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Thread: 5 mos Post Op - still having problems....Normal?

  1. #1
    Join Date
    Nov 2010
    Location
    St. Louis, MO
    Posts
    86

    5 mos Post Op - still having problems....Normal?

    Hi all,

    I am a little over 5 months now but am still dealing with troubling sacrum and now upper back pain. I have had this since about 7 weeks post op as my surgeon told me at 6 weeks I could do some bending as long as it didn't cause pain and a lot of walking. Well I was numb so it felt okay to bend and walk a lot at the time. Anyway, since surgery my hips and sides of my thighs have been so tender and sore. Anyone else experience this? Also my butt bones (sorry) ache a lot when I stand and I get frequent sharp pains in various areas of the fusion and into my sacrum. Normal? I have been in phys ther since mid-March but it's really providing little relief. We are just using heat, tens unit (muscle stim) and ultrasound on my hips. I guess what I am really worried about is non-union. My back always feels stiff and aches from the time I get up in the morning until I go back to bed at nite. The only relief is laying down. I have talked to my dr several times and they refer me to more phys ther. I do have pain where the rods end at L3 and in my sacrum. It was getting more painful the more active I was so I stopped the structured walking program (walking 1-2 miles per day). I'm hoping to start some pool therapy next week. Most days I'm up and running around for the better part of the day, and only find time to lay down after work to get some pressure off the spine. I know I'm only 5 months...it's just so hard to not get discouraged as recovery is taking so long. I guess what I really want to know is whether my experience is normal and what non-union looks/feels like. When does it get better?
    Laurie Anne
    Age 30
    Pre-Op Curves T68, L80, Kyphosis 48 degrees
    Post-Op Curves both around 10 degrees
    Surgery with Dr. Lenke & Dr. Kelly 12/13/10
    Gained 2.5 inches now 5'9
    PRE-OP Photos: http://s1080.photobucket.com/albums/...urieScoliosis/
    5 Mos Post Op: http://s1080.photobucket.com/albums/...s%20Post%20Op/
    1-Year Post Op: http://s1080.photobucket.com/albums/...r%20Post%20Op/

  2. #2
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,163
    Hi LaurieAnne,

    I had a different area fused than you but what you describe is very similar to how I felt at 5 months. I still had significant daily "aches and pains" and had to lie down in the evening on my heating pad. I was uncomfortable in bed and would awaken several times at night with my back frozen in one place. I even was needing to take tylenol 2-3 x/day and 1/2 tramadol 1-2 times/day.

    I am now at 7 months and I am doing well. I had a huge and sudden improvement at 6.5 months. One thing that seemed to help a lot was at 6 months I was allowed to take NSAIDS, and I started taking 400 mg ibuprofen in the AM which helped a lot. Now I typically take tylenol once a day and sometimes ibuprofen, no more tramadol. I am definitely ready to lay on my heating pad by bedtime still.

    As the wise here told me, you are still early in recovery and will continue to take make significant improvements. I too remember being really worried at 5 months that I had a non-union or other problem in my lower back, but my x-rays were perfect, and now that area has made improvements. I know you will too. Try to listen to your body and not over-do things.

    Take care,
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  3. #3
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,707
    Laurie,
    Dr. Lenke was also my surgeon, as you probably know. I won't be 5 months until June 5 and will see Dr. Kelly on June 22nd for new x-rays. Every single time I feel a pain close to my spine I worry about non-union. When I lay down, I almost always feel a slight pop which doesn't hurt at all, but worries me. I am not teaching this semester so I haven't been tested with going back to work as you have. Most days I will get off my feet for about 15 minutes which gives me relief. I have had 3 days of not taking any Tylenol, but most days I'll take one or two. My back feels somewhat tight and stiff, but doesn't bother me 24-7. I have occasional achiness in my left ribs and sometimes on the top of my hip bone or the small of my back on the right side. I am walking a lot every day which doesn't bother my back at all. I try to use the pool at the Y once or twice a week. I still have not been given permission to bend (from Kelly or Janet-Dr. Lenke's PT), so I have avoided it just to be cautious. Dr. Lenke told me I could chip and putt when I saw him at 10 weeks which involves some bending, but I decided to play it safe. I'm much older than you and was fused T4-sacrum which I'm sure makes a difference in what is allowed. When do you go back for your next x-rays? I'm not sure if the x-rays will even show if there is fusion or not. I've heard that only a CT scan will show it and I don't think we will have that done even at 1 year. We saw Jersey Boys 2 nights ago and we were sitting in really cushy seats, however, it was still uncomfortable for me. I feel much better when I'm moving.
    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/

