I have been super busy with appointments! First off, I have officially been discharged from home nursing! I can access my port and take care of all of the issues that may come up independently as can my husband. This is great news because it is one less appointment a week for me, but it is sad because I love my home health nurse :( It will be sad not to see her anymore, but it was a necessary step forward and it is nice to know that between my husband and I we can handle my port and everything that goes with it.
I had an appointment with a urologist last week. My neurosurgeon out in New York wanted me to see him to get some testing done called urodynamics testing. This test will help to determine if I have a nuerogenic bladder by seeing how much my bladder holds, how well the muscles work when I void, and how much sensation I have in my bladder. A nuerogenic bladder is simply a condition in which a person has nerve damage that is causing damage to their bladder. We are nearly certain that I have this and that this test will come back positive. What this test will tell us, along with other symptoms like back pain, leg and foot pain, and leg weakness, is that I have a tethered spinal cord. This condition occurs when a fatty piece of connective tissue binds the end of the spinal cord in the lower back, which is supposed to be free floating, to the bony part of the spinal column. We are nearly certain that I have this condition and the urodynamics testing will be the final step to determine this for certain because the tethered spinal cord cannot be seen on an MRI, which is refereed to as occult tethered cord (OTC). If this is the case as we suspect then we will be flying back to New York early this summer for another major neurosurgery. I have an ultrasound of my kidneys and bladder tomorrow to rule out any structural damage, which is unlikely, and then the urodynamics test will be done next Thursday. I am trying to get a hold of my neurosurgeons office to schedule the surgery, but haven't been able to do so yet.
Today I saw an endocrinologist for the first time. He was incredibly nice and thorough! During my pre-surgical testing in December my primary physician ordered a thyroid test to determine if my thyroid levels were off. Well we found that they were slightly elevated (meaning that my thyroid is underactive) and she requested that I see an endocrinologist. Between the major spinal surgery and 2 changes of insurance I was not able to do this until today. He agreed that yes I need to be started on a thyroid medication, but wants to do some further testing as well. He is going to retest my thyroid since it has been a few months, test my adrenal glands, and test my vitamin B-12. All of these things may be affecting my overall health and are things that are commonly wrong with people with the underlying conditions I have (Chiari 1, EDS, and POTS). I will get these blood tests done tomorrow at 8 in the morning because the test for the adrenal glands need to be done in the early morning. I then need to go get an ultrasound of my thyroid gland (in the neck) because he can feel a nodule on the right side of my thyroid. This could mean a wide variety of things, so we need to get a closer look at it and determine its exact location, size, and what it is made of. After all of these tests are done he will call me back as to what the next steps will be, but at the very least I will start on a synthetic thyroid hormone called synthroid in order to lower my thyroid hormone. I will update again after I talk to him.
My appointment with rheumatology for my EDS was supposed to be last Tuesday, but they had to cancel it and could not reschedule it until April 28th. They called today and said they had a cancellation so I am going in on Monday to meet with this doctor. It will be a busy couple of weeks, so I will try to update as soon as I get information. I will definitely update by the end of next week though!
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