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Posted on 26. April 2012

Treated or Mistreated? The Uncertainty of Treatment

By Ronale Tucker Rhodes, MS

Uncertainty is a scary thing - especially when it’s uncertainty about the future. An illness or injury has the capacity to evoke horrible thoughts of living a life unlike the one that is truly enjoyed and loved. This happened to me recently. My situation was not nearly as dire as having been stricken by a chronic, debilitating illness with no diagnosis in sight. But, for me, it was just as serious. And, it wasn’t just the illness that scared me. It was the fact that the physicians I saw, who ultimately totaled three, disagreed about treatment.

I’m a runner, and I love to run distance. When I started feeling pain in the bottom of the ball of my foot, I had a feeling I was in trouble. But, as the pain progressed over several years and became so bad that it felt like a knife going through the bottom of my foot after running only four miles, I started to panic.

I sought the help of a podiatrist who, at first, told me my “neuroma” was untreatable. When I persisted after hearing from others who had suffered a neuroma and had been cured with surgery, the podiatrist agreed to treat me - but not with surgery. He wanted to try another procedure first, which ended up making my situation worse, and because of the length of time that treatment required, my neuroma was getting worse. When I told him I thought things were getting worse, his answer was to “stop exercising completely.”

That was an answer? I asked for a referral to another podiatrist, which I got. But, I was equally unhappy with him. He would agree to surgery, but he appeared less than confident about performing the procedure, and he repeatedly tried to talk me out of surgery by telling me that the potential for failure was so great. In fact, he told me I should do some “soul searching,” since some of his patients with neuromas couldn’t even walk from the parking lot to his office. I was supposed to wait for my neuroma to get that bad?

Eight weeks ago, after finally finding a podiatrist who agreed that surgery would cure the neuroma and who had performed the surgery many times, even on a friend of a colleague who had referred this podiatrist to me, I am running again - comfortably. It may sound melodramatic, but I feel like I have gotten my life back. And, I wonder why it should have taken so long - six years to be exact - to have gone from being mistreated to being successfully treated.

No matter how serious an illness is, it doesn’t seem right that one should have to fear the uncertainty of his or her future. Maybe one reason this happens is that healthcare, in general, has become so impersonal. Many providers just don't take the time to consider the impact their decided-upon treatment will have on a patient's lifestyle - not just their illness. Does this situation sound familiar to you? If you have gone from being mistreated to being successfully treated and have gotten your life back, let us hear about it.

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Comments (3) -

Dale Cook
4:54 PM on Thursday, April 26, 2012

When I look back now at when I was diagnosed with CVID and Low IgA, I never gave it a second thought.  The doctor prescribed IVIG and after the first infusion, didn't think about it again until the next IVIG.  I didn't "Google" it, I was too busy working.  My supervisor was not supportive at all for me to miss work one day a month so the nurse came to my office and I had the infusion there at my desk.  You probably ask "how could I be so stupid" and the only excuse I can give is that I was in denial about my disease.

Now I take more of a proactive stance and I want to find out everything I can about this disease that most doctors have never heard of much less the public.  I ask my doctor lots of questions, read I.G. Living and attend IDF Patient Meetings to obtain most of my information.  I believe knowledge is power and now I feel I can handle anything that comes my way with this disease.

Gail
8:41 AM on Friday, May 04, 2012

Dale: Please tell me more about IDF meetings. I don't know what they are or how to find one locally.  Thanks!

Paul Blum
10:52 AM on Friday, May 04, 2012

I am one of those people who not only has CIDP, but have had Low Platelet Counts all my Life. I have found it almost impossible to get my doctors to believe that I have adverse reactions to steroids!!  When given steroids to increase my platelet count IT ALWAYS GOES LOWER. In addition, the benefits I receive from IVIG or diminished if not altogether negated.

My point is...Know Your Body, and to the doctors I would say..."Please listen to your patients so they do not have to suffer needlessly." I have had my Body for 56 years. I know when something DOES NOT WORK.

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