an uncommon diagnosis

I'm Still Alive

2009-05-22T22:17:00.001-07:00

Post-surgery and I'm still alive. I can also breathe!! Yes! But I feel icky and exhausted so I'm going to return to my napping. I'll write more later. Smooches.

Surgery Scheduled!!

2009-05-20T09:19:00.000-07:00

My super high-tech LASER surgery is scheduled for tomorrow! I learned the date when I was just done with finals and only had a few days notice. I’m super excited. I leave for Portland tonight (I'm moving all of my junk with me since I'm there for the summer for a job. There couldn't possibly be anything that could go wrong with having major surgery near your vocal cords five days before you start a new job, right?) and then surgery tomorrow early in the morning (5/21/09). I’m marking today on the calendar as the last day where I can’t breathe! Holla! Updates later.

Portland

2009-05-20T09:14:00.000-07:00

I had to wait over a week for a call to schedule my appointment with Dr. G and then it was for several weeks out. Argh! I’m going to have to learn to expect a serious delay on things, but when it is difficult to walk a few hundred feet without getting winded, it makes my already minimal patience stretch to the limit.

Thankfully, the day of my appointment arrived and I drove the two hours to see him. Overall, I would say that my visit with Dr. G was kind of interesting. First because his staff refused to give me directions to his office, they claimed the information would be included in a patient packet that would arrive by mail. I received one item in the mail with the privacy policy and nothing further. I thought I was being rather clever by using the return address and google maps to identify the way to get there, only to arrive and find out that the entire Oregon Health & Sciences University complex has the same address. After being given inaccurate directions by two different staff members (one of whom worked in the actual office that I was looking for) I stumbled to the appropriate place by the appropriate time. Secondly, the visit was interesting because of the information that I received.

Things weren’t going to be as simple as I had hoped. Apparently, this "glottic stenosis" is going to be something that will have to be attacked over time. As it is scar tissue, the issue with just trying to go in and clear it out is that it can just scar over and come back again and we’ll be right back to where we started.

First what we are going to do on Thursday is a hard laryngoscopy where I am put under anesthesia and a hard tube is placed down my throat. From there they will investigate the exact location of the scar tissue so that if we need to do a more permanent follow up surgery they will have a plan of attack (see below). While they are down there investigating, they are going to cut the scar tissue (with a laser!) so that I can better breathe through it, and stretch out the hole so that it is as wide as possible. This is a simple procedure that will be done on an out-patient basis so I will be going home that night. They said that I will feel icky from the drugs that they give me to put me out, but that otherwise I will just have a sore throat. They also said that I will be able to breathe better immediately and I'll feel like a whole new person. This may be the first step to a long process or it may be the end. Some people have this procedure done and they can breathe fine for five years or so, and since it is minimally invasive they just have it done every five years. Some people only get three months to a year out of this procedure and if that is the case then we will want to investigate a more permanent fix.

To attempt to permanently correct the situation, they need to not simply remove the scar tissue, they need to remove the area that is producing the scar tissue. How they would do this depends on the location of the problem. Prepare yourself now for being subjected to my really bad analogy:

Ok, so picture essentially a funnel with a hose attached to it. The funnel is the cartilage at the top of your wind pipe that houses your vocal cords, which are located towards the top of the funnel and the hose is your windpipe. With scar tissue too close to the top of the funnel they can’t operate without risking a possibly devastating injury to the vocal cords. If the scar tissue is lower in the funnel, they would operate by removing a segment of the funnel near the scar tissue, just in the front, and closing that back up with something else that I don’t quite recall. The biggest side effect to be aware of in this surgery (aside from the traditional “death” and so on) is that you can lose some of your high vocal range. Apparently this is a big concern for singers. I am not a singer. And, my voice is normally quite high, with my high range being in the vicinity of a squeak that only dogs can really hear. If the scar tissue is at the junction of the funnel and the hose, then things get tricky again because of the location. They would have to take that on a case-by-case scenario. If the scar tissue is located entirely in the hose, then we have a relatively simple scenario. The hose is not really a hose so much as an articulated tube, essentially a bunch of lifesavers candies stacked up in a line. They would pop out the offending lifesaver and just close the rest back into a stack. Each of the more permanent procedures are very invasive, and through the front of the throat. So we are looking at a wound in my neck and over a week in the hospital recovering. I’m not too interested in that route so obviously I’m hopeful that this simple surgery will work.

