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Every Dr I see I am rare so they bring in others to try and figure out no luck yet

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 ~X(
Lucky me :>
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.


  • Dude, that sucks big time. Unfortunately I don't have an option but i do hope someone does soon. Sorry your in pain
  • I'm wondering how they know you have a torn trap without an MRI...but if you had hardware put in at c7 then an MRI probably wouldn't be possible anyway.

    What are they having you do or not do now? Muscle and tendons will heal on their own if given time. How low does your incision scar go? I'm wondering if what you are feeling is damage from your surgery or even just some related pain.

    I say this because I had surgery on T1/2 with a 6-7 inch incision that runs into my upper back. I had alot of fluid buildup and upper back pain for close to a year after surgery. The PTs were very surprised, but surgery in this area is rare so they don't see it often. I'm just wondering if what you are experiencing is surprising people mostly because they don't see if often.
  • HI Dustin,

    First let me say welcome to spine-health. Have a look around and you find others here whom have had fusion surgeries including myself. While the reasons for surgery are different, it is still a fusion surgery. You need to be checking your insurance as to why they are refusing your MRI, the hardware should have no bearing on it. There are many of us with hardware and still under go MRI's. While my fusion is from c3-c7 and have hardware I have never had a issue with a MRI. Like you I have the massive incision down the back of my neck.

    You should be able to appeal your your mri, and also be afforded copies of the decision and why it was made. More than likely your doctor didn't put the right wording as to why a MRI is needed and it is outside of the criteria for approving MRI's. Many insurance companies have a protocol they use to approve any medical testing and you are also allowed the criteria as to why. Don't give up on the MRI, as sometimes it could be a matter of they need more information to qualify. Yes they should be able to see everything, but they will take each test on a individual basis and the information that was submitted with that test.

    Just thought I would stop by and welcome you to spine-health. Good luck on getting the MRI and let us know how you get along.
  • dilaurodilauro ConnecticutPosts: 9,832
    The fact that you have hardware should not be any reason for the Insurance company to deny a MRI. I have metal and I have had plenty of MRI's

    When I hear that the insurance company denied a MRI request, just tells me that the Doctor did not provide enough justification to have one done.

    It is really up to the doctor to provide the proper justification. When a doctor knows that a MRI is needed they will provide whatever is needed to get the approvals.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • I just had another cervical mri with and with out contrast and I also have hardware. The techs said it was not going to be a problem. I had one last fall as well. Again no problem.

  • I am talking to my insurance to see why was denied. Between my physical therapist and Drs can see the trap is gone due to the lump on my shoulder where the muscle is gathered when I try to shrug up. Also there is such a large differences, almost deformity looking on my right side that and the first mRI showed the trap torn but couldnt see near the spine due to a blur from the metal. So now my Dr wants to get contrast, but more than likely it is due to me having 6 MRIs in 18 months and CT scans etc. I have been very expensive. Also my incision is 10 inches and on that right side of the back of my neck and may very well be partially from the surgery. But whet sucks is I was 85% recovered from the spinal surgery and my shoulder was back up, no more winging of the scapular was feeling good. Then suddenly this and im not sure how or when I did it. If I was pushing too hard on therapy? Which is a good possibility cause I was told many times to take it slow, cause I would see so much improvement and motivate me. As of now my shoulder looks bad I do have a pic of it on my facebook dusty kibbs or at http://ehealthforum.com/health/user_profile_409891.html
    Thank you all again for you responding and helps to read about others with problems after full fusion. Now its just sucha rare injury this time due to the size of the muscle and the strain it puts on the others.
    Dustin Kielbiewicz aka (dusty kibbs) facebook
  • dilaurodilauro ConnecticutPosts: 9,832
    at how many others have problems that are somewhat similar. There are really on a few rare cases of spinal related problems.

    Disc problems can lead to muscle problems which can lead to tendon/ligament problems, which can lead to disc problems. You see, it can become a vicious cycle.

    During the worst onset of my thoracic herinations, my back almost look un-natural. One shoulder was so far up that it looked fake. My collar bone and second vertebrate would pop out of position and not only was there a visible lump by one shoulder was up more than 3 inches from the other one. My deep rhomboid muscle had become rigid to the point it was basically like a flat piece of oak.

    So it took several different approaches before I started to get positive results.

    Dont despair, just continue working with your doctors to find an action plan to help with relief.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • thank you very much, and i still plan to keep working as hard as I can building my scapular region to better support my shoulder. It also sits at least 3 to 4 inches lower than the other and looks like my collar bone is coming out of 2 completely different areas. From ear to where my collar bone starts on the good side is a little under 4 inches on my right the bad side over 7 inches it is quite noticeable from front and back. Plus my shoulder socket is pulling forward so even looks more dramatic. But I am going to appeal the MRI and there is one good muscle and soft tissue Dr that does ultrasounds of these areas and gonna see if that shows us anything to work with to repair the trap. My Dr is concerned due to where my neck surgery was there may not be solid bone to attach. They are also getting together to discuss due to they work out of the same hospital and my Neurologist referred me to this orthopedic surgeon. So Im hoping something good will come in the next couple weeks. If not ill just keep plugging away at rehabbing the scapular region and the other trap and back muscles.
    Thank you again everyone just nice to talk to some people that are in similar situations or have had. Just getting to be that time of year here in Buffalo NY where the pain really starts
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