Terrible neck , shoulder and upper thoracic pain!

[babyboomer16]

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

[LindaRacine]

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

[jackieg412]

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.

[babyboomer16]

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

[leahdragonfly]

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!

[leahdragonfly]

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?

[LindaRacine]

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

[babyboomer16]

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~

[golfnut]

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.

[susancook]

Bummer, Linda. Hoping that the resolution comes with PT. Us frequent flyers" to surgery deserve a break!
Hugs, Susan

[JenniferG]

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.

[babyboomer16]

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

[mabeckoff]

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

[babyboomer16]

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

[golfnut]

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 . . .