Surgery Follow Up and Dysautonomia

After I went home from my Chiari decompression surgery I spent A LOT of time just sleeping and healing. I was in a significant amount of pain and needed to take pain medication and muscle relaxers on a regular basis to maintain any level of comfort. I had my two-week follow up just after the New Year and at this point everything looked great. My stitches were dissolvable so he just checked the incision and made did a general check up. Obviously at this point we had no idea what symptoms had gotten better from the surgery and what had not. I scheduled an appointment to check up in mid-March. On this date in March I also had 2 MRI’s scheduled. One was to check the surgical site and one was of my lower back. The lower back MRI was looking for a tethered spinal cord. This is a condition in which the bottom of the spinal cord adheres to the spinal column. This condition can occur with Chiari and due to my lower back pain and intestinal issues we wanted to make sure that I did not have this.

            During early February I went to see what is called an electro-physiology cardiologist. This is a doctor that specializes in the rhythm of the heart. I had been having symptoms that include fast heart rate upon standing, low blood pressure, dizziness upon standing, and even occasionally fainting upon standing for a number of years. These symptoms were always just attributed to the Chiari, but as I researched it more these were a new set of symptoms associated with a different condition. This doctor was not very helpful and I did not care for him very much, but at least he provided me with the validity that this was a serious condition. He started me on a medication and said no testing was necessary. He diagnosed me has having a condition called autonomic dysfunction (also called dysautonmia). This is when the autonomic nervous system does not function properly for some reason. This means that all functions that the autonomic nervous system controls, functions that you are not even aware of, such as heart rate, digestion, respiratory rate, salivation, perspiration, and pupillary dilation are all affected. With dysautonomia all of these things are not monitored the way that they should be. Multiple things can cause this condition, but as of now we are still trying to figure out why I have this. We are not certain which type of dysautonomia I have as I am still undergoing testing for this condition (more on that later). So at this point I started the medication and decided we would just see how it went.

            Well that medication turned out to help a little bit, but not significantly. It was a medication called Midodrine that constricts the blood vessels in your legs so that when you stand up your blood pressure doesn’t drop so much. I started on 2.5 mg every four hours and then went up to 5 mg every four hours and finally I went up to 10 mg every four hours which is what I am currently. At this dose (which is the highest I can go on this medication) I am less likely to get dizzy standing up, but it does not help in the mornings and does nothing to address my racing heart rate. It was agreed at this point that we needed to add another medication to the mix. We decided to add Fludrocortisone (also called Florinef). This medication increases sodium levels and thus blood volume. This helps to maintain blood pressure upon standing up. I started this medication on 0.1 mg twice a day for five days and then went down to once a day after that.

            Right after I began the Fludrocortisone I went to the follow up appointment with my neurosurgeon. All was going well so far. I had weaned myself off of almost all pain medications and was using muscle relaxers only infrequently. I had the two MRI’s in the morning and then the appointment in the afternoon. The MRI’s went fine and we ended up getting into the appointment early. First we looked at the two MRI films and the surgery site looked great! There were no worries there and the surgeon felt as if he had created plenty of room for the fluid to begin flow better around my cerebral tonsils. The lower back MRI also came back clear. This was great, but now we had no answer for as to why I had the lower back pain! I now have doubts as to the tethered spinal cord, but I will get to that later as well! The only issue we could see was that I had an abscess on my incision and we were not sure why. The surgeon decided it was probably that I was rejecting an internal stich (I had three layers of stiches: one in the skin, one in the muscles, and one in the covering over the brain called the dura). Well we left that visit on a positive note and he said I did not have to see him at all any more! He said I would continue healing and that he felt he had done all he could do for me.

            Sadly this was not the end of my journey. I will write more in a separate post though since this is already long!