Suzanne's Story: Did They Really Listen?


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Suzanne has Gaucher Disease and despite having had two hip replacements and six revisions, she has worked as a registered physiotherapist for 25 years, presently at Princeton Neck and Back Institute, New Jersey, U.S.A. She has lived with multiple symptoms from Gaucher disease since 1981 and is an avid speaker and writer on the subject. Her first hip replacement took place in June 1983 at the age of 27 years old. The other hip was replaced ten days later. They were subsequently replaced in 1990, 1994, 1997, 2001 and two in 2003. It was after her seventh operation that she asked of her medical carers: 'Are you really listening?' This is Suzanne's story:


I have had eight hip replacements (three on my left side and five on my right). There are various reasons for the revisions but the first hip replacements when I was 27 years old took place in June 1983 because I had avascular necrosis (death of the bone) in both hips caused by my Gaucher disease.

The other hip was replaced ten days later. Unfortunately some of the revisions were due to faulty parts, another one was due to a fall which caused a major loosening with the stem and acetabular components. My Gaucher Disease has caused severe osteoporosis and sadly that increases the chances for quicker loosening to occur. Fortunately for the past five years I have been on Fosamax and have been infused with Cerezyme. I am happy to say that the results of my bone density scans have shown an increase. So my family and I are hoping that my existing hip replacements will not loosen as rapidly as the previous ones.

Seventh Hip Operation

It is the experience of my seventh hip revision last year that I would like to share with you now. Have you ever talked to someone and clearly that person was not listening? You just knew from their blank stare. The message you were conveying was of great importance to you but it was obviously of no interest to them.

They may have heard the words you were saying but they were not listening. Having had six hip operations, in March 2003, I needed another revision. After the operation I felt the most extraordinary pain in my right groin and buttock. It was deep bone pain. I complained to the medical staff: they reminded me that I had just had surgery but the bone pain was relentless.

Every month I would see my orthopedic surgeon who assisted in the procedure as his partner performed the revision. The surgeon who assisted, had performed my previous six hip operations. Months passed and I still complained of hip and buttock bone pain and my inability to move my hip correctly due to weakness, pain, and extreme dysfunction. Many x-rays were taken but both doctors claimed that since the x-rays looked good everything was fine, regardless of my complaints. I was feeling the worst pain I had ever had from any of my past hip surgeries.

After eight gruelling months with constant complaints and concerns from me, my doctors finally began to listen. Additional x-rays revealed a failed prosthesis (replacement) with multiple pelvic fractures. My doctors explained that I would have to have more hip surgery and expressed their sorrow. I felt hurt and betrayed and admonished them for not listening to me when I knew that something had gone wrong with the surgery.

Not Being Heard

This malady of not being heard affects people in all walks of life but when one experiences it in the world of medicine, it is more serious. It is frightening and frustrating. As a patient, we expect our medical team to listen, to understand, and to comprehend our words.

Listening plays an integral part in a physician's ability to decipher your described symptoms. As a physiotherapist for 25 years, I have always said to my patients that they are the educators. As they express themselves, I listen intently and learn from them. This is of the utmost importance because they are the ones living within their bodies, suffering ailments, pain and sometimes fear.

They express the truest picture. Once I have listened to all the facts, I utilise my expertise to identify goals and a treatment plan. Had I not listened to their symptoms and concerns, I would not be able to fulfil my job.

What to look out for

The following are some key elements of a non-listener:

Essential steps to take with non-listeners:

Post Script

Subsequently to the March 2003 failed surgery and eight months of suffering, I had to have my pelvis reconstructed and another hip revision by an entirely different team of orthopedic surgeons in October 2003. Various fractures were found in the pelvis as well as detached muscles to control the hip function. As a result of the expertise of the new surgeon, I am presently functioning normally.


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Source: Gauchers News October 2004.
© Copyright Gauchers Association 2004.