Neck Problems

[Bluebonnet08]

Hello- I had a question about getting evaluated for neck issues.  The range of motion is severely restricted in my neck and I have a constant low grade pain in the upper part of my neck.  The pain sometimes causes headaches and it refers down the back to cause fairly severe back pain.  I had some x-rays done by a chiropractor and he said I had a misalignment of my L1&L2.  Someone had mentioned something about cervical instability.

 I really want to get a more complete evaluation, but I am not sure what the next steps would be.  Would I need to get an MRI, upright MRI, flexion extension?  I am just not familiar with the proper tests and then I am not sure who would evaluate them.  I was evaluated for EDS last year, the doctor said I did not meet the criteria, but may have joint hyper mobility syndrome.  I am not sure if this is causing the terrible pain, but I feel like it may be making the POTS worse.  Thank you so much for any insight!

[Guest KiminOrlando]

Hi Bluebonnet. I'm sorry you are going through this. I'm in a similar situation, so let me tell you my experience. 

Yes, you need an upright MRI, flexion extension like you mentioned. Then take that to both a neurologist and a neurosurgeon. See if you get the same answer. I didn't. My supine MRI did not show any instability. The upright MRI results shocked me.

I'm glad I simply insisted on pursuing it, I just wish I hadn't waited 10 years between MRIs. I had mentioned it in between, but was told that the first opinion with the flat MRI was sufficient. The pain and escalating symptoms just wouldn't let me accept that answer.

You are your own best advocate.

Good luck. 

Kim 

[Bluebonnet08]

Thank you so much for your reply.  Do you have a recommendation for where to get the testing done?  Do you mind sharing what your results were?  Were you able to get some kind of treatment?  I am just really confused about the neck issues.  I can't seem to get medical advice on where to turn next.  I've been in pain now for almost 8 years.  

[Guest KiminOrlando]

Hi Bluebonnet. Read the Chiari and POTS topic. It should be close. I just updated it.

See if your doctor will write the script for the MRI and search for the upright MRI center nearest you. I was prepared to drive a couple hours to find one, but was lucky that I live in a big enough city to have one locally.

Finding someone to write the script was the big hurdle for me.

I'm going to be posting more stuff, so check it out. EDS may or may not be in the picture for me.

Do you have any other symptoms besides POTS, like gastro or adrenal? 

 

[Bluebonnet08]

Thanks, I will check out the other posts.   I have terrible/debilitating fatigue issues, I am not sure where they are stemming from, along with fairly severe POTS, neck & back pain, and sleep disturbance.  I also have some depression, associated with my cycle.  I have been trying to get the root of my problems for a long time now.  I want to make sure I am being comprehensive and getting the proper testing.  It was suspected that I might have EDS, but I was evaluated and found that I did not have it.  The doctor thought I might have joint hypermobility syndrome (related to EDS, but milder).  

[Debbie Rose]

Good luck in your search. I go tomorrow to a neurologist for my headache evaluation and am hoping he has knowledge of CCI and CHiari malformation and the correct kind of MRI to evaluate it.  I have a hard time with new doctors since all these years trying to get my diagnosis and all the doctors who said it was all in my head....but my headaches are getting worse and more frequent so I have to try.

Debbie

[DizzyGirls]

Hi Bluebonnet08, just because one doctor said you didn't have EDS doesn't mean they were right.  My daughter was told she had Benign Joint Hypermobility Syndrome when she was 5.  Years later at 19, she was diagnosed with EDS.  She's 21 now and in rehab for cervical fusion of C3 to T4.  Rods, screws, hers and cadaver bone, anterior and posterior.  She had EDS all along.  If you think you have EDS, you probably do.  See an EDS savvy neurosurgeon, sounds like you have cranio or just cervical instability.  Good luck to you!