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Thread: Terrible neck , shoulder and upper thoracic pain!

  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
    6,802
    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
    766
    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
    1,162
    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 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

  6. #6
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,162
    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 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

  7. #7
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,802
    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
    May 2010
    Posts
    345
    Quote Originally Posted by LindaRacine View Post
    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
    After my surgery in 2006 that was a double fusion (L3/4 L4/5) for lower back, left leg pain, I slowly developed Sagittal imbalance(flat back syndrome). They said I had adult onset scoliosis. But Dr. Lenke said he thinks I always had scoliosis from birth. (It wasn't till 2010 that it became a serious situation. So I guess the answer is "no"it wasn't sudden. I was told that the 2006 surgery was the onset of all my problems. It won't be too long before I go to St. Louis to see Dr. Lenke. I'm hoping all this is something that can be helped with some non invasive techniques. I will let you know. Thank So Much~
    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

  9. #9
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,691
    Linda,
    I have not checked in with the forum for a while and was sorry to read that you are having problems. I am thankful that you will be seeing Dr. Lenke soon. Hopefully, he will have a recommendation that will give you relief. I know you've been through a lot already. Be sure to give us an update after the 20th.
    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/

  10. #10
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,527
    Bummer, Linda. Hoping that the resolution comes with PT. Us frequent flyers" to surgery deserve a break!
    Hugs, Susan
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone + prayer

  11. #11
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    All the best for your appointment with Dr. Lenke in a couple of days. Please let us know what he says. Thinking of you on the 20th.
    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

  12. #12
    Join Date
    May 2010
    Posts
    345

    Back from my two year checkup!

    Hi all, I just want to update you on my two year checkup with Dr.Lenke. He said that the metal looks good
    and all looks in place. He thought my films look better than a yr. ago. However, above T/4 is a total disaster. My cervical discs are all collapsed and arthretic. And believe me, I can feel the pain. Dr. Lenke offered to set me up with the cervical surgeon there at Washington University. But I declined as I want to try some more conservative approaches first. If I can stand it that long. Dr. Lenke will be leaving Washington University in June and going to New York to run his own hospital. (What I was told) a Dr. Gupta , from California, was asked to take his place , and he accepted the position. So I will see him at my three
    Yr. checkup. Unless I go to New York to see Lenke. I live in central So. Dak. Ugh!
    For those that have gone on to have their necks fused, could you chime in here and let me know
    what to expect, if I would decide to do it. I am actually having terrible pain radiating from T/4 up to my neck down through my shoulders and under my left shoulder blade. Sound familiar anyone? It wasn't as bad when I saw Lenke. Isn't that the way it goes. I don't know if I did something between then and now or what happened.??? It was hurting always, but notto this extent! The good news is the rest of my body is fused. The bolts in my sacrum are painful a lot of the time. but he doesn't think it wise to remove them. Well, that my story and I'm sticking to it!
    May God Bless all of you! 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
    Jun 2011
    Location
    Southern CA
    Posts
    2,224
    How high up are they talking about fusing your neck? Are you talking about fusing your neck to the spine , as Dr Bederman did for me?

    Melissa
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  14. #14
    Join Date
    May 2010
    Posts
    345
    Quote Originally Posted by mabeckoff View Post
    How high up are they talking about fusing your neck? Are you talking about fusing your neck to the spine , as Dr Bederman did for me?

    Melissa
    Melissa, I havn't got that far yet to talk about surgery. I called Dr. Lenke's medical assistant today and told her about the terrible pain in my neck and shoulders , behind my left shoulder blade and down my arms. Also there's deep a sharp pain right where the rods stop at T/4. That radiates up to my neck, clear under the occipital bone under the skull. Ugh! I'll let you know what I hear. Did it make a big difference after they fused you on up and thru the neck? (Pain wise)? I would imagine that's a dumb question on my part!! It had to feel better! Hope you are getting thru things and doing well. 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
    1,691
    Linda,
    Since you have to drive so far to get to St. Louis, it sure would have been nice if you could have seen a cervical surgeon while you were there on the 20th. Maybe a Cervical Specialist could recommend something less invasive than surgery, such as physical therapy, steroid injections, etc. It sounds like you are in terrible pain today and I truly feel for you. Everyone fears more surgery and you have already had more than your share, however, if that's your only chance at relieving the pain, it may be the best choice. I obviously do not know. Maybe you will get some positive comments from those who have been fused in the cervical spine. Thinking of 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/

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