Very Rare Neurological tumor, then very rare muscle tear

[Noanswersjustveryrare]

I am currently a patient of a Dr that worked out of the Mayo clinic, and had a EMG done and received some good news. My nerves are all looking good and great regeneration of the long thoracic.But Ins. denied another MRI most likely do to the surgical hardware from the fusion.
Due to me having major neck spinal surgery to remove a mass ganglioneuroma from my C7 vertebra. The C7 had to be cut and fully fused. I made it a year 120+ visits to physical therapy and was 85% there, then I tore my upper trapiezeous seems to be away from my spine have no clue how I did it due to numbness from where my incision was 10 inches on the back of my neck. Not many surgical options, like scapular fusion or tendon transfer at 32(not till no other choice). An option my Dr spoke about was going to Minnesota and to the Mayo. I guess again I am a very rare case, even the ganglioneuroma mass was extremely rare where it formed. Like 1 in 20 million or more  :thumbsdwn:  
Lucky me  :roll:
Dustin
p.s.
if anyone knows of any options or ideas I am having bad luck please!! . I have had no luck and am in rough shape with pain in my repaired neck.

[Noanswersjustveryrare]

Thank you very much! I do plan on traveling to the Mayo Clinic in Minnesota due to they have the best of the best minds and technology no one else has. I have been on the mayos website and the closest for me is Minnesota but they specialize in the region. Also before that I need my neurosurgeon and my orthopedic to sit down and talk. So the orthopedist can get a better idea if there is bone to mend to.
It has just been a bad almost 3 straight years of something major. The tumor wasnt fount for 9 months. Due to it was giving me all signs of a rotator cuff tear, winging of the scapular, numbness,weakness, etc. But had so many tests over that time and different treatments, cort/steriod shots/ nerve blockers.Until the last time I saw that orthopedist I went across the hall to my family Drs and both were there. They saw the agony I was in and noticed that when I was turning to each of them I wasnt moving my neck my shoulders followed. So sent me directly to a friend and one of the best Neurologists in the country Dr Gregory Bennett. He saw me that day and looked at me and couldnt believe his eyes. My arm was hanging so that my palm was out and just hanging there. He then just tells me to put my hand against the wall and touched it and I fell to the ground in pain. He then says I have nerve damage ordered an immead. EMG and MRI and found the tumor. But he was extremely mad at the other Dr that was treating me for 8 to 9 months before that didnt after all the tests just say this may not be in my area you should maybe go another route. Mainly cause of the length of time I was in REAL pain I lost 65lbs from the pain alone. Now when Drs ask me what my pain levels are I now know what a 10 is!! So I had the surgery to remove the mass, it was larger than the MRI had shown so had to open me up quite a bit and cut the C7 down to spine and part C6. The amazing part is he was able to split my nerve so I would have motor function, just numbness and or pain with hypersensitivity. So really I am in great shape considering I could have easily paralyzed or the tumor could have been cancerous. So I always try to stay positive and stick to my therapy. All I eally can do for now it seems.
Thank you again
Dustin

[S. Kaul, MD]

Hi again!

Well it does sound like a significant deformity, though it becomes difficult to imagine how easy or difficult would a reconstruction surgery be. Keeping your previous surgery into account, this might be relatively difficult. In the current situation one might consider getting a second opinion from another University based orthopedic setting, before deciding to give up on it.

Take care!

[Noanswersjustveryrare]

It seems the upper trapezius is gone the Ortho specialists from University Orthopedics in Buffalo NY and the drs saying not much can do. Due to no clear picture in an MRI with the metal in my neck. They fear that there is no bone to attach the muscle back to. All I have is a ball/lump that sits a few inches out from my neck. Looking at me my ear on the right side compared  the difference from left and, the shoulder starts to come out of the neck 4 inches lower. Just pulling to the right, and I had my major neck surgery May 1 of 2010. I had made it so far from having almost complete recovery and Bag. This happens and no one can figure out a way to help, without taking major risks at permanent damage. That is where the major pain is coming from is the over use of all the other head supporting muscles and bad spasms. I am on meds Neurontin, Baclefen, hydrocondone 10/500/ 5x a day but am  way down from where I was after major nerve and neck surgery. But my pain level has gone up quite a bit, and will become real BAD when it gets cold. I cant move from the spasms with the metal on my brachial plexus gets cold and I tense up.

[S. Kaul, MD]

Hey Dustin!

Well yes, a trapezius tear isn’t that common and without the relevant clinical details and probably an evaluation, it would be difficult to comment on the situation. While for mild to moderate tears conservative management is preferred; surgical options may need to be considered for severer ones. If your doctor feels that this may not respond well to conservative measures, the best I can suggest is to get this evaluated by an orthopedician preferably at a teaching/ university hospital. Meanwhile it is advised to limit movements around the neck. OTC NSAIDS may be helpful for a symptomatic relief as well.
Hope this helps.

Take care!