This Week News: Ohio Woman Walks for IH Awareness
Young resident suffering from rare disease aims to raise funds, awareness
September 27, 2007
By Robert Paschen
(Editor’s Note: This story originally appeared in This Week News, Columbus, Ohio.)
When area resident Lynnsey Schemrich found herself inside a medical helicopter in October 2001 en route to hospital after a head injury from a bike accident at Deer Creek Park, little did she know that this was the beginning of a long journey of countless surgeries, of lost friends, lost school, of persistent pain and torment.
“I went left of center to not get hit by a truck and hit my brother on his bike and hit my head on the concrete,” Schemrich, now 20, recently recalled of the accident when she was 13.
At Columbus Children’s Hospital, “I started having real bad headaches. I lost my vision. No medications got rid of the headaches.”
The doctors had a hard time pinpointing the cause of her discomfort. A neurosurgeon then gave Schemrich several spinal taps. Doctors soon determined that she had intracranial hypertension, a rare disorder in which the body produces too much cerebral spinal fluid, causing blinding, debilitating headaches.
“These are probably the severest headaches known to mankind,” said Dr. Emanuel Tanne, president of the Intracranial Hypertension Research Foundation. “They are many times worse than a migraine. No medication works. The headache is often described as feeling like a hot poker being driven into the head. These patients suffer terribly.”
Intracranial hypertension, or IH, affects tens of thousands of Americans, Tanne said, but is still a far under-researched disease. The disorder can be caused by head trauma or come about seemingly spontaneously.
“This is a disorder that has fallen through cracks both from the point of research, awareness and physician education about it,” Tanne said.
Now, Schemrich is on a local crusade to help raise money and awareness for IH.
On Oct. 6 she will lead Walking for the Pressure, a walk through Grove City aimed at drawing greater attention to Intracranial Hypertension. The event begins at 11 a.m. at Windsor Park, 4330 Dudley Ave.
Schemrich said those interested can bring donations with them to the walk, can give money online at ihrfoundation.org, or by calling her at 774-1175. A picnic lunch will be held at Windsor Park following the walk.
“IH has been described for more than 125 years,” Tanne said. “We are still pretty much far behind the curve on this disorder.
“The patients become unable to exercise. It’s not uncommon for a mother to say that my daughter was thin, played tennis, ran track in high school, was a good student, and now has these crippling headaches. She can’t go to school any longer. She’s disassociated with friends. She can’t socialize. Patients’ major complaint is that they want their lives back. No drug company has bothered to put forth the effort to design (an IH) drug.”
Tanne’s daughter suffers from IH, and he co-founded the Intracranial Hypertension Research Foundation.
After being discharged from Children’s on her 14th birthday, Schemrich said her headaches became so severe that she would spend day after day lying in her dark bedroom listening to music turned low.
“It was like there was too much in my head and there wasn’t enough room for it,” she said. “I couldn’t lift my head.”
The body produces and absorbs cerebral spinal fluid several times throughout the day, Tanne said. But in those with IH the fluid builds and builds in the head and spinal column.
“I had a shunt put in my head,” Schemrich said. Sometimes when the pressure became too high, she would go temporarily blind.
But all this, still, wasn’t enough.
Surgeons felt they needed to remove part of her skull “to give my brain more room.” The shunts were working, but Schemrich’s suffering persisted.
“They weren’t sure exactly what was going on, so they decided to take pieces of my skull out.” A quarter-sized piece of skull was removed from both of her temples.
“They took a hammer and a drill and they tapped it and it broke into pieces and they took it out.”
Now, finally, Schemrich has stabilized.
“I haven’t had a headache in 12 weeks, and that’s the first time in six years,” she said.