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Thread: The tortoise and the hare...

  1. #1
    Join Date
    Oct 2007
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    Indiana
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    Wink The tortoise and the hare...

    Hi friends! I was just thinking about how this recovery business is kind of like the tortoise and the hare somewhat-- although as long as you finish the race, everyone can be winners. I am one of the tortoises, though.

    Yesterday I had my 21 month check-up with my scoli doc. I go every six months now. After all was said and done, Dr. H was very pleased with everything and of course, that made me feel good. All those little worries that nag at you are put to rest... and you feel like you can tackle the world again. I've noticed lately that there are many of you who recover so quickly it practically makes my head spin. I am so excited for you! It's not that way with everyone though. I am still making progress but have not "arrived" at being "recovered" yet. I think I will be one of those that takes the full three years someone once mentioned (as in 1-3 years), to recover. Or longer... But I am still really excited about how far I've come and how well I am doing. That is why I'm sharing.

    Dr. H said I am walking really well (PT REALLY helped with my stride and posture!) and that all in all I was looking good. (Right, thankfully he didn't mention the extra weight I'm still working on getting rid of!) The neck aches are apparently age related, mostly due to arthritis. The lower lumbars we are watching, but they are ok still. We were playing the odds with whether or not to include L5-sacrum, and didn't. Time will tell. The pains I get sometimes in my mid back are probably hardware. But the fusion and all that looks good. I do not have serious aches and pains-- just mostly fatigue and aching after a long day at work, and, as I said, tenderness in my neck/upper back and in my lower lumbars. I hardly ever take anything for the aching-- and never did prior to my surgery either. The aching I had then was different-- more like gravity was pulling my back down on itself as the day progressed. I don't have that anymore! Occasionally, if I have a bad day (or two) or overdo things, I'll take a darvocet and that takes the edge off and helps.

    Whoo hoo! He also lifted most of the restrictions that I've had, saying to use common sense and to use proper body mechanics (squatting, etc.) mostly. I think he probably assumes that by 21 months I am now healed enough that occasional stress won't cause a problem. And that my DDD and arthritis will keep me from doing anything too foolish! I am gearing up to hold those two first grandbabies (Oh yeah, "bubs" as some of our Aussie (or British???) friends say) of mine that are due to arrive in May! Did I tell you both are little boys? And then I'll get through this wedding in June. Lots to do this spring and early summer!

    Mostly I am posting some of this because there will be others who don't progress with the speed some of you have, and that doesn't mean that we won't continue to get better too. It just takes longer for some of us. Slow and steady wins the race... or at least finishes it!

    You are all so dear-- I know I don't post nearly as much as I used to-- I run out of steam and have other priorities to deal with that "call my name" much louder these days! But I visit the forum every day and read as much as I can and tuck away the info in my head. I often say "I'll get back to that thread and add my little bit" but often it doesn't happen. Oh well! Or I'll see that an old friend posted after being gone for quite awhile and I mean to send a PM to say how great it was to hear from them... but then it doesn't always happen either. Double oh well and then some.

    You're a great bunch!!! Thanks for your friendship! Hugs, Susie

    PS-- I got digital copies of some of my x-rays yesterday, so hopefully sometime soon I'll attach some that are much better to my signature. But don't hold your breath! That's hard for me.
    67 and plugging along...
    2007 52 w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal 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
    NEW 10/2018 x-rays show 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

  2. #2
    Join Date
    Sep 2007
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    338
    So great to hear about your progress and lifted restrictions, Susie. You are an inspiration to all of us. It's such a great reminder to all of us that everyone is different and we all recover at our own speed. And you have so much coming up in the next year to look forward to and enjoy. I'm glad you can do it with those little nagging doubts put to rest by your surgeon.

    I have been feeling really worried lately about Sidney's drooping shoulder and torso list to the left which is still there three months post-op, even though the surgeon says it takes longer than 3 months for those to resolve. Your post helps put things in perspective. Thanks.

    Mary Ellen

  3. #3
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    Thanks, Mary Ellen. And if it helps any more-- it was at 6 months post op that I began 8 weeks of PT, 3 times a week, during which time my PT guy helped me soooooo much with posture and shoulder height, etc. (I was kind of shuffling along, a bit hunched over and one shoulder/hip higher than the other-- those needed to be relearned, as that is what felt "right" to me, because of where my muscles and brain were used to having them...) And that is when we worked on increasing my stride and stuff like that. I bet Sidney just needs to work at it some, along with allowing more time to go by.
    67 and plugging along...
    2007 52 w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal 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
    NEW 10/2018 x-rays show 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

  4. #4
    Join Date
    May 2008
    Location
    Central NJ
    Posts
    1,956
    Good for you Susie! I am so happy to hear about your good doctor's report. Double good for you on restrictions being lifted! Will you continue to go for a check every 6 months?

