Hi, I have had 4 brain surgeries.
First when I saw my neurologist he said one last thing...
INjected a nerve block in back of my head. Said go home. If it works we will know in the next 24 hours...
I didnt even make it to my car at the hospital parking lot before having an attack...
So he sent me to a neurosurgeon.
I am in Canada btw which makes every difference.
(meaning no worries if paying/insurance/etc).
So I go there guns a blazing.
I researched researched researched for MONTHS
And since like they discussed above...have exhausted all medical resources. Personally my decision not to bust.
For argument sake those who know me, know I full support it. But its not for me....(leave it at that).
Anyway, so I write a 6 page letter to this unknown surgeon.
My wife and son and I go to the hospital, introduce ourselves,
Now he is a neurosurgeon who specializes in Parkinson and dables in pain...
I read him the letter, cried my eyes out while my wife and son braved tears rolling down their face.
He looked at me with such kindlness and empathy in his eyes, and said I want to help you. Since I was educated about DBS I was shooting for DBS from the get go.
He said. Im sorry Tom OHIP ( Ontario Health Insurance Plan aka free healthcare)will not pay for DBS until you had ONS.
Occipital Nerve Stimulation. He explained ONS and DBS.
I had no choice but to agree to it to get DBS if ONS didn't work.
However....you must have a full psychiatric evaluation.
So sent me and I passed with flying colors.
Because of the suicide rate with CH, he said no offence. its very expensive...I don't want you committin suicide if it doesn't work.
soooooo, first surgery ONS which was a trial and the neurostimulator-pacemaker was external and the electrode wires came out of my head. Had in 2 weeks.
Then I had DBS, got infection and then had it removed and then reinstalled, hence the 4 surgeries.
I can not speak for where you live, your insurance, your personal decision. But let me make myself very clear.
Whether it works or not. Your life will be FOREVER changed.
You need to think LONG AND HARD before doing this. Visit hospitals, patients whom have had this...see them in person.
I am the 2nd in Canada and at the time 17th on the planet to have DBS. Now approx I am 1 of 24 according to my surgeon whom has had this done.
I have the coolest surgeon on the planet. Great guy. Farthest thing from a surgeon you will ever meet. So laid back and treats you like a human being. However. I told him I would retire with him trying every approach we can with DBS (reprogramming) every 3 months until we find the sweet spot. DBS is Not an On OFF switch.
Its different than DBS on Parkinson for 2 factors. One where they place the electrode in the hypathalmulus and 2nd if the surgeon programs the stimulator and the patient stops shaking/moving. Then it works. With me its a roll of the dice.
My post/thread here is miniscule to my story, the surgery, how it happened and more.
please visit my blog and scroll down for topic subjects for more info.
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I also have videos on YouTube page under ClusterHeadSurvivor (no spaces)
I have one video that explains alot its about 28 min long called My life with Suicide Headaches aka Cluster Headaches.
I hope this helps answer some questions you may have.
Do not let em be the mitgating factor in your decision to have surgery. Just let it be a small part. I will nevr tell anyone what to do or how to treat cluster headaches. I only tell people of how I have experiences my life with them.
Best wishes in your decision.