My experience with diagnostic tests

Upright MRI in flexion, extension, rotation and lateral bending

My Upright MRI was done in Munich, Germany, and I found it quite pleasant. The tests were performed on two different days: one for the flexion and extension images, and then the lateral bending and rotation of the cranio-cervical junction on the second day. During the whole examination, I was sitting between two magnetic plates, my head was passively moved in all directions as far as I could, and then fixed in that position so I couldn’t move. I had to hold my position for a couple of minutes, which was painful and exhausting. Overall, the whole procedure took approximately 30 minutes on each day. In the end, I got a very good letter with all the results and the doctor explained personally to me what he saw on my images. They really tried to make me feel as comfortable as I could in this situation.

A second Upright MRI was done in the USA four years later. This time we did only do flexion and extension, but the procedure was the same.

X-ray in flexion and extension with the help of the doctor

My functional x-rays were taken with the help of a doctor. He was pushing my head as far as I let him forward and backward. It was not only very painful, but also led to a huge worsening of my symptoms for a long time. However, I would never have moved my head so far without the help of the doctor. Because of the severe muscle spasms, we wouldn’t have seen anything on the images without the doctor bending my head. This examination technique is not offered very often, because the doctor has to expose himself to radiation, too. In the end, this test was very helpful for me.

CT scan in flexion and rotation

My CT scan was performed in the US and very simple, quick and less painful than I had expected. They put me in a supine position on the examination table and I had to rotate my head to the right and left side as far as I could. Only for a couple of seconds I had to hold each position until the images were taken. After the rotational views, I had to bend my head forward, and they put a pillow under my head to support me in that position. Again, after a couple of seconds, the CT was finished. It took a maximum of 5 minutes to complete the whole test.


My otoneurological examination was scheduled on two different days. All the areas (nerve connections) between the eyes and the brain, and the ears and the brain were tested. The tests were relatively harmless in general – there were various hearing tests, eye tests, neurological examinations and a brain mapping – however, not very pleasant was: sitting on a chair which quickly and rapidly moved and then stopped abruptly. The results were surprising and helpful so that I would do it again at any time. The examination brought some real results, which, again, were ignored by most of the doctors.


Neurovegetative diagnostics

In the course of suspected dysautonomia due to Ehlers-Danlos syndrome, I went to a neurological clinic for neurovegetative testing. A full day with examinations of my autonomic nervous system was planned. The tests were exhausting but not painful at all.

First, a tilt table test was carried out. With the help of the tilt test various forms of dysautonomia can be distinguished. During the test, resting and standing blood labs were drawn. In my case, I was resting on the tilt table for about 30 minutes before I was brought to an upright position for around 1 h. During the whole time my blood pressure and pulse were monitored.

While lying on the tilt table, there were a couple of other tests, like the Schirmer test, in which a small piece of absorbent paper was placed under my lower eyelid. It shows if the body produces enough tear fluid.

Some breathing tests were conducted, in which I had to breath rhythmically and blow into a tube against resistance. All of those tests are used to assess the type of dysautonomia.

After the tilt table, some neurophysiological tests were carried out; for example, nerve conduction was measured and the sweat secretion of my extremities was tested.

Then the usual clinical tests were done, like pinprick sensitivity and hot and cold tests.

Overall I had my first positive experience with neurologists.


Sleep lab

I chose an outpatient lab, because I generally sleep rather poorly in a hospital.

The examination took three nights and was completely painless. Electrodes were attached to my head, face and legs; there was a tube in my nose, a pulse oximeter on one of my fingers and a belt with some devices around my chest. Then I had to sleep. In the morning a nurse took off all the devices or did some daytime sleepiness tests.

Overall my stay in that sleep lab was very pleasant.


Genetic test for drug metabolism

My drug metabolism test was performed in the US. I simply ordered my test kit, did some mouth swabs, and a few weeks later I got my test results. Painless and easy, but pretty expensive.


Diffusion tensor imaging (DTI)

DTI currently almost exclusively takes place in research settings, which is why I contacted a large number of scientists all over Germany in order to ask for a DTI of the brain stem and the spinal cord of my cervical spine. After a couple of days full of e-mails and phone calls, a research group offered to perform it – of course with the knowledge that DTI of the spinal cord is very experimental at this point.

Imaging of the brain, on the other hand, is already much more standardized. A few weeks later the actual test took place. And to my surprise, the machine they used was a normal 3 T MRI. The only difference I found in relation to a normal static MRI was the duration of the examination, which took about three hours in total. Similar to normal MRI, the examination is completely painless and without exposure to radiation, which is why I have not hesitated to accept this incredible opportunity.

Two physicists were responsible for me and the imaging, and both were very concerned about my well-being all the time. After each sequence they asked me if I was ok, and finally, after three hours, I was allowed to leave. But for the scientists, the fun just started. Diffusion tensor images are created in a very complex process after the actual MRI images were taken.

Two months later, I had the result: A change in the brain stem region, which was not visible on normal MR pictures. For me this investigation has paid off. Not only because I like to be part of research and development, but also because I have again found a piece of the puzzle that explains my condition.

More information:

Diffusion Tensor Imaging