Dissonance or Discovery?

Don't blink! The blooms only last a few short days.

Now that you've been brought up to speed on our past explorations of the neck issues, here is the latest on the new testing. So far I have had the thoracic MRI and the MRI in flexion and extension done. Both were completely clear. I will share some parts of email exchanges between myself and Dr. ANS regarding the results, what happened to me during the MRI in flexion and extension, and where we go from here.

First I had the thoracic MRI done with the following results:

Emily: The MRI films arrived late last week, and I have had a chance to review them. They look excellent, with no bulging discs at all, which is impressive, and no areas of stenosis or signs of disease. That doesn’t help us figure out what is causing nervous system irritability, but it does clarify things a bit further, emphasizing that the anatomy looks good and that you are not a candidate for surgery. 

Have I mentioned how much I love this tree?

After the thoracic MRI, most of our discussion has revolved around the neck MRI. Because there are only about nine facilities in the entire country that do seated MRI's in flexion and extension and none took my insurance, we opted to do an MRI lying down in flexion and extension. Here is Dr. ANS's review of the MRI in flexion and extension:

Emily: the MRI arrived late last week, and I had a chance to review it over the weekend. The quality of the film was quite good (often the motion of the positions of flexion and extension leads to blurring, but these images were crisp). The images show no compression of the cord when you are in positions of flexion and extension, and there is ample spinal fluid cushioning the spinal cord in both extremes of neck bending. The cord itself looks fine, and the discs are not bulging, so there just doesn’t seem to be a visible anatomic cause for the symptoms you get. This would suggest that the problems you get with neck movement are originating from the peripheral nerves (which we can’t see well on MRI), especially those emerging from the cervical spine area, rather than in the spinal cord or from spinal stenosis. So, as they might say on Sienfeld: “No neurosurgery for you!”

More!

I didn't go into the MRIs with any expectations of finding something because I've spent 14 years getting negative test results. Even without expectations, when these results came back I found myself confused, disappointed, and generally emotional. This was, as my friend said, a classic case of good news bad news. I don't want surgery. But I do want an answer, darnit! It's frustrating to have such an extreme reaction to the test itself and such major neck pain and not have any evidence of what might be causing it.

I'm pretty much a pro at MRIs and don't mind them, but knowing what flexing my neck backwards can do, I was anxious about this particular type of MRI. You are placed an open MRI. The first scan is done with your neck pressed forward (flexion) and the second scan is done with the neck pressed backwards (extension).  Each scan is about 15 minutes long.

Here is my description via email to Dr. ANS of what I felt like during the MRI:

In flexion: Mostly I just felt a pull from the lower cervical/upper thoracic area like a string through to the front of my chest (common complaint I've mentioned before) and some difficulty getting a full breath. I also had forceful heartbeats.

In extension: It was very difficult to get my neck as far back as they requested and the tech basically forced my neck into position. He commented on how clearly he could see I was in pain. It felt as if the vertebrae were smooshed (good word? ;)) and there wasn't room for them to bend that way. Sort of like an accordian. It was painful, but also just unpleasant to have that sensation that things were being forced and compressed. I did a lot of meditating during this part of the test! Gradually I started to sweat. Then have nausea. Then dizziness. The feelings resembled what had happened to me on the TTT (Tilt Table Test) or what I get when I am in ANS distress. I buzzed the tech to let him know, but we pushed through the last 4 minutes without me fainting.

Blooms.

To help me understand what these results might mean and where we should go from here, Dr. ANS wrote the following. (You can get a sense of why my file folder is so HUGE with all of our email exchanges over the years!)

The MRI results are indeed puzzling, given how much movement causes a symptom flare so consistently. One comment is that the MRI is still a relatively crude diagnostic instrument for whatever it is that you have, which is some kind of adverse tension in the spinal cord as a best guess, but not one associated with obvious anatomic defects. I am not sure how to work on the peripheral nerve aspect of the problem, since we don’t have that properly defined. It will be worthwhile to see the vascular surgeon about thoracic outlet syndrome to see if your presentation and symptoms (especially the excellent description below about how the different flexion and extension postures affected your symptoms) ring any bells for him (or her).

I don’t know what to think about the possible causes of this group of symptoms, but I still think an infectious origin is possible. It just is very puzzling, and I am not certain what we should do about it.

Anyway, let’s see what Dr. [Listener] and the thoracic surgeon think, and then put our heads together again.

:)

Last week, I had an appointment with my PCP, Dr. Listener, and we set up the next phase of the plan. I have an appointment with a neurologist in August for a full neurological exam and review of the MRIs. I've worked with this neurologist before regarding my abdominal migraines and he works well with Dr. Listener, so I feel he will take me seriously. There is also a four page letter in the medical system from Dr. ANS, which all of the doctors take very seriously!

Dr. Listener also knew a vascular surgeon who travels weekly from the main hospital for appointments at the clinic where I see Dr. Listener. Dr. Listener will talk to this surgeon about my case, show him Dr. ANS's letter, and get back to me as to whether this doctor or another surgeon is the best fit for me to be evaluated for thoracic outlet syndrome.

So far I'm not sure if we have more dissonance or more discovery! I'm trying to pace myself emotionally and physically through this process. Maybe we're gradually unraveling things, but it appears to be another complicated process. Most days I try to focus on the now, especially puppy preparation!

If you're still reading these oh-so-compelling updates, I thank you for hanging in there! I thank you not just for reading my blog, but for all that you do to continuously bless my life. If you think of it, send a little prayer up for the doctors who take such good care of me. 

Blessings,

Emily