5 years ago today, I had Deep Brain Stimulation Brain Surgery. It was my 2nd of 4 brain surgeries to have.
Initially, I had seen and begged my Doctor and then Neurologist to have brain surgery for cluster headaches. I would have done anything to stop the pain. And I did.
You just do not get cluster headaches and just get brain surgery. It was a very long tedious painful process.
By the day of my surgery, I had been sick for 7 years. I had gone a year with cluster headaches without the diagnosis. Then 6 years of every pharmaceutical available to me to try here in Canada with no relief. I had even tried almost every online suggestion that people threw at me with again no relief.
I had wanted to die once already in my cluster resume. And I was prepared to live at any cost pain-free.
What is a Cluster Headache? Click Here !
I was told about Deep Brain Stimulation via email from a fellow who had DBS from Quebec through YouTube. He was the 1st in Canada to have DBS for CH in this country. Less than a dozen worldwide. This man expressed how much he got relief. I was really reluctant at this point to believe him or anyone else because I have had no relief in anyway shape or form. Then I had one of the worst months in my cluster career and thought ok. I am going to at least google this and see if there is any validity. And because there was less than a baker's dozen it was hard.
By the time I had surgery. I had searched and searched and found out I was the 17th in the world to have DBS for clusters, 2nd in Canada and 1st in my province. One o two died from surgery. Cerebral hemorrhaging. Some got infections, some had 50% relief, some had complete relief and some had none. It was in all honesty, a gamble.
I thought no matter what this guy in Quebec tells me good or bad I need to research. The first step was watching DBS videos. And if you have not seen a brain surgery video. I do not suggest it if you have a weak stomach. Because for the most part, the patient is awake.
It took me about a year to get from asking my GP for brain surgery to seeing a neurologist asking him for brain surgery to then getting my 1st appointment to speak with the neurosurgeon.
I basically presented my case to the neurologist who then referred me to the surgeon. That is how it works. You just do not get an appointment with a neurosurgeon.
You also have to qualify by exhausting every dang pharma drug to no avail to prove you have tried everything despite all the horrid side effects from, weight gain/loss, horrific dreams, and even impotence.
I finally met with my surgeon. Such an incredibly warm and funny man. The last guy on earth you would think is a surgeon from his comedic banter, smiles, and passion for life. Type a guy I who plays guitar by the campfire and goes white water rafting. Not on a golf course with silly clothes.
He then sent me to a long psych evaluation to ensure I wasn't going to cash out if it didn't work.
The surgery is about $100,000 and they are investing a lot in my health. Obviously, I passed because you are reading this.
I explained how I heard about DBS helps cluster patients and wanted it. My surgeon had performed over 50 DBS surgeries but they were for all Parkinson's patients. I was his first cluster patient.
He explained the government wouldn't allow DBS unless I tried ONS. Occipital Nerve Stimulation. A far less invasive surgery implanting to electrode wires in the back of my head in a criss-cross pattern. They would potentially do 2 surgeries as the wires protruded out of my head to an external battery pack(pacemaker).
After 2 weeks we would review the results and then determine if we go ahead with Deep Brain Stimulation brain surgery. I was a bit disappointed because I knew in my heart DBS was the answer for relief and it was just another process I would have to go for. I was determined to have DBS and get relief. No matter what I had to do.
So an appointment was eventually made and I had ONS. For this surgery I was put under yet woke up for a split second during surgery. I guess it's rare but happens.
After 2 weeks and having zero improvements. He removed the wires in his office and then proceeded for the appointment for DBS. I have the wires as a nice souvenier partying gift.
They explain to you what will happen during surgery. What theya re going to do. Potential risks.But they do not tell you what will happen to you after surgery. The hemoraging risk was like 1%. The infection rate was 4%. So very low but then again my disease affects 0.01% of the world so why wouldn't I be the one who gets an infection.....
And I did.
Literally the day before I had to go to the hospital. I couldnt eat or drink after midnight so we stopped enroute to the hospital and got a burger. Literally in the drive through my car sprung a rad leak.
Im like really? I can't fix it when I get home and this is a repair I can do in m sleep. Ugh.
I had literally just finished painting the main floor of the house 2 days prior. I busted my chops getting it done because I knew after surgery it would be a very long road to recovery. And I hate painting with a passion. But since it was a smokers house and my wife and I had quite the smell was bothersome to us. We got it done and surgery was now.
I barely slept that nigth at the hospital knowing my head was going to be drilled into awake the next day. My wife and son went home. I already had been abandoned by my closest friends so being alone without them wasn't a shocker neither.
The next morning very early around 6 or 7 am they wheeled me down to the OR. My son and wife were up and there. Thank god because they were the last faces I wanted to see if things went south.
