Cowichan Valley man vows to tattoo himself with initials of donors to his brain surgery plight

Curt Knippelberg will never forget the people who help him get life-altering brain surgery.

And to make sure he doesn't, he's vowed to tattoo his body with the initials and entire names of many of those who help him raise the $150,000 he needs to have a cyst removed from deep inside his brain.

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"I wanted something that would really show people how far I'm willing to go for this," the 22-yearold bartender said.

"And for those people willing to help out, just saying thank you is not enough - I want to be able to show people how much I appreciate their help with this."

"This" is a pineal cyst, roughly one-centimetre in diameter, that's between the hemispheres of Knippelberg's brain on the pineal gland, a small gland near the centre of the brain that produces melatonin.

Smaller cysts - those less than .50 centimetres -usually have no affect.

But for larger cysts, like Knip-pelberg's, symptoms could include headache, visual disturbances, light sensitivity or other conditions.

While the effects of pineal cysts are debated in the medical community, Knippelberg said he does suffer headaches, dizziness and other vertigo-like symptoms - afflictions he believes are caused by the cyst.

"It's like an athlete's worst night-mare," he said.

Knippelberg, the eldest of three brothers born and raised in the Cowichan Valley, was extremely active in sports.

"I grew up playing rep hockey and I liked it, but I never really had a true passion for it," he said.

"I started boxing when I was 13 and I loved that, but when I was 16 I started jiu-jitsu and loved that."

That's about the time he started getting the symptoms that grew worse when he did anything physical, a situation that forced him to quit sports and give up on his dream to be a jiu-jitsu world champ.

A battery of tests followed, but nothing was found to explain Knippelberg's fatigue and other symptoms.

Doctors found the cyst about two-and-a-half years ago, but don't believe it's responsible for Knippelberg's problems.

"Since then it's been a gong show trying to make anything happen up here [in B.C.]," said the Cobblestone Inn bartender.

Canadian doctors can remove the cyst by peeling back a flap of skin, taking out pieces of the skull, and moving the brain to get at the cyst.

However, the risk of neurological side effects - such as facial paralysis - is great.

It's also a procedure Knippelberg will not receive in this province.

"The bottom line is [B.C. doctors] won't do the surgery and they're advising against it," he said.

"I've been to doctor upon doctor and I've had a whole body scan MRI and there's nothing else that can be found, but there's a cyst there and it's the only thing it can be."

Enter Dr. Hrayr Shahinian, the affable Los Angeles, Calif.-based founder of the Skull Base Institute.

He's also the man who invented an endoscopic method of using micro-instruments to enter the brain through a small hole in the skull to remove tumors and perform other neurosurgical procedures.

"Most of these kinds of cysts are asymptomatic, and we don't do anything about them," said Shahinian.

"But there are people, like [Knip-pelberg], whose symptoms make sense," he said, listing indicators such as visual disturbances and vertigo as symptomatic of a pineal cyst.

The doctor said he reckons he's performed "between 300 and 400" pineal surgeries, including removing cysts and tumours, during the past 15 years or so.

"The way we do it is much less risky than the traditional way they do it with open brain surgery, which means you have to open the back of the head like the hood of a car, and push the brain aside."

While there is debate about the effectiveness of the surgery, Shahinian said the response from his patients is crystal clear.

"I have never had a patient with this type of lesion come back and tell me: 'I feel the same, you have not helped me.'"

And that's good enough for Knippelberg.

"The way I look at it is I've spent five-and-a-half years looking for any other thing that could be causing these problems," he said.

"I know it's going to work."

To see a video Knippelberg made about his situation, or to donate, log onto www.indiegogo. com/tattoostotrain

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