Why three times? Well. The first time after 30 days I woke up to puss running out of the insition where my pacemaker is. I knew it wasn't normal but wasn't overly concerned until I got to the hospital.
I walked into the hospital and said Hi, I had brain surgery last month, pulled down my shirt and puss was obviously running down my chest. Immediately they took me inside. Sadly emerg was busy and I ended up sleeping in emerg that night. Some 12 hours later they told me my surgeon would be in to operate to remove the DBS as I now had my right arm tingling and going numb.
They tested the puss and came back positive for an infection and said it would travel to my brain and I would die if it wasn't removed. 8am next day it was removed. Which was now surgery #3.
I was so angry because I was literally just starting to feel better. Any surgery I had resulted in 5-6 days in the hospital vomiting blood. Which happened to all 4 of my surgeries. I couldn't stop throwing up. It was only the 4th surgery that they concluded I was allergic to gravol. As soon as the gravol stopped. I then stopped throwing up.
Each surgery I felt like a Mac truck ran me over and left me for dead. It was the worst body and head pain aside from Clusters I ever felt.
Surgery #3 was my actual 40th Birthday. The big Four-Oh. Only my folks, wife and son had ever come to visit me for any of my surgeries. I have never formally been apologised to by anyone who never came to visit, let alone send a birthday card, phone call let alone a text. But oh well. Such is life. Sometimes a loss isn't a loss but more of a lesson.
So after they removed the DBS I waited about 8-9 months to have it reinstalled. Since I almost died all I asked was that it was after my sons birthday the do the surgery. And it was the very next day,
I puked my guts out for every surgery, felt lousy. It was no picnic. I often thought how do 60 and 70 yr olds handle this surgery for Parkinson's???? I was 40 for my 3rd and struggled immensely.
They tell you what happens during surgery. Not after or what was going to happen.
I regret the surgery despite having 100% confidence It was going to help me.
After the 4th surgery for the next 2,5 years every 3 months I would see the surgeon for programming.
I never got relief.
At 2,5 years I turned it off and started using magic mushrooms to treat my cluster headaches. It has saved my life on numerous occasions since. In fact. I have my GP, neuro surgeons blessings that I use it. Many medical papers have published facts on this. It is not hokey pokey made up medicine.
In fact. You would not be reading this if it wasn't true.
Sadly since my last surgery, I been experiencing these things daily and it has ruined my quality of life.
- head/neck pain without remission. Started 2 years ago. 24/7
- nausea and vomiting
- ears ringing, vertigo
- radicular pain
- nuero weirdness
- dizzy spells
- severe short-term memory loss
- lack of sleep. Can't stay asleep
This is the primal list. Its much longer but almost every month something new pops up. None of these things ever happened to me before. Only chronic migraines and chronic clusters.
The quality of life I have experienced since surgery sucks. No other way to define it. I get asked all the time. Should I have surgery? My answer is the same. Read my experiences, draw from that. I would never tell anyone not to have it or to have it. It is a personal choice.
In fact. a dear friend of mine in the UK who is the strongest advocate for Parkinson's I know had DBS for his tremors and it helped him immensely. He has had good success and a better quality of life with the aid of DBS and marijuana.
But for me personally. It has ruined the quality of life I have. I could care or less if any medical professional tells me it's not related. I live with this. My life is more than appointment.
This blog today isn't meant to be negative. It is a reality for me.
So if by chance you think I am a little fucked up, or ssay and do fucked up things....chances are I do and am.