Dr. G seemed like a great guy, I appreciated the way that he addressed all of my concerns and questions, not rushing through the appointment. I feel comfortable with his diagnosis and I’m excited to get this show on the road. We move to the next step where I am to wait for a call from the surgery scheduler. Because I am excellent at waiting.

My Cavernous Nostril Cavity & Impatience

2009-05-19T09:11:00.000-07:00

There are two things that I feel are important to share with you, my reading audience. (Admittedly, my reading audience is likely just my mom, but I won’t let that stop me from picturing a wider range of readers.)

First of all, I believe that I may have what can only be described as a cavernous left nostril. I believe this because I have now had several fiber optic cables passed through my nostril into my throat and it has never really been a problem. Just slides on in. At first I assumed that was normal and that my doctors were just very skilled. Since then, I’ve encountered several other people who have had the same procedure and they all recalled the nostril as being a particularly painful moment that was the most difficult part of the entire procedure. Further, I have had each doctor say, “The worst part is almost over” and then follow it with a, “Oh! Well, now, there we go, easy!” I’ve never considered my left nostril before but now I wonder at the fact that I have so much space in there. Astounding.

Secondly, I feel that it is important to explain my impatience. While I am, by nature an impatient person, the current situation would really put anyone on edge. My first appointment with Dr. D, and the beginning of finding out about the stenosis was towards the middle of the school semester. In a non-medical issue world, I would have a couple of weeks to really study for finals, I’d take my finals, have about a week off, and then move to Portland to start working at a new summer job. The problem with inserting a surgery somewhere in here is that it doesn’t really fit. I want to be able to breathe as soon as possible; I can’t help but believe that everything will be easier once this gets taken care of. But I’m also not looking forward to starting a new job by asking for time off. That just doesn’t go over super well normally. So scheduling is going to become increasingly difficult as time progresses. But, that said, I have no control over this process so I guess I need to just chill out a bit and make do with things however they turn out. The wait continues.

Sub-Specialist Required

2009-05-18T12:10:00.000-07:00

Waiting for Dr. F’s office to call me was just ridiculous. I’m not by nature a very patient person. Even when I try really, really, really hard, I’m still not the type of person who would qualify for that designation. Dr. F’s office took about a week to call me and then the first available appointment was another week out. Having dealt with this breathing issue for so long, and to be so close to a resolution, any delay was just terribly frustrating. Dr. D had assured me that this finding was a good diagnosis and that it would be easily fixed, I would meet with Dr. F and then probably just schedule a procedure and within weeks I’d move on with my life.

Luckily the day of my appointment arrived. I was ecstatic. Dr. F did a complete examination of the situation, which means I enjoyed yet another camera being passed through my nose into my throat. This time, however, it was hooked up to a television screen so that I too could wonder at my throat anomaly. And he took pictures! Throats look weird. Anyway, it appears that Dr. D’s prognosis was fairly correct. I did have tissue in my throat that prevented me from fully breathing. However, it was more of a web across the windpipe. It had a large hole in the center and some smaller thinner spots/holes in other areas. I would definitely need to have it removed. I was also advised to not do anything active until I had it removed.

Unfortunately, the issue was not as easily removed as Dr. D had anticipated. Due to the location of the scarring, near my vocal cords, and due to the type of surgery required, Dr. F felt that no one in my city was really qualified to perform the procedure. Dr. F, who was a very good doctor and an expert in the field, look a little bit ill at the mere thought of operating on it himself. He was going to refer me to a specific specialist in Portland, two hours away. He also hesitated to postulate what method of surgery the sub-specialist might use for the procedure. He spoke in vague terms and exhibited cautious optimism that my problem could be adequately resolved. I left feeling like I was in good care, but also a bit more worried than I had been before. This wasn’t going to be a quick and easy solution. I was told that Dr. G’s office would call me within a week to schedule an appointment with him. The waiting began again.

