Ray D’Alonzo, Ph.D., is Manager of Doctoral Recruiting & University Relations and a former Associate Director of Research and Development at Procter & Gamble Pharmaceuticals where he has worked for 30 years.  He has led research programs in bone metabolism, infectious disease, respiratory disease, arthritis, and nutrition and has published scientific papers on a wide variety of topics from the chemical composition of fats and oils to the pharmacoeconomics of osteoporosis. Dr. D’Alonzo is the recipient of the Chancellor’s Medal from the University of Massachusetts, Amherst, in part, for his contributions to the development of new pharmaceutical agents. As both a patient and scientist, he has made a personal effort to increase the awareness of Chiari in the health care sector and to assist others afflicted with the syndrome.  He has published the story of his personal struggle with Chiari in a book, Contents Under Pressure, with 100% of royalties going towards Chiari education, awareness, and research programs.

May 31, 2008 --     

From time to time, a reader will send me an email to express a concern about something I have written.  I welcome these emails and find them invaluable.  I'd like to receive more such emails as they provide me with insight as to what the Chiari community understands and how I can write more clearly going forward.

I recently received an email from a Chiari patient who asked me three very good questions.  I have addressed all three of these topics in the past either in my book or this column but it is apparent after receiving this email that it would be helpful to address them again.

The first question or concern raised had to do with the general issue of using medication to treat Chiari.  I had mentioned that in general medication is not that effective for treating Chiari with decompression surgery being the only true effective treatment.  I'm not the first person to make such a statement.  Readers should keep in mind that this common statement found throughout Chiari literature is a very general one.  It doesn't apply to all so let's talk about where it doesn't apply. 

First, it doesn't apply to patients with mild Chiari.  The problem of course is defining mild Chiari.  Different people will define mild Chiari differently.  In my mind, I think of mild Chiari primarily in the clinical sense.  That is, how the patient presents in terms of signs and symptoms.  This would be occasional headaches or other symptoms like nausea or fatigue that do not overall impede everyday activities.  For such patients, it is appropriate to treat these symptoms with medication.

Second, everyone needs to keep in mind that coexisting problems or disease can exist.  It is possible to have two or more different and unrelated problems/diseases.  It is possible to have migraine headaches not related to Chiari.  It is possible to have GI disease unrelated to Chiari and so forth.  The challenge of course is diagnosing when this is the case which is beyond the scope of this particular article.  However, when coexisting conditions are the case, medication can often be the answer.  If for example, a medication such as sumatriptan or topiramate works extremely well in a Chiari patient suffering from migraine then there is an excellent chance that the migraines are independent of Chiari and treatment with these medications going forward should be continued.

Third of course, is the situation where the Chiari patient has other conditions making surgery inappropriate or risky.  Patients for which surgery is not an option could be candidates for pharmacologic intervention (drug therapy) as long as the condition that rules them out for surgery doesn't exclude them from taking medications.

It is also important to appreciate that drug treatment can carry the risk of masking the progression of Chiari.  In some cases, this can lead to delaying needed surgery which can carry the risk of a less successful surgical outcome than if the patient had had the surgery sooner.  There is also the situation of the patient who needs surgery but fears surgery and avoids even considering it.  I have had numerous patients over the years contact me with this problem.  Surgery is always a serious situation and always carries risk.  Nearly everyone facing Chiari decompression surgery has some level of fear.  That's normal.  I recall the night before my decompression well.  I couldn't sleep a single minute due to the anxiety.  However, when the anxiety or fear blocks good judgment, drug therapy isn't the answer.  I urge such patients to seek professional counseling.  In many Chiari patients it is important to recognize that their anxiety may stem from Chiari itself as opposed to a pure psychological root.  In other words, if they did not have Chiari and were facing another major surgery like open heart surgery, they wouldn't be apprehensive about having surgery.  It is not only important for the psychologist or psychiatrist to understand this but the patient as well.  Appreciating this can help the patient move to a level of more rational thought.  One point I always make to such individuals is the fact that the acute discomfort or pain associated with the surgery is far less serious a problem than the progression of the syndrome in hopes that they will come to fear the progression of the disease more than the surgery. 

The second question raised by the reader who recently contacted me had to do with depression.  The reader indicated that not all Chiari patients need psychiatric treatment.  I totally agree with this statement.  In fact too many Chiarians are inappropriately shuffled off to psychiatrists who do not recognize Chiari and misdiagnose it as a psychiatric condition.  However, it is also true that many Chiarians suffer from depression.  In some cases, the depression is independent of Chiari.  In other cases, they have slipped into depression naturally as a result of coping with chronic pain or other symptoms.  And, yet in other cases, their depression may be organically driven as a result of compression to the brain caused by the Chiari malformation.  Patients in the last group intuitively know that their depression is not their normal state.  Of course most people suffering from depression know this, but in these particular patients many have a rational thought capability that focuses them on addressing the root of the problem, their Chiari itself.  These patients need to appreciate that even if their depression is organically rooted, they can benefit from psychiatric treatment.  It is my strong position that regardless of the cause of depression in the Chiari patient, all should seek psychiatric treatment. 

The third and last issue raised by the reader who wrote me challenged my position on the utility of cranial sacral therapy or CST.  My position on CST can be found at:

Weighing In On Cranial Sacral Therapy

Many people who have had CST strongly believe it has benefited them.  I do not deny this and I am confident that it has.  However, this doesn't mean that CST is proven and can be recommended in general.  CST has not been proven.  There simply are no well designed clinical studies demonstrating its effectiveness.  Further, the basis of CST is not credible based on a number of scientific principles.  Those professing that CST is based on valid scientific principles do not understand evidence based medicine or have an incomplete understanding of it in my opinion.  All of the current evidence indicates that CST may have a placebo effect rooted in psychological behavior of the patient.  This appears to be the reason why it works for some people.  This is not necessarily bad.  If CST helps some individuals on this basis, fine.  However, this is not sufficient to recommend it in general. 

Please continue to send me your emails with questions, concerns and challenges.  Politicians unfortunately are not permitted to be wrong, scientists are.  Presented with new information or valid data, I will change my position for science and medicine must be data driven.  Beware however, the operative word is data and I hope to write about what valid data actually are in a future article.

-- Ray D'Alonzo

 ** If you would like to share your comments, thoughts, or ideas with Ray,  please send them to dalonzo.rp@fuse.net.  Due to the volume and nature of email received, individual responses are not possible. **

[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.]    
 

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