My decision and journey with brain surgery-DBS and ONS

As mentioned before I started these attacks July 25,2005. They have been relentless everyday non stop since then. Yes I am 100% Chronic. Even more rare because of migraines and tension headaches. All uniquely different. Pain is no comparison. Anyone with CH will attest to that and concur.
About 2 years ago, maybe less I got an email from a gentleman in Montreal. The first in Canada to have Deep Brain Stimulation for Cluster Headaches and he claimed to had success with the surgery.
Initially, I brushed it off as I constantly get ridiculous emails from people stating a magic,pill,potion or drug will cure my headaches or anyone with CH. Not true.
About a week had passed and as many CH survivors will say they had the mother load of all attacks.
So at that point I went back to the email, no longer dismissed it and started to research "Deep Brain Stimulation". Now I knew this would NOT be hey Doc. I want DBS, can I get in Tues? I knew I had a long journey ahead of me as well it was a family decision.
My decision to do deep brain stimulation was based on 2 major factors. 1 my pain and 2nd my family. Not only is pain and suffering with CH inhumane. But its unfair to my family. I don't know how many countless nights my son woke up, my wife woke up watching me bang my head on the floor screaming in pain and being the loving family they are. They wake up and comfort me, get me whatsoever I need to help me through it. Some nights multiple attacks, some nights 3 hours long which disrupts there sleep. My wife and son has gone to work with one eye open more than once.
I felt I was not only helping myself but helping them in the future.
For me it was an easy decision. I absolutely hands down hate illegal drugs in any shape or form. I went to school to become a police officer and it goes against my personal morals, beliefs and thoughts. I get emails all the time to try pysilasiban(Mushrooms) and get baked. Not a hope in heck.
Ill explain....for one its illegal and against everything I stand for and believe in. 2nd I spoke to my neurosurgeon about it and he said there has been zero case study based on it that LSD helps. I have seen many videos stating it helps. Personally the thought of being stoned doesn't interest me. I have been called a fool, idiot,moron on YouTube for my decision against using shrooms vs having my head drilled into. My choice not yours. My decision, not yours. My life, not yours.
However I would never nor have condemned anyone for there choices to use what they use to stop the pain. my neurosurgeon than asked if they ever made it in a synthetic form would I take it? Probably not because its based on the premise of LSD. If there was zero side affects,perhaps and it would have to be 100% legal,tested by thousands and on the shelf. Otherwise no thanks.
All I ask to my  fellow CH friends is that you respect my decision for surgery as I respect yours.

Now having brain surgery is scary itself. I knew the chances, the risks and possible outcome. And as brave as people tell me I am. I as scared poop less..
I wrote a letter begging a neurologist to get an appointment with a neurosurgeon. I was lucky enough to get in to see Canada's top leading neurologist and literally begged him for an appointment. They will always review your case before pursuing it. They want to make sure 100% that all drugs and alternatives have been tried first. I was a guinea pig for 3 years and only thing I got was side effects. Nothing worked.

He referred my to my neurosurgeon who I then read the letter to in tears wit my wife and son at my side pleading for help. I am his one and only CH patient. He said I am probably the only one in his career he will have most likely. This process took a longtime to get where I was sitting in his office so I wasn't about to screw it up. I had done my research, had a bag of knowledge ready to go. He was kind, considerate ad very receptive to my disease and trying surgery.
Prior to ny surgery we need as policy to send you to a shrink for assessment to make sure. I think they wanted me checked over to make sure I wouldn't cash out if the surgery didn't work.So I had an assessment done. Almost 4 hours and passed with flying colors.
He said OHIP (Ontario Health Insurance Plan) will pay for DBS but not until we try Occipital Nerve  Stimulation. ONS is where they implant two electrodes at the back of my head to a pacemaker. The pacemaker is external and if successful they will install it inside me.

Aug 23,2011 I went in for my first surgery. Occipital Nerve Stimulation. Scared, confused and on a mission it had to be tried and done.

I had the surgery and woke up in recovery in pain, dizzy and sick and nauseous. From that day forward I found out I have severe allergic reaction to anesthesia. I vomit and get really sick for days on end. The neurosurgeon implanted the 2 long electrodes in the back of my head (see photos on my other blog about surgery). and came out of my head to this pacemaker taped to my chest. I felt a buzzing, vibrating sound in my head.  The wires were as thick as common house speaker wire. Extreme uncomfortable and painful. Sleep was absolute worst. I could not lay back,pretty much had to sleep on my face. Looking like a cyborg I tried best I could to continue my life with strange reactions from people in public. The large bandage would fall off almost instantly from sweat as it was a hot summer so you could see these 2 wires protruding from my head.
Peoples jaws hit the ground when they saw me in disbelief.
To make light Id ask them if there car needed a boost.

