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Thread: decisions, decisions and different opinions

  1. #151
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,712
    Sneezes are still painful for me at 16 months post-op. I hope that is normal for a fused spine.

  2. #152
    Join Date
    Aug 2008
    Location
    Indianapolis, IN
    Posts
    416
    Quote Originally Posted by Confusedmom View Post
    Thanks Kristy & Ed,

    Wow, that's quite a video, Ed. Almost as tough as potty training your kids. I think I will try it with my younger cat when my 17-year-old kitty is no loner with us.

    I'd be interested to hear more about your theory of pain meds, Ed. Sounds like you think they interfere with healing?

    Kristy, that's awesome that you walk 3.5 miles at work! Is that now, post-revision?!
    I need to get a pedometer.

    In other news, I sneezed for the first time post-op today. (How I went 7 weeks without sneezing, I'm not sure.) Anyway, OUCH!!! Fortunately it seems to have been a fluke, rather than the start of a cold.

    I saw a picture of myself seated watching my daughter, and I must say I have some kickin' posture!!! That's another one to add to Ed's fusion benefits.

    Cheers,
    Evelyn
    Seven weeks without a sneeze? Wow! And in the springtime too...
    Yes, it is a little tender to sneeze, even a couple years out.

    I was surprised how my steps added up to miles too. My job involves lots and lots of walking so that is an advantage for me. I agree with Ed that distraction helps. My back has gotten much much better since I returned to work and have something else to think about, more activity and friends to talk to, and in my case there are patients that come in with problems far worse than mine.

    Lol, I have had so many comments on my posture too! I have tried to slouch and can't. You don't know how much I love that. I use to have to remind myself not to be so slouchy and tippy (to the left in my case). Enjoy it ;-)
    May 2008 Fusion T4 - S1, Pre-op Curves T45, L70 (age 48). Unsuccessful surgery.

    March 18, 2010 (age 50). Revision with L3 Osteotomy, Replacement of hardware T11 - S1 , addition of bilateral pelvic fixation. Correction of sagittal imbalance and kyphosis.

    January 24, 2012 (age 52) Revision to repair pseudoarthrosis and 2 broken rods at L3/L4.

  3. #153
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    7,198
    The sneezing thing was very strange for me as well. I typically sneeze at least 2-3 times a day. I was scared to death, after my first surgeries, of what would happen. Strangely, I didn't sneeze until I was 4-5 months postop. The body is truly strange at times.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  4. #154
    Join Date
    Jan 2009
    Location
    Ames, Iowa
    Posts
    1,250
    Isn't that crazy? I remember not sneezing for weeks. Then when I did it was quite memorable. I started counting my sneezes--had had something like 7 by 4 months. My sneeze still sounds different than it used to pre-surgery since I still sort of brace for it I guess. Janet
    Janet

    61 years old--57 for surgery

    Diagnosed in 1965 at age of 13--no brace
    Thoracic Curve: 96 degrees to 35 degrees
    Lumbar Curve: 63 degrees to 5 degrees
    Surgery with Dr. Lenke in St. Louis--March 30, 2009
    T-2 to Pelvis, and hopefully all posterior procedure.

    All was posterior along with 2 cages and 6 osteotomies.

  5. #155
    Join Date
    May 2010
    Location
    Indianapolis area
    Posts
    970

    Uh-oh, nerve pain in leg!?

    Hi all,

    I'm freaking out a bit. For the past week, any time I sit for any length of time (like 30 min.) I get this dull pain in my hip and kind of sharp pain on the outside left of my lower left leg. Feels a lot like what I would call "sciatica," although I used to get that in my upper right leg, pre-op. Today I noticed that if I lean at all on that leg, I get this kind of "hit the funny bone" twinge in my hip. This happens with just the slightest lean, like reaching for a dish in the sink to load in the dishwasher. I'm concerned because this is new pain. I guess it's technically possible that it was here all along and I am only now down far enough on the pain meds to feel it, but I don't think so. My fear is that somehow the fusion process is pinching a nerve and it's not going to go away. Alternatively, I'm worried I somehow messed up my alignment already. My mom did break pretty hard in the car recently with me riding along, but I didn't start to feel this pain until a week later. Thoughts? Can this type of thing come & go? Hope so! I'm probably going to call Dr. Lenke's nurse tomorrow and see what she has to say.

    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.

  6. #156
    Join Date
    May 2009
    Posts
    3,729
    Ev, just a question....
    did you ever have any pain related to sacroiliac joints...?
    i had sciatica that went down left leg, from hip...
    i know sciatica is supposedly nerve related....
    nothing helped mine besides time...and SI joint injections...
    i have no idea what is causing your pain...just
    wondering if you ever had anything connected to
    the SI joints bother you...

    hope the pain goes away soon...

    jess...& Sparky

  7. #157
    Join Date
    May 2010
    Location
    Indianapolis area
    Posts
    970
    Hi Jess,
    After both my pregnancies, I had to have physical therapy for lower back pain. The second time the PT said my SI joint wasn't aligned correctly and she gave me exercises that helped get it back in place. She also had me wear a "SI belt," which helped hold the joint in place once it was aligned. Do you think this could have something to do with my hip pain? And how would fusion to the sacrum factor in? I wish I knew more about the mechanics. Thanks!
    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.