    I think we probably all get new little aches and pains. THe trick (for me) is to try not to worry that something is wrong. I'm getting better at that as time goes on.

    Congratulations again!
    __________________________________________
    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

  5. #5
    Join Date
    Nov 2008
    Location
    Greenfield, WI
    Posts
    414
    Great post Susie...as I read I almost felt like it was meant for me! lol Ive been doing alot of complaninlg as of late, which Im sure is deemed as normal, but I dont think alot of us say it ut loud" all the time. (post it) LOL In my spare time, which there is alot of right now, Ive been thinking to myself that Im too hard on myself and I need to stop feeling sorry for myself and start thinking positivly. Hopefuly I can keep this new found attitude up! Ive decided that Monday, I will start a new routine. A friend of mine is going to take me to the mall 3 times a week so I can walk around, while my aunt watches my youngest at home. The only trouble w/that is that I love shopping so she will have to keep me in line & remind me that we are here to WALK not SHOP! lol I also decided to start eating a little more healthy. Ive been lacking in that department for awhile! (I talk like Im 500 lbs huh?-lol)
    I had a great day today with very moderate pain that was very tolerable. Im hoping to shower, do my hair as best as I can, throw some makeup on & find something comfortable but not to "messy" and head out for a little valentines day dinner w/Paul! Fingers crossed this actually happens! Have a great weekend everyone & Susie, thanks for the post, it brought a smile to my (pasty white from lack of sun) face!
    Lynn -30.... something
    DxD @ 8 yrs old: 10* curve-no brace-no nothin'!
    At age 26: Thorasic 48*/Lumbar 50*
    At age 34: Thorasic 58*/Lumbar 60*
    Posterior T5-L4 Fusion Jan 14th, 2009 w/Dr Tribus
    UW Madison, WI Hospital
    **AFTER: less than 10* Thorasic/15* Lumbar**

  6. #6
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    Oct 2007
    Location
    Indiana
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    Debbe-- I'm scheduled to go again in 6 months, so I seem to be on a 6 month cycle. I am glad he's keeping tabs on me... I don't really worry in the true sense, because I know regardless, things will work out... It's just this tiny nagging at the back of my head that there's a possibility my vertebrae are developing a problem either above or below the fusion, when those areas start bothering me... so it's more like an awareness that something could be "up" with them. It's a relief to know it's ok so far. Know what I mean?

    LynnMarie-- Yes, be patient with yourself. We all move forward from this surgery at different speeds. Nobody is the same; we have different lengths of fusion, procedures, conditions, and our bodies don't heal at the same pace anyway... I know I was a little disheartened from time to time with how long it was taking, but we took a lot of pictures because I had planned to make a scoli scrapbook and it really helped me to look back at pictures from the hospital and early stages of recovery when I felt down. Then I could actually SEE the progress I was making, even if it wasn't as fast as I had hoped. Journaling would do the same, just not visual. Think back just two weeks ago and you'll remember how you could hardly do anything compared to what you are able to do now. One thing this surgery does is teach patience, whether we want it or not! Good luck with your new plan. And it's important to eat healthy foods for your body to recover well, so eating wisely is a super idea. Good for you for tackling that too! I hope you also have a wonderful dinner out with Paul!

    Happy Valentine's Day to all my scoli sisses and bros! You are soooo cool!
    67 and plugging along...
    2007 52 w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal 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
    NEW 10/2018 x-rays show 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

  7. #7
    Join Date
    Jan 2006
    Location
    near Philadelphia
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    1,260
    Congratulations on a good check-up, Susie -- and from one tortoise to another, keep up the good work!

    I suspect that like you, I'm also on the three-year recovery plan. The dust has definitely not settled for me yet, physically or emotionally. But I'm really grateful (and relieved) that I experienced pretty dramatic improvement at the year-and-a-half mark. What used to hurt is now just stiff. Funny how stiff doesn't feel like pain anymore. It's all relative, eh?

    Anyway, best to you and good luck with the new grandchildren!
    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

  8. #8
    Join Date
    Jan 2009
    Location
    Virginia Beach, VA
    Posts
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    I've always said slow and steady wins the race!
    Susan

    Diagnosed at 10, Boston brace from 11-13 yrs old.
    50* Lumbar w/ 5 centimeter shift to the left and slight rib hump...
    Surgery Date: April 15 and April 22, 2009
    X-LIF approach for disc repair L5,L4,L3,L2
    Posterior Approach for fusions L5-T5
    Dr. Fox @ Naval Medical Center Portsmouth
    Nice and straight now!!!!!

