Saturday, April 30, 2011

Meniere's disease

I will turn 49 in August, and while the arbitrary measurement of years doesn't bother me, the physical aging is beginning to affect me. I don't look my age, but I have some arthritis and I'm prediabetic. I flattered myself that I was coping quite well with these conditions and that if I could handle these things, I could handle anything. Then I received a diagnosis that devastated me-Menier's disease.

According to the Mayo Clinic, Meniere's disease usually affects only one ear. It causes episodes of vertigo, fluctuating hearing loss, and ringing and a feeling of pressure in the ear. Nobody knows what causes it-it could be a genetic problem, related to allergies or infection, brought on by head injury, or a combination of factors. There's no cure, and although most people respond to treatment, hearing loss is difficult to prevent. Motion sickness medications or Valium can help with the vertigo, and since fluid retention is a potential trigger, diuretics are sometimes used long-term. There are therapies that can help with ongoing balance problems, which may or may not occur, along with various devices and treatments if vertigo becomes disabling. Salt, MSG, caffeine, smoking, stress, and allergens are all potential triggers for an attack and should be avoided.

It all started in August, 2010. My hearing was so acute that people had been commenting on my sharp ears for as long as I could remember. I had suffered concussion three times, but never had any problem with balance or any other long-term affects. Nor had I ever had an ear infection. Then in August, I got a very bad ear infection. I went to the doctor several times-there were different antibiotics over the course of a month, but my left ear never seemed to get better. There was pain that never rose above the level of annoying, but never went away. There was a sound in my left ear like the sound you hear when you put a seashell up to your ear. There was a strange feeling of pressure, like my sinuses were congested and had taken up residence in my left ear. I tried chewing gum-it seemed to help with the pressure. I tried hot packs. That seemed to help with the pain. Nothing helped with the noise, but as time went on, I learned to live with these things. I didn't have symptoms most of the time, and when I did, I was able to get through the day without too much trouble.

Then one day in February, the vertigo hit-hard. So hard I had to call my son to come and get me from work. I was almost completely deaf in my left ear, the pressure was so bad I kept pawing at my head, and the whole world seemed to be spinning out of control. I was scared.

When I went to the doctor the next day, the vertigo was gone, but I still couldn't hear and the pressure was still very bad. He sent me to a specialist, who put me through a number of tests and came back with the diagnosis of Meniere's disease. He was very reassuring-said he had many patients with Meniere's and no one was incapacitated from it. Since this was the first attack, he didn't want to prescribe anything-he said it was better to wait and see how it progressed. He gave me some literature, told me to call him whenever I had an attack to let him track how I was doing, and sent me on my way. Within a week, I seemed to be back to normal.

I immediately started researching. I read the information the doctor gave me, found the Mayo Clinic's page on Meniere's, and visited a number of other webpages. I found dire warnings that I would go deaf in both ears and be completely incapacitated with vertigo, encouragement that I could still live a normal life, and everything in between. It was all very bewildering, but I tried to keep up my spirits and get on with life. My ear gave me a little trouble from time to time-some pain, some pressure, a little trouble hearing from time to time, but mostly nothing I couldn't handle. And this is one of the things about Meniere's-between attacks you are normal. It's a chronic and progressive condition, but not like diabetes or high blood pressure, where it's with you every day. When you're not actually having an attack, if your hearing is still good, you don't seem to have a problem. That in itself can be a problem-people can find it hard to believe there's anything wrong with you, and they may believe you're malingering when you have an attack.

I still didn't know my triggers. I drink tea, and I know caffeine is to be avoided, but I would literally have to be on my deathbed to give up tea. I've been brewing and drinking tea since I was a little girl and I wasn't willing to give it up. It's pretty weak tea, too-I use four bags to make one gallon, and I only drink a couple of glasses a day. It probably works out to one bag a day, and I just didn't think that was the problem. And it wasn't. In April, I went out to lunch with my husband. I was in the mood for hot dogs, so we went to a hot dog place. The next day, there was a big box of goldfish crackers at work and I ate some because they were there. That night, the water was turned off in my building and I couldn't make myself something to eat, so I took something out of the freezer. And the day after that, I woke up with a full-blown attack. The vertigo was so bad I could barely stand, I couldn't hear on the left side, and the pressure and noise in my left ear was almost unbearable. I missed two days of work-I felt better the day after the attack, but not quite right and the doctor warned me that I needed to rest if I wanted to recover. I listened to the doctor.

