At the beginning

I'm really not sure where to start. Six months ago I had a nine year old daughter who suffered occasional migraines and once in a great while would complain of motion sickness. Until April. It started with back pain, which I thought indicated a kidney infection...she was listless and irritable. A quick visit to after hours care revealed no infection, but the doctor on call noticed a very mild curve to her spine and said perhaps she was suffering from muscle strain and suggested mentioning a scoliosis screening at her next physical. Two weeks later, Rylee began complaining that she couldn't hear well, that her hearing was "mumbly" and "hummy". Another visit to the doctor and a referral to a Neurotologist. Hearing tests and ear structures all normal...he said "don't worry...maybe she has a little congestion..." Then her migraines began to increase from once a month to once a week...and then twice a week. And her back pain never, ever once help from tylenol or motrin. We scheduled a physical. Her doctor was pleased with her continued good health but troubled by these odd symptoms and sent her for an xray for her spine and referred her to Neurology. The day after her xray we received a call that she needed to go to Ortho as her scoliosis curve was greater than originally thought. Her orthopedists demeanor was rather dire...he was concerned by what he felt were all neuro symptoms and also by the degree of spinal curve in one so young. He ordered an MRI and told us he was going to call Neuro and tell them to move up our appointment. Rylee had her MRI and that's when her Ortho dr. noticed the Chiari. He said it didn't look overly severe...probably no more than 5 mm...but was still very troubled by what he felt was a "top down" problem. He put off scheduling her for a brace and forwarded all his notes and her tests and scans to Neuro.

And yesterday was Neuro. A very, very frustrating afternoon with a snippy 12 yr. old just 8 months out of residency Neurologist. I'm sorry if my sarcasm is offensive, but seriously...this Neurologist was without doubt the most clueless doctor I've ever met. I had spent the evening before our meeting reading a Chiari patient's horrifying as some of the symptoms are there was at least some comfort in seeing it all laid explained so much of what was happening with Rylee...the Ortho had been sure she had a tumor or cyst...but was ACM and all the symptoms were there, minus some of the more troubling ones. I felt we were very lucky that we were catching her in this now, before her symptoms were completely debillitating. The Neurologist completely dismissed it. Said that "Chiari wouldn't do all these things." So we're supposed to believe that our previously healthy little girl, who has never had a prescription medication/antibiotic in her life, just all of a sudden developed a random grouping of independent and unrelated symptoms. And that's how this doctor wants to treat her. No scheduled brain MRI...she doesn't think it's necessary because "it just doesn't always show everything." So she wants to give Rylee Elavil to combat the migraine cycle and help control her back pain. She wants to schedule physical therapy for her scoliosis (she has an Ortho and he didn't suggest this), she's scheduling an Auditory Brainstem Evoked Response test to further explore her hearing issues and prescribed a Phenergan topical gel compound to help combat her persistent motion sickness (she can't be in the car for more than 10 minutes without severe nausea).

I posted photos of my daughter and one of them shows her with her sister on the beach. Those were her last really happy days before everything started falling apart. This previously very active little girl rarely leaves the house now. She walks around with a heated clay pack strapped to her back and keeps begging to get the scoliosis brace, thinking that it will stop her pain. Two weeks ago we went apple picking, and just the action of pulling apples off the tree brought on a severe migraine that lasted two days. Last night Rylee took the first dose of Elavil and this morning awoke with a horrific bloody nose...she's been tired and lethargic ever since.

I'm not sure what to do next. I know this Neurologist will never work for us and I truly question her competency. By sheer coincidence a good friend whose son has a rare congenital disorder just happened to receive a referral to this same doctor and was there just a couple hours after our visit. She, too, was shocked by this doctor's lack of knowledge and even called her neurosurgeon to complain because he had sent her there.

I live in Ohio...I know there must be good care somewhere...I keep reading things about the Cleveland Clinic but I'm not even sure how one gets a referral. God bless the many of you who have been on this journey for much longer. Six months...six months of my nine year old's life...that's more than 5 percent of the time she's been on this earth. The Neuro we saw just had an "oh well, I'm sorry she's suffering" attitude but didn't seem to care a bit about her pain. Praying that we will find a physician with a healthy dose of compassion...

Hi Rylee's Mom,

Your daughters story is all too common. I am so sorry she is feeling so bad & you are frustrated & feel like you are getting no where. I am adding a link for the Cleveland Clinic appointment information. Your daughter really needs a Pediatric Chiari experienced Neurosurgeon or Neurologist to see her. Please let us know how you are both doing.

Tracy Z.

Hi Rylees mom,

It is so hard seeing your previously healthy child start having all these horrific symptoms and not get answers. Get copies of her MRIs and you can send them to Cleveland Clinic, or Chiari Center in Wisconsin, or where ever you feel. I also googled pediatric chiari neurosurgeons in MN and personally emailed the Chief Neurosurgeon because it was a Sunday when we received the diagnoses and I was scared to death. I told him the herniation and the size of the syrinx and really wasnt expecting to hear back but when I woke up he had responded and said his staff would contact me to schedule a consultation. They did call and scheduled us in that week. He spent over an hour going through Drews MRI with us and explaining it in our terms and told us he needed surgery soon because of syrinx and we scheduled it 3 weeks later. We sent his MRI to WI and contacted Mayo as well but we felt a great connection to the Dr at UMM Childrens Amplatz. I think as parent we know and if you arent feeling it with the first neurosurgeon follow your gut and find someone else. Drew is now doing great 3 months out and his headaches are gone and other symptoms seem to be going away as well. We get another MRI this week to see if syrinx has gone down. Good luck and keep fighting for answers for your sweet daughter. Drea

I'm not sure what part of Ohio you are in. I am a patient of the Mayfield Chiari Center in Cincinnati. I see on their website that they refer children under 13 to Cincinnati's Children's hospital.

Rylee's Mom,

There is help out there for your beautiful girl. There is nothing worse as a parent than seeing your kids suffer and struggle. Most neurologist don't see enough Chiari patients to know what they are talking about. It's frustrating, sad and borderline abusive the way we are treated. The good news is that there are far more great pediatric Chiari specialists than their are for adults because they catch it so much earlier now. Tracy's advice is always excellent and Drealynn also has some great doctor tips. You are going to have to do research and get several opinions before you find the right fit for Rylee and your family. I've included a link of patient recomended Chiari doctors. There are quite a few of them in Ohio. One tip that I have learned is to do a search of the doctors name followed by Chiari and most of the time patient experiences and reviews pop up in the search. It just gives you a little more information. Kids usually fair much better than adults because they haven't had decades worth of damage done and because of their youth bounce back much quicker than we do. In the Resources section is a link that helps you prepare for your visit so that you get the most out of the appointment.

I wish you good luck. I wil pray for you and Rylee. I can feel the love you have for her jump off the page. We are all here for you and we will continue to support you as you go through this.



Rylee's Mom,

I have another link for you. : ) Joalexa mentioned that there was positive stories of kids having surgery and going back to their lives on the Cornell Weill site. So I looked it up and thought you would be interested in reading them.