Beautiful

2009-05-17T20:05:00.000-07:00

I returned to see Dr. D at 7:00 a.m. of the day scheduled for the laryngoscopy. For some reason we had to do it early in the morning, perhaps they could tell that I’m the type to be more docile in the early morning, disoriented in my lack of sleep. Whatever the reason it is, I’m sure it makes a ton of sense. Since my stridor breathing is more obvious after I’ve been exerting myself, Dr. D decides that I should run up and down the stairs so that I’ll be symptomatic when they use the scope; akin to making certain that your car is making that weird sound when the mechanic is actually looking at it. I’m happy to comply, I love running up and down stairs, I just wish that I could breathe while doing it.

Dr. D places herself and her medical staff along the stairwell for safety, to assist me if I get dizzy or anything, and I off I go, darting like an Olympic athlete up and down the stairs with such grace that angels surely held their breath at the sight of it. I’m positive that is how it went. Ok, actually I don’t really remember it all to well because I was very winded and dizzy. After just a few moments my stridor symptoms appeared in full force and I raced with my crack medical team to the diagnostic room. Before running the stairs the medical assistant had shot assorted sprays up my nose to numb it. Which is good because as soon as we reached the room I hopped up on a chair and Dr. D expertly slipped the scope up my nose (left nostril for those taking notes) and through my sinus cavity area (I’m unsure of the technical term) to the back of my throat.

The laryngoscopy does not hurt. It does feel really, really weird. With the nose numbing medicine the feeling may have been dulled, but you can still feel the pressure of the device as it passes through your face. Once in your throat, you don’t really need any numbing because you have stuff in your throat all of the time (food) and it is relatively spacious. But feeling the movement of the fiber optic wire snaking down feels unlike anything you’ve normally experienced while eating, and so every alarm in your brain goes off. I’m drowning! I’m choking! I’m sneezing! I’m coughing! Aaawhooooga! Alert! Alert! Though not in pain, you are trying to keep it together and not freak out and screw anything up.

Getting past the bizarre feeling of the laryngoscopy, I was quite amused by the rest of the scenario, namely that I had this cord periscoping out of my nose, and a very scientific type person peering down into the depths of my nose cavity and beyond. For some reason images from the Yellow Submarine movie come to my mind, the free floating abstract art where, in cartoon form, the Beatles would slide through different worlds. The inside of a space was also the outside of the space, and if you looked out you were also looking in. My nose was, in a way, the universe. I probably would have taken this line of reasoning further, discovering a state of true zen, when I was snapped out of my pondering by the excited exclamation of my doctor. She had found a very obvious ring of tissue just under my vocal cords. In one spot my windpipe was reduced to the opening size of a small drinking straw. It was enough to breathe when I was standing still, but it wouldn’t be enough air for any kind of activity. Crazy.

Dr. D had her medical assistant run to grab Dr. E so that he could independently take a look at the situation. Dr. E was an older gentleman, the type of person whom you immediately felt comfortable with because it was clear from his demeanor and statements that he has been practicing medicine since forever. He raced into the room and took the scope from Dr. D, delicately handling it and looking through. With one deft movement he was able to slide the scope deeper into my throat for a better look, gagging me a bit in the process, but he was pleased with the results. Actually, he was very pleased with the findings. He was beaming and glowing with excitement at the finding of my sub-glottic stenosis. He kept marveling at it, “Its a textbook example! I haven’t seen one of these in, why since med school! . . . Its beautiful. Just beautiful! An excellent example!” He forced the medical assistant to take a look before taking the scope back and staring again. Finally Dr. D softly nudged him, reminding him that the numbing agent would wear off of my nostril sooner or later. Dr. E paused before conceding that she was right, taking one last longing look through the scope before handing it to her. The scope leaves easier than it enters.

