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Second Opinions Are Important

Jan 24, 2008
At age 35 I married a man 16 years my senior. For the first time in my life I felt I had finally met someone that I could truly live with for the rest of my life and be happy. We have been and were very happy for the past 6 years with everything looking very bright for the future.

We had been very happily married only a couple of years when our worst nightmare began. One night as we got ready for bed when he layed down to go to sleep, he couldn't breath. Every time he layed flat he would immediately sit straight up and say I can't breath. This was one of the scariest things I've ever been through in my life.

Our first thoughts were lung cancer or something like that. My husband has always been a very social person so he loves to entertain. He smokes and drinks so we assumed that he was starting to suffer some serious consequences to his years of abusing his body with things that we all know aren't good for you.

After a long and sleepless night of trying to sleep sitting upright in a chair, we made and appointment to see our family doctor the next day. We thought for sure he would be able to tell us what the problem was and give him something that would help him lay down and be able to breath so he could sleep.

My husband owned a small consulting company and was forced to make a business trip the day after the doctor's appointment. When he was checking into the hotel the night before his business meetings started, he got a frantic call from the doctor's nurse. She said the doctor had the results of his tests and that the doctor wanted to see him right away. My husband basically went into a panic with this call. He explained to the nurse that he was out of town and that he could not return for several days and convinced her to let him talk to the doctor on the phone rather than wait several days and worry about this while trying to conduct business. The doctor explained to my husband that the xrays indicated his lungs were both about half collapsed and this was surely the reason he couldn't breath when he layed down. The dotor told him that he would need to see a respiratory specialist to find out why.

This was serious! When we tried to get an appointment with a respiratory specialist we were told it would be 2 weeks. For the next two weeks my husband would have to wait until he was totally exhausted and then hope to fall asleep sitting up in a chair.

When my husband's appointment day with the respiratory specialist finally came, we were of course very nervous. The doctor examined his xrays, gave him a test that measures a person's lung capacity, did a little poking and prodding and then announced that my husband was afflcted with ALS. He explained that ALS causes a loss of muscle control and and that in some severe cases the muscles affected could be partially if not completely paralyzed. The doctor told us that my husband's diaphram was paralyzed and his ability to breath at all was through the use of his chest muscles. His diagnosis was such that we were pretty convinced that he would most surely die from this condition since the diaphram is one of those muscles you can't really live without. His only recommendation was that we seek the advise of a neurologist for treatments of this disease.

So why is this paralyzed muscle to necessary that without it he would die? I thought there must be alternatives to death. Respirators or something? The doctor explained that the diaphram essentially moves your stomach out of the way so that your lungs can expand when you breath. A respirator can force air into your lungs but if they can't expand it would be pretty useless. He further told us that he wasn't just basing his diagnosis on the brief exam or the xrays. He told us that he noticed my husband had a visible shake or tremor in his hands and his neck and that these were most surely also due to the ALS.

We made an appointment immediately to see a neurologist in hopes that he could recommend some type of treatment. Once again of course, the closest appointment date was several weeks later. Things were getting progressively worse while we waited for the appointmen with the neurologist. We now found that my husband couldn't even walk more than the distance from the parking lot to the grocery store without having to sit down and catch his breath. All the while still sleeping in a recliner in an upright position breathing only with his chest muscles.

Finally the day of the appointment with the neurologist arrives. The doctor does a very in depth examination of my husband, asks about his tremors, tells him to walk a straght line, follow my finger etc. And then the bombshell! The doctor says, "no, you don't have ALS"

He explained that after examining my husbands prior medical records, which included several doctor visits over the years about his shaking hands, that the tremor was a common condition called an essential benign tremor. This made sense to my husband because he said he had the shakes since he was a teen and had just learned to live with it. This of course left us with the burning question, "why can't he breath?" To determine why his diaphram was paralyzed, the only part of the respiratory specialist's diagnosis that seemed credible, he suggested my husband undergo an encephlomiogardiogram.

We scheduled this test and when it was over with my husband cried like I've never seen anyone cry before. He described the test as one of the most painful things he has ever experienced. They attached a whole bunch of electrodes all over his body and subjected him to hundreds of little, yet very painful, shocks. The test was supposed to determine how well his nervous system carried signals from his brain to the muscles in his body. He described the shocks like holding onto a car's spark plug when it discharges only that these shocks were all over his body and several hundred a minute.

After this test was completed, my husband remembered that several days before his conditon came up that he had fallen through a deck that was being added to a freinds house. He said that as he fell throuh the deck he reached up with both arms and grabbed the lower support beams to make sure he didn't fall on his head since the deck was about ten feet above the ground. Although he said he had some shoulder discomfort the next day from this he didn't think he had been injured in any other way.

At last! the doctor explained, this is the cause of your breathing problem. The sudden jerk to his body had caused the frenic nerves that feed signals to his diaphram to be strectched and possibly pinched. He explained that the test indicated the signals to the diaphram were getting through but that they were so weak his daphram was not responding to them normally.

3 years later and all is well. The frenic nerve has finally repaired itself. My husband can now sleep laying down, he can excercise and do all of the things he could do before the accident. His lungs has re-inflated themselves and he feels great. Now he just needs to lose the thirty pounds he gained over those years from having to live like a couch potato. So what is the moral of this story? Always get a second opinion.

Although he has fully recovered, his business failed because he was unable to work for almost 4 years. Together we started a suite of online ecommerce stores in order to try and replace his lost income. Although niether of us are computer experts by any stretch of the imagination, we have been able to get these stores up and working. Now we just need to figure out how to help people find them so they can buy our products. Recommendations/assistance/advice are always welcome.

True Story.
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