Back to New York

So like I said in my last blog post I've got some big news regarding my neurosurgical care. We are headed back to The Chiari Institute in New York for a tethered spinal cord release surgery. This is why I had to see a urologist and get those tests done.

The urologist did ultrasounds of my bladder and kidneys and a urine test. All of those came back completely normal, which is great! He then did a urodynamics test which studies how well your bladder fills and empties. He claimed this test was normal, but my neurosurgeon and I do not agree. They fill up  your bladder and the amount he put in my bladder was normal, but the output was nearly twice what went in. Obviously this is going to screw with the results of tests, but he didn't want to discuss that... We decided that even though these results are normal on paper that we are going to proceed with the surgery.

A tethered spinal cord is a condition in which the spinal cord is attached to the spinal column with a piece of fatty connective tissue at the bottom of the spine. The spinal cord is supposed to be free floating and able to move up and down freely. This piece of fatty tissue is stretched out over time to the point that it cannot be seen on an MRI. For this reason, it is called occult (or hidden) tethered spinal cord. This causes a progression of symptoms such as low back pain, pain in the legs, feet, and pelvis, decreased sensation in those areas, and urinary and/or bowel issues. Since these symptoms are progressive and irreversible it is highly recommended that surgery be done sooner rather than later.

This surgery will be slightly less lengthy than my previous neurosurgeries. It will take about 3-4 hours hopefully. They will open up my spinal column and cut any filums that are attached to the spinal cord. It is really that straightforward and unless they run into any concerns then it is a relatively low risk surgery. The recovery is also fairly quick. I will be in the hospital for 3-4 days. I have to lay completely flat because the biggest concern is that I will develop a spinal leak.

The surgery is scheduled right now for June 3rd and my pre-op appointment is May 29th. This might change though due to scheduling reasons, so that we do not need to stay in NY for so long. I am hoping that we can do something so that they pre-op appointment and the surgery itself are closer together.