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  • [QUOTE=Confusedmom;139051]Hi Suzanne,

    I think others have posted on here before about not looking as straight after the swelling goes down. So I think it's normal. I can see on myself a little more definition below my ribs that isn't perfectly symmetrical, which I couldn't see at first. On the other hand, I have also seen people post that some cosmetic issues take several months to resolve. Example: sometimes a higher shoulder will settle down, or so I've read.

    I noticed this to be true w Jacob - his shoulder was much higher up after surgery and has already settled down a good amount in these few months.
    You seem to be doing so well! Very happy for you - just don't overdo & keep focusing in on each day being better than the day before.
    Mom of 14yo son diagnosed Oct 2011
    Surgery 1/3/12 w Dr. Geof Cronen,
    Tampa General Hospital T3 to L1
    Jacob's pre surg curves: T58 & L31 12/28/11
    photos & xrays in "First-Time Surgery" thread "Before & After"

    Comment


    • Suzanne,

      Now that my back is less numb and I am reducing pain killers, I am also starting to feel more movement in my back. It feels like muscles. Either trying to heal or learn how to cope with hardware. I wonder when they all "knit" back together--how many weeks/months does that take?

      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


      • I was told it could take up to a year for everything to sort itself out. At 10 months post op, I believe it.
        50 years old!!!!!
        Wore Milwaulkee Brace 1976-77
        Original curve 36 degrees ( measured in the 70s)
        Advanced to 61 degrees 01/2011
        Surgery 07/11/2011
        Fused T1-L2 (curve now in the 20s!)

        Comment


        • Originally posted by twistedRN View Post
          Hi All,
          Mary, Dr Bridwell (and Lenke probably others also) like to use central lines (basically large bore IV's with 2-3 ports placed into a large vein in your upper chest). It allows for rapid infusion of meds, blood etc into a big vein so that smaller veins in your periphery aren't irritated by all the stuff flowing into you. Mine was taken out the day I left the hospital (day 6) and had been put in the day before I went in for surgery.
          I guess you are all right about the weight loss and uneven distribution of weight/fat on my back. I am sure it will be at least a year before things settle in. Either way, it is definitely a cosmetic improvement over the way my back looked before!
          Any thoughts on that "shifting" feeling I sense when I move? Anyone else ever feel that?
          Doreen, I sent a msg to Betsy last week and haven't heard back either...I will try emailing her directly again now. I know she was taking it slowly to avoid nausea and pain.
          Hi Twisted (or untwisted as you are now)

          I've just read this whole thread and am so pleased to hear that you are improving day on day. I'm currently awaiting full fusion and possible pelvis fixation so its really good to hear someones journey pre op and into recovery.

          How did your app go on 21st? hope the surgeon answered your questions regarding feeling movement from the hardware in your back. That's sound a little scary so I hope you can confirm that the feeling goes eventually.

          I've seen some pictures on the forum of people with a rash following surgery and I have psoriosis (a skin condition) so if possible I am going to ask my surgeon if there is anything he can do in an attempt to avoid me getting this as I already think the trauma of surgery to my body will make my psoriosis flare up.

          Well done on getting through your surgery and I look forward to hearing more about your improvements into good health

          Jenna
          27 yr old Female.
          Scoliosis since 12yrs, fusion to lower curve in 1998, costioplast 2001 and further corrective surgery 26 July 2012.
          Now the proud owner of a very straight spine. T1- L5 fusion.
          Mr Dunsmuir, Orthopaedic Surgeon, LGI Leeds.