  9. #9
    Join Date
    Feb 2007
    Posts
    254
    Susie, you and I had our surgeries the same month and both long fusions. Reading your post really hit home with me. At one year post op I thought I was doing pretty well and then 3 months later I seem to be having lots of problems that continue today. But I still do not regret having the surgery. I will make it through all the little set backs and come through a very strong person. I am back in Physical Therapy again but this time I am noticing a big improvement with my lower back. I am also back in the water doing aqua classes and no more land equipment for the time being...hopefully someday. As I strengthen my low back I am now having the shoulder problems again that I was having about a year ago. I see my surgeon again in May I will most likely wait until late June as the end of the school year is hard to take time off. I was told that the last set of x-rays showed the hardware is all in place but the PT said it also showed the L4 -L5 disk is wearing I am hoping to get many years out of that disk so hearing that has really made me think twice before I do things I know I should not do. It is always good to hear from you and how positive you are on everything. Its also nice to know I am not alone in this long slow recovery process.
    Patty 51 years old
    Surgery May 23, 2007(43 Birthday)
    Posterior T3- L4
    Pre surgery curves
    T-53degrees
    L-38degrees
    and a severe side shift to the right.
    Post surgery curves
    Less than 10 degrees
    Surgery April, 2006
    C4 - C6

  10. #10
    Join Date
    Dec 2007
    Location
    bucks county PA
    Posts
    156
    Hi Susie,
    I'm finally getting around to posting a reply (I'm a tortoise in more areas then just recovery)
    I'm glad to hear your appt. went well. It will be nice to be able to enjoy your new grand-babies! You definitely have been an inspiration to everyone here. I'm sure you have been a great help to both the tortoises and the hares as far as keeping things in perspective.
    Keep popping in and checking up on all of us.
    Sharon
    2 60* curves, DDD, left trunk shift, some rotation, rib and lumbar humps, annular tear at L5-S1
    surgery 5/08 planning fusion T3 or T4 to sacrum with iliac fixation
    Dr. Anderson at Rothman Institute
    5/16/08 ALIF L1-L5
    5/23/08 fused T2-sacrum w/fixation and I'm all Titanium
    6/4/08 open all back up to clean out for Staph infection
    (left open with just clear dressing)
    6/6/08 recleaned and closed
    3/30/2012 revision planned, broken rod and removal of iliac bolts

  11. #11
    Join Date
    Oct 2007
    Location
    Indiana
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    Thanks, Ladies One of the funny things is that I would have no idea about length of recovery except from reading on here. (Well, the Wolpert and Neuwirth books indicate quicker recoveries, but I still think they are mostly talking about young adults with possibly shorter fusions...) Anyway, even back at the hospital I was told I was doing better than most... but that makes me wonder what some of the others do, or if it is a ruse to get you on a positive track. It doesn't matter. I had a lot done to me, and I've worked hard to recover. I can't do more than that.

    Other than feeling "down" every once in awhile, mostly during the first year, I've thought my progress was going just fine. I think it's been in the last 6 months on the forum that so many people have recovered very quickly. I'm not sure that is the norm, so that is why I have to mention those of us who are the apparent tortoises. I know we have often said it's like you get hit by a Mack truck when you have this surgery. There are so many variables involved in that whole "impact" scenario. I just know that when I got "hit", it left me totally weakened and I am still continuing to build back my strength and abilities. But I'm getting there. The really frustrating thing is that I was always a strong person, with plenty of mind over matter attitudes. But I just couldn't do it with this... Oh well! We're all getting better and that's what counts!

    It would be interesting to plot our progressions on a graph... mine would pretty much be a steady incline-- but with a very shallow slope. Patty's would have at least a pretty big drop when her recent problems developed, etc., then building back up. And Chris started off with problems and took a long time to get going, because of her leg problem. Sharon plummeted with her infections... We could go on and on. But fortunately for all of us, usually the general trend is upward.
    67 and plugging along...
    2007 52 w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal 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
    NEW 10/2018 x-rays show 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

  12. #12
    Join Date
    Mar 2008
    Posts
    74
    So glad to hear your good news, Susie! I go back in May and it will be a year for me then. Your tortoise and hare analogy is spot on.
    Posterior fusion T5-L1 May 5, 2003-age 43
    Posterior revision, thoracotomy,fusion T2-L2 April 8, 2008-age 49
    Fusion extension C1-L2 evacuation left pulmonary effusion May 9, 2008, age 49
    www.buggfamily.blogspot.com

  13. #13
    Join Date
    Oct 2007
    Location
    Indiana
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    Quote Originally Posted by Susie*Bee View Post
    PS-- I got digital copies of some of my x-rays yesterday, so hopefully sometime soon I'll attach some that are much better to my signature. But don't hold your breath! That's hard for me.
    Well, I just finished adding some of the digital x-rays to my photobucket account and then adding that link to my signature. Thanks again to Pam for telling me how to do that, about a year ago... I could never do it without following those instructions!