It was in over 2 weeks and zero help for me. Attacks kept coming. So I went in to see my neurosurgeon and he removed them in 2 good pulls. Yup. just yanked them out. One came out easy the other was like having my head cut open. I was happy they came out and wanted to pursue DBS.
He was disappointed and to some extent so was I as DBS is very dangerous and evasive.

So we persevered together and made an appointment for Deep Brain Stimulation for Feb 2012.

As the time came closer, I got married to my beautiful loving wife and had done a couple things on my bucket list. From meeting Jay Leno to seeing Tim Allen again. And in Feb meeting Lisa Marie Presley.(all this on my blog with photos). So, I felt in some ways, it was my time. And whatever would happen would be in Gods hands. I had watched numerous DBS surgery videos ad the only thing that freaked me out was being awake and having my head drilled into.
As they days came close,yes I got scared more and more. I never changed my mind in doing it, but left my faith in Christ to let me live another day.
Every time I got a severe attack I would say, cut me open NOW, any CH survivor will agree, during a KIP 10. Its when your not in pain and OK is when a decision like this is to be made.

Feb 27,2012 arrived and it was the day. It was supposed to be the 23rd but got moved for emergency surgery for someone else.
I went in the night before. My head was completely shaved. I gave the clippers to my son the day before and said go at it, make some funny designs and have fun. So he did. First time in my life I was bald. As we were in my room the night before. The nurses comforted me but were astonished at my young age as 99% of the their patients were all in there 60s,70s and 80s. Not some young guy like me. With all the years of attacks, sleepless nights. My facial hair had gone white in 1 year(year I got attacks) and had aged 10 in 1 year, so I felt 60.  I kissed my wife and son good night and woke up being transported to surgery. My wife and son was there. I went to a hallway where my doctor was and he started putting freezing into my head and trying to install the halo. I generally do not take freezing so instead of 4 needles he gave me 21. Installed the halo and voila. I felt like DOC Emmet Brown in Back to The Future when he answered the door in Nov 12,1955 when Marty McFly was looking for him.

They brought me to this cold room. where I waited like at the abattoir. Freezing cold by myself, scared, I closed my eyes and sang "How great is out God". Net thing I know I am being wheeled in, brought into OR. The OR is just like TV an the Movies, pale tile, big metal shinny silver things and  many machines with wires. No lazy boy but a dentist style chair. And it felt -10 degrees Celsius in there. So cold I could see my breath I remember this all to well from ONS. They said they were going to sedate me but not knock me out. I fell asleep quick but remember waking up staring at the clock as they drilled a 3/ 4 inch hole in my head. I felt the vibration and when they skull cap fell into my brain I felt them trying to pick it out. The pain I was in was coming from the dentist chair. My ass was so sore and they had my head locked in this halo to the chair so I wouldn't move. My butt was numb and sore and 1 cm movement gave me relief but the second I went to move they doctors got angry and said don't move. They then hooked me up to an external pacemaker before installing it to test it,
and I was staring at the clock communicating with him. All of a sudden my left eye turned 180 degrees and it was the weirdest thing ever. I said turn it off. So he did. He played with it for awhile and I got dizzy and nauseous. He said OK we are going to put you under for the pacemaker. Next thing is....good night and woke up in recovery sick.
As I mentioned I have bad reaction to anesthesia and get very sick. for 5 days I vomited blood,slept and vomited more blood. My throat was sore form surgery where they insert the breathing tube, head and chest was sore. I felt like a victim of a bad car accident. Day 5 or 6 I was released and sent home to recover.
2 weeks after I returned to the neurosurgeon and he turned on the pacemaker, set it at 0.5 volts and sent me home. I was still getting attacks and still coping and managing. About 2 weeks later at the end of March I woke up getting ready for church I noticed the incision on my chest was leaking puss. Concerned I woke up my wife. My right arm and shoulder was sore. We went to church first and then to ER. Same hospital as surgery and they took me right away concerned. When I told the nurse what surgery I had and what I have her mouth dropped and took me in in seconds.