What now? Since Dr. D was a asthma/allergy specialist, she felt that it was best that I see a Ear, Nose and Throat specialist, because they would likely need to operate. She made a referral and I was to expect a phone call in the next few days to schedule an appointment with the specialist, Dr. F. But, she assured me that this was good news. No chronic disease, and that this was something that they could probably easy take care of. No worries. Just a snip and done! Easy.

What?!?

2009-05-02T23:33:00.000-07:00

I was maybe ten minutes into my doctor’s appointment with Dr. D when she said, “There is no way that you have asthma. Nope. It is something else. Let’s get to the bottom of this.” What? But I’ve had asthma for over a year. And now you are telling me that I . . . What?

My head spun.

Listening to me breathe, and hearing my stridor wheeze, she didn’t hesitate. It wasn’t my lungs, and it wasn’t my mouth or sinuses, it was between the two. Something in my throat. Just to be certain she had the medical assistant run me through several asthma tests and found everything was normal. Better than normal, everything was robustly healthy. I just couldn’t breathe is all.

The only test where I had strange results was the spirometry, it is a test where you breathe through an instrument attached to a computer, and it gives a chart of the volume and speed of the air you inhale and exhale. Usually, in a healthy person this would show a diagram shaped like a circle, the inhale is half the circle and the exhale is the other half. Time and time again my diagram looked like a box. It was very flat. Apparently this was not how a healthy spirometry looked, nor how asthma spirometry looked. It was just too boxy in every way. I was familiar with my weird boxy breathing because at the school health center it had confounded everyone, but after discussion they had decided that it was mostly normal-ish. Their diagnosis of asthma had been, I think, mainly based on the fact that they could hear me wheeze and be unable to carry a conversation. I recall them commenting on my lung function being weird, but fine, and finally decided that in any course I clearly had asthma because I couldn’t breathe.

Dr. D decided that we needed to get a closer look at things and sent me for CT scan of my throat and chest. It came back with nothing that would indicate a problem, aside for some slight mucus in an odd place in the throat. With this in mind, Dr. D decided to have me come back to the office for an laryngoscopy, essentially where a flexible tube with a fiber-optic device and a light is threaded through the nasal passage and down into the throat. What better way to see what was going on than to take a direct look at things! I was game, it sounded like a unique experience, and I was ready for answers.

Another Try

2009-05-01T22:55:00.000-07:00

Over time I realized that no matter how much money I spent on designer asthma drugs and air filter/purifiers, no matter how much I tried to avoid being outside on high pollen days and to only exercise indoors, no matter how much I abided by my doctors orders, my life for all intents and purposes sucked. The idea of living like that forever was just untenable.

For one thing, it was expensive, and without a job my savings were being depleted faster than I was comfortable with. For another thing, my breathing hadn’t really improved. Besides for the concern limited breathing causes in the obvious “staying alive” scenario, it was also a concern because it was making me totally depressed. I’m happiest hiking and playing outside, which wasn’t really an option anymore. Plus, in my life I have failed to develop any successful methods to deal with stress other than working out until my body is so tired that I have no longer agitated and just fall asleep. This isn’t really available to me anymore because I will get dizzy way before my body feels at all exerted. Instead I spend half the night awake and obsessively replay random things in my head, my body and my mind tense. Then I'm tired and unable to focus during the day. Now couple this with being a law student whose entire world is actually created with (I can only assume) the goal of intensifying and magnifying the levels of stress that you are forced to handle.

Unfortunately, law school is also coupled with a big chunk of “not enough time.” You don’t have time to go grocery shopping, to do laundry, anything. I was working on creating a huge conference, doing well in classes, law journal, etc. Somehow, my attempts at dealing with my breathing weren’t going anywhere and I was so busy and getting busier, that I lost hope and stopped making appointments to see the doctor. I started to ignore my emotional angst and my world shrank to just trying to get through each day. A year had past since that first appointment at the health center before I decided that this was unfuckingaceeptable and that I needed to pursue another option, every option and finally stop losing myself to this stupid body malfunction.