    I paired up x-rays from just prior to my surgery along with ones from my appt. on the 12th. Sometimes I sort of feel "apologetic" that my major curve was ONLY 52, which sounds so slight compared to some of you, but when I look at the x-rays and how crooked I was, I know in my heart of hearts that I, too, was pretty darn crooked! I think I look soooooo straight now. Who wouldn't be happy with those results????

    Also, if some of them appear cropped, they most certainly are. It's bad enough to post these-- they are practically indecent! So, many have the bottom portion cropped off -- and others, where it would work, have at least a little of my "bloopiness" sheared off. Just wish it could have been more!!! but then there wouldn't be anything left to see. Ha ha! I am, as always, working away on my diet-- and have managed to lose 12 lbs. so far. Yay!
    67 and plugging along...
    2007 52 w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal 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
    NEW 10/2018 x-rays show 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

  14. #14
    Join Date
    Aug 2008
    Location
    Salina, Ks
    Posts
    126
    Susie,
    I really appreciate your post. I am one that many have commented on how quickly I have recovered. I would like to set the record straight. From those first days after my surgeries and my complications and extra surgeries, yes- I am lightyears away from that. Am I recovered?- long way from it. I was at my sisters this weekend and she had a big part in my after surgery care. She couldn't believe how great and "normal" I look, walk etc. I was extoling the virtues of my "old" pain being completely gone and she said "So, if you stayed just the way you are now, it would be OK?". No! I would take the old pain back in a heartbeat if I were to feel the way I do now for the rest of my life! I have not yet had a pain free moment and I still take pain meds but much less. The difference is, the pain I have now is from extremely major surgery that will take a long time to heal internally and I am confident it will. I look forward to not feeling my spine and my rods and the very tight bear claw grips. My Dr. said it would take at least a year to recover and maybe longer. I am grateful I can work again and take care of the basics of life so therefore, I do not complain about the "healing". Before, there was no chance of getting better, only worse. THAT was completely depressing and scary where I consider today a part of an experience that will eventually give me a much brighter future. I see this part of my life as part of the journey and I can choose how I view it. I choose to view it as positive even though there are still times that would be considered total misery by many people. I just don't want others to get the wrong impression that I am out running foot races and sailing thru a day pain free and completely healed and therefore, they should be also. It just isn't so. Sorry this is long but it is from my heart.
    Nancy Joy

    Surgery- Posterior- Oct. 8th, 2008
    Anterior- Nov. 10th, 2008
    Age 54
    T10 to Sacrum
    Curve 65 degrees
    Very straight now!!!

  15. #15
    Join Date
    Oct 2007
    Location
    Indiana
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    1,978
    Nancy Joy-- thanks so much for the clarification. So much of it is all relative! I understand totally about it being a different pain now from before surgery-- and the tightness and all. I'm hoping when spring and summer warmth arrive, some of the tightness will go away with the cold temps we have now. Time will tell. If not, I'm pretty much used to it by now!

    At 21 months, I would be ok with living this way for the rest of my life. I actually feel good almost all of the time-- just get achy some and worn out some, but I think some of that comes with my age and what I do. If I had had a desk job, I'm sure I would have been able to return either at the 3 or 6 month times. Now I know I am making gradual progress still-- and that gives me HOPE that I'm still getting better and better. I can think back to when I went back to work last August and could barely survive the day... I am still tired now after a day's work, but it's nothing like that. It's more like the normal tiredness after a day's work, but just a little more that I attribute to still being in recovery...

    It sounds like you are doing great and have a terrific attitude. You'll see-- time is the best healer, especially when coupled with determination and fortitude. That, of course, includes our willingness to work toward that end... like walking, doing PT if it's prescribed, etc. I really think it takes some work that way-- and pushing ourselves to the next step, sort of. But only after it's the right time and we are healed enough to take it.

    Best wishes as you continue on-- and to all you others-- both turtles and hares, present and future! Hugs, Susie
    67 and plugging along...
    2007 52 w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal 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
    NEW 10/2018 x-rays show 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

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