          Comment


          • 8 week check

            Hi Everyone!
            Sorry I haven't been on the forum in awhile....but I wanted to catch you up to date on my 8 wk checkup with Dr Bridwell last week. Basically it all went very well : He watched me walk with and without walker. He checked out my x-rays and my incision and said all looks great. We discussed a few things : official weight is now still 11 lbs under preOp weight, height is 1" taller (now 5'9.5"!)am cleared to drive whenever I feel like I am able, can dip in the pool but no swimming, no exercise other than walking, nothing to exercise arms or legs either, can now put sunscreen on the incision, numbness that I have may or may not resolve but end date of that would be about 18 mo postOp. I am numb in parts of my back, left shoulder and the lower half of my buttocks. I have been having some numbness/tingling in my left fingers which the Fellow told me was related to possible arthritis in my neck or the way I am holding my left arm..... I did not have it prior to surgery. I will see what happens in the next few months with that. I have a feeling it is related to the swelling and numbness I have in my left shoulder, so am not freaking out.....yet.

            No official word about the "shifting" I felt, but I have to say that feeling seems to have resolved. I haven't felt it in weeks. Maybe it was just a phase of the healing process, the "snap, crackle pop" of healing?

            They didn't take any official measurements of my curves (guess they don't do that??), but he guesstimated that I went from 59 lumbar and 55 thoracic to somewhere around 25 degrees with both. They were able to correct about half the rotation - they purposely do not do more than that in adult patients because it can really tweak the spinal cord and do longterm damage. I guess with kids they will try to correct all rotation.

            I also asked about "breaking 90 degrees" between my torso and thighs. He said not yet because it flexes L4/5.....arrggh. I am quite the inpatient patient, I guess.

            Anyway, I am basically off of all narcotics now, only take half a Norco as needed, which is rare. I take about 3 ES Tylenol a day. I would say the sensations I have in my back are more of a pulling pain in my pelvis (related to the screws into my pelvis?) and a burning in between my shoulder blades. My most comfie position is laying flat on my back or on my side, worst position is probably sitting, although I can sit for about an hour at a time (preferably with my memory foam pillow behind me)!

            Hope everyone is doing well!

            Comment


            • Glad to hear that you are doing so well Yes, recovery can be test of patience
              Melissa

              Fused from C2 - sacrum 7/2011

              April 21, 2020- another broken rod surgery

              Comment


              • Hey Suzanne,

                Congrats on reaching the milestone of being able to drive again. It means that you are one step closer to returning to a normal routine. Do you return to st. Louis at 4 mos. post-op? You sound like me because bernie always reminded me that the months following surgery always tested the patience of the patient! It sounds like you are doing great. So take care and just keep on walking....

                Donna
                Female - 49 yrs old at surgery
                Surgery 5/5/11 - Dr. Bridwell, St. Louis
                Fused T3-L3
                60 degree thoracic curve corrected to 30 degrees
                Tennis player & returning to the courts!
                http://s1050.photobucket.com/profile/walkingmom1/index

                Comment


                • Glad to hear you are doing so well at only 8 weeks. The worst is over now. It gets easier as time goes by.
                  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


                  • Hi TwistedRN

                    Glad your app went well and your managing your pain. Sounds like they achieved really good results for you, you must be so pleased.

                    Didn't think you would be ok to drive at 8wks post op so thats good news and that the snap/crackle/pop sensation stops after a while.

                    Please keep me updated with the pulling pain you think your getting from your pelvis fixation, as this might help me understand what I'm in for :-)

                    Keep going with your recovery and keep that walking up :-)

                    Jenna
                    27 yr old Female.
                    Scoliosis since 12yrs, fusion to lower curve in 1998, costioplast 2001 and further corrective surgery 26 July 2012.
                    Now the proud owner of a very straight spine. T1- L5 fusion.
                    Mr Dunsmuir, Orthopaedic Surgeon, LGI Leeds.

                    Comment


                    • Originally posted by walkingmom View Post
                      Hey Suzanne,

                      Congrats on reaching the milestone of being able to drive again. It means that you are one step closer to returning to a normal routine. Do you return to st. Louis at 4 mos. post-op? You sound like me because bernie always reminded me that the months following surgery always tested the patience of the patient! It sounds like you are doing great. So take care and just keep on walking....