After soliciting fellow students for recommendations, and armed with some new, better health insurance, I made an appointment with Dr. D. This new doctor was an asthma and allergy specialist, and since this was allergy induced asthma it seemed like the perfect fit. I couldn’t wait for my appointment. I was going to find a solution. Or else.

Down the Wrong Path

2009-04-30T00:17:00.000-07:00

I didn’t doubt the asthma diagnosis for a minute. In fact, I had secretly suspected asthma was the issue. Having asthma made a ton of sense, I have a family history of it and, well, my current issue involved difficulty breathing. The confirmation of my asthma suspicion was a bit disturbing; a chronic disease is never good news, but then again sometimes just having an explanation for how you are feeling can be somewhat comforting. With a diagnosis you have the chance to work on a solution and to improve things, hopefully. Maybe get back to my past life of being winded walking up stairs rather than from sitting and reading a book.

After deciding upon an asthma diagnosis, Dr. B put me on some asthma medication, and prescribed an emergency inhaler. Now that I think about it, Dr. A in the Midwest gave me my first emergency inhaler. She was an allergist (she was actually many allergists, it was a training hospital so I saw a different doctor each appointment. In my mind they have all sort of blended together into this harsh-speaking, intimidating yet exhausted looking, brunette woman) and when I complained of difficulty breathing when I would run or climb stairs, she said that there didn’t seem to be anything wrong with me breathing wise, but that perhaps it was an allergy issue because I would only run outside in the park. The inhaler never really helped so it ended up at the bottom of my sweaty duffel bag forgotten. Anyway, Dr. B put me on some asthma medication and gave me an emergency inhaler and sent me on my way.

I tried the medicine for a few months, knowing that these things can take time, before I decided that things simply weren’t getting any better. In fact, they were getting much worse. Dr. B decided that we should try some different medicine. This medicine ended up not working so well because not only did my breathing not seem to improve at all, I also became depressed and stopped caring about schoolwork. Or leaving the couch. Luckily it was not around final exams and after forgoing the medicine I was able to catch up on my studies. I went back again to something new. This time I saw Dr. C because Dr. B was not available. Dr. C tried yet another prescription. It maybe sort of felt like it was working. I guess sort of. I wanted it to work really badly, particularly because I was told that it was the best option that existed, and sort of the last line of defense. And, on a side note, did you know that best options are quite expensive? They are. Very expensive, even with insurance, particularly with crappy insurance like I had. As an unemployed student living off of my savings account, paying for high-end, fancy-pants asthma drugs wasn’t really something I could afford, but I paid the money without hesitation. I wanted so badly to be able to breathe.

The Back Story

2009-04-26T23:34:00.000-07:00

So I should really start by explaining that I’m one of those kids. You know. One of the classic nerd types: near-sighted, allergic to everything and wheezy. I’m also the type to read textbooks for fun (which is awesome when they are later assigned for a class) and spend hours building the best spreadsheet ever for [insert topic here]. So basically I’m doomed to the full lifetime nerd experience. Except, I wasn’t always someone who had difficulty breathing, that nerd characteristic grew with time.

I don’t really know when it started to become an issue. I mean, though I would never have qualified as a particularly athletic person, it always seemed that I ran out of breath way before my the rest of my body was feeling tired. I’ve always been drawn towards activities that were individual and allowed for me to go at whatever pace I could handle. During undergrad, seven or eight years ago at this point, my roommate would tease me for being winded and always coughing, clearing my throat. While I can’t tell you when it started, I can tell you when it started to really impact my life.

