I received a call this afternoon from my Vanderbilt neurologist, Dr. T. The first thing he asked was how I thought the Baclofen trial went. I told him, I didn’t see or feel any results. My walking didn’t improve at all and I felt no differently in regards to muscle spasms or any loosening of my muscles. He then told me that that’s basically the same report he got from the nurse practitioner who did the spinal tap injection of the Baclofen, the nurses and the physical therapists. He said that they observed that after it was first administered, I was actually a little worse, and after the 4 hour mark (when it’s supposed to be at its peak performance) I was only just a tiny bit better. There will be no Baclofen pump surgery. I could have told him that already! Haha.
He was baffled that it didn’t work at all. He said that usually the Baclofen helps tremendously, but in my case seemed to have no effect on me. He referred to me as a mystery. I told him, I’m a mystery to myself at this point! Being in a House, M.D. episode may sound fascinating and enthralling, but let me assure you in real life, it's not all that fun!
Dr. T. asked what I wanted to do next. He said that the next step that he could offer me was deep brain stimulation surgery and he asked if I was still interested. I asked him if it is a sure thing – will it allow me to walk unassisted. To this he said he didn’t know. He said that there is no blood test or any other type of test that can tell him without a shadow of a doubt that I have dystonia. He did say that deep brain stimulation does really work for dystonia. With that information and knowing that the Mayo Clinic diagnosed me with dystonia, I’ve decided to go ahead with the steps it takes to have deep brain stimulation. I gave him permission to meet once again with all the neurologists, neurosurgeons, physical therapists, neuropsychologists (or is it psychiatrist? maybe it’s both!) and other medical professionals to discuss my case once again with these new findings. If they all agree that DBS would be the best route for me, then I’d have to make a decision about whether I really want it or not. Dr. T. said I could decline surgery at any stage. That made me feel better. There are several stages to actually getting to the point of surgery, so I have some time to think and pray about things. I know that Gods got this. He'll lead me in the right direction.
The doctor-wide meeting (I really have to find out the official name for these meetings!) happens every first Friday of the month. My case will be presented December 4 – which means I don’t have to wait THAT long!! (Thank you, Jesus). Dr. T. said he would call me with the results of the meeting that day. So the journey continues. It’s been quite a year (well, make that 10 years!) and I have no idea what the future holds, but I know the One who holds my future and because He lives, I can face tomorrow. Again, Gods got this! I need only to be still and wait on Him.
Thank you for following along on my medical mystery, but most importantly, thank you for praying and for caring. It means the world!
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