Over­com­ing epilepsy: one man’s story

Wiarton Echo - - FRONT PAGE - ZOE KESSLER Edi­tor

For Daniel Koos, mak­ing a do­na­tion in the ex­act amount of $1,212.16 was not just gen­er­ous – but pro­foundly sig­nif­i­cant: this was the date Koos had brain surgery to treat his epilepsy.

Koos and his par­ents, Karen and Chris­tian Koos, own­ers of Lus­cious Bak­ery Deli Caf in Sauble Beach, raised the amount through a pur­ple rib­bon cookie cam­paign to sup­port Epilepsy South­west­ern On­tario.

“One in a hun­dred peo­ple are af­fected by epilepsy or seizure dis­or­ders and one in 10 peo­ple will have a seizure once in their life­time,” Bai­ley Tschir­sow, out­reach and events di­rec­tor with the or­ga­ni­za­tion, said in an in­ter­view at the bak­ery, Oct. 12.

Tschir­sow said the agency re­lies on com­mu­nity events and cam­paigns like the Koos fam­ily’s fundraiser.

“It’s a won­der­ful do­na­tion that will help our agency do fur­ther pub­lic ed­u­ca­tion and aware­ness ini­tia­tives,” she said.

Koos said it takes a lot of strength to bear wit­ness and be there for some­one go­ing through what he ex­pe­ri­enced. It was his mom’s idea to do the pur­ple rib­bon cookie cam­paign, he said (pur­ple be­ing the colour of epilepsy aware­ness).

As lo­cal business own­ers, Karen Koos said she and her hus­band want to be good cor­po­rate cit­i­zens and al­ways look for ways to give back to the com­mu­nity.

“The pur­ple rib­bon cook­ies seemed a per­fect fit with Daniel’s story and our ex­pe­ri­ences as a fam­ily,” she said in an email.

For Daniel Koos, it was a long road that led to his surgery on Dec. 12 last year – and to his abil­ity to help oth­ers who live with epilepsy.

Now 31, Koos started hav­ing seizures when he was 10 years old.

“At the be­gin­ning it was fairly in­tense,” he said in an in­ter­view.

At one point, Koos suf­fered grand mal seizures ev­ery cou­ple days, he said.

At 11, he was pre­scribed an­ti­con­vul­sant med­i­ca­tion. Even­tu­ally, the grand mal seizures less­ened to about one ev­ery three months, he said.

By age 16 and 17, he was seizure-free – and weaned him­self off his med­i­ca­tion. “I was 17 and stupid,” he said. His neu­rol­o­gist found out and as Koos was no longer hav­ing seizures (or so it was ini­tially thought) – his doc­tor took a “wait and see” ap­proach.

That’s when the “night ter­rors” started, Koos said.

He be­gan to scream at night and even­tu­ally was di­ag­nosed with “id­io­pathic noc­tur­nal epilepsy – mean­ing – his doc­tors weren’t sure what was caus­ing the new type of seizures.

When th­ese be­gan, the fam­ily ex­pe­ri­enced “sleep­ness nights and sad­ness,” Daniel’s mother Karen wrote in an email.

“The lion’s share of Daniel’s seizure ac­tiv­ity hap­pened dur­ing the night or early morn­ing hours, ev­ery night or sev­eral times per night, re­quir­ing us to spring out of bed at the slight­est sound to en­sure his safety,” she said.

“Sad be­cause this made it im­pos­si­ble for this bright young man to con­sider any out-of-town col­lege or univer­sity, as in­de­pen­dent liv­ing was too risky.”

In 2015, Koos was for­mally di­ag­nosed with tem­po­ral lobe epilepsy.

At 30, Koos re­ceived an an­te­rial tem­po­ral lobec­tomy – which re­moved the an­te­rior por­tion of his right tem­po­ral lobe and a part of his amyg­dala.

“[That’s] a fairly com­mon pro­ce­dure for treat­ment of tem­po­ral lobe epilepsy,” Koos said, adding the surgery has been per­formed since the 60’s and 70’s.

