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Thread: Terrible neck , shoulder and upper thoracic pain!

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  1. #1
    Join Date
    May 2010
    Posts
    345

    Terrible neck , shoulder and upper thoracic pain!

    Hi all, greetings to all my friends! I am directing this toward Linda R.. But it also would be good to hear from anyone that may have had any of the same problems . I am having an awful time with my neck. As you can see from my signature, I am fused up to T/4. Then from that spot on up to under my occipital bone in the back of my neck it is very painful. I can't lean my head back to look up anymore. The pain also radiates over to my shoulders. There's also a big bump at the top of my spine above T/4 about four inches. Has anyone had to go back in and have surgery to fuse farther up. I don't feel like I can hold my neck up anymore. It feels like it wants to fall forward. I have pain in my lower back too. But I know that's the iliac bolts! I hate this feeling that my chin is hitting my chest. It isn't really a feeling. When I lean my head back
    sitting in a chair, it happens. I accepted that after five major back surgeries,I will be living with chronic pain. Just need some opinions and feedback on this neck thing. One more thing that bothers me
    at T/4, it feels like the screw is way to far in. There is a big dent there. It's uncomfortable. I just want to loosen the screw for relief! Linda, if you see this, I would love your input. I am grateful to be standing up, but like I said, pain will always be an issue. Bye for now! Linda
    Linda Brozik~~60 yrs. old at time of Lenke's first surgery. 62 now!
    Surgery 2006 L3/4 L4/5 double fusion/ instumentation/ With 2 cages
    This started adult onset scoliosis
    July 1st, 2010/ surgery ~~fused T10 to pelvis (long rods/ screws)
    Oct.20th 2010, extended rods to T4 / did osteotomy at L3
    Oct. 29th 2012 Dr. Lenke St. Louis Mo. T4 to sacrum osteotomy anterior cage L3/4 titanium rods
    May 30th 2013 revision
    May 8th cervicle surgery 2016
    May 31st Dr. Gupta revision 2017

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,794
    Hi Linda...

    I'm not sure what I can tell you. It sounds like proximal junctional failure, but I can't tell without seeing xrays. And, even then, please remember I have no medical training. I think you need to see Dr. Lenke.

    There are a few people here who have had to have their long fusions extended up to the top of their cervical spine. Melissa, unfortunately, comes to mind.

    There's an industry study group (ISSG) that is looking at this issue. I'll see if I can get any info.

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  3. #3
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    758
    hi Linda, I am fused t2 -pelvis. And c4-7. When I had the cervical fused it took care of a lot of the issues you are having. I am not fused c7 to t2. I can turn my head well. Maybe not as far as before but functional.
    T10-pelvis fusion 12/08
    Fractured t-9 six days out of surgery
    C5,6,7 fusion 9/10
    PJK at t-9
    T2--T10 fusion 2/11
    Removal of left side t6-t10. 8/14
    C 4-5 fusion 11/14
    Right scapulectomy 6/15
    Right pectoralis major muscle transfer to scapula
    To replace the action of Serratus Anterior muscle 3/16

  4. #4
    Join Date
    May 2010
    Posts
    345
    Quote Originally Posted by LindaRacine View Post
    Hi Linda...

    I'm not sure what I can tell you. It sounds like proximal junctional failure, but I can't tell without seeing xrays. And, even then, please remember I have no medical training. I think you need to see Dr. Lenke.

    There are a few people here who have had to have their long fusions extended up to the top of their cervical spine. Melissa, unfortunately, comes to mind.

    There's an industry study group (ISSG) that is looking at this issue. I'll see if I can get any info.

    --Linda
    Thanks Linda for your input. I do see Dr. Lenke the 20th of May. (2yr. Checkup)As you know he leaves in June. But I just wanted to throw this out here on the forum to hear what you had to say and others on here as well. I value your opinion very much, although I know you can't tell anything unless you have an X-ray to see. But I did think of PJF as something it could be. I just know it is very uncomfortable. I would appreciate it if you send any info at all! Thanks again and hope you are doing well with your fusion. Sincerely, Linda
    Linda Brozik~~60 yrs. old at time of Lenke's first surgery. 62 now!
    Surgery 2006 L3/4 L4/5 double fusion/ instumentation/ With 2 cages
    This started adult onset scoliosis
    July 1st, 2010/ surgery ~~fused T10 to pelvis (long rods/ screws)
    Oct.20th 2010, extended rods to T4 / did osteotomy at L3
    Oct. 29th 2012 Dr. Lenke St. Louis Mo. T4 to sacrum osteotomy anterior cage L3/4 titanium rods
    May 30th 2013 revision
    May 8th cervicle surgery 2016
    May 31st Dr. Gupta revision 2017

  5. #5
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,160
    Hi Linda,

    I remember there was a younger woman here about 5 years ago who had a similar problem as yours…she had surgery with Boachie as I recall, but I don't remember her name. She couldn't hold her chin up off her chest at her worst. Everything checked out with her back, so she was sent to PT, which did give her quite an improvement. I think as it turned out her problem was due to some type of muscle atrophy.

