President and Founder
Executive Vice President
Billy "Joey" Rowe
Hello..I am married with 2 kids, a 10 year old girl and a 13 year old boy. I am originally from Maryland but now live in Charlotte, NC. After being a sickly child I did not find out that had anything wrong with me until my family doctor found Chiari in 2001. They found, after multiple visits that I had Chiari and Tethered Cord Syndrome .I was decompressed in October 2005 and had Tethered Cord Syndrome surgery in August of 2006.
My surgeon and his team tried everything other than surgery to alleviate my symptoms. However, there efforts were not successful. I then became I candidate for surgery. After being decompressed a lot of my symptoms went away other than headaches that are a lot fewer than before surgery, balance, and mostly leg pain. I then went back and they found I had Tethered Cord. That surgery was preformed but had no relief of my leg pain. However, I can tell that things have stabilized and are not getting out of control as they were before. I, as well as 3 different doctors feel that the tethered cord surgery has stabilized me to where I can at least walk, even with the pain, can urinate even if I still have some problems, as well as helped stop the damage that was being done by the cord being pulled on. Even with the decompression, it took away only a few symptoms, some got a little better, and some stayed the same. However, before I had the surgery I was going down hill very fast and was almost in a wheelchair. So, I am so glad that I had the surgery done when I did as I think I would be in much, much worse shape than I am now.
In July 2015, I had a cervical fusion to further alleviate symptom associated with Craniocervical Instability. It has helped somewhat but I still have numerous problems that will never go away. So, running Chiari Fund can be hard at times. I do have the ability to do what I can and when I can so that helps me do my job better. The vision of the organization came from my own experiences with having Chiari and Related Disorders. I have seen first-hand how many people need help in obtaining the appropriate care they deserve. Money should never be an obstacle for anyone to receive the best care and see the best doctor to take care of their condition. I saw this as a void in the community and thereby Chiari Fund was born.
My Chiari was diagnosed following a small stroke in 2000. They didn't feel it was significant, and although it was written in my medical records, it was called "incidental Chiari", and passed over as a cause for any of my issues. Neither my wife or I remember it even being said. Anyway, It got worse, and led to a lot of problems that mimicked psychological issues, as well as physical ones. I have several psychiatric diagnoses ranging from bi-polar, ADD, as well as several other codes from the DSM. Following the small stroke in 2000, I was not able to work for about six months. I was a Licensed Addiction Counselor at the time. My employer held my job until I was able to return. Headaches got worse after this. Despite headaches, neck pain, constant vertigo, and massive trouble controlling my emotions - ranging from severe depression to anger outbursts over trivial things, I was able to continue my employment, and was promoted to clinical director, and eventually became the Executive Director at Rocky Mountain Treatment Center in Great Falls MT. This was my dream job, and I was very good at it.
Despite that, by 2006, my issues had progressed to the point I was missing a lot of work, and simply not performing the way I needed to in that capacity. By this time, my employers were not as amenable to waiting for me. In fairness, neither them, or myself understood why my health was failing me. I was fired. That was June 6th 2006. My employer was very angry at me over missing work, and the issues caused by that. They fought against me receiving unemployment, and I lost. The determination was due to the fact my employer could afford a lawyer, and I didn't think I needed one. I did seek legal advice about a wrongful discharge, but despite the unprofessional behavior of my employers, the simple truth was - I could not do my job as well as I needed to. I dropped the issue because I needed to figure out my medical situation, and started doing odd jobs for family and friends to put food on the table. I took all the resources we could put together, and moved our family to a very small town where the cost of living was lower, and there was a good school. We bought a house that needed fixed up. We received welfare for two years. I filed for Social Security, and eventually was approved, but lost our home, and one of our two vehicles to repossession during the interim. This was a very ugly period in our life, but also ended up with some very positive outcomes. The small town life was better for me, and it truly taught me what humility is. Our kids didn't like living in such a rural location, but they all coped with it, and actually excelled in high school here. From that time, until 2013, we simply dealt with my issues through a variety of doctors, and regular sessions with my psychiatrist. I still see her. I have for 15 years now. I tried counseling for depression, and my tendency to cry for little to no reason, among the other problems I mentioned. It simply did not work. I overwhelmed the counselors, and they just sent me back to the psychiatrist (Dr Caulkin is her name) ( I'm trying to give you the abridged version of all this . . . I can be a bit wordy).
