Introduction and my winged scapula

[Kunkelba]

Hello,
I am glad I found this forum. I had an ACDF c7-t1 in Dec 2014. Exactly 3 weeks after the surgery I sat up using my arms and the left side of my shoulder, pectorial, and ribs all tightened up – I thought I was having a heart attack. I went to numerous doctors in Oklahoma, California and Texas, all saying ACDF okay, and was told it was a shoulder problem, or thorasic outlet syndrome or said they didn’t know.

Finally, UCSD took a closer look, and notice I had a chickenbone winged scapula, but still couldn’t pinpoint cause, although an MRI showed some new problems in my neck, c5-c6. Then I went to UTSW and they finally did a MRI(called MSK) that would take a look at the nerves, and they found moderate traction injury(no idea how that happened). To complicate things, I also have increasingly problematic in my neck in 2015. MRI readings….. C4-5 Bilaterial facet arthopathy and hypertrophy, left greater than right, left mild foraminal stenosis but no disk protrusion.

C5-C6 endplate spurring and disk protrusion centrally and extending more to the left. Endplate spurring increased on the left since last study. Deformity of the ventral cord surface on left. Left foraminal stenosis greater than right. I also had some damage to my interspinous ligaments c4-6 (which I believe I caused when pulling weeds on a hill and lost balance pushing my head forward) and lost the curve in my neck, as the muscles on the right side have gone atrophic. UTSW told me to hold off on surgery and just see how things go, so for the first 8 months of the year, things seemed to be doing okay, until September when I noticed my shoulder continuing to de-stablize (and I exercise the winged scapula every day).

Which brings me to today-UTSW mentioned I could add an ADR and ACDF sometime in the future. I can deal with pain, but the winged scapula and weakening shoulder is a disabling concern that if I don’t get that nerve relief (which I guess is causing the problem) the scapula may never heal. With that said, I have okay insurance this year, but next year have to go to marketplace and very concerned no doctors will take that insurance.

Any advice on who might help or give me guidance would be great. I find it interesting that the doctor who did the ACDF dismissed me and sent me to pain management.
blake

[Harrison]

Blake, can you tell us more about your clinical history? Car accidents, trauma? Unusual medical problems or events in your earlier years?

It sounds like something else is confounding the doctors...

Sorry about all this. You are among friends who want to help!

[Kunkelba]

Thanks much for the reply, Harrison. There was no trauma that triggered the 2013 ACDF c7-t1 surgery. I was oversold the ACDF from the Carrell Clinic in Dallas. I had pain in my left ulnar nerve, started after bowling, but I waited 3 years, and the surgeon just said it would get worse, and this would fix it. Dr. Clevenna mentioned how Peyton Manning had a ACDF and he plays football, several times. I regret this surgery so much.

All my problems started after I sat up, 3 weeks after the surgery. And my left torso, shoulder and all tightened up…..Doctor Clevenna did tell me he knicked the nerve on the left side and irritated it….and somehow I think that started my chain reaction of events. The doctor dismissed me, said I had thoraric outlet syndrome and sent me on to pain management.

During 2015, while trying to build up muscle around my scapula, I did lift weights over my head. This set me back, I heard a pop/crack in my neck and said that’s not good. I was in major pain and loosing strength in my left arm last Fall.

I went to UTSW, and they did a nerve MSK MRI and that’s where the moderate traction injury was noted(when that happened unknown, I was not in an accident.) ….I sometimes wonder if that happened 3 weeks after or during the 2013 surgery. Another oddity, is that after the surgery, muscles on the back of my neck changed, its all got to be related to when I sat up 3 weeks after the ACDF.

Right now I have two one year old MRI’s, the MSK version that looked at nerves, as mentioned above and a so called regular MRI that shows most problems at the C5-C6 along with spurs and facet problems, and c4-5 starting to be problematic.

Now what I have notices is pressure on the left side of my neck there and when I move my arm up and down , the facet/vertebrae moves , and if touched, it becomes very painful.

In 2015 UTW told me to hold off on surgery and wait. Things were status quo and arm strengthening, until September. Since then shoulder has become more atrophic with instability, and increased weakness. Last year, UTSW said that the scapula may never heal, but mentioned in may be a candidate for an hybrid ADR solution (Dr. Gill). I went back this past week to UTSW (different doctor, same department Dr. Gluf) and he said this time nothing they can do but fuse the entire neck. They also said the c5-c6 would not cause the scapula problems. I disagree from reading, and mine could be a complication from the moderate traction injury (which a nerve doctor said would have healed by now). I also pointed out about the vertebrae shifting/moving, he didn’t really care to listen to me and just looked at MRI and said nothing he can do.

I don’t know where to go, I don’t want surgery because of this 2 year nightmare of additional problems. I just wonder if I am going to become permanently disabled. But if surgery can save my shoulder then I want to look into ADR, but then I may have facet injuries that will void the opportunity.

I am not working, and the retiree benefits dropped us from healthcare, which means I have to buy an HMO. I’ve applied for disability due to scapula/arm weakness.

I need a new MRI and I need to explain to them about the shifting facet joint, as I think that’s the problem compressing the nerve when I use my left arm and keeping the muscles atrophic.

I also wonder if doctors just don’t want to work with someone who has had a prior surgery. On a side note, I also damaged the spinious ligments, so I’m glad to see a post on stem cell options.

Thanks for reading, it has not be a fun journey. Any advice welcome, as I have started my very modified lifestyle.

[Harrison]

Given your clinical history, it may be wise to get consults with some of (more) experienced surgeons in this country, and perhaps overseas. If it were me, I would set up an appointment with Dr. Scott Blumenthal at Texas Back. Call his admin, Nancy McCord. In advance of your appt., get your imaging studies to her. She will give you some guidance.

[Kunkelba]

Thanks harrison. I just had an x-ray last week because I just feel things were not on the up and up but they were earlier this year. And now some very new symptoms on my left leg, as I'm going to be working on getting an new MRI. Unfortunately my halfway decent insurance expires at the end of the year and I have a feeling Texas back Institute won't take my new hmo insurance although I understand I can go through an exception process and they'll treat my plan like a PPO. Also, Started reading about the German doctor.