The negatives:
1) The procedure - It is not painful however it is long. Once you are 'framed' into that chair you aren't moving for 5-6 hours. There are plenty of people around you to help you get comfortable. My back started to bother me and my legs got real jumpy by the end. I think my body had enough. Not a big fan of catheters either. There was no pain when they implant the temporary posts to hold the frame to your head or when they were removed. The hospital staff does a tremendous job of trying to keep you comfortable. It's just that it is a long procedure and it does drain you.
2) The battery implant - The battery pack is just plain annoying, even after nearly 2 years with it. Most of the time you don't really realize you have it but when you reach across your body for something, a little tug reminds you it's there. When you lay on your side it gets squished and uncomfortable. It doesn't hurt you just know its there. Bothersome is probably a better word. Also, it does wear out. I haven't had to replace mine yet, I'm guessing by year three, but it does require another day-surgery when it comes time. I'm opting for the rechargeable one next. I hope to get 10 years out of that one.
3) The adjustments - It takes months to tune in the device as everyone's symptoms are different and there are hundreds of combinations of settings to go through to give you the best benefit. Even then, my symptoms aren't the same everyday or even the same throughout the day so, it's a bit of what's best in general. My biggest problem with the adjustments is every time I have one scheduled, that day for some reason, I am at my absolute best. FRUSTRATING! My neuro still manages to dial it in enough plus gives me enough adjustments in the remote to compensate for fluctuations.
4) The cost - You need decent insurance for this surgery. Typically its between $50-60k for the surgery then the follow-up visits are every 3 months for a while until it goes to twice per year. Travel, time-off for surgery and appointments, plus the cost of the appointments themselves can get expensive.
5) The limitations - Its not a miracle cure for all that ails you. In my case it works extremely well for the tremors and the slowness of movement I was having in my left hand. Unfortunately, as you read in my previous blogs, there are over 80 symptoms that Parkinson's can cause. Your Doctor will determine the best placement, probe and settings to control the worst of your symptoms but you will still have symptoms. Additionally, it doesn't slow the progression of the disease. Its not meant to be thought of as a cure, more of a crutch. What it can do it does very well but there are limitations.
6) The future - If you need it, you need it. You can wait for the next best thing to come out (and it does and just did). However, what they have out now works very well for the symptoms it can control. Plus, its a proven surgery with thousands of success stories. Don't let anything get in your way of being the best you can for as long as you can.
No one knows your future or how quickly you are going to progress. In my case, I went from diagnosis to having the surgery in 5 years. I'm guessing that's because my Neuro called my disease "aggressive". Yours will most definitely be different. Listen to your Doctors, if you don't trust them find someone you do. Even with the negatives I've listed, this surgery can give you back a part of your life you may have already thought you've given up.
