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  • new to forum; grateful for info so far

    hi all, i am a 59yo (recently, due to the back pain) retired Otolaryngologist (Ear, Nose & Throat Surgeon); i've had 2 microdiscectomies in the past 3 yrs which helped considerably, though temporarily; i have degenerative scoliosis with a 36 degree cobb angle and am scheduled for T11-sacrum fusion on Oct. 6th with Dr. Lenke at BJC in St. Louis; i have gotten a lot of help trolling this forum, getting an idea of the range of recoveries described; in fact, this is the best patient forum i have ever seen; those in my specialty and others are usually full of misinformation, histrionics and dominated by a few who perceive that they were poorly treated; i currently have pain everyday that makes it difficult to stand up straight for more than a few minutes and can't walk very far; i have always led a very active life. Wrt the fear expressed by some as their date of surgery approaches, my thought is this: i can't wait for this will be the day on which i will finally begin to get better, however long that may take.

    One specific question: during recovery, how well did your brains generally "work," i.e. how soon were you able to concentrate enough to watch TV, to read, to do a crossword puzzle, etc?
    Last edited by junosand; 09-03-2010, 04:41 PM. Reason: additional question
    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
    Hey welcome.

    I like your attitude about surgery.

    W.R.T. the quality of this forum, I think that stems from having a moderator with specific expertise who isn't just a patient. This results in a very tight check on unfounded claims from the alternative treatment purveyors. At least that's my hypothesis.

    Good luck with your impending surgery.
    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


    • #3
      Welcome, junosand! I love your attitude. A lot of us had a mixture of true excitement mixed with anxious trepidation... (of all the "unknowns"), but you are absolutely right, it's a very exciting time! As far as when your brain starts thinking clearly enough to do things, that varies. Some people can do things like text and email that same day (but not too many) but I would say most aren't up to doing a whole lot for at least a few days or a week. I am an avid reader and I didn't read anything till after I got home from the hospital-- and I was there for 11 days. I remember thinking it just took a lot of strength just to lie there in bed and do the little things required, like sitting up on day 2, and starting to walk and do PT. My suggestion is to look forward (and be prepared a little bit) for doing those things fairly soon and then see how it goes. I'm pretty sure you can watch TV pretty soon, and then probably do crosswords within a week or two. I know I reread the Harry Potter series and tons of other books within the first couple of months after my surgery. Best wishes!

      *Adding on--I just re-read this and noticed how repetitive I was with words and also realized you might think I'm kind of strange to have been 56 and reading Harry Potter, but I'm a children's librarian... and the "next" Harry Potter was coming out and I was doing a refresher for myself... If you do much reading, pick easy ones at first that you don't have to concentrate a lot on.
      Last edited by Susie*Bee; 09-04-2010, 04:04 PM. Reason: to add on
      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


      • #4
        Hi Juno,

        When I first scheduled my surgery I was 100% terrified. Then as the months went by, I would rate my % excited vs. % scared. From what I recall, on the morning of surgery, I think I was 85/15.

        I had no problems watching TV, although at first I'd fall asleep on it quite a bit. I do remember being with it enough to schedule online bills within the first few weeks. I didn't read anything other than magazines until I was off the narcotics.

        Good luck to you!

        Editing to add, I just went back and looked at a 2-week post op post that I wrote, here is a little excerpt for you; mental concentration has a direct connection to the timeframe of the most recent medication:

        "....I was helping 9 year old daughter with multiplication/division facts last week, writing her flash cards. It was 45 minutes after I had taken meds, I decided I needed to stop because I FORGOT my facts. BWHAAHAAA"
        Last edited by debbei; 09-03-2010, 07:07 PM.
        __________________________________________
        Debbe - 50 yrs old

        Milwalkee Brace 1976 - 79
        Told by Dr. my curve would never progress

        Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
        Pre-Surgury Thorasic: 66 degrees
        Pre-Surgery Lumbar: 66 degrees

        Post-Surgery Thorasic: 34 degrees
        Post-Surgery Lumbar: 22 degrees

        Comment


        • #5
          Welcome to the forum!