The surgeon gave me 21 freezing needles. I do not take to freezing well. Its like that at the dentist for me too. Usually I get 4-7 to freeze one spot. Well the surgeon needed to bolt a halo to my head for surgery. He said you need 4 needles. I got 21.Finally I was able to not feel it as he tightened the screws to my skull.
Still to this day, I still do not know what went though my wife and sons mind. I can not even imagine, I can only assume they were more scared then me.
They wheeled away from my wife and son into another waiting area that felt -10C because all I had was a sheet on covering my giblets. I was never so scared in all my life at that point. I fear heights and water but this was a different fear. Hard to describe. Since I am a man of faith I prayed and sang to god.
They wheeled me into the Operating Room. And just like on TV. Stainless steel everywhere. A dozen or more staff covered head to toe and most of them on the cell phones. Some setting up equipment and my surgeon and I cracking jokes. I begged him for NO CATHATOR. And he listened. Thanks Doc.
They sedated me so I was drowsy but coherant. I remember feeling like a cordless drill vibration was on my head as they were drilling into it. It was bizzar. Little did I know that feeling would turn into PTSD about a year later.
I then recall the surgeon asking me to look at the clock on the wall. He explained the nuerostimulaor was on and he hooked up an external battery pack to test it. Before inserting it into my chest.
I looked at the clock on the wall. My right eye ball turned 180 degrees. Then I seen two clocks and got very nautious and asked him to turn it off. And he did. They explained they were going to knock me out for the rest of the surgery and insert the pacemaker in my chest and wires from my head, neck to the pacemaker. My arse was so hard and sore from sitting in like a dentist chair not an OR table.
I was glad to be knocked out and didnt want to see anymore.
I woke up hours later very very sore. I felt like I was run over by a semi truck and left for dead. I was nautious, and queasy. Expected I guess. My wife and son were there.
Shortly after I started vomiting for about 5 days actually. I should have gone home the next day. I was very happy not to. I was in such bad shape, I was so unstable. I couldn't walk to the bathroom. Sitting up to pee in a bedpan was a huge effort and I kept thinking to myself how can a person with Parkinson's disease in the 60s and 70s handle this surgery? I'm not even 40 and this kicked the crap out of me.
I spent the next 5/6 days in the hospital vomiting blood, feeling really bad. And the last day I was ok to go home. The only visitors I had was immediate family. My folks, my wife, and son. No one else came to see me. Bastards.
I had to heal up for a couple weeks because the surgeon would turn on the stimulator and program my brain. 7-10 days later they had to remove the staples. OH MY GOD that hurt like crazy. I HIGHLY recommend stitches, not staples.
I now started my recovery process and my life would soon change forever.
It was a year before I got the feeling back on the right side of my head. It was 6 months before I could stand up and look down without falling over or vomiting. It was 6 months before I could tie my shoes. It was a year and I found out I have PTSD (see the blog on PTSD below).
30 days after this surgery I woke up one Sunday morning and noticed a large strain of puss running down my chest from where the pacemaker was installed. Since I sleep in my underwear I noticed it. If I had clothes on it would have soaked in. My right arm was tingling. from my elbow to my shoulder. That feeling when you hit your funny bone.
We went to emerg and was shocked when I said hi, I had brain surgery here last month and this is what I have seen this morning. And within seconds I was in Emerg and my surgeon was on his way down.
I had brain surgery the next day to remove it. The infection was traveling to my brain. If I ignored it I wouldn't be here.
April 1st yes April fools day I had it removed. My 3rd of 4 brain surgeries.
Another 5/6 days of vomiting, Bedridden in the hospital. 2 things stick out in my mind that day on my birthday. 1. This was the same room again recovering. My mom also spent 31 of her 33 days dying in the exact same bed and room in August of 2015. Yes, exact same spot. Same room and bed for us
My next surgery was November 13. The day after my son's birthday. To reinstall everything.
So yes, 5 years ago I had brain surgery. I had lost thousands of hours of my life to this disease. It had taken my marriage prior to my wife, my career, my vanity and now what I thought were my friends.
The surgery did not help my cluster headaches at all. I had really hoped it did. Since surgery, my life has changed dramatically from PTSD, new pains, memory loss, cognitive issues.I loose train of thought all the time. I miss spell words or write them backward but know in my mind I am writing them wrong and continue to write them wrong until it's done. I loose train of thought all the time. Short term memory loss is bad. My long term is excellent. But I used to pride myself on my memory for an old job I had that relied on short-term memory. I could no longer ever work again. Constant head pain 24/7/ Which is soon to be diagnosed I hope. Related to surgery? I do not know. Related to clusters, NO. My life has changed dramatically in the last year.
Let me make this perfectly clear. I do NOT fault my surgeon. He tried to save my life of pain. Despite the surgery not helping my pain.
One thing all of this has taught me. Fall 7x and get up 8.