Ray D’Alonzo, Ph.D., is an Associate Director of Research and Development at Procter & Gamble Pharmaceuticals where he has worked for 29 years and led research programs in bone metabolism, infectious disease, respiratory disease, arthritis, and nutrition. He 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.

June 20, 2006 --

While searching for a topic to write about this month, a couple of recently decompressed Chiarians contacted me with questions about recovery.  This basic question is very common in the Chiari community so I decided to choose it as this month’s topic.  Like most things I write about, I usually start by searching the medical literature.  I performed two basic computer searches.  For one, I used the terms “Chiari and rehabilitation”.  For the other, I used “Chiari and physical therapy”.  The first search yielded 30 references.  Seven of those references appeared as hits because one of the authors’ names was Chiari.  Eight had to do with Chiari osteotomy, a surgical procedure involving the hip.  One had to do with Budd-Chiari, a liver disease.  The remaining 14 papers dealt with other diseases or conditions such as spina bifida or scoliosis where Chiari was mentioned as a secondary condition.  The bottom line is that no references emerged pertaining to Chiari and rehabilitation.  The second search yielded only 10 references with a nearly identical composition.

This did not come as a surprise.  In doing earlier literature research on Chiari involving a different topic, I obtained a complete list of references which amounted to over 3300 citations.  I read every title and dozens of the abstracts.  I did not recall seeing any titles pertaining to recovery or rehabilitation after decompression surgery. 

This is an amazing fact.  There are no published papers in the medical literature on the subject of recovery or rehabilitation following Chiari decompression surgery, at least none that I could readily find.  This is down right appalling.  Many people with Chiari have significant mental and/or physical deficits following decompression surgery.  One problem right off the bat that nearly all decompressed Chiarians share is the need to regain full range of motion in their necks.  I am sure that many have had automobile accidents as a result of not regaining full range of motion in their necks.  There are, of course, many other problems such as balance or gait problems, pain, vision problems, weakness, and the inability to concentrate or recall words to name just a few. 

Why is this the case?  It’s an interesting question.  After one has heart surgery, the cardiac surgeon hands off care to the cardiologist for one.  Follow-up care by the cardiologist is aggressive and right in tune with the patient’s needs.  After knee or hip replacement surgery, the orthopedic surgeon hands off care to a rehabilitation specialist or physical therapist.  But, where does the Chiari patient go after decompression surgery?  Most of the time, he or she just goes home and often without any instructions whatsoever on how to regain range of motion in the neck or anything else.  Should the neurologist play a role in follow-up care?  Should follow-up MRI and/or Cine MRI be done routinely by a neurologist?  Should follow-up care monitor the patient for complications such as a dural leak?   It would seem that the answer to these questions is yes but it isn’t even on the radar screen so to speak anywhere within our massive health care system.  The majority of neurologists seem to have a poor understanding or even an incorrect or outdated understanding of Chiari.  Most GP’s have never heard of it.  Surgeons generally do not like to play a significant role in follow-up care.  After all, their time is needed in the OR.  I would venture to say that if there were more decompressed Chiarians walking around and consequently more money available in providing them with follow-up care, the follow-up care givers might even be standing in line to provide it.  Unfortunately, health care often flows in the direction of cash flow. 

So what’s a decompressed Chiarian to do?  The first thing is to ask for follow-up care or rehabilitation.  Ask your GP or family doctor to refer you to a rehabilitation specialist with experience in the particular area you are having problems in.  In my own case, I had several deficits following surgery that I did not have prior to surgery.  I had the usual stiff neck.  Swallowing was difficult particularly when eating bread and meat.  Both of my arms were sore and it was difficult to raise them without a significant increase in pain.  My surgeon provided instructions for my swallowing problem and neck stiffness.  To improve swallowing, I was told to chew my food well and take small sips of water each time I swallowed.  My swallowing problem improved very gradually.  It wasn’t until about 5 years after surgery that I no longer required water to swallow smoothly.  To aid in the healing of my neck muscles and regain range of motion in the neck, isometric exercises were suggested.  These exercises simply consisted of using the palm of the hand as a stationary object to press the front, back and sides of the head against for 20 to 30 seconds at a time.  Each press should be repeated 3 times and the entire routine carried out several times a day.  Regaining range of motion in the neck is important for safe driving.  I do not recommend driving on Interstate highways or other busy roadways until one can adequately turn his or her head to observe traffic before changing lanes. 

My arms were a different matter.  They were both weak and painful.  The surgeon told me that my arms would feel better in about a year but provided no explanation as to why they were sore in the first place or instructions to aid in their rehabilitation.  A couple of months postop, I asked my family doctor to refer me to a rehab specialist.  The specialist had never treated a Chiarian before but was aware of it.  He decided to treat me in a manner similar to a patient with upper spinal cord injury and handed me off to a physical therapist to carry out his instructions.  The therapist turned out not to be very reliable and missed almost every other session.  When I did have a session, she had me work mostly on an upper body ergometer. 

It didn’t seem to help very much.  It only took about 2 minutes before my hands and arms would go numb.  My tolerance to exercising on the ergometer did not seem to improve over the three weeks I went for sessions.  At that point, I ditched the physical therapist and joined the fitness center at work.  A fitness trainer suggested I try weight bearing exercise using a machine called a lateral raise to effectively challenge my sore muscles.  Having the facility in my workplace made it possible for me to rehab on a regular schedule.  The machine and routine of using it every other day helped tremendously.  I regained full strength in a few of months and all soreness faded away within 9 months.

In my case, my postop deficits were not nearly as serious as others and I was able to obtain the desired results by fending for myself.  For many others, deficits are much worse and going off totally on their own is unlikely to help.  The healthcare system needs to recognize that the post decompression patient requires follow-up care and rehabilitation not just for physical recovery but for mental and emotional needs as well.  Unfortunately, as is often the case with Chiari, the patient has to ask or insist for a referral for a specialist, whether it be a physical therapist, a neuroophthalmologist or a psychiatrist,  who can address their deficit in the most effective manner.  It is much easier for the patient to go off and enlist the services of alternative care practitioners but before doing so, I urge patients to push on the mainstream system for the specialist needed as they have much to offer.  

 --Ray D'Alonzo, PhD

 ** 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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