On Saturday, September 17th, Ray D'Alonzo, a clinical researcher at Procter & Gamble Pharmaceuticals, will attempt what perhaps no other post-surgical Chiari person has done.  That day, Ray will run the Air Force Marathon in Dayton, Ohio. 

Not only will Ray's run cap his comeback from Chiari surgery in 1999, but he will be running for everyone effected by this disease.  Ray is raising money for the Conquer Chiari effort with his marathon effort.  If you'd like to support Ray, simply fill out our on-line pledge form.

We asked Ray to tell us more about his personal experience with Chiari and his desire to Conquer it through running...

Why a marathon?
It’s a question of wholeness. I was a marathon runner before my symptoms emerged. I want to be whole again, complete again. I also want to give hope to others with Chiari. If I can run a marathon they too can improve significantly, perhaps more than they realize.

When and how did you learn you have Chiari?
I did not know what was wrong at first. I did know something was very wrong however because the sensations that I was feeling were like nothing I had ever experienced. I was not diagnosed until 15 months after my symptoms first emerged even though I had gone to several doctors. I had concluded on my own that something was wrong with my brain so I went to a brain surgeon here in Cincinnati. At first, he did not recognize my constellation of symptoms but he ordered an MRI. The MRI, of course, showed the presence of the malformation. Fortunately, the neurosurgeon was very familiar with Chiari and had even published about it so I lucked out. After being labeled as clinically depressed for a year, I was totally relieved to have finally had an accurate diagnosis.

What types of symptoms did you have? What was your quality of life like?
My symptoms started suddenly with insomnia and soreness upon swallowing. Every time I swallowed, it felt like someone was sticking a knife in my throat. This was followed by pain in the left side of my face and left ear, tingling and numbness in my hands and feet, upper body weakness, frequent urination, lower body weakness, nausea, and several other symptoms. The weakness progressed to the point where I came home from work one day and collapsed. I could no longer work. I could not socialize. My life was totally upside down. Oddly enough, I did not have headaches which probably threw the doctors off in their initial attempts to diagnose me.

Did your symptoms resolve right after surgery?
Some did and some did not. The facial, throat and ear pain was gone immediately. My strength returned to acceptable levels in 9 to 12 months. Insomnia and fatigue persisted for several years. I tried many medications known to promote sleep. These included trazadone, Ambien, Sonata, Restoril, Ativan, Klonopin, Elavil, Remeron, Anafranil, Neurontin, BuSpar, Zyprexa and others. None were particularly effective although Zyprexa seemed to help a little. The only drugs I take now are for my high cholesterol and glaucoma. Interestingly, I experienced some new Chiari related symptoms after surgery. Food would stick in my throat which persisted for a couple of years and I had ringing in the ears which continues to persist albeit very mild.

How long after surgery did you start running again?
I walked at first. When I returned home from the hospital, I walked outside every day. At first, I could only walk about 100 yards but after 5 weeks, I was walking 2 miles a day. After a year of walking, I began to ride a bike and I continued to ride my bike for another year. At that point, I began to jog very carefully on a treadmill.

What was it like the first time you ran?
Actually, it felt good immediately afterwards. However, that night I couldn’t sleep at all. It intensified my insomnia. It was as though it excited my nervous system and it couldn’t calm down. That phenomenon plagued me for several years. Every time I increased my distance or speed, I couldn’t sleep. As a result, I couldn’t get the rest I needed to recover and my progress was very slow. The problem finally faded away earlier this year.

When did you first get the idea to run a marathon?
I first entertained the idea of running a marathon last year when my weekly running distance reached 25 miles.

How are you training?
Since I ran marathons in the past, I know what it takes. For me, I need to be running a minimum of 40 miles a week. I’m currently running about 43 miles a week. I devised a schedule whereby I increased my distance 10% per week over the last couple of months. This gradual rate of increase avoids injuries. I also do not run the same distance every day. I mix it up but I do a very long run once a week and I increase the distance of that run every week. Two weeks before the marathon, my long run will be 16 to 18 miles. I also weight train twice a week and stretch every day.

Do you get any symptoms when/after you run?
No, I don’t. As I stated earlier, the running used to intensify my insomnia but it doesn’t do that any longer.

A lot of people who end up with few or no symptoms tend to move on and forget about Chiari, why did you decide to become active?
Chiari is misdiagnosed too often and poorly understood by medical professionals in general. As a result, too many people are needlessly suffering. As a health care professional myself, I find this unacceptable. Patients with pinched nerves or carpal tunnel syndrome receive better care and attention than many patients with Chiari who have the granddaddy of all nerves “pinched”, the brain stem. When you think of it that way, it makes no sense and it must be fixed.

What would you say to someone facing surgery?
The acute pain and discomfort of the surgery is far kinder than the progression of the syndrome. Don’t let the syndrome drag you down and steal your life. Go for the surgery and fight back.

Have you thought about what it will be like to cross the finish line?
Yes.  I will close my eyes and thank Almighty God for working through others to cure me and giving me the persistence to recover.

What would you like to accomplish with the funds you are raising?
A longitudinal MRI study is needed. By that, I mean that a cohort of children or young adults with the malformation need to identified and scanned annually by MRI until symptoms that require intervention emerge. This way, the changes that contribute to hindbrain compression can be observed. If we understand those changes, it may be possible to prevent them. Such a study will be very costly and require 10 to 20 years to complete but would be worth it. While my run can not raise the amount needed for such a study perhaps the money raised could be added to other funds it make it happen.

Let's all support Ray in his efforts to Conquer Chiari, both personally, and for others.  To make a pledge, simply fill out the on-line pledge form.  Note, the form simply collects your name, contact information, and pledge amount.  After Ray's marathon, we will contact you in regards to the actual donation.  Donations to Conquer Chiari are tax-deductible.

C & S Patient Education Foundation (Conquer Chiari) is a tax exempt charitable organization governed by Section 501(c)(3) of the Internal Revenue Code.  Contributions to the Foundation are deductible as charitable contributions on your federal income tax return, subject to various limitations under the federal tax laws.  For more information on your individual tax situation, please consult a qualified tax attorney, CPA or other tax advisor.

The official registration and financial information of the C&S Patient Education Foundation may be obtained from the Pennsylvania Department of State by calling toll-free, within Pennsylvania, 1-800-732-0999. Registration does not imply endorsement.

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