  8. #158
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    7,198
    Quote Originally Posted by Confusedmom View Post
    Hi all,

    I'm freaking out a bit. For the past week, any time I sit for any length of time (like 30 min.) I get this dull pain in my hip and kind of sharp pain on the outside left of my lower left leg. Feels a lot like what I would call "sciatica," although I used to get that in my upper right leg, pre-op. Today I noticed that if I lean at all on that leg, I get this kind of "hit the funny bone" twinge in my hip. This happens with just the slightest lean, like reaching for a dish in the sink to load in the dishwasher. I'm concerned because this is new pain. I guess it's technically possible that it was here all along and I am only now down far enough on the pain meds to feel it, but I don't think so. My fear is that somehow the fusion process is pinching a nerve and it's not going to go away. Alternatively, I'm worried I somehow messed up my alignment already. My mom did break pretty hard in the car recently with me riding along, but I didn't start to feel this pain until a week later. Thoughts? Can this type of thing come & go? Hope so! I'm probably going to call Dr. Lenke's nurse tomorrow and see what she has to say.

    Thanks!
    Evelyn
    Hi Evelyn...

    First, you should know that I think most of us believe we've done something to hurt our fusions at some point in the first year or so. With that said, I think it's a good idea to call the nurse. No matter what it is, it's unlikely to be an emergency. I hope whatever it is, goes away as mysteriously as it came on.

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  9. #159
    Join Date
    May 2009
    Posts
    3,729
    hi Ev
    i wish i knew the answer of what, if anything,
    the fusion did or didn't do in connection to the SI joint...
    i think it is a question for your surgeon...
    i only know that SI joints can be responsible for
    more pain than anyone ever suspects...pre and post
    surgery...
    hope you can speak to your surgeon's office...
    and hope the pain goes away soon...

    jess
    Last edited by jrnyc; 06-08-2012 at 10:15 PM.

  10. #160
    Join Date
    Jul 2011
    Location
    Nashville, TN
    Posts
    177
    Please let us know what the nurse says about the leg pain. Hopefully it goes away soon. It is frightening when these "new" pains crop up and we don't know if it is "normal" recovery pains or not.
    Pam, age 49
    Thoracolumbar curves 80 and 40 corrected to 20 degrees
    April 20, 2012 surgery with Dr. Lenke
    T-3 to sacrum

  11. #161
    Join Date
    May 2010
    Location
    Indianapolis area
    Posts
    970

    Driving!!!

    Hi all,

    Thanks so much for your feedback about the leg pain. Linda, I always appreciate your calming advice. I haven't called Dr. Lenke's nurse yet, but I'll let you all know what she says when I do.

    In the meantime, I started driving again today! It is such a feeling of freedom after having depended on others for three months!! I really didn't have anywhere to go--just wanted to see if I could tolerate it--so I drove down to the gas station and brought home a half gallon of Oreo ice cream. (Had to celebrate a little!)

    Here's some info for those facing surgery: It is not illegal to drive while taking prescription pain killers (at least not in Indiana). However, it IS illegal to drive while "impaired." So, basically, it's a judgement call. I am down to three, 5 mg tablets of Hydrocodone in 24 hours. Plus, I've been taking it for three months, so I know how I react to it. So I felt comfortable driving again today.

    Only problem is, I am still extremely uncomfortable sitting up in the car. Sitting is the worst for me, anyway, and the car just magnifies that. I assume I will get used to it over time, though.

    In other news, I also went to my first evening out post-op last night. It was a nice dinner party at a friend's house. I got to wear a dress for the first time with a straight back!!! I swear it makes me look 10 lbs lighter, even though my weight is actually the same as pre-op. It was so nice to zip up a dress without having to maneuver it around a rib hump! I stayed at the party for four hours (alternating sitting & standing)!!! So, life is very gradually returning to normal.

    Hope everyone had a great weekend!

    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.

  12. #162
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,263
    Quote Originally Posted by Confusedmom View Post
    Hi all,

    Thanks so much for your feedback about the leg pain. Linda, I always appreciate your calming advice. I haven't called Dr. Lenke's nurse yet, but I'll let you all know what she says when I do.

    In the meantime, I started driving again today! It is such a feeling of freedom after having depended on others for three months!! I really didn't have anywhere to go--just wanted to see if I could tolerate it--so I drove down to the gas station and brought home a half gallon of Oreo ice cream. (Had to celebrate a little!)

    Here's some info for those facing surgery: It is not illegal to drive while taking prescription pain killers (at least not in Indiana). However, it IS illegal to drive while "impaired." So, basically, it's a judgement call. I am down to three, 5 mg tablets of Hydrocodone in 24 hours. Plus, I've been taking it for three months, so I know how I react to it. So I felt comfortable driving again today.

    Only problem is, I am still extremely uncomfortable sitting up in the car. Sitting is the worst for me, anyway, and the car just magnifies that. I assume I will get used to it over time, though.