  4. #4
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,707
    Laurie Anne,
    I forgot to mention that I looked at your 5 month post-op pictures. Your back looks fantastic!

  5. #5
    Join Date
    Nov 2010
    Location
    St. Louis, MO
    Posts
    86
    Hi Karen,

    It's great to hear from you and it sounds like you are doing well! I go to see Dr. Kelly on June 22nd too. That will be a few weeks over my 6 month mark. I sure wish I felt better in motion than lying down. It's been so hard not being active. I miss walking reguarly and doing aerobics & weights. *sigh* I sure hope it gets better soon! I just try to take it one day at a time and pray for patience. I too see Janet for therapy. We do heat, tens unit (muscle stim) and ultrasound therapy on my sacrum/gluteal muscles which have felt sore and bruised like since surgery. Anyway, it's encouraging to hear it gets better for other people. I look forward to the day when it all turns around for me. I'm suprised I didn't bounce right back as I expected but I guess it just goes to show you really can't always predict what will happen. I pray you continue to do well and are back to golfing in no time
    Laurie Anne
    Age 30
    Pre-Op Curves T68, L80, Kyphosis 48 degrees
    Post-Op Curves both around 10 degrees
    Surgery with Dr. Lenke & Dr. Kelly 12/13/10
    Gained 2.5 inches now 5'9
    PRE-OP Photos: http://s1080.photobucket.com/albums/...urieScoliosis/
    5 Mos Post Op: http://s1080.photobucket.com/albums/...s%20Post%20Op/
    1-Year Post Op: http://s1080.photobucket.com/albums/...r%20Post%20Op/

  6. #6
    Join Date
    Nov 2010
    Location
    St. Louis, MO
    Posts
    86
    Quote Originally Posted by leahdragonfly View Post
    Hi LaurieAnne,

    I had a different area fused than you but what you describe is very similar to how I felt at 5 months. I still had significant daily "aches and pains" and had to lie down in the evening on my heating pad. I was uncomfortable in bed and would awaken several times at night with my back frozen in one place. I even was needing to take tylenol 2-3 x/day and 1/2 tramadol 1-2 times/day.

    I am now at 7 months and I am doing well. I had a huge and sudden improvement at 6.5 months. One thing that seemed to help a lot was at 6 months I was allowed to take NSAIDS, and I started taking 400 mg ibuprofen in the AM which helped a lot. Now I typically take tylenol once a day and sometimes ibuprofen, no more tramadol. I am definitely ready to lay on my heating pad by bedtime still.

    As the wise here told me, you are still early in recovery and will continue to take make significant improvements. I too remember being really worried at 5 months that I had a non-union or other problem in my lower back, but my x-rays were perfect, and now that area has made improvements. I know you will too. Try to listen to your body and not over-do things.

