#2 The diagnosis

We had an appointment with Dr. Gilete, the best neurosurgeon in the world.

Unfortunately also a fairly busy doctor, so we were called in at around 7:30 pm. He immediately began to explain all the risks of the surgery, even before he started scattering diagnoses. I was told that I have AAI and CCI , my fourth vertebra is also very wobbly and the intervertebral disc at C7 is completely crooked. In addition, my blood vessels and nerves are very crazy. Fortunately, I was not the very first he had seen with this, but he did call me exceptional.  So I’m not crazy! My neck needs to be secured from skull base to T1.

After this he wanted to do some more physical examination. I had to try to walk to the examination couch and when I sat there he took off my collar. Then I had to lift my legs alternately, but the right side was of course tremendously shaking after last year’s paralysis. After this he jerked my head up, I thought I was being beheaded! Mom said it was at least 10 cm higher than the neck collar. He asked me to lift my right leg again, and it just worked! No shaking, nothing. Proof that the operation will work! Cool huh? We also tried to take some steps with my head lifted, but unfortunately with my 1.78 m I’m too tall for Dr Gilete to keep my head up. After some more questions and testing of reflexes, he thinks there is a lot more wrong with me. He suspects a “tethered cord”, scoliosis, MCAS and POTS. He wants to investigate all this a few days before the neck fusion. Especially the scoliosis and tethered cord are extremely important to know before surgery. Otherwise, for example, they will lock my head completely crooked because they follow the spine. Or the tension on the tethered cord becomes to big because of the neck fusion that I will even get more problems. All in all it was quite a blow. Finally, a doctor who believes me, and then he keeps adding diagnoses.But hey, he can help me! And if I trust anyone, it is him.

We’re going for it!