View Full Version : Chiari Malformation in the News

02-15-2005, 11:47 AM

PORT CLINTON -- Nicole Ford, a 16-year-old sophomore at Port Clinton High School, is preparing to under go brain surgery Thursday at the Cleveland Clinic.

Nicole was originally diagnosed with Scoliosis, a curvature of the spine, two years ago when she began to experience extreme headaches and loss of mobility. She began treatment at the Shriners Hospital in Pittsburgh. But her condition did not improve and on Sept. 10, 2004, while performing as a member of flag corps during a football game against Genoa, Nicole collapsed and was taken to the hospital.

Then on Dec. 13, Nicole underwent a MRI scan at St. Vincent's Mercy Medical Hospital in Toledo. Three days later, the Ford family learned from their local doctor, Carl Steele, that Nicole suffered from Chiari type One malformation -- a rare condition where the brainstem is displaced downward, putting pressure on both the brain and spinal cord and also constricting the normal flow of cerebrospinal fluid. The condition is progressive. Without corrective measures, Chiari Malformation could lead to paralysis, doctors say.

"We were concerned when Dr. Steele said they had found something and that we should come into his office," said Nicole's mother, Donna Ford. "It was then that we realized it must be pretty serious."

Nicole's father, Jeff Ford, said, "It's a pretty rare thing. Dr. Steele told us that in his 25 years of practice, Nicole was only the third case he had seen like this."

Dr. Mark Luciano of the Cleveland Clinic is scheduled to perform the procedure. He has completed more than 60 such operations with a 98 percent success rate.

Recovery time during the post surgical period is expected to last at least six weeks. Physical therapy, additional treatment, testing and monitoring are all part of the healing process.

Exact details, such as time of the surgery and possible projected difficulties, will not be known until an additional MRI scan is performed on Feb. 16, one day prior to the scheduled procedure.

Despite the challenges that Nicole's immediate future holds, her spirit remains strong and undaunted. When asked how she felt about the upcoming surgery, Nicole smiled and said, "I'm a little scared but I'm staying positive."

"She has a smile for everyone she meets," said Nicole's father. "She's the most unselfish person and always puts the welfare of others before her own. We're very proud of her. She has a huge heart."

Friends and family members have come together to help. Bobbie Riesterer, who came to know Nicole through her involvement with the school's flag corps, has put together gift baskets that were auctioned off at the school's winter formal dance.

"Nicole has a very generous and kind heart," said Riesterer. "I've seen Nicole take on projects and see them through even when she had to do it on her own. I just wanted to do something to help her."

Long time friends of the Ford family, Kathy and John Drummer, have agreed to take care of Nicole's siblings, 13-year-old Katrina and 6-year-old Wesley, while Jeff and Donna travel to Cleveland to be bedside for the operation.

Fellow students at the high school have also stepped up. Donations have been made by the school's band, Leadership Council and flag corps.

"We want to thank everyone in the community who has come forward to help," said Jeff Ford. "It really has meant a lot."

10-10-2006, 04:15 PM
My daughter has scoliosis and was found to have a syrinx, Syringomyelia, and Chiari I. We saw a pediatric neurosurgeon today and she will need surgery. It is good to get all the information we can, and every article provides more. She has no other symptoms, but do not want any others to surface either. Thank you for all your valuable information you have posted on this forum.

10-13-2006, 03:40 AM
[B]I have Chiari I Malformation and syringomyelia. I was just diagnosed. I have has symptoms for six years. My symptoms are progressing rapidly now. Did the girl mentioned in the article have her surgery? Did she have a favorable outcome? Please let me know as I am facing this surgery soon. Thank you!

11-06-2006, 08:44 PM
My daughter will have Chiari I surgery on December 4th. She has a large syrinx and Scoliosis with a rapid progressive curve. She has no other symptoms yet, but both pediatric neurosurgeons we went to said she needed this surgery and it couldn't wait until Spring or summer. She is not a back fusion surgery candidate yet, but may be within the next couple of years. She has seem three pediatric orthopedic surgeons, who all seem to agree it may progress more. The two neurosurgeons say this surgery may not halt the progression of the curve either. We need to concentrate on this surgery correcting the spinal fluid flow to "flatten", drain the Syrinx first. It will take time, and in 3 months hope to see the pocket of fluid draining itself after surgery.

11-17-2006, 09:09 AM
I'm having the decompression surgery in 4 days, lol. I was diagnosed in August, after wearing a brace for my scoli for 8 years. I'm nervous for the surgery, but glad to have this all almost behind me!!!

11-18-2006, 10:12 PM
I'm having the decompression surgery in 4 days, lol. I was diagnosed in August, after wearing a brace for my scoli for 8 years. I'm nervous for the surgery, but glad to have this all almost behind me!!!

I am glad you are now getting surgery you need, even though I'm sure you prefer no surgery. I wish you the very best. When you are comfortably recovering, let us know how you are. I will keep you my thoughts and prayers. We too are wanting to get surgery behind us soon too! Take care!

12-16-2006, 04:05 PM
I know this is very old, but I was wondering how your daughter is? I'm doing ok, I'm 22 days post op. My surgery was more severe than anticipated and he had to go through the dura. My only complications were issues with breathing post op (but once they put the breathing tube in a 2nd time, it was ok) and motion sickness. I hope your daughter's surgery went well too!!!

12-18-2006, 10:31 PM
She is going for her Follow up on Wednesday, December 20th, and hopfully looks as well as she feels. She had a lot of pain and nausea the first two days, but after that it has been better each day. She did have a small part of her brain tissue, small part of skull bone, and small part of C1 removed. The doctor said one ventricle was blocked like a cork in a bottle. Everything went very smoothly. I am sorry for your complications, but glad you are doing well. Got your private post and gave you this info. My daughter is sure glad to be over 2 weeks post op. I'll let you know how it goes, and you do the same.

01-15-2007, 05:14 PM
Oops....I had scoliosis (had spinal fusion... so the scoliosis is pretty much gone) and I have a syrinx...a large one! From reading all of the above...I'm wondering if having the spinal fusion before having my syrinx taken care of could be an issue.

Is it true that you need to fix the syrinx BEFORE the scoliosis?

So.....what if the syrinx is a problem....and I already have rods in my spine?

Oh boy...I am worried now :(

I'm seeing my family doctor this week hoping to be reffered to someone who has more knowledge in this field. I've been having sever headache every day for the past 3 weeks and a strange pain in my neck on the left side when I cough and/or yawn.

Am I screwed here, or is it okay to have spinal fusion with a syrinx?

Any info would be GREAT!!!

- Sorry if this sounded rather negative

02-26-2008, 12:50 PM
See www.asap.org for information on Chiari CM or Syringomyelia SM which can cause scoliosis.