Friday, October 23, 2015

An update

Yesterday, Mom and I headed back to Vanderbilt for my appointment to discuss the Baclofen pump. I actually got to sleep in until 7:30am and that was super nice :) I got up and worked out and then Mom and I left around 9:45am. We got to Nashville around 11:30am (their time) and went and ate at our new favorite place to eat while there: Provence Breads and Café. Then we perused a couple of shops until my appointment at 1:15pm. We met with a nurse practitioner who went over with us what all the neurologists had discussed in their meeting. She said that they didn't exactly know what to do with me in the sense that they didn't know if a Baclofen pump would work better or if deep brain stimulation would be the answer. So they decided to play it cautious and start with the least invasive procedure. Veronica (the nurse practitioner) was there to discuss how I would go about getting the Baclofen pump and what it would do. She said that I would need to be tested first to see if it would work. The test involves a 23 hour stay in the hospital. I have to have a lumbar puncture (spinal tap). Physical therapists will rate spasticity and other things before I'm given the spinal tap. Then I'll get the spinal tap and the Baclofen will be administered. Two hours after the Baclofen is administered, the physical therapists will come back and rate everything again. Then in another two hours they will come back and rate again. There is 4 hours total of this rating and observing. Veronica said that after a total of 6 hours the Baclofen will be out of my system. The cool thing about this drug is that it only goes to the nerves that utilize/need it and not to anything that doesn't need it. It will not effect anything that's "good", in either a negative or positive way. The bad thing about the drug is my body will become dependent on it. The physical therapists and also the neurologists are looking to discern whether I have spasticity or dystonia. If I respond in a positive way to the Baclofen then they know that it's spasticity. Spasticity does not respond well to deep brain stimulation, however Baclofen works really well for it. If I don't respond to the Baclofen, I might be back on track for deep brain stimulation. I am praying that it will be black and white. What I mean by this is I'm praying that when I get the Baclofen, I'll be able to get up and walk with no issues or it won't do a thing. It's a big prayer, I know, but God's in the business of answering big prayers. What I'm concerned about, is that it won't be so black and white and I'll have to make a decision on whether it's benefits out weigh getting it inserted and having to have it refilled. There are lots and lots of things to think and pray about! I set a date of November 16 for the spinal tap test. I have to arrive on Sunday afternoon (the 15th) so that I can get a bed (which I hear are at a premium, which is why I have to come in on a Sunday!). The test will be done on Monday morning. Side effects of the test are a spinal headache, meningitis, death. Veronica said the most common side effect is the spinal headache and that's the side effect she spent the most time discussing, although she did mention meningitis and I can't remember if Mom and I mentioned death or if she did, but it was in there too...because you have to know ALL the side effects! If the results of the spinal tap indicate that a Baclofen pump will work for me, I will have the surgery to insert it on November 23. Yes, we already scheduled the surgery. In fact, we had to schedule the surgery before the actual test because the surgery is the hardest to schedule. I'm happy that everything is scheduled, scared about the actual procedures, hopeful that I'll be able to walk again unassisted and blessed by God in so many ways they are too numerous to list!

Wednesday, October 7, 2015

A Television First: Live DBS

When I got to work this morning, I was greeted with my daily industry news e-mail and a surprise. For the first time on TV, there will be a two-hour special on an awake deep brain stimulation surgery. What are the odds of that?! I've been going to Vanderbilt since June in hopes that I will have deep-brain stimulation. At this time, it's on the back-burner in hopes that a less-invasive Baclofen pump will work for me, but still...deep brain stimulation will be filmed live on TV! It's air date is Sunday, October 25 at 9pm on the Nat Geo channel for those that would like to watch. I have to see if I can watch it at my parent's house, since I actually got rid of cable back in February.

As for me, I'm patiently (haha - if you know me, you know this is NOT true!) waiting for October 22 when I go back to Vanderbilt to talk about the Baclofen pump. I have no idea what to expect, but I'm thankful things are still moving forward.