          My brain started to "work" on day two for watching tv. As soon as I was sitting up in a chair I was doing puzzle books, but not reading. I couldn't handle holding a book for about two weeks. I would think that if I had a Kindle then I could possibly read as that is much lighter. Now (after 4 weeks) I'm ready to break out my cross stitching to make Christmas gifts.
          Tiffany K
          I'm not short, I'm fun size!

          29 years old
          4'11", never braced
          Pre-surgery, 52° T6 to T12, 35° T12 to L4
          T1-L2, Posterior 8/5/2010, gained 1"

          http://www.facebook.com/album.php?ai...9&l=03212f3e17

          Comment


          • #6
            Like others, I was watching tv on day two. I didn't read anything until I came home, but I think it had more to do with my utter relief, excitement and joy, that this "thing" was finally over, making it hard to concentrate! I was back paying bills online, reading and doing puzzles in week 3.

            All the very best with your surgery and recovery.
            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


            • #7
              Welcome Juno

              How well did my brain work on opoids after surgery? I would say that the main thing that happens is lack of attention span, and short term memory. Extreme pain is overwhelming, and the meds mask that pain, just so you can cope. The main problems in recovery are trying to get comfortable, sleeping and sitting can be very difficult. That’s why I have the "foam" comment in my signature. A 2-4 inch thick foam topper helps distribute pressure in bed, and basically doubles your valuable sleep time. All recovery parameters differ from patient to patient, and procedure. I had a extensive A/P.

              I ended up quitting cold turkey at 6 weeks due to this lack of concentration, and constipation. Once off meds, my appetite came back, and started healing much faster. Many patients at the 4-6 week mark will post that they are tiring of meds and are thinking of cutting back or quitting.

              Its great to have the NSF forum complimented by a surgeon. We have a group of us who strive for the truth, usually backed by evidence. We have a group of people who know what it takes from experience, which is so valuable. Many of us were surgical candidates for decades so we have plenty of thoughts on the subject. We have professionals here that have had surgeries over 50 years ago. Most of all, we have an invaluable, caring moderator who does a fantastic job....

              After all the "dark mysterious years" of the past, wondering exactly when and how we were going to conquer our deformities, we are very fortunate that medical technology has advanced to the point that it has over the last 50 years. The internet and this forum have connected us into one big scoliosis family.

              Are you having a posterior only?
              Ed
              49 yr old male, now 63, the new 64...
              Pre surgery curves T70,L70
              ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
              Dr Brett Menmuir St Marys Hospital Reno,Nevada

              Bending and twisting pics after full fusion
              http://www.scoliosis.org/forum/showt...on.&highlight=

              My x-rays
              http://www.scoliosis.org/forum/attac...2&d=1228779214

              http://www.scoliosis.org/forum/attac...3&d=1228779258

              Comment


              • #8
                Hello Juno,

                Welcome to the forum and the relief of posting after reading only....

                Sometimes I think it is the better scenario to be in the pain position of scheduling surgery, without reservation. Do you ever anticipate returning to work if your pain levels subside after surgery?

                I am in the gray zone...working is becoming increasingly difficult, leisure time is no problem, and if I ever do feel that I must retire from pain, I will sign up instantly for surgery! I hope that my attitude is as positive as yours, but I think it will be...

                Again, welcome!
                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


                • #9
                  Juno,
                  Welcome to the forum. You do have an excellent attitude. I don't wish pain upon myself, but having little pain, makes it tough to actually look forward to the surgery and long recovery. Dr. Lenke will be my surgeon, too, so I'll look forward to your posts.
                  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


                  • #10
                    Welcome to the forum junosand! What a nice compliment regarding this forum, especially from a surgeon.

                    I'm sorry to hear you are in such pain, however, I believe that Linda Racine (the moderator) has said in the past that people who have surgery because they are in such pain typically are the happiest with their outcomes. (Hope I haven't misquoted her).

                    I'm sure you'll get lots of support in the days ahead!

