My experience with diagnostic tests

Upright MRI in flexion, extension, rotation and lateral bending

My Upright MRI was done in Munich and I found it quite pleasant. The tests were done on 2 different days. On day one the flexion and extension images were taken and then on day 2 the lateral bending and rotation of the cranio-cervical junction was done. During the whole examination I was sitting between two magnetic discs and the head is moved as far as you can in all directions. Then your head is fixed in that position so you cannot move. It takes a couple minutes in every position which is painful and exhausting. The whole procedure took approximately 30 minutes on each day. I got a very good letter about the results and the doctor explained personally to me what he saw on my images. Overall they try to make you feel as comfortable as you can in this situation.

A second Upright MRI was done for me in the USA. This time we did only do flexion and extension views. 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 maximum forwards and maximum backwards. 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 protective tension of my muscle 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 a radiation risk too. In the end this test was very helpful to me.

CT scan in Flexion and Rotation

My CT scan was done in the USA and was very simple, quick and less painful than I had expected. They put you in a supine position on the examination table and you have to rotate your head to the right and left side as far as you can. It is only a couple of seconds in each position until the images are taken. After the rotational views you have to bend your head forward as much as you can and they will put a pillow under your head to support that position. Again after a couple of seconds the CT is done. The whole CT takes probably a maximum of 5 minutes.


My otoneurological examination took me two days. We have tested all the areas between the eyes and the brain, and the ears and the brain. The tests were relatively harmless in general. There have been various hearing tests, eye tests and neurological examinations and a brain mapping. What was not very pleasant was: sitting on a chair that has jerkily moved in both directions and then stopped abruptly again. The results were, however, very surprising and helpful so that I would do it again at any time. The examination brought some real results but again these results 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 blood labs and standing blood was taken. 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 is placed under the 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 were 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 had chosen an outpatient lab because I generally sleep rather poor in a hospital.

The examination took 3 nights and is completely painless. Electrodes are attached to the head, face and legs, there is a tube in your nose, a pulse oximeter on your finger and a belt with some boxes around your chest. Then one must sleep. In the morning a nurse takes off all the devices or might do some daytime sleepiness tests.

Overall my stay was very pleasant in that sleep lab.


Genetic test for drug metabolism

My drug metabolism tests were performed in the US. You simply order your test kit, do some mouth swabs and a few weeks later you get the test results. Painless and easy but pretty expensive.


Diffusion Tensor Imaging

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 Diffusion Tensor images 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 carry it out. Of course, me knowing, 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 3 h 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. After 3 h I was allowed to leave, but for the scientists, the fun just started. Diffusion tensor images are practically created in a very complex process after the actual MRI images took place.

2 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