Ray D’Alonzo, Ph.D., is a visiting professor in the Chemistry Department of the University of Massachusetts Amherst and a retired R&D Manager of Procter & Gamble where he worked for over 31 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.

September 30^th, 2009 --     

October 8th will mark ten years since my decompression. Just prior to decompression at the age of forty seven, I doubted that I would live to fifty. Like many Chiari patients, I experienced a long period of not getting an accurate diagnosis. In addition to numerous symptoms including clinical depression and weakness so severe that I could hardly use my arms or legs, I felt angry and cheated that I was getting cut down in the prime of my life. I was also distressed thinking about how I would support my family if I did not recover.

Chiari isn't fair to anyone at any age. Many young women are stricken with Chiari in their twenties or thirties and find it impossible to care for their young children. Others are stricken in High School or College forcing them to drop out of school and put their education on hold. Young children with Chiari struggle with their basic development while their caring parents fret and lose countless nights of sleep. Chiari usually comes with a long period of illness that significantly disrupts the patient's quality of life and transforms dreams and aspirations into nightmares.

For these reasons, once an accurate diagnosis is made and the decision is arrived at to have decompression surgery, the patient is filled with high hopes of returning to a normal life even when the surgeon clearly informs the patient that a complete recovery should not be expected. The patient's hope is a double edge sword. On one hand, hope and a positive outlook is important in the recovery process. On the other hand, a patient's hope can be so strong that they miss calibrate with regard to their rate of recovery particularly in the early stages and then suffer a serious let down when symptoms or complications emerge a few weeks or months later.

The best a patient can do for him or herself is to make a strong effort to be fully informed before surgery, have realistic expectations about recovery, and realize that neurological healing is generally a slow process that requires the utmost in personal patience and persistence.

Another important aspect is to understand that there is recovery from the surgery and recovery from the syndrome. It takes about 6 to 8 weeks to recover from the trauma of the surgery but it can take much longer to recover from the syndrome particularly if the patient is also suffering from clinical depression which often coexists with Chiari.

In my own case, I experienced a long and protracted recovery. One of the problems I had before surgery was pain and numbness on the left side of my face. A few hours after surgery, I noticed that my face felt normal. I interpreted this as a positive sign although so many other things felt so rotten. I had a difficult time during the first 3 weeks after surgery. My head felt like it would explode with just the slightest movement. I was unable to bend my head downward to put on my pants or shoes without feeling that I was about to pass out. I was also constipated and unable to void my bladder for two weeks following surgery due to side effects from the anesthesia and the morphine I was taking for pain. In fact, I went home with instructions to straight cath myself until I was able to completely empty my bladder. I clearly recall how extremely difficult it was to bend my neck in order to carry out the catheterization procedure in a proper and sterile manner. At any rate, I recovered from the surgery and was able to drive and begin working half-days about seven weeks after the decompression.

Over the years, I helped a number of local people through the post surgery ordeal. Some recover much faster from the surgery than others. It is highly variable. But, recovery from the surgery is not the important component of recovery. It is the recovery from the syndrome itself. Here again, it is highly variable but it is my personal experience that it takes most patients much longer than anticipated. It certainly did for me.

In my own case, it felt as though I had traded one set of symptoms for a new set. Without going into great detail around all the symptoms I experienced suffice it to say that I continued to feel extremely ill for 2 years following surgery. After that time, I began to feel well again and after about 4 years, I began to feel a lot like my old self. To this day, I do not understand why my recovery was so protracted. I believe that depression played a role but not in the emotional sense. When my symptoms first emerged, I fell into clinical depression within a couple of months. I was placed on antidepressants at that time, first on Paxil and then on Prozac. I had a great deal of trouble tolerating those particular drugs in terms of GI side effects. I was then prescribed Remeron which agreed well with me and within 5 months my mood lifted. Remeron eliminated my emotional depression but numerous physical symptoms consistent with clinical depression persisted.

All of this occurred before my surgery. It was impossible to differentiate the physical symptoms of clinical depression from the symptoms of Chiari. It is also known that the physical symptoms associated with depression can linger for a much longer period of time after emotional stability is achieved.

During my recovery following decompression, I often wondered if some of my physical symptoms were from depression. I suspect to some degree they were. I continued to take antidepressants for 6 years following decompression at which time I finally was able to shed them without consequence. I have to also say that once I shed the medications, I never felt better in my life.

For the past 4 to 5 years, I have felt extremely well. I have some residual neurological symptoms like mild ringing in the ears but nothing worth complaining about. I do not feel the way I felt before my symptoms first emerged. While I have some minor deficits in other ways, I actually feel much better. Overall, I am extremely pleased with my long-term recovery but it did require effort on my part. So, let me provide some tips from experience.

First, if clinical depression is a component of the constellation of your symptoms, don't push to go off antidepressants following surgery. Listen to your body carefully. In consultation with your doctor, you will know when it is time to discontinue such medications. In addition to medication, find your sense of purpose. When a person finds their sense of purpose, they find happiness and happiness goes a long way towards fighting depression. People often find their sense of purpose by serving others but many other ways also exist.

Second, live a healthy life style. Lose weight if you need to in a gradual and disciplined manner. Eat right. Eliminate or limit alcohol, nicotine and caffeine intake. Resume physical activity and institute a regular exercise program. Get professional help with this if needed.

Third, don't confuse setbacks with the return of symptoms. Setbacks from over exertion can feel like the return of symptoms however setbacks will fade away in a few days. As soon as they do, recalibrate and resume physical activity. It is very much a process of two steps forward and one step backward.

Fourth and final, engage your mind in something that requires full focus. This might be anything from art to rock climbing. Focusing mental energy externally reduces anxiety and worry and promotes better sleep.

Unfortunately, I must close with a bit of bad news which is that I was unable to participate in this year's Walk Across America. The reason is that I was diagnosed with prostate cancer in August and needed surgery in September. Before going any further, let me say that my prognosis is excellent. Prostate cancer is very common affecting one out of every six men during their life time. I'm actually happy that I survived Chiari to become old enough for prostate cancer to develop. I was not expecting such a diagnosis as I have been having annual physicals every year for the past 10 years which included PSA screening. It of course illustrates the importance of having annual physicals. I have written in the past that a tendency exists in some decompressed Chiari patients to dismiss new symptoms as being Chiari related and avoiding medical evaluation. In my case, there were no symptoms but the point is relevant nonetheless which is to properly monitor health and wellness on a regular basis.

What I find very interesting of course about my recent predicament is the reaction I get from people when I reveal to them that I have cancer as opposed to the reaction I got from the very same people when I informed them that I had Chiari. I am as one would expect, getting all kinds of sympathy, attention and concern which I did not experience at all with Chiari.

Chiari was a horrible experience for me. In my present situation, I do not feel ill at all. Sure cancer can kill but in my case the prognosis is excellent as I have already stated. Chiari can kill as well and I have pointed this out on numerous occasions. Chiari can kill by inducing cardiac arrest or respiratory failure. There is also evidence that Chiari patients have a higher incidence of suicide due to related depression. While Chiari may not kill as frequently as cancer, it can destroy quality of life every bit as much and often as cancer.

We must set a goal of increasing the level of awareness about Chiari to match that of cancer and being a Chiarian with cancer, I aim to do just that until improved awareness results in a more fair share of research funding which is nearly non-existent by comparison to cancer at present.

I salute all who walked for Chiari awareness and plan to join you next year.

-- Ray D'Alonzo

 ** If you would like to share your comments, thoughts, or ideas with Ray,  please send them to dalonzo.rp@gmail.com.  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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