Elanso

This week, we speak with a retired surgeon  from the mid-west USA.

Can you tell me about when you first started experiencing the pain and what kind of pain it was? What were you told?

         I started having arm pain around five years before I had to retire. At first I thought it was just a pulled tendon or a bruise. It felt like my elbow and hand were being crushed, or sometimes like a fire breathing rat was gnawing on my bones. Sometimes it feels like I’m being crucified. It would last a few days and be gone for months. I started avoiding certain swinging motions which seemed to exacerbate the problem such as playing catch or badminton with my children. As a physician, I worked with other doctors all the time and they all said it was “tennis elbow, just rest it. Take some Tylenol and aspirin.” I did and it seemed to help, at least in the beginning.

 Then one of the doctors noticed me stretching my arm in an unusual fashion and when I explained it seemed to help with the pain he did an electromyelogram [EMG] and said there was nerve damage. He sent me to a regional hand specialist who insisted there was nothing wrong with me and said that the other physician simply had an outdated EMG machine which was unreliable. The pain would come and go. Gradually the pain episodes were more intense and longer lasting and the good spells became shorter.

I realize this now but each time I thought I was getting better was really the eye of the storm. I had more EMGs which were all normal. Gradually more and more of my hobbies were falling by the wayside and I was getting more and more exhausted by performing surgery. I started keeping bottles of aspirin and Tylenol in my desk and even started getting liver enzymes checked to be sure I wasn’t taking too much. I got a hot tub and soaked daily to help with the pain and started eating more hot peppers for the capsaicin which helped a little. On vacations I would drink alcohol for relief.

 I started falling asleep while waiting between surgeries because the pain had kept me awake the night before. My children complained that I didn’t think anything was funny anymore. We’d rent movies; I couldn’t laugh even when I said I thought something was a good joke. Still all the tests were normal. All the other doctors said I was fine.

Five years later I suddenly got dramatically worse. I started to drop things. The pain would keep me awake for up to a week at a time. I stopped doing surgery on my own. For several months I had already been shipping all but the simplest of cases out because I just felt too exhausted to do them. I didn’t want anyone to have to tell me it was unsafe. I only did office work and then only half days a few days a week while I continued to worsen and still more tests were pending and then officially “normal” and finally my right hand was paralyzed one day. Muscles in my hand started to waste, and finally the EMGs showed diffuse progressive nerve damage with evidence of demyelinization. Realizing that once muscles atrophy they don’t grow back, I retired. This was obviously not something that a leave of absence would fix and a surgeon needs two good hands. A good doctor protects the patients, even if that means protecting them from himself.

 Gradually the same thing happened in my other arm and it’s beginning in my legs. I’ve had a few surgeries which have helped somewhat with pain and slightly with function. There is a huge difference between 10% function in a limb and no function. Interestingly the neurosurgeon says that the EMGs are very different when the nerve is tested directly as opposed to with skin and muscle covering them. Apparently I have electrically insulating skin which gives false negatives on the tests. Maybe that’s why I survived a lightning strike as a child. Whatever.

 I can type slowly but have trouble holding a pen or a toothbrush. I went almost overnight from a healthy active surgeon to being a near invalid. They seem to think now that it is some variant of or somehow related to Lou Gehrig’s despite no family history of such things. The geneticist raised the question of a possible “family secret” and that perhaps I’m not the person on my birth certificate. Again, whatever.

What have you tried to help you with your pain?

Pain medications, herbal remedies especially hot peppers, diet, physical therapy, rest.

 Can you tell me a bit about what worked and what didn’t?

 The pain medication Lyrica was by far the best, unfortunately I became allergic to it rather quickly. Everything else sort of helps a bit. The most important thing I’ve found is to not try to do things when I hurt. Narcotics give me more side effects than help usually. Dissociatives like alcohol seem to help in the short term but then tend to make you able to overexert yourself, thus worsening damage in the long run.

 How does having this pain make affect you in terms of how you live your life?

I need help sometimes just with hygiene and eating. I can’t work or even take part in my former hobbies. I’ve been in and out of a wheelchair. Travelling is usually out of the question.

 If you were to look back over what you have tried/haven’t tried, would you change anything? If so, what would you change?

Not really. I worked as long as I could safely. I stopped when I had to. I’ve done all the stuff they’ve told me and a few things extra on my own. This seems so far to have no specific treatment or even a specific diagnosis so far.

 What would you say to someone in a similar situation who is just starting to try to find treatment and relief?

Get a bird feeder. Wildlife is more interesting than a soap opera. You’ll find out who your real friends are. Do not underestimate the need for sleep. Lack of sleep worsens everything. Do range of motion exercises daily, preferably in water. Water takes the weight of your limb out of the equation and if you can maintain range of motion it is much easier for you to do things yourself and for others to help you do the things you can’t. A frozen limb is worse than a limp paralyzed limb. You also don’t have to worry about falling over and breaking a hip if you are in water. Try not to be isolated. Email can be done at 2 in the morning without waking others up. Get a computer and type in your thoughts and learn to use the cut and paste function for anything you get asked more than once. Understand that when people avoid you it is out of their own fears of their own mortality probably at work. Labs and tests are not infallible. If you think there is something wrong, seek another opinion or a third or a tenth, but, understand that sometimes the best test is time.

 Would you like to add anything?

You have to be alive to complain. Disability insurance may be more important than life insurance. Tylenol is metabolized into another chemical that can damage your kidneys before the liver. Liver tests aren’t the only thing to check if you are taking a lot of over the counter medications even under the advice of a physician.

Thank you for sharing your story with us. I think sometimes we forget that the caregivers can get sick too. I hope that stories like yours will help people realize that they’re not alone.

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