Tune-in-Tuesday: May 9, 2023

Wonders never cease - I am actually writing this blog post on a Tuesday (to go along with the Tune-In-Tuesday theme) AND I'm updating this blog within a month of my last update (instead of not updating it for 3 or more months). Actually, this is the 2nd time I'm writing this post tonight because somehow, I lost my previous post. I had just finished it too, so I'm not happy about having to write this all over again, but here it goes...

I'm updating tonight because I met with my neurosurgeon today. It took a while to get in to see him. Usually, the neurosurgeon's office is very responsive, so I found it very odd that I had not heard from them a week after seeing my neurologist. I called my neurologist back (since he said to do so if I hadn't heard from them). His assistant gave me the name of the neurosurgeon and his number so that I could call them directly. I couldn't think of the name of my neurosurgeon off the top of my head (see what I did there?!) when I was talking with my neurologist's assistant, but the name she gave me, was not his name. I did a little research before I called the neurosurgeon's office and remembered the name of my neurosurgeon! When I looked him up, I found out that this new (to me) neurosurgeon is in his same practice. It turns out that my previous neurosurgeon, Dr. B. has handed off these battery replacement surgeries to his colleague, Dr. G. (my new neurosurgeon). When I called the neurosurgeon's office the front desk was as confused at first as I was - ha! In their system my surgeon was Dr. B. and even though I said I was to see Dr. G. now (according to my neurologist) they had me leave a message with Dr. B.'s team first. Dr. B.'s team called me back and explained that I was supposed to be with Dr. G. because Dr. B. had handed those surgeries off to him and they said that they had left a message with Dr. G.'s team to give me a call back. When I hadn't heard from Dr. G's team 3 or 4 days later, I called back and left a message. I have a dear friend at church who knows people in high places at the neurosurgeon's office, so she texted her friend and her friend had Dr. G.'s nurse call me the very next day. It turns out my paperwork had gotten lost. Dr. G.'s nurse was super apologetic and friendly and she scheduled me for the very first appointment available - today. She actually scheduled me with Dr. G.'s PA because Dr. G. didn't have any appointments available until the end of June, but she assured me I would get to meet Dr. G. for a minute or two at today's appointment.

In the meantime, I asked my brother, who is an ER doctor at the same hospital, if he had heard of Dr. G. He had and said that he loved working with him because he was very responsive. 

My dad went with me to today's appointment. He didn't have to, but I'm glad he did because we both got to meet Dr. G. for the first time at the same time. Plus, Dad settled my nerves (although I don't think he knows that). Like I said, we met with Dr. G.'s PA first. He was great. Then Dr. G. came in. He didn't seem rushed at all, and he answered all of our questions. He was super nice and put my nerves to rest. I finally got an answer as to why my battery drains so fast. He said that's it's actually super common that dystonia DBS patient's batteries drain faster because we use more electricity and on a higher setting of electricity then other DBS patients (like Parkinson's patients). He agreed with my neurologist that me having to have the battery replaced in my system every 1.5 to 2 years isn't good because with every surgery there's risk of infection. I asked (because a friend brought this up) if scar tissue was/is an issue with each new surgery and surprisingly (to me), he said that wasn't an issue because there is something they can do to avoid that. He said that I was an ideal candidate for a rechargeable battery. Dad asked how long a rechargeable battery lasts. He said 15 YEARS. Yes, 15 years! But, while it may last that long, I have to recharge the battery EVERY WEEK. It takes 2-3 hours to recharge it, but I don't have to do it consecutively or even on the same day. I do have to be plugged in to a light socket though. I had joked with friends about that, but that part of it turned out to be true. It's a good thing I like to watch TV because I guess that's what I'll be doing while I recharge myself. :) Dr. G. went over the risks of a rechargeable battery. There's a slight risk that the battery could come dislodged/torn from the muscle (I think it's muscle they sew it to. Dr. G. said what it was, but I've forgotten that now!) or it could flip, and I would have to have surgery to get it sewn back in place or flipped back over. He said I'm at a low risk for either of those things happening. Those at a greater risk are older people who have thin, frail skin. He's only seen it happen once himself and it was in a patient who was in their 80's. One of the advantages of having a NON-rechargeable battery (what I have now) is that even if the battery were to flip or become dislodged, it would still work. The rechargeable battery has a certain spot (and only on one side) where it's recharged and that's why it would have to be replaced and/or flipped surgically if it became dislodged or if it flipped. Does that make sense? I feel like I'm not making sense, but Dr. G. made perfect sense when he described everything. Dr. G. showed us what the battery looks like and it's smaller then the one I have now. Dad and I agreed that the rechargeable battery is the way to go. It's made by the same manufacturer (Medtronic) as my non-rechargeable battery and everything else would remain the same (as in, I will still have a remote to change the settings). After Dr. G. had explained everything to us and answered all of our questions he left and sent his nurse in to schedule the surgery with us. She asked if there were any days in June off the table for us since that would be the first dates she could get me in. We told her I didn't want it on my birthday. She asked when that is and when I said the 12th she said she could get me in before then - whew! The earliest Dr. G. has available is June 7 so that's what we decided on (even though that's my niece's 2nd birthday - that kind of bummed me out - but my sister-in-law said we could celebrate early which made me happy!). I have pre-op appointments scheduled for May 24.

So now I'm praying that the battery won't completely die before June 7. If I'm being honest, I get really anxious about having surgeries (and yet at the same time am super thankful for them!), but I know that in everything...

God's Got This!