What is a Chiari 1 Malformation? It’s when the lower part of the brain, the tonsil, expands beyond where it should, putting pressure on the brainstem, cerebellum & spinal cord. The malformation was first recognized by Austrian pathologist Hans Chiari in the 1890s while performing post-mortems. (Click HERE for a straightforward discussion on Chiari. But don’t forget to come back.) Due to the plethora of MRI machines many people are discovered incidentally to have the malformation. A good number are asymptomatic. Exactly how many fall into this category is not yet known. In all there are three levels of Chiari Malformation (some say four).

GOLFER BOBBY JONES & CHIARI

Bobby Jones, the most famous amateur golfer of all time, blessed with movie star looks & a charming personality, was stricken with a Chiari-related ailment called Syringomyelia – a blockage within the spinal column called a syrinx (a fluid-filled cyst). The syrinx likely developed as the result of a lightning strike that caused a pile of bricks from a chimney to fall onto Jones’s shoulder. The incident occurred at Atlanta’s East Lake golf course in 1929 when Jones & his friends had run to the clubhouse to escape the lightning. Bobby was not yet 30.

Is it possible Jones already had a Chiari Malformation that was exacerbated by the 1929 event? As early as 1926, three years before the accident, Bobby wrote the following about peculiar, painful sensations bothering him during the British Amateur Championship:

“I felt, and I am sure heard, the muscle up the left side of my neck give a loud, rasping creak like a rusty hinge.” *

(I’ve experienced the exact same anxiety-inducing phenomenon.)

Jones almost withdrew from the tournament because of intense pain. Apparently he had had stiffness, creaking, & clicking for years. He went from doctor to doctor complaining of neck & shoulder pain yet was never even given an X-ray! By 1948 Jones had to give up golf completely. It wasn’t until 1950 he was finally diagnosed. Eventually he was unable to walk or use his hands & was pain-ridden for the rest of his life. He passed away in 1971.

COURAGE UNDER FIRE – SOMETHING WE ALL NEED

Jones’s motto for both golf & life was: “Play it where it lies.” Bobby Jones didn’t just speak those words. On the golf course he never expected the kind of R–E–L–I–E–F professional golfers are accorded today. In his day, when a drop was required, due to a penalty or unplayable shot, the golfer turned around & dropped the ball over his shoulder. Wherever it fell is where the ball was played. Today, professional golfers face forward & virtually place the ball where they want it. They’re even allowed to lift & clean the ball if it’s dirty, then place it down again. They no longer play it where it lies. Shall we say standards have been relaxed?

Bobby Jones was accorded facile relief neither on the links nor in his life. Never bemoaning his fate he accepted the situation with incredible grace & courage. In private everyone is entitled to moments of sadness, depression, even anger, perhaps demanding of God: WHY! Bobby may have had his moments. Constant pain does that to you. So does having the sport you love & put on the map taken away from you. The fact is, even after Syringomyelia robbed Jones of his physical freedom, he continued to live his public life in a humble & heroic manner, as did Lou Gehrig. I’m sure we all wish we could exhibit in our own daily struggles the exceptional grace those men displayed.

When such famous people become the face of a debilitating disease it brings world-wide awareness to the condition. Thankfully, Jones’s unprecedented achievements in golf & his sterling character were both weighty counter-balances to the terrible affliction that became for him yet another claim to fame – a terribly tragic one.

In Jones’s case the usual manifestations of dysautonomia did not appear to be a major component of the Syringomyelia. But Chiari can certainly present as dysautonomia & be diagnosed as such because the symptoms are so similar:

• Neck & shoulder pain
• Headaches
• Visual problems
• Numbness
• Sleep apnea or other sleep difficulties
• Trouble swallowing
• Overly Flexible Joints (Ehlers-Danlos Syndrome)
• Frequent UTIs
• Anxiety
• And so many more

MODERN MEDICAL EQUIPMENT FINDS MORE CHIARI PATIENTS

Today of course it’s theoretically easier to get a correct diagnosis much more quickly, thanks to MRIs, CT scans other specialized testing, and doctors dedicating their lives to studying & treating this disorder. But people are not always referred to those doctors nor do they get proper testing. I am a case in point.

Ten years ago I had to have two emergency back surgeries one month apart. The first for a herniated disc, the second for a severe spinal fluid leak. That leak & other symptoms convinced the surgeon, who did a residency at The Chiari Institute on Long Island, that I had Chiari. Two brilliant physicians I had great trust in, my neurologist Dr. B & his very experienced radiologist colleague, said I didn’t have Chiari & was not I borderline; the famous Chiari surgeon I saw said he wasn’t sure & wanted more testing; the back surgeon was the only one who was firmly convinced I had it. So who do I believe?

I never completed the testing because I was so physiologically & emotionally beset by symptoms after the two back surgeries I just couldn’t deal with it. (Currently going through a serious dysautonomia relapse, I still can’t.) Therefore, to this day, I don’t know with perfect certitude whether or not I have the condition.

Since thoughts are things, since everything ever created in this world existed in someone’s thoughts before it existed in the physical plane, I choose to create my reality and firmly believe I do not have Chiari.

The Bobby Jones story & advances in medical testing have seen to it that Chiari is no longer the orphan disease it once was. How many people have it? Estimates vary. Generally speaking the numbers are high enough (thanks to those MRIs) that the condition has come to the forefront of neurology & is no longer overlooked or dismissed as in the past. But you still need to be seen by the right doctors.

If you have been told you have the condition, or are borderline, and you want to get properly checked out, or if you simply want to learn more about Chiari Malformations, visit The Bobby Jones Chiari & Syringomyelia website. Just as important, please consider financially supporting the Foundation, a 501(c)(3) non-profit organization using its resources to find a cure for this condition. Another worthy Foundation to which you might consider donating is ConquerChiari.org. There are more. Do a search!

* From Ron Rapoport’s 2005 biography The Immortal Bobby | CT Photo by Anna Shvets from Pexels