                      Donna
                      Hi Donna (and everyone!),
                      Thanks for the kind words of encouragement! Yep, Dr B said he would normally see me at 4 mo but said that if I felt ok about it all, he would be ok with me just coming back at 6 months postOp. Initially he said maybe he would have me send x-rays from here, but then he said there was no need for that as long as things were going well. So far so good!

                      Comment


                      • tying shoes

                        OK, quick question out there for all of you who are fused to the sacrum and/or have pelvic fixation....do you ever get to the point where you can tie your own shoes? After a particularly frustrating episode today trying to work with elastic shoelaces and a shoe horn in my athletic shoes, I about gave up and yanked out the shoelaces, put the regular ones back in and (with HUGE difficulty) attempted to tie my own shoes with a straight back. Please tell me that eventually we can squat or lift our feet up to a chair we are sitting on or something...?? Thanks for any advice and/or encouragement!

                        Comment


                        • Originally posted by twistedRN View Post
                          OK, quick question out there for all of you who are fused to the sacrum and/or have pelvic fixation....do you ever get to the point where you can tie your own shoes? After a particularly frustrating episode today trying to work with elastic shoelaces and a shoe horn in my athletic shoes, I about gave up and yanked out the shoelaces, put the regular ones back in and (with HUGE difficulty) attempted to tie my own shoes with a straight back. Please tell me that eventually we can squat or lift our feet up to a chair we are sitting on or something...?? Thanks for any advice and/or encouragement!
                          I wish I had encouraging news for you, but I don't. I still can't tie my shoes yet, and I'm almost 5 months out now (surgery January 23rd). What I did in the early days was get either my husband or my son to tie my shoes for me on the days that I really needed to wear shoes to go outdoors. Now I can handle my own shoes, but I had to start wearing a completely different kind of shoe. Right now I have two pairs of shoes that I can slip my foot into and out of, and only have to fiddle with the backs of one of those pairs of shoes which sometimes need straightening after I put my foot in.

                          One of the pairs that I wear, only during much colder weather when I have on a pair of over-the-calf Nike Dri-Fit socks with a small pair of footie socks over top the longer socks, is the one at the following link : http://www.footsmart.com/P-Orthofeet...oes-71374.aspx. Once I found the right spot to have the loop set to, I leave the loop closed and slide my foot in or slide it out. But those shoes don't work for me now that it's warmer, because they are too deep when I only have one pair of socks on, and I can't adjust them to where they will fit fairly snugly but comfortably.

                          The other pair that I wear is similar to a pair of shoes that I bought for work before my surgery, but has a similar velcro closure. The model I have is the 927, but the current version is the 928: http://www.newbalance.com/New-Balanc...=9&cgid=102000. Once I found just the right spot to place the velcro loops, I leave them there. I just put my foot and and take my foot out. It's not as easy to get into these shoes as it is the Orthofeet shoes, but one very important factor is that the tongue of the shoe stays where it's supposed to, as opposed to getting pushed into the shoe, which is what was happening to me when I tried elastic laces in my regular shoes.

                          This velcro model is OK, but not nearly as comfortable as my regular tie-up shoe: http://www.newbalance.com/New-Balanc...19&cgid=101000. However, I have been using the velcro shoes on some longer walks recently -- like 2 miles at Taughannock Fall State Park just north of Ithaca this past Sunday.

                          One thing you might notice if you look at those shoes is that they are all men's shoes. I can only wear men's shoes because my feet are too wide for most women's shoes. My shoe size is 8 EEEE in men's shoes. I also have to wear motion control shoes, because my feet are too unstable without them, even with the inclusion of my prescription orthotics.

                          I don't know how long it will be before I will be able to tie my own shoes, but I certainly hope it happens at some point, because these velcro models just aren't as comfortable over the long term.