    In other news, I also went to my first evening out post-op last night. It was a nice dinner party at a friend's house. I got to wear a dress for the first time with a straight back!!! I swear it makes me look 10 lbs lighter, even though my weight is actually the same as pre-op. It was so nice to zip up a dress without having to maneuver it around a rib hump! I stayed at the party for four hours (alternating sitting & standing)!!! So, life is very gradually returning to normal.

    Hope everyone had a great weekend!

    Best,
    Evelyn
    Congrats on your latest mile-stone. It's such a wonderful feeling getting back to normal. Wearing the dress would have been such a thrill and yes, I can relate to the feeling of freedom, driving that first few times.

    Sitting in the car is still uncomfortable for me. No pain, just uncomfortable. The seat back curves backwards and I'm solidly curved forwards in the lumbar area. Simply fixed by a small cushion to fill that gap.
    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

  13. #163
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,978
    Singer (Chris) had leg pain for quite awhile after her surgery with Dr. Boachie. You might want to send her a PM and ask her about it. Or you can try doing a search. Best wishes!
    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. #164
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,712
    Evelyn,
    Did you find out anything about your leg pain? I still use a pillow behind my back in the car. Isn't it great to be driving again?
    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/

  15. #165
    Join Date
    May 2010
    Location
    Indianapolis area
    Posts
    970

    One year + postop! Screw loose? (Literally.)

    Hi Everyone,

    I dredged up this thread again because I'm now officially one-year post-op! Actually, I'm a little past that.

    I am still undecided ("confused," you might say), whether surgery was right for me when I did it. I went from nearly pain-free but with a very large progressive curve to a small but consistent degree of discomfort/pain. The pain is in my left hip and is most noticeable when I try to exercise vigorously. I will say, though, that I am very glad the surgery is behind me, not in front of me. And I am thankful my outcome is as good as it is. My back is nearly straight, and I rarely have leg pain anymore. (I had a bout of sciatica pre-op and some leg pain post-op.)

    I sent this message to a friend, and thought I would re-post it here:

    I had my appointment with Dr. Lenke a few weeks ago. I told him I thought my pelvic screw was moving, and he looked at my X-rays closely. He said he didn't see anything wrong, but suggested getting a CT of the L5-S/I joint. I asked his fellow if a CT would change the treatment, and he said "no." So, I decided not to get a CT because of the radiation. (Why can't I get an MRI if I have cobalt-chromium rods?) Dr. Lenke said I should do physical therapy, get an injection, and if the pain still bothers me at two years, he will remove the screw.

    He said he can see signs of fusion, but it's not possible to tell from an X-ray whether I'm fully fused. Still, he said I have no restrictions at this point. He also said my rib hump appears to be within the normal range of "settling" you get in the first year. It appears bigger to me than it did immediately post-op, but I guess that could partly be muscle atrophy. (My height has gone back down a bit from just over 5ft 3 to just under, as well.)

    I got to meet with Janet (the physical therapist), and she gave me some new exercises to stretch my hamstrings and calves, etc. Contrary to Dr. Lenke, she doesn't recommend bending, lifting or twisting. Also, she said logrolling "is forever."

    Dr. Lenke said the general soreness/fatigue in my back is normal, and that I still need to rebuild muscle. He said an older person, like 75, might not notice a difference, but younger people with long fusions need to work harder to rebuild the muscle they were used to having.

    Also, for the pelvic screw, he said it's possible that I have a "fracture." His fellow said that meant the screw, not my hip. Apparently a broken screw can cause irritation. Alternatively, he said the pain could be from movement in the unfused S/I joint, which would take all the stress of a long fusion. In fact he said pain there could be an indication the rest of the spine is fusing well because it puts more pressure on that joint when the rest doesn't move. I don't completely buy this explanation, as I have had this pain since at least 10 weeks post-op. I am still afraid I somehow screwed up the hardware.

    The bottom line of all of this for me is exactly what I expected: do some physical therapy and hope the pain goes away in the next year. I am not sure I'm going to get an injection. I'm not sure the potential benefit outweighs the risk. My pain is tolerable most of the time, and I rarely take even Advil or Tylenol (1-2 times per month, maybe).

    I am pleased that I feel like I am very slowly moving off the assistive devices. I can put my socks on now (thanks, Heidi for the inspiration!). I can shave without a long-handled razor. I can squat to pick things up off the floor and load the dishwasher. I still use a grabber when I am cleaning up, but it's more for convenience and to not irritate my hip. The car and sitting in general are getting much better, too. Though I still wouldn't go as far as calling them "comfortable." Plus, I like the shape of my back and the fact that I have a waist again.

    This next year is going to be about gradually getting more physically fit, I hope. Plus I need to lose the 15 pounds I have put on in my more sedentary post-op year. I think I can do it, as I can walk on the treadmill for 40+ minutes at a time now. Just need to avoid the Easter/Valentine's/Halloween candy!!! I have found it very easy to over-indulge in "comfort" food this past year.

    Well, that's all for now. If you made it all the way through this, thanks!!

    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.

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