Following a hospital stay for the worst headache in my life, in 2013, a nurse mentioned the Chiari diagnosis to my sister, who also happens to be a nurse. Neither my wife or myself had heard of Chiari until that point. This time, as we discovered later looking through medical records, the Doctors called it "Mild Chiari". The neurologist, and neurosurgeon I saw in Great Falls, MT did not believe Chiari was causing any of my issues with the exception of sleep apnea, and some choking when I ate. In Montana, my tonsils were said to be "barely diagnosable"at 5mm. They were off by 10 mm, as mine were 15 mm, and many other related issues were addressed either by Dr Oro, or a Dr in Great Falls. I can't remember what the Dr in Great Falls diagnosed me with. I think he just xrayed vertebrae in my neck under a cat scan. He found nerve damage, but that has not been addressed, and still causes me a lot of pain.
Despite the fact that I was incredibly angry at both the neurologist, and the neurosurgeon, they actually did me a favor, because it was their lack of knowledge, that prompted my wife and I to start researching Chiari, and ended up sending my records to Dr. Oro. I sent him my medical records, and went for an evaluation in late 2013. I just felt comfortable with Dr Oro, and his staff, and he felt very confident he could help me. I had surgery in January, 2014. My recovery went well, and followed the timetable relatively close to what I expected. By mid 2015, I was doing really good, and was contemplating returning to work. I planned to become a financial advisor. I studied for the exam, but before I actually returned to the workforce, I started experiencing some symptoms reminiscent of pre surgery. I talked to my general physician, and psychiatrist, about the problems, and just hoped it was short lived. It has been better at times, than others, but my goal of returning to work didn't happen. Now many of the problems I originally had prior to surgery have returned. My thinking has gotten very "foggy", and I become very shaky after minimal physical activity. Headaches have returned, along with some of the emotional issues that had gotten much better following my recovery. (If more detail is needed please let me know).
I now am trying to gather resources to travel to a new neurosurgeon as Dr Oro has retired. I am scheduled for an MRI on December 29th and will send that off to either the Mayo Clinic in MN, or possibly Dr. Bolognese (sp) in New York. I've heard many good things about him. We are still looking into all options and would really appreciate any feedback you may have. Any monies I am able to procure, will be used specifically for travel expenses, such as gas, food, and hotel expenses. In addition to this I do not have the money to pay for a doctor to assess my MRI.
Any assistance you are able to provide me would be greatly appreciated, whether that be monetary assistance, or moral support, and prayers.
Thank you very much for your time, and consideration of this matter.
In 2010, for my 30th birthday I learned that I had Chiari Malformation. It was an unexpected birthday present that I was so happy to get. Most people might feel like having Chiari is a curse but not for me. I finally had a name to what I have been going through all my life.
My journey into life starts with a birth in a car, a Ford Fairmont on the streets of San Francisco. When I made an early arrival into this world, we were still 10 minutes away from the hospital. When we finally arrived at the ER, they were actually able get the cord, still in the car and I was then whisked away to ICU.
While at the hospital, I had all the traits of a preemie baby, but was in fact “two weeks”late. I was whopping 5 pounds and I could fit in the palm of your hand. I spent many weeks in the ICU, they had detected a heart mummer and was fighting for my life. My mom noted, she thought something else was wrong when she looked at my head, She told the Doctor, “…it looks like her head is misshapen...?” Back in the 1980’s checking for Chiari, wasn’t even on the radar – I wonder if it is looked for today? My first year I had all the classic symptoms: fussiness when being fed, crying more then the usual baby, trouble gaining weight, and developmental delays. The doctor’s just told my mom that “she will grow out of it or due to the nature of my birth she was just angry from all the trauma”.
As I got older, things didn’t improve, in fact, it got worse. My childhood was not a typical childhood. I had horrible issues with loud noises, sensory issues, tremors, difficulty speaking (years of speech therapy), ADHD, learning disability and vomiting. They used to find me head banging or find me with blankets over my head rocking saying “…It hurts, It hurts…” I always would throw a fit when I had to put my hair in a ponytail, headbands, or in bun. I can remember the pounding my head would feel when I would have my hair up or the pressure of the headband behind my ears. I have always had a ringing in my ears or the sound of swishing in my ears. I thought that was totally normal. I once held a seashell to my ear to hear what the ocean sounded like and remember thinking “I hear that all the time”. Chiari mimics so many symptoms that the doctors would tell me it was just something else or they would have no answers. My blood work would always come back in range, so they were unsure what was going on with me.