    Take care,
    Hi Gayle,

    Thank you for your post. It is so helpful to hear that others have had similar experiences as it gives me hope that things are ok just progressing slower than others. I too come home from work each day and lay on my heating pad usually for the rest of the evening. It gets old but nothing else makes it feel better...at least for now. I'm going to try water therapy next week. I've signed up for a back aid class at the YMCA. Did you ever do any water therapy? Did anything else help your pain besides tylenol, tramadol and NSDAIDS? I haven't been cleared to take NSAIDS yet and tylenol does nothing for my pain. I still have pain meds and muscle relaxers from surgery but I rarely take them...I just hate taking meds, esp pain meds. Everyday I tell myself if I can just go lay down I won't need them, and this usually works but sometimes I can't get home to lay down. How did you feel about pain meds? Any advice? Thanks again and hope things continue to get better for us all!
    Laurie Anne
    Age 30
    Pre-Op Curves T68, L80, Kyphosis 48 degrees
    Post-Op Curves both around 10 degrees
    Surgery with Dr. Lenke & Dr. Kelly 12/13/10
    Gained 2.5 inches now 5'9
    PRE-OP Photos: http://s1080.photobucket.com/albums/...urieScoliosis/
    5 Mos Post Op: http://s1080.photobucket.com/albums/...s%20Post%20Op/
    1-Year Post Op: http://s1080.photobucket.com/albums/...r%20Post%20Op/

  7. #7
    Join Date
    Aug 2008
    Location
    Indianapolis, IN
    Posts
    416

    Red face

    Quote Originally Posted by LaurieAnne View Post
    Hi Gayle,

    Thank you for your post. It is so helpful to hear that others have had similar experiences as it gives me hope that things are ok just progressing slower than others. I too come home from work each day and lay on my heating pad usually for the rest of the evening. It gets old but nothing else makes it feel better...at least for now. I'm going to try water therapy next week. I've signed up for a back aid class at the YMCA. Did you ever do any water therapy? Did anything else help your pain besides tylenol, tramadol and NSDAIDS? I haven't been cleared to take NSAIDS yet and tylenol does nothing for my pain. I still have pain meds and muscle relaxers from surgery but I rarely take them...I just hate taking meds, esp pain meds. Everyday I tell myself if I can just go lay down I won't need them, and this usually works but sometimes I can't get home to lay down. How did you feel about pain meds? Any advice? Thanks again and hope things continue to get better for us all!
    I just wanted to pop my two cents in...when I read your initial post, I was thinking to myself that all the things you are feeling are so normal. It might not feel that way to you because you are in the moment. But from someone looking backward on my own experiences...I remember feeling all those same things. You are not slower than normal, you are normal. Don't forget how huge this surgery is...and the recovery takes many months, even years. Everything you are having trouble with, I had trouble with...and it all went away. Keep your chin up ;-)
    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.

  8. #8
    Join Date
    Nov 2010
    Location
    St. Louis, MO
    Posts
    86
    Hi Kristy,

    Thanks for the reassurance! I guess I have gotten the impression from my physical therapist and surgeon's assistants that most people are further along than me by now but it's so great to hear I'm actually normal, so thank you for that! It really helps put my mind at ease about things
    Laurie Anne
    Age 30
    Pre-Op Curves T68, L80, Kyphosis 48 degrees
    Post-Op Curves both around 10 degrees
    Surgery with Dr. Lenke & Dr. Kelly 12/13/10
    Gained 2.5 inches now 5'9
    PRE-OP Photos: http://s1080.photobucket.com/albums/...urieScoliosis/
    5 Mos Post Op: http://s1080.photobucket.com/albums/...s%20Post%20Op/
    1-Year Post Op: http://s1080.photobucket.com/albums/...r%20Post%20Op/

  9. #9
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,707
    Laurie Anne,
    I am sure you are right on target with your recovery. I'm glad you are seeing Janet for PT since Dr. Lenke recommends her and doesn't really trust anyone else. Unfortunaely, she is "Out of Network" for my insurance but will give me exercises for a local PT when I am 6 months post-op. My appointment is 9:10 on the 22nd. What time is your appointment? Hopefully, we can meet. I will be looking for a tall, slim gal with a straight back! I was happy to meet Eveylyn (Confused Mom) at my last appointment.