                          I am not able to cross either leg over a knee, but even if I could, that wouldn't help, because I really can't tie a shoe at an angle. Normally I would have tied my shoes while sitting on my bed, leaning over to reach my feet on the floor, but I don't know if that will ever be possible again. I'm guessing that at some point it might perhaps be possible to prop my foot up on something, like a footstool maybe, and then lean over far enough to tie them, but if that is ever possible, I don't know how long it will be. I specifically asked about tying shoes at my last follow-up visit, and was told that I should not yet be trying to lean over to tie my shoes.

                          Another one I also have difficulty with is my hair. I have longish hair, which at this time of year, I used to wear up in a ponytail that was clipped just below the top of my head. But the only way I could clip it up like that was to lean over far enough that I could actually look backwards through my knees. I would let gravity bring all my hair down towards the floor and comb it, then gather it when it was in that position. My part would no longer be visible once my hair was clipped up. But I can't do that anymore. The best I can manage now is a clip down near my neck, and I can't gather my hair together in the same way, so my part is still there. It's a completely different look for me that I really don't like, but there's nothing I can do about it until I can once again lean over and let my hair hang down to the floor -- if in fact that EVER becomes possible again. If it won't, then I may have to plan a completely different look for my hair, because I hate the way it looks right now when it's clipped back as opposed to clipped up.

                          -- Mary
                          -- Mary D. Taffet
                          Lumbar curve 27 degrees in 07/2007 > 34 degrees in 03/2009 > 38 degrees in 02/2011 > 42 degrees in 09/2011
                          Laminectomy L2-L5, Fusion T9-S1 (sacrum) with pelvic fixation 01/23/2012 w/ Dr. Richard Tallarico, Upstate Orthopedics, Syracuse, NY

                          Comment


                          • Suzanne,
                            Eventually, you will be able to tie your own shoes. I didn't even attempt to do it for a long time (wish I could remember how many months) I wore slip on tennis shoes unless my husband was around to tie my regular tennis shoes. When I started tying them on my own, I propped on foot up on something and lowered myself by bending the knee of the leg I was standing on. Now, I can sit and tie if I have something to prop my leg up on. I can also sit and put on foot over the other knee. My bows were usually lopsided at first. Everything (eventually and gradually) gets easier. As you know, the recovery takes lots of patience. Today, I thought about how far I've come since last summer when I was only 5 months post-op . . . I played 18 holes of golf, watered the flowers, trimmed bushes, pulled weeds, and a few other things that I couldn't have done last summer. Nice to hear from you.
                            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


                            • Hi Suzanne,

                              I COULD do this, but I don't think I'm SUPPOSED TO yet: lie flat on my back on a bed or couch, bend at the knees and prop one foot on one knee--then tie shoes. I do use that method to put on body lotion on my lower legs after shaving, but I don't have to stretch like I would to tie shoes. When I get to 1-year post op I will do this to tie shoes. In the meantime I pretty much use the long-handled shoe horn combined with the grabber to hold up the tongue. I am late everywhere I go!!! Lol.

                              Best,
                              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


                              • The shoe tying subject. Ahh.....I never thought I would ever be able to get down to my feet again. Very scary.

                                I wore slip on shoes for a long time....but eventually started the bending process at around 9 months. I didn’t want to take any chances, you only get one chance at this. Bending and pulling down can trigger soft tissue injury which is extremely painful. I had this happen at 23 months post, so be careful. (Bending down and holding position to clip toenails) Stretching takes patience.....

                                A long shoe horn is good to have. They have them about 18 inches long. Pre-tie your shoes or sneakers and use the shoe horn.

                                After 9 months, I started with a stool around 30 inches tall. Set your foot up there and lean into it slowly to tie shoes.

                                Now, I just squat to tie shoes. Squat with one knee on floor and hang arms down. I don’t need a stool anymore. It took over 12 months for me to get to that point.

                                Ski boots are a challenge.....(smiley face) Getting fins on while scuba diving is also a little challenge......but possible. All involve the “extended” reach.

                                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

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