Be­fore the op­er­a­tion, he poured over med­i­cal jour­nals, re­searched the pro­ce­dure on­line and con­sulted with a team of physi­cians and sup­port work­ers.

Koos said he found a “zero per cent mor­tal­ity rate” in the stud­ies he read, with over 75 per cent of pa­tients ben­e­fit­ting from the treat­ment and very few wors­en­ing.

He also spoke with oth­ers – in per­son and in an on­line chat room hosted by the Epilepsy Foun­da­tion – who had al­ready had brain surgery.

But it was only when he met an 8-year-old cus­tomer at Lus­cious Bak­ery, where he worked along­side his par­ents, that his de­ci­sion was clinched.

“Imagine my sur­prise when I find out this amaz­ing, charm­ing, happy, hyper­ac­tive girl has had 17 brain op­er­a­tions,” he said.

“She said I could be brave like her.”

His con­ver­sa­tion with his young cus­tomer was about a month be­fore he re­ceived his surgery date, he said.

“It ce­mented my con­fi­dence that I could go through this for good or for ill.”

After the surgery, “I woke up with a lit­tle bit of a headache,” he said.

Hav­ing watched a video of another pa­tient who had for­got­ten the name of his wife after the same pro­ce­dure, Koos im­me­di­ately took stock.

“I wanted to make sure that I had what I truly trea­sured most still in there,” he said. “I didn’t think about my comic book col­lec­tion at all. I thought about my mom, my dad, my wife, my sis­ters – even my dog.”

Koos found his mem­o­ries in tact – and was able to leave the hospi­tal and go home to Wiarton where he lives with his wife, Jen­nifer, 48 hours after the surgery.

“I was lucky enough to be mar­ried to a per­sonal sup­port worker,” he said, adding he was grate­ful to be home, to be taken care of – and to have a sup­ply of his mom’s tuna noo­dle casse­role. This was espe­cially help­ful as he’d had his jaw mus­cle cut, mak­ing eat­ing dif­fi­cult, he said.

For about three weeks after his surgery he was “hy­per emo­tional,” weep­ing more eas­ily than be­fore.

He also de­vel­oped nau­sea as he was still tak­ing his med­i­ca­tions – but the part of his brain they had been tar­get­ing was no longer there, he said.

Koos re­turned to work with 37 sta­ples in his head – and a re­newed drive to con­tinue spread­ing aware­ness about epilepsy.

Koos said his par­ents also shared their sto­ries, as par­ents, with peo­ple who were just be­gin­ning their jour­ney, “not know­ing that it was go­ing to be a tough road – but see­ing that there was an end to that road.”

In only eight or nine weeks, Koos felt he’d “achieved nor­malcy.”

“Ex­cept the long­est last­ing ef­fects which are no more seizures,” he said.

He still cries a lit­tle more eas­ily and his ap­petite is slightly re­duced, but he con­sid­ers him­self very lucky. He is look­ing for­ward to be­ing seizure-free for a year – as of Dec. 12 – when he can get his driver’s li­cence and greater free­dom back.

Be­fore and after his surgery, Koos said the sup­port from the com­mu­nity was “flat­ter­ing and flab­ber­gast­ing.”

As for his par­ents, “We are elated and filled with grat­i­tude that Daniel has ex­pe­ri­enced such a pos­i­tive out­come,” his mom wrote in an email. “His surgery will per­mit him the in­creased in­de­pen­dence in his life that other adults may take for granted.”

Fe­bru­ary 12, 2018 is In­ter­na­tional Epilepsy Day.

ZOE KESSLER/WIARTON ECHO

Bai­ley Tschir­sow, out­reach and events di­rec­tor with Epilepsy South­west­ern On­tario, re­ceived $1,212.16 from Daniel Koos, at Lus­cious Bak­ery in Sauble

ZOE KESSLER/WIARTON ECHO

Daniel Koos dis­played his epilep­syre­lated tat­too and a pur­ple rib­bon cookie – used to raise aware­ness of the con­di­tion – at Lus­cious Bak­ery in Sauble Beach, Oct. 12.

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