By the time I was a teenager I got used to a lot of the symptoms, like body shakes, the noises/ringing in my ears and head. Visually, I’ve always so halos around lights as another example. I was basically was just living with these issues in hope that one day that I might know what was going on. I made a lot of adjustments to my life; I would always stay away from loud situations, learning to live with headaches everyday, stopped having my hair up, etc., after a while all of this became normal. In High School they always made adjustments to my learning style with no time requirement for tests, I never had to use those scan-tron sheets for tests, didn’t have to take a foreign language, or PE. Through High School I always felt different but just learning to deal with my health. It was totally normal for me, this was all I knew, as well as my body.
Through my 20’s my life was just normal for me with all these issues: Neck/ Back pain was painful, but normal for most of us, my head always hurting, having perception issues, always being cold, the extreme thirst/ feeling of dehydration, vision issues, body numbness, ringing in my ears, halos over lights, dry skin/hair, and sound sensitivity. However, I always kept hope that one day things would get better but if not, I was used to this life, as it’s the only one I’ll ever know.
Right around my 30th birthday I went to see neurologist to help me with the tremors I was having. I have had them all my life but for me they were getting worse. They sent me over to get a MRI to see what was going on. The Doctors wanted to see if the loss of a far amount of oxygen during birth may be a cause and they wanted some kind of a baseline. The doctor told me that he would call me when they got the results from the radiologist.
I was shopping at Target when I go the phone call... I ran outside so I could hear him clearly – results I’ve been waiting a long time for! The doctor then went on to tell me I had “Chiari Malformation” at 12mm. I remember asking him to spell it because I had no idea what the heck it was. He told me to go home to Google and with that basically told me “good luck”. When I got home that night I looked up everything about it. For the first time in my life I felt like I was not crazy and it was such an unexpected gifted to finally, after 30 years of living with the myriad of issues – to finally know, know what I have been dealing with and it’s name!
The days of doctors saying “well, good luck with that” need to stop. There are too many of us suffering and countless others undiagnosed (like myself, until age 30).
I just wanted to take a moment and tell everyone a brief background of my life with Chiari. It is a pleasure to have meet so many of you and look forward to meeting everyone.
Hi, I'm Barbara Rowe, Joey's Mother.I have been married to my husband, Billy Rowe, for 41 years.We have three children, Missy, Joey, and Becky. I was born and raised in Maryland for 40 years. We moved to Salyersville, Kentucky in 1991. We live on a farm and raise horses.
In 2001 my whole world was turned upside down. Joey discovered that he had Arnold Chiari Malformation. Joey had many health problems as a child, but of course. was never diagnosed .As he got older, he would have terrible headaches. We would take him to the ER,but the doctors would never take tests. They would just give him medication and send us home. Sometimes, but not very often, the medications would work. As a mother, it was so frustrating seeing your child suffer and not knowing what to do for him. Joey's legs would also hurt a lot.We took him to several specialists, but again, no one could give us an answer to why Joey was hurting so much. In his early 20's, Joey saw a neurologist and to our disbelief he told us what Joey had, but would not explain what it was. The doctor stated that if one day, Joey got out of bed and could not walk, come back and see him. Our journey was just beginning. He then saw an internist that studied his MRI and discovered he had Chiari. She didn't know much about it. Joey did his own research and found a specialist in New York. From there, it is history read Joey's Bio.
Then in 2015 our oldest daughter, Missy, discovered that she too had Chiari. We couldn't find a neurologist in Kentucky that had any knowledge about Chiari. They had heard of it, but knew very little about the disease, and as usual had no desire to learn about it. In July 2015, we went to New York and Missy had surgery on the 15th and Joey on the 16th. What a nightmare. Both Joey and Missy still have symptoms, but not quite as bad as they were.
We need to raise money for Chiari Fund, to help those suffering with Chiari that are in desperate need of help.If there is anyone of you, that would like to help raise money for the Chiari Fund, PLEASE contact us. We could really use your help.
Fundraiser Co Coordinator