's vigilance against the possibility of problems because they are so unusual

      as i said once before, i have no fear; as it is, my degenerative scoliosis is slowly getting worse every day; the day of surgery is the day i finally begin to get better; i am thankful that help is available
      Post of the month nomination.

      Well said. Pithy yet succinct. I think this will help folks awaiting surgery.

      You can never make too much sense.
      Sharon, mother of identical twin girls with scoliosis

      No island of sanity.

      Question: What do you call alternative medicine that works?
      Answer: Medicine


      "We are all African."

      Comment


      • #4
        welcome to the forum, junosand...
        i thank you for your particular insight from a doctor/patient point of view.....

        i know this "isnt cancer".....
        however, i beg to differ about the "treatable" problems connected to this kind of surgery...
        aside from pain that might continue, change, or (heaven forbid) worsen after surgery...there is also the possibility that things wont go right, and revision will be needed...some folks seem to have trouble standing upright afterwards, some report trouble with their gait after surgery...others develop new pain(s) elsewhere in the body...shoulder, leg, etc...
        all that may be "treatable, " or even addressed with future surgeries...i just think there is a lot more to be concerned about than pain...though my fear of needing fusion to pelvis involves fear of lack of flexibility...(i know, i know, one can bend from the waist)...and fear of different/new pain that wasn't there before surgery...

        it is a very personal decision...one moderated by where/how long fusion is needed...and the knowledge of what one can live with...

        that's just my opinion...

        jess

        Comment


        • #5
          Junosand,
          I second the nomination for "post of the month." You made excellent points. I try not to be negative, but I also tend to be a worrier. I think part of it with this surgery is the fear of the unknown as far as any complications during surgery and throughout the long recovery period.
          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


          • #6
            I also really appreciate your post, and actually everything you've posted so far.

            But, my BIG question on this surgery is: Is it really worth the risk as a "preventative measure"? That is, for those of us who don't have too much pain, but have large and/or definitely progressive curves, is it worth taking the plunge with this surgery? Most people say yes, but I'm still not convinced. Would love your take...

            Thanks,
            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


            • #7
              I was loving this post, Junosand, until I got to "pain is always treatable". This glosses over a good deal, I'm afraid, and so it makes me wonder about everything else you wrote.

              My husband, sister-in-law, and the husband of a close friend all struggle with chronic pain, and I think they would all take issue with just how "treatable" pain is. True, if you are willing to drug yourself into a stupor, have no energy and no concentration, it's probably possible to control most of the pain...but nothing stops pain altogether (other than death, of course) and to live with pain and still be fully functional is nearly impossible for many people. Most do as my husband does, take the bare minimum amount of narcotics to hold off the worst of the pain, while maintaining enough energy and mental sharpness to function reasonably well. And even then, there are days when the pain takes over and functioning falls to nearly nothing. I would have to say that at best, some pain is treatable within a very limited set of parameters. And always, one must make the choice between being able to think and have energy, or stopping the pain.

              And I haven't even gone down the road of the vicious circle with tolerance and narcotics. Don't even get me started. Sorry, but this is a sore subject, and one I live with daily. I just told my husband you said that pain is always treatable and he laughed, which is always a nice thing to see, even when it's ironic laughter.

              Excellent points about attitude, however. Attitude is everything, but so is being well prepared and fully informed as to what is likely to happen, AND what MIGHT happen.
              Stephanie, age 56
              Diagnosed age 8
              Milwaukee brace 9 years, no further treatment, symptom free and clueless until my 40s that curves could progress.
              Thoracolumbar curve 39 degrees at age 17
              Now somewhere around 58 degrees thoracic, 70 degrees thoracolumbar
              Surgeon Dr. Michael S. O'Brien, Baylor's Southwest Scoliosis Center, Dallas TX
              Bilateral laminectomies at L3 to L4, L4 to L5 and L5 to S1 on April 4, 2012
              Foramenotomies L3 through S1 in August 2014

              Comment


              • #8
                hi Steph
                i so completely agree with you!
                successful treatment of chronic pain is a difficult thing to accomplish...key word being "successful"! just as you said, to treat pain and still have the patient able to function and think with any clarity...is almost an art form, i think!
                unrelenting, intractable pain is to be respected, in the sense of acknowledging the terrible toll it takes on so many people every day...physical toll, emotional and psychological toll, and how that kind of pain leads to early retirement, ruins lives, isolates people...the list goes on and on...
                i do not believe that much pain is easily treated....serious, long term pain is not so easy to treat, in my opinion and personal experience...
                i think it is often minimized or glossed over by many doctors...but it needs to be treated with respect, talked about in detail, and discussed openly...not to scare patients...but to respect patients enough that you want them to know all the possibilities...to make a truly informed decision...

