These past few weeks have been a test of patience at best. As I laid out in a previous post about my DBS surgery, there were several steps involved prior to getting an actual date for the procedure. One of those steps was to get surgical clearance from my primary doctor and cardiologist, along with an MRI of my brain. I thought this would be an easy task, but I was proven wrong from the get-go.
I had an appointment with the surgeon on the 5th of January. During our discussions, I was told “they” would take care of sending the proper forms to all involved. Based on what “they” told me, I got an appointment with both doctors and the imaging place to get the necessary work completed. Being a trusting type of person who believes someone will follow up and actually do what they tell me they will, I felt like things were on a smooth track towards the end goal – surgery.
Those promises were not kept. The first failure was at my primary doctor’s office. He asked me if I brought the clearance forms with me. No, the surgeon’s staff told me they would send them to you. They didn’t. My primary had to call the surgeon’s office and have them FAX a copy to him. I had to reschedule that appointment until the forms arrived – I would get a call when they were in the doctor’s hands. The rescheduled appointment took three hours of waiting and tests to make sure all boxes were checked.
The second missed activity was for the MRI. It was scheduled for the 14th of January. I received a call the day before saying they had not received the forms or insurance clearance and would need to reschedule. By the time all of this mess was straightened out, it was the 24th of January when I actually had the MRI.
My cardiologist is the last one to sign off on my clearance forms. When I first called him, I was told he didn’t have anything open until late March. I promptly told him that was unacceptable and find an earlier spot. I was not going to wait that long and take the chance the other clearances might expire and have to be redone. My appointment with him is February 9th.
Last week, I called the surgeon’s office to see if they had set a date yet. I thought surely they had and wanted to know so I could plan my life over the next couple of months. Getting through to someone was almost impossible. After leaving three voice mail messages and getting a verbal promise from an “underling” to have the person call me, I was still in the dark. No one called, no text messages, no e-mail – nothing!
These folks were close to pushing the wrong buttons with me. Something as important as DBS deserves a little more attention and communication in my book. What I was getting did not set well. So, I called the Boston Digital technician who will assist with the surgery and asked him to contact the doctor’s MA or whomever is in charge of sending out forms, and so on. I wanted answers.
I finally got a call full of apologies and excuses about Covid, yada, yada, yada for not getting back to me. After a brief statement of what I wanted, I finally got the dates for the surgery. Baring any further complications, the first part will be on February 24th, and the second part on March 4th.
As I mentioned in my previous post on this subject, the first part has a week long recovery time before the instrument is implanted and connected to the leads installed during surgery number one. The brain needs time to recover and allow any swelling to go down before the second part.
During the first surgery, tests will be conducted to determine what affect various input signals have on my tremors and so on. The data gathered will be a baseline of sort for future programming which will only begin 30 days after the second surgery. Again, things need to settle down and the brain needs to get used to the foreign objects implanted.
When I first began talking about this, I did a lot of studying and research on the procedure. I am aware of what will happen and fully expect all to go well during both operations. The procedure was something “out there” I was talking about and looking forward to.
Now, with a hard date in hand, I find it is becoming more real in the sense that it is no longer just something to talk about. It will happen – soon. With that acknowledgement, I have noticed a couple of things happening.
One obvious thing is my tremors are getting worse. Recently, I have noticed slight tremors in my legs that I didn’t have before. Whether this is due to the medication not working, or my stress levels thinking about the surgery, I’m not sure. Whatever it is, the tremors are getting to be almost constant and annoying.
Simple things like eating a meal are a chore. I can’t hold a spoon or fork without my hands flying all over the place. It takes a massive amount of effort and concentration to eat a meal. I can’t hold anything in my hands without shaking violently. Sometimes, if I grasp something very tight in my grip, I can control what I’m doing. But, most of the time it doesn’t work. Even holding onto a dog leash makes my hands shake.
From all of my research and the articles I’ve read, people who have had the surgery swear by it. I have found very few negative comments about it and based on those findings, I am looking forward to great results. I know it is not a cure, but if it gives me a small amount of relief from the tremors, and normality in my life, I will take it.
My next post on this subject will come inbetween the two procedures if at all possible. If for some reason I can’t meet that goal, I will do a complete rundown on the whole process afterward. Thanks for your time to read this post – it is always appreciated.