Thanks Jo*mar, I will look into TOS also. But right now I have blood work to evaluate this week, discussing b12 shots with my doc (tested low in 2006), many things to do. I'll discuss your suggestions at some point probably with an orthopaedic and/or physio, but those people are lower on my priority list at the moment. In 2 weeks i have a visit in the university clinic here for emg and what not, I'll see what they want to test. I think I will insist my problems are limited to my upper body, who they are, so that's what they should examine thoroughly, if possible. I thought I was given a thorough MRI back in 2006, but maybe the doctors managed to do it wrong? I've heard actors so times do manage to get things wrong :-(

Hi Chloe,

I've found a place which does positional MRI (if that's what you mean) here in Greece. How did they do it for you? Did you just stand without moving, or did you move? "extension and flexion" sounds like actively moving.

Did CT scan show anything in your case?

Seen the ortopedist today. I brought my blood test results, but forgot to bring my latest MRI .. I must be tired. Anyway, he wants to see that MRI, because "I am not sure my colleagues know how to read an MRI". Makes you trust the doctors even more than I do already, ugh. And "I dont recommend standing MRI because it's too much, it wouldn't show something which doesn't show up on a normal MRI. It doesnt make sense for the upper spine anyway." Ugh? Too much? But his both hands are working, mines are not...

aneczka,

There is an article written by Dr. Andrew Holman of Pacific Rheumatology Associates...the article was written in 2008 however when I corresponded with him, he stated the protocol for how the MRI is done is still valid as what was done then.

When you do you search, type in "Andrew Holman and positional cord compression" and numerous sites will come up...click on the one titled " 2008 J Pain PC3 article-Pacific Rheuatology Associates Inc. PS....", this explains the information on his research of treating actually Fibromyalgia Patients and how it was discovered that MRI's done showed compression of the spinal cord done on flexion & extension views not seen on neutral position views.....these results were calculated based on a measurement that would be done by radiologist when they review those images. Table 1 will show the protocol that should be followed by.

When I had mine done I was laying down and there were cushion & pillows placed under my upper back to raise that area so my neck & head would bend back for the extension images and pillows placed so I was able to push my head to my chest comfortably for the flexion images. My report results did not show the "measurements" done by the radiologist so not sure how the accuracy of the findings relates other than "near abutment" sounds like a possible problem to me!

Have started seeing a Doctor close to where I live here in the U.S. as Seattle, Wasghington is not close to where I live. He is also a Rheuamtologist as well as an Internist & Pain Managment Doctor. Just had an EMG done of my legs and the Neurologist, in the same office, saw no pheripheral neuroapthy or muscle fiber disorder....I feel he needs to see my MRI images & report because I really think that there is something causing my symptoms that is related to possible cervical spinal compression......when I brought that up to him he did not seem to be really interested..... just might have to go through the Rheumy, he is a bit more receptive to listening to my concerns.

Hope this info helps for your situation

chloecasey

Thanks Chloe, that sounds interesting. The orthopedist I've seen today was very skeptical and told me whatever there is, will show in a good, standard MRI (which sounds counterintuitive to me. I've come to mistrust doctors, unfortunately). He just believes in his 3 Tesla machines. (My scan back in January was done probably with 1.5 Tesla). Anyway, I will call that center, which does those unconventional MRI's and ask them how they do it, and will have your description in mind. Thank you.
And if that somewhat arrogant MD I've seen today will not prescribe the positional MRI, I should get it from my genuinely sympathetic GP. I will need a doctor's letter to have it done, I believe.

I actually had mine ordered by my GP also.....after reading the report to me initially he said it was over his head and referred me to a neurosurgeon who basically said "not anything that could or should be addressed surgically and also said can't give you a new spine !!!, yea he was arrogant too!!."

Scary when they can't or won't think outside the box !! Patients have been known to be correct about their gut instincts....keep on pursuing yours !!

Best to you chloecasey

Dr Holman has put together a website on that topic. Looks very interesting. I've understood what they meant with "flexion and extension" looking at the pictures. All they need is a pillow and a normal MRI machine, plus something extraordinary: a good will and a bit of intelligence. I will see if I can find that here.

Guess what, I'm sending that link to both my GP and that arrogant MD. Here it is http://www.positionalcordcompression.com/

There is also another one, which I'll send them both also: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3587072/

It's amazing how the doctors can't solve your problem, yet think high about themselves. If you can't solve my problem, you are just not good enough of a doctor, or you need to learn more, end of story. We should apply the same measure we do apply to call center workers: if you can't fix my problem, do a thorough search and educate yourself (I worked in various call centers for a few years, and the attitude "I can't help you, but I still know it all" was simply out of question).

Glad you were able to find that other link, as it is more current.....and thats great that you are taking the "bull by the horns", if you are not getting the answers from the ones that are supposed to be trained & educated & willing to "think outside the box" then yes you need to be our own advocate!

If you take the time to read any of my past posts, you can get the idea that I have dealt with more than 1 arrogant Doc who just wanted to pass me by....prior to 4 years ago or so I never had issues with my health.....after the 3 surgeries in 2011 it has been a struggle to be positive however now I am trying very hard to go "with the program" and follow this Docs advice.

Look forward to seeing if the info I relayed to you will be something your docs will be willing to investigate and if it may help in your diagnoses.

chloecaey

I will have that flexion&extension MRI done; I've also got a referral to a hand specialist, because the spine doctor doesn't think there is anything wrong at all with my spine, judging by the normal MRI, there is not a hint of anything abnormal. The hand specialist will most probably want to see my EMG also.

Has anyone here found any real help from a hand specialist? What can they do?

Hi,

I'm translating my diagnostic results from 2006 (as they are in German), and wonder if I could post them here, or send someone? I would love mrsD to have a look on them. Also, they have found a "Proportional disturbance of the blood-liquor-barrier", this is translated literally from German. I don't know if that's the same as blood-brain-barrier. And I don't know if that's significant. Can anyone help with that?