  10. #10
    Join Date
    Nov 2010
    Location
    St. Louis, MO
    Posts
    86
    Karen,

    My appointment time is 8:50 on June 22nd but I will be there by 8:00 or 8:15 for xrays. That would be great if we could meet up! I can hardly wait to get past the 6 month mark...then a year! It will be so awesome to crawl around and play with my niece and be able to hold the new babies that will be coming (both my sisters-in-law are due in November)! It's gonna b a great year ~ and I really want to be on track. Just the thought of having to go through surgery again is too overwhelming to think about so I will stay positive. Thanks again and I will look forward to seeing you on June 22nd
    Laurie Anne
    Age 30
    Pre-Op Curves T68, L80, Kyphosis 48 degrees
    Post-Op Curves both around 10 degrees
    Surgery with Dr. Lenke & Dr. Kelly 12/13/10
    Gained 2.5 inches now 5'9
    PRE-OP Photos: http://s1080.photobucket.com/albums/...urieScoliosis/
    5 Mos Post Op: http://s1080.photobucket.com/albums/...s%20Post%20Op/
    1-Year Post Op: http://s1080.photobucket.com/albums/...r%20Post%20Op/

  11. #11
    Join Date
    Nov 2010
    Location
    St. Louis, MO
    Posts
    86
    One more thing - have you all experienced recurring sharp pains and chronic itching "inside" the incision? Is this just nerves waking up? How long will it last? Does anything help? It is REALLY annoying!! ~ Thanks!
    Laurie Anne
    Age 30
    Pre-Op Curves T68, L80, Kyphosis 48 degrees
    Post-Op Curves both around 10 degrees
    Surgery with Dr. Lenke & Dr. Kelly 12/13/10
    Gained 2.5 inches now 5'9
    PRE-OP Photos: http://s1080.photobucket.com/albums/...urieScoliosis/
    5 Mos Post Op: http://s1080.photobucket.com/albums/...s%20Post%20Op/
    1-Year Post Op: http://s1080.photobucket.com/albums/...r%20Post%20Op/

  12. #12
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,707
    Laurie Anne,
    I doubt if there is a single person who has gone through this surgery who doesn't worry about non-union. I've had a smooth recovery (I always have to add, so far, or I think I'll jinx myself) and still worry about non-union. Dr. Wolpert's book said that non-union is more common in older patients (that would be me) and longer fusions (also me) Since I wasn't braced, I wonder if I have accidentally moved too much. I am walking a lot and I know that it's supposed to help with the fusion, but yesterday I even worried that maybe I slightly twist when walking. I asked Kelly about bracing before my surgery and she said that Dr. Lenke feels your muscles get stronger sooner and that the instrumentation and the methods are better now giving you an internal brace, so I guess I shouldn't worry so much.

    Since you have over 3 weeks before your appointment, I would suggest calling Kelly so that you feel more relieved about your aches and pains. I have had a few sharp pains,too, but they only last for a second or two. I am assuming it's nerve endings. I'll see you on the 22nd.
    Karen

  13. #13
    Join Date
    Jun 2009
    Location
    Los angeles
    Posts
    122
    I think your aches and pains are still consider somehow normal at 5 month post op. I am almost 6 month post op and all I can say is that after all I've been through, I feel accomplished. I still have pains... sharp pains and needles... but I know I have to be pacient and that eventually I will not feel anything anymore.
    I gotta say... you look amazing!! your 5 month pics are stunning! I didn't get as much correction as you, and my back doesn't look like yours at all... but I am still grateful and happy with my results. You have a great cosmetic correction! congratulations! and hopefully, your pains will subside pretty soon. Don't get discourage... we went through a big change!
    Pilar
    Scoliosis Diagnosed at age 12. Wore Milwaukee brace for 2 years.
    Now age 32
    Pre-op curves: C86-T98-L37
    Surgery date: 12/6/2010 (anterior) 12/10/2010 (posterior)
    Fused T2 to L5 with thoracoplasty.
    Post-op curves: C48-T47-L17
    Dr. Robert Pashman
    Cedars Sinai, Los Angeles, CA
    Before and after xrays :
    http://www.scoliosis.org/forum/attac...5&d=1292969215

  14. #14
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,263
    Your scar has faded beautifully for 5 months Laurie Anne, and your back looks amazing.
    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

  15. #15
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,707
    Laurie Anne,
    Are you putting anything on your scar which has caused it to be nearly invisible? My husband put vitamin E oil on it for a while, but I haven't done anything recently. Any tips?

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