Now I was alarmed. They kept me on a IV bag and from noon to midnight I sat in ER in a chair. Waiting. At midnight they said sorry keeping you overnight. I wasn't prepared for the next morning.
At 7am my neurosurgeon came in the ER and said sorry Tom we have to operate and take out the pacemaker and lead wires tomorrow morning....now my mouth hit the floor.
So I stayed there and feared for infection. I remember the neurosurgeon speaking to me about issues and made me sign a waiver letting me know percentages like 4% chance of death due to bleeding of the brain. 1% chance of infection. Well low and behold I got an infection.  I am already 0.01% of the worlds population with CH , why not be the 1% who got infected.  I was angry,and upset and scared. The mere though of throwing up blood for 5 days again was not in my mind.

So it happened. They removed the pacemaker and lead wires to my brain. They send the sample of puss to the lab which confirmed I had an infection. They removed it because the lad wires traveled to my brain and could have killed me. The first doctor whom saw me said if I wouldn't have noticed the puss and it would have travelled to my brain, I would have been dead in less than 48 hours. So I was lucky I got up to church that morning and noticed my chest leaking. God taking care of me again.
April 1st they did the surgery. April 5 was my 40th birthday and I spent it in the hospital puking blood.

The neurosurgeon then said in a month we will re install everything after you heal. Abut 2 months goes by and he calls me so I go in and say look, I want the summer off. I have had 3 surgeries in  8 months. I am worn out, exhausted and want to enjoy the summer before you put it back in. He agreed and it was also because my wife has to take time off work, son in school etc. So we booked it for Sept 6.2012.

Sept 6,2012 I  finally arrived at UH and low and behold that day a cough and throat tickle came. I never get sick. I have not had a cold or flu in 4 years as I take COLD FX and wear by it. About a month prior I couldn't afford it. I had been without income since Jan and was waiting for disability from Canada Pension. Stopped taking it and voila. I'm sick. The anesthesiologist decided not to proceed with the surgery so sent me home 15 min prior to cutting me open again. Thank God they did. I had never been so sick in my life. 6 weeks on the couch with cold,flu,cough. You name it. It was horrible. I thought to myself there is no way i could cough with staples in my head. I was disappointed I didn't have the surgery but glad at same time. So they rescheduled and my surgery was Nov 13,2012.

November 13,2012. The day after my sons 14th birthday. Round 4 at hospital. I am thinking I should get Air Miles now....Same routine. same everything. Cold room and prayer. Scared even more now because of what I have been through. Begged and pleaded for different anesthesia, no staples and cut out scar on chest and let new one heal.

I wake up in recovery....sick...again....sheesh. I had to share a room this time with 4 guys. Guy beside me. Smoking with oxygen tank. Nurses went balistic on this moron. The smell of smoke grosses me out. The 90+yr old with a broken neck and a fellow across from me with visitors 24/7 and loud. I did not get 1 min sleep. Used to the pain and unable to do anything. I told doctors I want to go home and recover there, They agreed, gave me my air miles and sent me home/
Spent next 5 days sick as usual but much better this time. Neurosurgeon forgot not to use staples and stitch me so staples again. I hate staples. Painful in and removing.
In the meantime at home I made a new video for YouTube.

At present my hair has grown back in and I am recovered to the point of not being ins a hospital but adjusting to life now with a large foreign object in my chest and thick wires in my head. My range of movement in my head and neck is limited and its very tender where the pacemaker is. I have been back to see my neurosurgeon 2x now for re programming and as the day i write this I have 1.9 volts firing at my brain. My attacks at present are still coming.

Do I regret surgery? No, not one bit. What happens if it don't work or only gives me small relief? Fine. I knew going into this, that its NOT a cure and ONLY a chance at pain reduction nothing  further. Do I recommend this for other CH survivors? Only you with CH and your doctor should make that decision. What happens if it don't work? There is an OFF button. Ill just leave it in.

Despite my setbacks with 4 surgeries, infection,pain etc. I want to thank my neurosurgeon immensely; I would not be on this journey in life without him. I have so much respect for him and appreciate his care. Thanks Doc. I still believe God is in you.

And my wife and son. Who was at the hospital all the time. As soon as my eyes were open there they were. They saved all their tears until I was pushed away into OR and swallowed them up as soon as they saw me being strong, supportive,caring and loving. Without both of them I couldn't have gone through it. I cant even fathom what they must have felt watching me whisked away to OR or seeing me after surgery let alone all these years with attacks. I have the strongest wife and son. I love you both.

My mom and dad who supported me on my decision for surgery,  encouraged me to go on disability and stop trying to prove myself or others I can work with this disease. When I couldn't.
Thanks to my real friends who took an interest in my well being.

For follow ups on my health and the DBS progress, follow my blog

Blessings