                scoliosis surgery is a tough decision to make, even when some of the top scoli surgeons are recommending it to you, and are in agreement as to when, how and who should be doing it!

                best regards
                jess

                Comment


                • #9
                  Couldn't agree more with the last two posts. I've never lived with unrelenting pain, but it can happen to anyone at some stage of their lives, and is what frightens me more than anything.
                  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


                  • #10
                    junosand reply re: pain

                    The criticism is certainly well deserved. My statement about pain was glib, at best. Along with my apologies, please accept the following elaborations:

                    a. pain is big subject; there is an entire boarded specialty of medicine devoted to its treatment; it's been highly educational to me every time i have had significant pain in my life; it's subjective, what anyone else feels is unknowable; it may vary with temperament and expectations but who knows?
                    b. much can depend on definitions; "treatable" does not = "curable" or "completely relieved."; we have medication that will stop or dull pain temporarily in virtually all cases, but, as pointed out, in some the side effects become a problem at still subtherapeutic dosages;
                    c. there's a big difference between acute (short term type, e.g. incisional pain after surgery) vs chronic pain - my personal discovery was that i could tolerate chronic pain surprisingly easily with two caveats: 1) as long as i don't have it all the time and 2) i'm able to sleep; without those two condition it could be a different story; i'm also lucky that dosages of pain pills give me sufficient relief without affecting my brain or bowels noticeably
                    d. a very frequent frustration i had as a physician was chronic headache patients; they come to ENT docs with the mistaken belief that their headaches are due to their sinuses; in fact, in my experience and shown in many studies, most all are misdiagnosed migraine; after proving it with a scan, i would explain this and refer them to a neurologist; there are a lot of different drugs for migraine and finding the best one for an individual can be a difficult process of trial and error; i discovered that too many give up when the first one or two drugs don't work well enough leaving them back at square one - treatment of pain can require a lot of perseverance sometimes
                    (nota bene: i am NOT suggesting that this is any poster's situation but anyone not satisfied with their level of pain relief should not be shy about expressing this to their physicians; if the latter are not responsive then they should consult others who are)

                    SO: to those dissatisfied with their pain control, please make sure you have exhausted all possibilities; understand that finding your individual solution for your individual pain can be a long and frustrating process and don't just accept being miserable if there is any stone left unturned
                    junosand
                    59 yo recently retired otolaryngologist (ENT surgeon)
                    schedule oct 2010 for T11 - sacrum fusion, all posterior approach with pedicle screws, steels rods, revision decompression left L3-4, right L4-5 & L5-S1, transforaminal lumbar interbody fusion L3-4 L4-5 L5-S1
                    with titanium cages
                    Dr Lenke, WashU/Barnes/Jewish St. Louis

                    Comment


                    • #11
                      reply to evelyn

                      i'm not sure i have anything to say that you haven't already head

                      your numbers suggest you have significant deforming curves even if there isn't pain yet so surgery still has the other benefits of improving your posture, balance, height, etc.

                      i don't know what the rate of progression is in your case, but if your doctors are reasonably certain that surgery is inevitable at some time in the future, the younger you are, the better odds of successful and faster healing

                      it depends of course on your social situation and responsibilities, how much you dread surgery, the expense and so many other things

                      all other things being equal, the majority of people decide that if something unpleasant can't be avoided, best just get it over with as soon as possible; others decide they will deal with it when forced to and not before

                      i hope i answered your question; if you have something more specific i would be glad to respond here or to an email
                      junosand
                      59 yo recently retired otolaryngologist (ENT surgeon)
                      schedule oct 2010 for T11 - sacrum fusion, all posterior approach with pedicle screws, steels rods, revision decompression left L3-4, right L4-5 & L5-S1, transforaminal lumbar interbody fusion L3-4 L4-5 L5-S1
                      with titanium cages
                      Dr Lenke, WashU/Barnes/Jewish St. Louis

                      Comment


                      • #12
                        junosand - Thanks for putting it in perspective. I do look at this logically at times, but most times I look at it from a worried Mom's side. When I work myself up I usually talk myself down with some of the things you have hit on. I have one who has already gone through surgery with excellent results- what a feeling when that was over! Now we are in the dreadful waiting period for my oldest's surgery in Nov'10. I'm back to terrified, but knowledgable - if that makes any sense. She has the same outlook as you - can't wait to be painfree and straight. So I cheer her on and worry in the background (I have nubs for finger nails these days).

