Benefit to aid woman who has undergone 27 surgeries
As an 11-year-old child, Ashley Campbell wasn’t sure why she had terrible headaches or trouble concentrating in class.
Her parents and teachers assumed it was all part of being an adolescent and that she would eventually get through that “phase,” but a routine eye exam in 2004 ended up proving otherwise.
During the eye examination, Ashley’s eye doctor had seen that her optic nerve was completely compressed with swelling present – something that is usually indicative of a tumor.
Ashley was sent to Infants and Children’s Hospital where they ordered an MRI and a spinal tap.
After doctors received the results, Ashley and her parents, Jeff and Michelle Campbell, soon learned that her severe headaches and other symptoms were due to a very rare condition known as pseudotumor cerebri – something that isn’t a tumor but mimics the effects of a tumor in many ways.
“We were referred to Vanderbilt Children’s Hospital in Nashville,” Michelle Campbell said. “Spinal taps helped Ashley because it relieved the pressure from the fluid, but we found out that having shunts placed in different areas to drain the excess spinal fluid was the only way to consistently help her with the severe headaches she was having because of the pressure.”
Since her diagnosis in 2004, Ashley has undergone 27 surgeries to have shunts put in place or for routine maintenance to keep the shunts functioning properly.
“Whenever the shunt isn’t working, I just try to sleep or get as comfortable as I can,” Ashley said.
“We have a regimen we know to go through at home if that happens where we have to decide if she is experiencing low pressure or high pressure, and then we have to head to Vanderbilt,” Michelle Campbell added. “There have been times where we’ve had to go in the middle of the night just so that she could get some relief.”
Undergoing 27 surgeries in a period of nine years has definitely taken its toll on Ashley so she continuously researched the condition and ways other people were treating it.
“While she was doing some of her research, she came across something from Johns Hopkins that talked about a stint being placed in a person’s brain that suffered from pseudotumor cerebri,” Michelle Campbell said.
“Apparently Johns Hopkins began researching pseudotumor cerebri a few years ago and found out that blood flow restriction to a certain ventricle in the brain can lead to pseudotumor cerebri, and placing a stint into that ventricle can help.
“There was a video of doctors talking to a young woman about Ashley’s age with the same problem who didn’t want to go through the process of shunts, and it sparked Ashley’s interest.”
Michelle Campbell said they contacted Johns Hopkins Hospital in Baltimore to find out more about the process and see if Ashley would qualify to have the procedure done.
“They asked us to have her information and records sent from Vanderbilt and they would review everything and get back with us,” she said.
“They ended up contacting us recently and said after reviewing her information, they were optimistic they could help Ashley.”
Michelle Campbell said they are scheduled to take Ashley to Johns Hopkins Hospital in Baltimore on Oct. 15 where she would undergo several tests.
“They are the only facility in North America with the equipment to perform a certain scan that will look at even the smallest details of her brain and help determine exactly what they need to do,” she said.
“The doctor will then make his decision on how to proceed after he gets the results from the scan.”
The Campbells said they don’t know how long they will have to stay in Baltimore once they arrive on Oct. 15.
“They told us they don’t bring you to the hospital unless they think they can do something for you, so we may go straight into having the procedure done, but we just don’t know,” Michelle Campbell said.
“It will depend on what the scans show, and we’ll just go from there.”
Ashley, who is now 20 years old, said her condition has definitely affected her life and the lives of the rest of her immediate family members but she tries to stay positive.
“Sometimes it was hard when I was growing up, especially in middle school, because I couldn’t have much of a social life,” she said. “I was on homebound most of the time so the teachers came to my house and I had to stay inside a lot.
“But high school was a little bit easier and I met some friends who have really been there for me, and of course my family has been there for me too.”
The Campbells said their church family at North Highlands Church of Christ has also been instrumental during this process.
“I don’t know what we would do without our faith and without our church,” Jeff Campbell said.
“This has affected our whole family, but they have been so supportive to help with [our 13-year-old son] Hunter and with any other needs we might have when we have to suddenly drop everything and go to Vanderbilt.”
The Campbells said their church family and other friends and family members are stepping in once again after several of them found out about Ashley’s upcoming trip to Baltimore.
“They knew how expensive this trip will be for us and they wanted to do something to help,” Michelle Campbell said.
A yard sale and bake sale is planned for this Saturday, Oct. 5, at the Littleville Senior Center starting at 7 a.m. In addition to the yard and bake sales, they will also be selling smoked chicken plates from Whole Hog Express for $10. The plates include smoked chicken, baked beans, chips, a roll and white sauce. Plates must be pre-ordered by Wednesday evening, Oct. 2, and can be picked up at the Littleville Senior Center on Oct. 5 from 12-2 p.m. To order a plate, contact Pat Gilley at 256-762-8590, Amy Ford at 256-856-2488, or Michelle Campbell at 256-433-7211.