And I identified the trigger. All that salt-I would just avoid salt in the future. Easier said than done-they put salt in everything. Everything. I know about things like pickles and potato chips, but who would have thought ice cream and cereal and bread could be loaded with sodium? I switched to sea salt, use it very sparingly when preparing food, and read labels before I buy anything prepackaged. I also drink 8 or 9 glasses of water every day, and so far it seems to be working.

So far. As I said, this was a devastating diagnosis. I can deal with pain, and we all know the experience of going to work when we're sick but we can't afford to miss a day. Somehow I've always been able to tough it out, whatever was happening. But you can't tough out vertigo. When it's bad, you can't even stand up. To have this hanging over my head, never knowing when it's going to hit, knowing there's very little the doctor can do-it's frightening to have so little control over myself. I'm mostly doing the right things, and I would even consider giving up tea if it looked like I would be completely disabled, but even with a perfect diet and the most advanced medicine, I could still have an attack any time and be incapacitated. It's the hardest thing I've ever had to deal with.

Life goes on. I find myself cocking my head to the right-I seem to have some slight permanent hearing loss already. I keep gum handy for when I feel that pressure in my ear. I have some embarrassment when someone speaks to me on my left side on a bad day and doesn't understand that some days I can't hear and other days I can. I drink my water and I watch my diet. And I pray.


Saturday, April 23, 2011

Should we have rights?

I recently watched an episode of the television show House in which Martha Masters, a medical student, was overseeing the case of a young girl with cancer. The girl was planning on sailing around the world to break a record when she was diagnosed with cancer in her arm. The treatment was amputation, a treatment she was willing to undergo after her sail. And there was a good chance she would die of the cancer long before she finished going around the world.

Masters found it unacceptable that the girl was willing to risk her life for a record, and that the girl's parents were willing to let her take that risk. The medical student gave the patient a drug that caused a cardiac arrest, told the parents the crisis was caused by the cancer, and handed them a consent form to allow her to cut off their daughter's arm. Problem solved.

Well, not really. The problem is that in the United States, patients have the right to make their own medical decisions, whether or not they are smart decisions. Even a minor can express their wishes, and if their parents or guardian is willing to abide by that decision, a doctor has no right to override the wishes of the patient. Legally, all a doctor can do is give the patient the information. Whatever the patient decides to do with the information, the doctor must abide by it, even if the patient should decide not to have any treatment at all. Even if that means the patient will die.

It was an interesting episode, but what was really fascinating was the reaction at the Internet Movie Data Base (imdb.com). Many people took it very personally that the girl was willing to risk dying for a record. There was a great deal of invective towards posters who pointed out that legally the girl was entitled to live her own life and make up her own mind. There was also a great deal of praise for Masters for ignoring the wishes of the patient, the refusal of consent of the parents, and the laws governing the medical profession. Without really thinking about the implications, people posted comments about hoping their doctor would save their life even if said doctor had to violate their rights to do so.

Are these people right? Should we even have rights when it comes to medical decisions? After all, doctors go to medical school for many years and then train for the rest of their lives. They are the ones who are qualified to make the right decisions. The average person doesn't have much medical knowledge, and we all know people who take such poor care of their health it's a wonder they are still alive. Isn't it better to let the doctor be in charge, for their own good?

Maybe it would be, if it wasn't for a little thing called freedom. Freedom to choose is also the freedom to choose wrongly. And I guarantee that whoever you are, whatever your position in life, you're doing something at least once a day that someone, somewhere, would find fault with and prevent you from doing if they could. Overweight people who don't exercise, smokers, people who don't use sunscreen, people who use antibiotics for viruses-the list of poor health decisions is rampant all over America. And the fact is that we like it that way. We like being able to eat what we want and do what we want and avoid what we don't want. We like being able to exercise autonomy over our own bodies, and we like being able to ignore the doctor if we are told to do something we don't want to do.

Is this a good thing? From a completely logical standpoint, looking at how our behavior affects society and costs society, no. From the standpoint of our human rights, the answer has to be yes. As John Milton said, "Who overcomes by force hath overcome but half his foe." It's not like forcing people into correct decisions will change their minds or hearts. Forcing someone to do something is just changing behavior, and that behavior can only be changed permanently if the person wishes to do so. It's terribly frustrating to see people make bad choices that impact their health and cost society millions and millions of dollars every year. It's also reassuring that in the United States, people have the freedom to make their own choices. Freedom to choose is also the freedom to choose rightly, and when we do so, because that is what we wish to do, we strengthen ourselves and we strengthen our country. Freedom is never cheap or easy. That's what makes it worth having.