    I will try to search for her posts to see if they help you at all. You definitely deserve a break by this point!
    Gayle, age 49
    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)
    5/10 VBS Dr Luhmann Shriners St Louis
    5/16 6 yrs post-op, 24*T/ 22* L, mild increase in curves, watching

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

  6. #6
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,160
    This is who I was thinking of:

    http://www.scoliosis.org/forum/showt...ery&highlight=

    http://www.scoliosis.org/forum/showt...-op&highlight=

    Does this sound at all like what you are experiencing?
    Gayle, age 49
    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)
    5/10 VBS Dr Luhmann Shriners St Louis
    5/16 6 yrs post-op, 24*T/ 22* L, mild increase in curves, watching

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

  7. #7
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,794
    Hi...

    We see the occasional patient with what we "chin on chest" disease. Linda, I don't recall your original issue (before your first spine surgery). Did you have a relatively sudden onset of coronal and/or sagittal imbalance?

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  8. #8
    Join Date
    Mar 2005
    Location
    Ukiah CA
    Posts
    891
    Good luck linda
    Kara
    25
    Brace 4-15-05-5-25-06
    Posterior Spinal Fusion 3-10-10
    T4-L2
    Before 50T
    After 20T

  9. #9
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,531
    Wow Linda, I don’t know what to say other than that I have read your post around 10 times now....

    Thinking of you...

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF 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

  10. #10
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,224
    Thinking of you
    Melissa
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  11. #11
    Join Date
    Aug 2008
    Posts
    24
    We were just talking about neck and thoracic pain on the Facebook group today. Hope to see you there and share our experiences.

  12. #12
    Join Date
    May 2010
    Posts
    345
    Quote Originally Posted by dixiesmommie View Post
    We were just talking about neck and thoracic pain on the Facebook group today. Hope to see you there and share our experiences.
    Dixiemommies~~ what's the Facebook page called where this discussion takes place? Linda
    Linda Brozik~~60 yrs. old at time of Lenke's first surgery. 62 now!
    Surgery 2006 L3/4 L4/5 double fusion/ instumentation/ With 2 cages
    This started adult onset scoliosis
    July 1st, 2010/ surgery ~~fused T10 to pelvis (long rods/ screws)
    Oct.20th 2010, extended rods to T4 / did osteotomy at L3
    Oct. 29th 2012 Dr. Lenke St. Louis Mo. T4 to sacrum osteotomy anterior cage L3/4 titanium rods
    May 30th 2013 revision
    May 8th cervicle surgery 2016
    May 31st Dr. Gupta revision 2017

  13. #13
    Join Date
    Aug 2008
    Posts
    24
    Baby boomer, I don't post on this forum anymore but read your post as you wanted to get in on the FB page. I know exactly what you are speaking of. My mom and sister both have that bump between their shoulder blades I am having lots of pain in the same area. I just started a post about it. I recently fell and it feels like all the impact went right to that area. I can hardly look up anymore. Shoulders are so sore too.

  14. #14
    Join Date
    May 2010
    Posts
    345
    Hi, I am back from my appt. with Dr. Gupta at the Washington University. I am going to try to explained what he told me about my neck first and then my lower back. He showed me a picture of my neck from the MRI that I sent him. It showed the disc in my neck squeezing my spinal cord together really bad. But I can't tell you the exact discs that are pressing on it yet.Then he surprised me by showing me that on my right lower side, where Dr. Lenke had put double rods,they are both broke into. I guess I kind of knew something was wrong with the lower back, but I was in denial!! I have felt like things were loose when I walk. Anyway, he wants a mylogram for to see my bones better. He said he could see the neck better to get a better picture as to how to proceed with surgery on the neck. Also the mylogram can show if I am fused in my lower back. That can tell him if that may be a reason for the broken rods( if I'n not fused). I hope I am fused. I walk kind of off balance and have been for a while. My feet are numb a lot. He thinks that's from my lower back. The pain is not good. Anyway, they woul have done the mylogram the same day, but I had taken an asprin and so because it is a blood thinner they couldn't do it. It takes three days to get out of your system. Anyway, I go back Jan. 5th for the mylogram and some more pre op stuff, and then he will do surgery on my neck six weeks later. It is more important than the broken rods. He put it this way'" the broken rods won't kill you, but the neck could. Well, sorry this is so long, but this is all of it in a hand bag!!!
    I am so stressed about more surgery~~ but I guess I have to do what I have to do! Darn!!! I just want this nightmare to go away!! But like Susan says" It is what it is" !! I am going to bed now!! Long trip!! Thirteen hours!! Goodnight to all~~ Linda
    Linda Brozik~~60 yrs. old at time of Lenke's first surgery. 62 now!
    Surgery 2006 L3/4 L4/5 double fusion/ instumentation/ With 2 cages
    This started adult onset scoliosis
    July 1st, 2010/ surgery ~~fused T10 to pelvis (long rods/ screws)
    Oct.20th 2010, extended rods to T4 / did osteotomy at L3
    Oct. 29th 2012 Dr. Lenke St. Louis Mo. T4 to sacrum osteotomy anterior cage L3/4 titanium rods
    May 30th 2013 revision
    May 8th cervicle surgery 2016
    May 31st Dr. Gupta revision 2017

  15. #15
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,690
    Oh, I hate to hear that you have another surgery in your future. I will send you an email.
    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/

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