                    Comment


                    • #11
                      response to replies

                      thanks all for your thoughtful replies

                      ed, yes, mine is to be a posterior only with stainless steel rods, pedicle screws, revision decompression of L3-4 and L5-S1 and transforaminal lumbar interbody fusions with titanium cages at L3-4, L4-5 and L5-S1

                      maybe much credit goes to the moderator for the forum quality; much also to the members for supplying as much detail about their medical history and surgeries as they know; for info to be useful, as we all know, it has to come from patients with roughly comparable problems (e.g. experiences of those of my middle age are far more meaningful than those of a teenager)

                      amy, it's hard to imagine being able to work again as surgery is physically demanding; up to a few yrs ago, i would stand in the operating room for 14 hrs straight and it never ever even occurred to me that i would ever feel physical discomfort in doing so; i would have to get a fantastic result from my surgery which i doubt is very likely; from my experience, i know to be realistic: the goal is improvement, not perfection; Dr Lenke can't make me young again

                      i will try to post how things turn out; if possible, i plan to do a brief diary so i can be most accurate; with all the drugs, etc., it'll be easy to get confused

                      and, btw, i read the first 2 1/2 Harry Potter books because my kids were reading them and they were such a rage; IMHO i don't have as high an opinion of the series as most seem to but i didn't think they were trash; i'm also an avid reader and, since i'm to have a long forced period of inactivity, it occurred to me to try to finally read "in search of lost time" by marcel proust - 4000 pages! (no, that 4 thousand is not a typo) if my concentration abilities allow
                      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
                        Go, juno, go! You'll have plenty of time to read those 4,000 pages when you're feeling up to it. Sounds like a good thing to look forward to. As for the rest of what you just said, yes, it's always helpful to be able to compare apples to apples (age of adults, length of fusions, etc.) but even so we all differ so much with our recoveries. Be hopeful for a quicker one but prepared for whatever way yours goes... You just can never tell. This part is pretty certain: your spine should end up stabilized and you will be straighter and a at least a little taller. Yours isn't a real long fusion, so that should be easier (but still no piece of cake. I LOVE that you call 59 (my age) middle age. I am proud of my age and when I tell the kids at school sometimes they say really funny things. Both (as in ancient) and (can't be, Mrs. B-- you look way younger...)

                        It is really good to keep a diary. My husband wrote down everything (well, vital things) in the hospital and also took pictures. I kept a scrapbook of my surgery and recovery experience. It's interesting to look back on and also I have my op report and other info in it so my kids/grandkids can find it if they ever need that info, in a very visible and easy to find spot. (Like, what was wrong with grandma, and what did they do to her???)

                        I didn't realize it at the time and it would cost me money now, of course, but you probably know you can request copies of your charts (nurses, PT, whatever) and other information, free of charge (I think) at the time you're in the hospital, along with your op report and x-rays, and all that kind of stuff. This is like the dummy puppet talking to the college professor or something, but just thought I'd mention it. I wish I had known at the time. I did get my digital x-rays later on, and my op report, but that was all. I'm pretty sure you could request a copy of all the drugs/dosages they give you in the chart. I know at my hospital they were just changing over to everything being computerized rather than having written charts, so I don't know how that works. Not sure where you'll be. When you go for your pre-op, be sure to check about that if you are interested. Best wishes!
                        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


                        • #13
                          T11-sacrum sounds pretty darn long to me!! i need T11-pelvis, with disc fixing thru side...2 different "pokes" (or modified "incisions") as mine is supposed to be minimally invasive...so first the side, then the back...the original T4-pelvis has been compromised to T11-pelvis, but it is the "pelvis" part that throws me!

                          junosand...i am assuming Dr Lenke is not doing minimally invasive approach for you?
                          i waited for it to be available for lumbar curves...now i am still stuck on the "decide" button...
                          the surgeons who use it swear it is do-able for ALL curves, yet not all opt for it...well, i guess that falls under "to each his own"...

                          jess
                          Last edited by jrnyc; 09-07-2010, 05:47 PM.

                          Comment


                          • #14
                            response

                            no, Dr Lenke will not be doing a "minimally invasive" approach

                            in the type of surgery i did, it could be a complex decision what type of approach to use with many pros and cons to consider

                            i dont think i know or could possibly educate myself enough to second-guess
                            Dr Lenke on choice of approach, type of hardware to be used, etc; these are judgments made by those who do this type of surgery every day

                            it's too complex a subject for me to well explain what i mean or even give a good example but i will say this in general: you should pick a surgeon, not a procedure
                            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


                            • #15
                              Originally posted by junosand View Post
                              ...but i will say this in general: You should pick a surgeon, not a procedure
                              (LOUD CLAPPING!!!) Thanks for stating that...I agree!
                              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

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