Staying out of the Waste Basket

March 31st, 2012 - Many physicians behind closed doors refer to certain conditions or diseases as waste basket syndromes. These are situations where patients complain about vague symptoms that are difficult if not impossible to objectively verify. Without being able to objectively verify, it is difficult for physicians to determine an effective course of treatment. As a result, such patients are often placed on antidepressants or pain killers and “tossed into the waste basket”.

Some waste baskets syndromes are depression, fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome, and, yes, Chiari. These diseases and others not named share many of the same symptoms.

I don’t know how many times I have read posts on web-based Chiari forums by patients who reveal their history and report that they have Chiari as well as one or more other waste basket syndromes. So many of them have come to believe that they have multiple co-morbid conditions because different doctors along the way told them so. I am highly skeptical of this. When one looks at the incidence of these diseases, you would have to be a very unlucky individual to have more than one at the same time. For example, the incidence of a Chiari malformation is about 1 in a thousand (and much less than that for symptomatic cases). The incidence of chronic fatigue syndrome is about 3 in a thousand. Since there is no known evidence that chronic fatigue syndrome is more prevalent in Chiari cohorts and vice a versa, the incidence of them coexisting would be about 1 in 300,000.

Now there is not much sense in refining the incidence of Chiari with other coexisting waste basket syndromes because the underlying incidence data themselves probably belong in the waste basket in the first place in my opinion. I am sure that the diagnosis of many of these cases is incorrect but they are counted nonetheless. You see, once you generate a number, someone has to count it regardless of its quality. So, leave it to say, that these diseases are relatively uncommon and to see more than one in an individual is on the order of rare.

Why is it important for Chiari patients to recognize this? The answer is because it needs to be sorted out if you want to get effective treatment and get well. Otherwise, the Chiari patient will sit around the house with a terrible quality of life taking a bunch of ineffective medications or will end up getting decompression surgery without the hoped-for positive outcome.

If you find yourself in this situation where one doctor told you that you have fibromyalgia and another told you that you are suffering from chronic depression and another told you that you have Chiari, you need to go to a Chiari center to unravel the situation least you end up in the waste can for many years if not your remaining life. Only experts who see many Chiari cases over the course of a year truly understand it and can best determine if your symptoms are in fact stemming from Chiari related hindbrain compression or another condition or both. Keep in mind however that this can be challenging in many cases even for the experts and these experts may need to take a wait-and-see approach as frustrating as that may be before recommending surgery. In many cases, observing the progression of symptoms is the only way pin-point the problem.

When I was dealing with Chiari in the 1990’s there were no Chiari centers. Today with the growth of awareness there are several. Just Google™ the term “Chiari center” and they will pop up. Stop wasting time at the local neurologist or general practice physician office and go to a Chiari center if at all possible. Otherwise you risk being tossed right into the waste basket while being told Chiari is not the cause of your symptoms and to “just keep taking your medication”.

Ed. Note: The opinions expressed above are solely those of the author. They do not represent the opinions of the editor, publisher, or this publication. Mr. D'Alonzo is not a medical doctor and does not give medical advice. Anyone with a medical problem is strongly encouraged to seek professional medical care.