Patients can now get treatment in Tucson for rare brain disease

TUCSON, AZ (Tucson News Now) - You may have never heard of Moyamoya disease, and that's not surprising.

It's rare.

Perhaps eight people in the Tucson area could have the neurological condition.

Now, though, they and others with complicated neurological issues don't have to go to Phoenix or to another state to have life-saving surgery.

That's because the doctors, other trained professionals and the technology needed are now at the Carondelet Neurological Institute (CNI) on the campus of St. Joseph's Hospital.

Dr. Emun Abdu recently arrived in Tucson.

She is a neurosurgeon at the CNI.

Dr. Abdu specializes in the treatment of vascular diseases of the brain and spine, including Moyamoya disease.

Moyamoya is a dangerous brain disorder where blood vessels to the brain become narrow and eventually blocked.

The brain tries to compensate by growing new vessels.

"These are abnormal new vessels that form at the base of your brain to compensate for the blocked arteries so there's blood flow to the brain. But they're fragile and so they can either bleed or you can get strokes," Dr. Abdu explains.

Jennifer Holton is only 42 years old, but she had serious blood pressure issues.

She was on four different blood pressure medications.

She began to suffer strokes.

She was diagnosed with Moyamoya disease.

"Started to get some weakness in my left leg. So I went in and they did some testing and found that I had some strokes," Jennifer says.

Without surgery, the patient can become disabled.

Moymoya can even lead to death.

The quickest way to get blood to the brain is to do a bypass, using an artery that supplies blood to the scalp.

Dr. Abdu explains,"Disconnected it from the scalp then open the--took the skull off, got the brain exposed, found a good recipient vessel and then sewed them together."

Dr. Abdu points to a CT image of Jennifer's brain, near her ear, and says, "So here the scalp vessel comes into the brain on the surface of the brain. And I connected it to a brain vessel right here. So now it will give blood to the rest of the brain here. With time, that matures and you'll have increased blood flow to the brain."

Carondelet is one of only 17 facilities in the nation, and the first in the country, to have the advanced operating room technology to be able to use a full body CT scan to check on the success of the graft while the patient is still in surgery.

"We performed the bypass and it went very well. She went home, I think, in four days," Abdu says.

Jennifer must have regular checkups as she heals.

She says not having to travel from Tucson for treatment makes a difference.

Dr. Abdu says Jennifer is doing well and can start training again for her half-marathons.

"I'm like, absolutely. And I told her she can run marathons now. There's nothing stopping her," Abdu says.

Jennifer's brain surgery was just five weeks ago.

"It kind of makes me feel I've got the whole world in front of me again. I can go and be who I want to be and do what I want to do," Jennifer says.

Jennifer says she wanted to be interviewed for this report because she's concerned too many doctors don't know what Moyamoya is, and don't know to consider it when seemingly healthy patients have strokes.

Moyamoya can affect children and adults.

By the way, we're told Moyamoya means "puff of smoke" in Japanese.

It's what the tangle of abnormal blood vessels in the brain looks like on a scan.

A Carondelet spokesperson says Johns-Hopkins University Bayview Medical Center in Maryland used the Carondelet Neurological Institute as the model for its own similar program.

Johns-Hopkins also sent personnel to Tucson to train at the CNI.

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