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The When, What, Where, and How of my DBS Surgery

People have asked me a lot of questions, so I’m going to take this space to answer what I’ve been asked this week. I mentioned in my first blog that I’d start at the beginning-the 15 years ago beginning, but I need to answer the questions I’ve gotten.

I must say, I wondered last Monday, when I posted my first blog, how my personal story would be received. By the end of the day, I felt very supported in a way that’s hard to explain, and in a way I hadn’t anticipated. Thank you. My main goals in writing a blog were to reach people like me, and to chronicle what the fifteen year journey has been like for me. I received many private messages from people in similar situations. Goal accomplished.

Ok, onto the details about what is coming up:

The surgery date has been set for June 27. I’ll check in to the National Institute of Health (NIH) on Monday, June 25, for some tests including blood work, an EKG, and another MRI (I had one earlier this year). I can check out on a pass that night. I'll come back Tuesday morning to meet with the anesthesiologist and do what they called “computer testing”. Wednesday, is the BIG BRAIN SURGERY DAY! Everything will start moving along at 7am, and I should be in recovery by 2pm. There’s a post DBS (deep brain surgery) CT scan an hour later. Thursday morning, I’ll have another MRI, and move out of ICU. I hope their projection of a Friday discharge happens! I want to go to the kids’ swim meet on Saturday. Priorities!

Right now, putting on the halo that holds my head in place during surgery is the part that scares me the most. If you could all be there to hold my hand at this point, I’d love it. I have to be awake so the halo is put on absolutely correctly. I will receive some pain killers, but apparently one can feel the screws go into their head. Screws in my head! So, if I see you after the surgery, you will get to see some nice little holes in my forehead. You can google information about this online. I’m going to stop googling this part.

The day before surgery, I’ll learn to play some simple video games that they want me to play again when we are in the actual surgery. Tons more fun than the halo. The surgery involves finding the right part of the thalamus responsible for Focal Dystonia (FD). MRI’s can show many parts of the brain, but as I understand it, the thalamus shows up as one mass, and this area has three different sections.

Once in the OR, I’ll be under anesthesia for two holes to be drilled in my head. No, or very little, head shaving. They drill small holes under hairlines, so no cute wigs need to be ordered! I made a separate phone call with a question about this back in December. One has to be ready for hair issues.

One hole is where they will do the majority of the work: identifying the three parts of the thalamus and putting in the electrode. Initially, three test electrodes (I’m not remembering the correct name of these) are inserted by the three areas of the thalamus. By finding two areas of the thalamus that can send back signals well, the third area and the one that malfunctions in my brain, is then hopefully identified correctly. This is where this surgery is special. The neurosurgeon is doing a best, very-educated, very well researched guess.

The second hole leads the wire down from the brain, into the neck and into the machine. That machine will be implanted in my chest. It’s similar to a pacemaker. The bump from the machine will always be visible. The NIH has a great page explaining the very similar Parkinson’s procedure:

I will be the first American (they think) to have an electrode in the thalamus area of the brain. Surgeons have been implanting these electrodes and chest devices in Parkinson's and tremors patients for a couple decades now. They can see their affected brain area well on the MRI, unlike the area the surgeon needs to find for my DBS surgery. I do feel better knowing this type of surgery is not new in many ways.

Risk. The risk is 1-2% for the surgery, and that includes all the bad things you can think of that might happen. This particular neurosurgeon has a very good outcome rate, which I believe is better than that 1-2%. The greater risk will be infection around the hardware, which would have to be removed should an infection become too big of an issue at any point. Finally, the highest risk is just that the procedure doesn’t work.

After a month passes, the machine will be turned on. The machine has zillions of different settings, so the doctors will meet with me each month to try and find the correct setting. With dystonia, the settings seem to take awhile to “kick in”, so the doctors aren’t sure if they’ll see a change in the office when they adjust the machine.

In the months after the surgery, I’ll be able to update you about any changes to my left hand while playing the flute. Over the course of a year, we’ll know if this whole shebang has worked at all. I do hope that the implanted machine helps me so much more than Botox treatments.

The recovery for this surgery is not bad considering it’s brain surgery. I’ve been told I might feel like I have the flu for a couple weeks, and not to lift anything heavy for awhile.

So, the week of June 25th looks to be one of the strangest weeks of my life. I can’t believe sometimes that I’m doing this at all. At other times, I feel very peaceful about this decision. Someone is going to have this surgery done, I’m in good health, I live in the area, my FD is exactly what they are looking for, and the risk is really low. This is still BRAIN surgery.

Photo from my first visit to the NIH. Taken with one of the residents. I had just found out that I could be considered for the system.

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