                        Dee
                        Dee - Mother of two daughters, both with scoliosis KateScoliKid (16yo) 52* Lumbar curve
                        Fusion Surgery 2/9/10 T-11->L-3 @CHKD Norfolk VA
                        Jes (20yo) T 3 -> L 3 w/ Kyphosis

                        Comment


                        • #13
                          Originally posted by junosand View Post
                          i'm not sure i have anything to say that you haven't already head

                          your numbers suggest you have significant deforming curves even if there isn't pain yet so surgery still has the other benefits of improving your posture, balance, height, etc.

                          i don't know what the rate of progression is in your case, but if your doctors are reasonably certain that surgery is inevitable at some time in the future, the younger you are, the better odds of successful and faster healing

                          it depends of course on your social situation and responsibilities, how much you dread surgery, the expense and so many other things

                          all other things being equal, the majority of people decide that if something unpleasant can't be avoided, best just get it over with as soon as possible; others decide they will deal with it when forced to and not before

                          i hope i answered your question; if you have something more specific i would be glad to respond here or to an email
                          Juno,

                          I appreciate your response. You are right of course, but there are people who have gone into this preventatively and ended up in worse pain. So that makes me want to enjoy my "good years" on the off chance surgery gives me a worse outcome (in terms of pain). As soon as I decide to have surgery (or not), I change my mind. Anyway, thanks again for your input.

                          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


                          • #14
                            I HOPE you meant me

                            Originally posted by junosand View Post
                            d. a very frequent frustration i had as a physician was chronic headache patients; they come to ENT docs with the mistaken belief that their headaches are due to their sinuses; in fact, in my experience and shown in many studies, most all are misdiagnosed migraine; after proving it with a scan, i would explain this and refer them to a neurologist; there are a lot of different drugs for migraine and finding the best one for an individual can be a difficult process of trial and error; i discovered that too many give up when the first one or two drugs don't work well enough leaving them back at square one - treatment of pain can require a lot of perseverance sometimes
                            (nota bene: i am NOT suggesting that this is any poster's situation but anyone not satisfied with their level of pain relief should not be shy about expressing this to their physicians; if the latter are not responsive then they should consult others who are)

                            SO: to those dissatisfied with their pain control, please make sure you have exhausted all possibilities; understand that finding your individual solution for your individual pain can be a long and frustrating process and don't just accept being miserable if there is any stone left unturned
                            Your threads have been so interesting even when they spark controversy. Pain is an intriguing subject, and since this summer I have had more than usual. I'm riveted.

                            Migraine never occurred to me. I thought I was simply having postural issues that even "straight people" have, and I've read that I have some control in changing that with exercise. In the past, I've had clusters of migraines which have presented differently from what's going on now. I occasionally (a couple times a year) get the visual disturbance, a shimmering arc that builds on one side of the visual field or the other, starting peripherally and working to the center, then receding- followed by a mild headache on the opposing side. I always felt lucky that the headache was mild.

                            I'm sure that the headaches I have now are not sinus- I've had those before and know how they are different. This is new- chronic and feels like it's connected to the stiffness and pain in my left thoracic convex area. It also feels like someone is standing on my head all day, and I wish they would jump off!!!!

                            If you (or anyone of my scoli compadres here) has ANY input, I sure would appreciate it.

                            Amy
                            Amy
                            58 yrs old, diagnosed at 31, never braced
                            Measured T-64, L-65 in 2009
                            Measured T-57, L-56 in 2010, different doc
                            2 lumbar levels spondylolisthesis
                            Exercising to correct

                            Comment


                            • #15
                              Pain Schmain..Just Meditate!

                              Oh you've opened the can of worms here, juno!

                              When I was half crazed in the middle of the night with my original scoli surgery and my "push button" meds weren't cutting it, I pleaded with my night nurse for some relief. He assured me that I had had all that I was alotted (and I've been told I have a "high pain threshold") and queried if I had ever considered meditation as an option. If I hadn't been so debilitated I would have either guffawed hysterically or jumped up and strangled him to death on the spot!!

                              Meditate THAT!!!
                              Singing the Blues
                              Female 1951
                              A/P Surgery Oct 13th & 17th '05, from T7-L5, 46 degree curve reduced to 19 degrees. Rib hump almost gone, but I have flatback. Thought it was "normal" and I would improve over time. I developed kyphosis above the surgical area. Had surgery with Dr Menmuir in Reno, Nv on October 13, 2010.
                              Today I am still plagued with flatback, and I'm considering ALIF surgery.

                              Comment

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