About three years ago now, I worked in an office building on the fourth floor. I would make a point to take the stairs rather than the elevator, but it always seemed like I was painfully winded by the time I made it up the four flights. I assumed it was due to being out of shape, but no matter how often I took the stairs, I was terribly winded by the time I got to my office. So winded that other people would look at me with concern and I couldn’t speak for several minutes. That was when I first heard the wheezing sound. No one else could hear it. I’d try to point it out to people, but everyone just assumed I was being dramatic. Which I don’t blame them for because I am the type to spontaneously burst into song and prance around the cubicles. To me there was definitely a wheeze, though I now know it is called “stridor breathing”. It happens on the inhale more than the exhale. It feels like breathing through a plastic bag, like there is a film you are trying to breathe past. Then you clear your throat with a cough. It is a vain attempt to clear a passageway because you can’t get the plastic to go away. The sound is how I imagine the plastic taut against your windpipe sounds as air passes around it. I use a plastic film as a bad analogy, but I have yet to come up with anything better.

Wheezing while walking up four flights of stairs is annoying, but it isn’t really an impact. An impact on one's life is living less than half a mile from school, an eight minute walk, and taking fifteen minutes sitting on your couch gasping for air to recover. That started to happen about a year and a half ago. At that time I had moved from the Midwest (I love you Motherland!) to the Pacific Northwest. I’m very allergic to grass and have always had intense seasonal allergies. Well, apparently, I moved to the largest grass production area in the United States. When I was first told this, I assumed they meant grass as a slang term for marijuana. Which isn’t my scene so I didn’t think much about it. I later learned they meant your standard lawn, Kentucky Blue sort of seed. This is relevant because my new city also has the prestigious honor of being known for its high incidence of allergy-induced asthma.

Again things are hazy. I moved to the west coast for a grad program and immediately began lugging heavy books to and from school. My allergies were out of control and I was rocking the runny nose and watery eyes that are oh so attractive. And my daily walks just sort of got harder. When I finally realized that there was a real issue, I went to the health center at my University for help. I want to make perfectly clear that I received excellent care there. Due to my allergies and the history of the area, it only made sense to diagnose me with asthma.

Pay it Forward

2009-04-25T20:11:00.000-07:00

Recently, I received a rather uncommon diagnosis. One of those odd sorts of medical trivia that send you on a scavenger hunt of tests, diagnostic procedures, specialists (eventually sub-specialists) and an endless parade of waiting rooms with bad magazine selections. I came home from my various appointments armed with what bits of the lingo that I could recall or at least had thought to scribble down in my ragged notebook, phonetically guessing at the spelling. Ever the diligent researcher, I would immediately march over to my laptop and begin to google and wikipedia search every tidbit (because everything found on the inter-web is completely accurate. Right?), looking for some information that would help translate the medical talk I had heard to something that I could identify with, a personal example of the situation. Someone who could describe how things felt, physically and emotionally, beyond the carefully metered speech of my healthcare professionals. Usually in my web searches, I would stumble upon some random website, or blog or other account of whatever I'm looking for. These provide links to other sources, and my curiosity is eventually satisfied. This time all I could find were definitions and textbook excerpts that left me with nothing. Well, nothing except for very graphic photos and descriptions of things gone wrong. Not helpful.

But then I received an e-mail from a stranger. Apparently, my mother's co-worker's child's teacher, Dee, had the same diagnosis. Random. Dee e-mailed me because she wanted to be resource for me if I should happen to have any questions. We chatted on the phone and it made things a million times better because I had that first person story. I had the resource of information that I could go back to if I have any questions. That is a wonderful feeling. Thinking about it, it made me want to be able to be there for someone else if they should be in the same situation. But the chances of meeting someone by chance aren't super likely. So I figured, for the first time in my life, I'd write a blog. That way if someone else has sub-glottic stenosis, they can search google, and find a personal story mixed in with all of the medical definitions and kind of icky photos.

So, I plan on writing about my situation as things progress. I suspect that the act of writing stuff down is somewhat therapeutic in its own right but I'm hopeful that it will be of actual use to someone else who is in a similar situation. Um. So I guess here goes . . .