1st week Post Op issues

If anyone attempts to allude to Endoscopic Transphenoidal surgery as being anything other than brain surgery or even "minimally invasive", don't buy it. Make no mistake, this is brain surgery and it is invasive. There is a reason that a neurosurgeon is performing the operation and he has a team of specialists assisting him. I guess in some respects I convinced myself that this was less than what it really was. The risks are many, the complications are great and it involves the neurological system which we really don't know much about. Consider the complexity of the pituitary gland and how easy an imbalance occurs. Our bodies and how it regulates itself is miraculous by design. A man with specialized training had to go in there, remove this thing which insisted on growing and somehow not disturb anything. How realistic is that??? As I mentioned previously, my symptoms prior to surgery were minimal. Here is the list if issues 1 week post op in order of observation:

• Headache/head pressure
• Extreme neck/muscle pain
• Pervasive ammonia or no sense of smell
• Distorted voice/sounds
• Stabbing pain in left ribcage

It took a day or two before I began discerning the different things I was feeling. The first day felt more like one big train wreck. I hadn't taken inventory, heck, I didn't even know I needed to take inventory of what worked and what didn't. As the days passed, I learned to distinguish between the head pressure, the nose pain, the neck pain, the soreness from the lumbar drain, the discomfort of the urethral catheter, and sleep deprivation.

First on the list was the headache and/or head pressure. This was to be expected and it supposedly will pass. My nose it tender at the location of the surgery but it rather blends in with the pain around my forehead. It can be described as an extreme headache but isn't localized to just the area of surgery. The pressure seems to encompass my entire head. The upside is that you have at your disposal a variety of drugs to control the "comfort".

Next is the neck pain. It reared it's ugly head on the very first day and is above everything else, the thing I feel the most. The only relief is to lay down and not move. Turning to one side or the other doesn't help. It's best to just lie still, face up. No amount of drugs contains it. If I lie still and try to rest, the intensity does pass. My doctor ordered an MRI of my spine to see if there something visibly wrong. In terms of pain or discomfort, I was well enough to go home as long as I remained laying down. Upon sitting up, however, the pain becomes overwhelming after about 5 mins.

Next is my sense of smell. My ENT came in 2 days after my surgery to remove the "packing" in my nose. Up to that point, I could not breathe through my nose. When he removed these gargantuan cylindrical gauze pads, it was like two large wind tunnels were opened up that led straight to the my throat. Never have I been able to breathe so freely through my nose before (or since). The removal of the pads themselves were uncomfortable but it went quickly and I think I had enough pain meds in me to take the sting out of any direct pain. Despite the ability to breathe freely, I did not notice any particular smell. In fact, it wasn't until well over a week later that I began to smell anything at all. And when I did begin, the smell was ammonia. I'm not sure what to make of it but I have other more pressing things to worry about.

Next is the distorted voices. I noticed this, mostly coming from the TV, during my stay in the hospital. It's subtle and I didn't think much of it at first. In fact, I rather dismissed it as possibly a defective speaker in the hospitals TV speaker. Upon returning home, it continued and I've asked others if they hear the same distortion but they do not. It sounds very similar to a distorted computer voice. I'm sure if I revisited computer movies made back in the 80's I could find the voice. There was one with Matthew Broderick where a computer wants to "play a game". That's the voice, it mostly comes from the TV but sometimes I'll hear it in my wife and kids voices.

Last on the list is a stabbing pain in my left ribcage which started the day after coming home from the hospital. I don't know what to make of this yet and I haven't had an opportunity to talk to my doctor about it. It it precisely located underneath my arm, about even with my nipple, and it is sensitive to direct pressure. The weight of my chest when I walk aggrivates it and I seem to able to avoid the pain by just supporting my left pectorial with my hand.

Well, that's it. During my recovery, the nurses made sure to check that I had my strength and sensation in my both my arms and legs (which I do). I can hear from both ears evenly(?), I can see directly and peripherally and my eyes dialate when light is introduced. I'm urinating the correct amount of volume so diabetes is no longer a topic of concern, my bowels are working (albeit stubbornly). I'm eating and sleeping.

Just taking this simple inventory, I'm again reminded that there are so many functions that our bodies perform naturally by miraculous design. I'm watching the Beijing Olympics and I'm observing these highly tuned, trained athletes. Talk about perfection, talk about ochestrating perfect harmony, talk about miraculous design. As I said before, our bodies are highly complex and as an engineer, I wish we were given the devine blueprints. That would eliminate a lot of the guesswork and I am convinced more than ever that our doctors are employing nothing more than educated guesswork.

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Acromegaly: the day of surgery

The day of surgery and the those leading up to it took on a life of its own. The momentum after the decision and surgery was scheduled, it was all I could do to just keep pace with it. A new job, a new car, my kids football practices, coaches meetings, perpare for surgery, it was a whirlwind. And the thing that kept going through my head was, am I even going to be here after Aug 12? The surgery was scheduled for 7:30am so I had to be there by 5:30am. I knew that once I went to sleep the night before, there was no turning back. Trying to align the schedules of 3 very busy doctors was hard enough the first time. Was I prepared? Well, yes, I guess. But I still had no idea what to expect. I arrived on time. Hospital activity was light as one would expect at 5:30am. Parking was easily available. To my surprise, nurses were waiting for my arrival once I reached neurosurgery. They take your vitals, weigh you in and give you a bag for your personal effects. They provide you with a nicely folded gown, still warm to the touch, and gave me instructions on how to put on the gown and compression socks. "The openning should be at your back and the hole at the end of the socks is for the balls of your feet, not your toes." Got it. Everyone you make contact with will want to know your birthday and if you've eaten in the last 12 hours. I had fun saying it backwards and forwards and forwards and backwards. Despite the time, everyone seemed to be in fairly good spirits. This was in contrast to my feelings of impending doom. The anesthesiologist was the last guy I remember. He was very friendly and assured me that he would be with me the entire time, monitoring my breathing, checking my vitals and if there is any evidence of pain, he would quickly remedy it. The "evidence" as he called it was an increase in breathing. I guess it's a sign that I'm recovering at some level so he makes sure that I remain "comfortable". The time before surgery went pretty quickly. I was wheeled into the operating room at percisely 7:30am and it was as sterile as one would imagine. The table and trays are all purposeful looking, there is nothing there that isn't needed. I chose not to allow my eyes to linger too much on all the instruments. My mind has a way of empathizing their many uses. It was also very cold in the room. I mentioned it to someone and within seconds I had another pre-warmed blanket on top of me. I will say this, the Scripps Green Hospital in La Jolla is top notch! I must have shown signs of nervousness because my anesthesiologist came into view and asked me how I was doing. I said I was doing okay but the nervous tap my hand was doing on my thigh was telling a different story. He said he'd give me something to help me relax. And sadly, that was it. I was planning on counting backwards indefinitely, I practiced all morning on my birthdate. But it was not to be... I was out cold with a simple sedative. I woke up around 12pm as I was being wheeled into my recovery room. I heard someone say room 427 as I awoke. They asked me if I knew what day it was. It was Aug 12, 2008, Tues. They asked me if I knew where I was and I said room 427. They laughed. Do you know why you're here? To remove a tumor... Yes, Mr. Del Rio, welcome back. I was glad to be back and I felt pretty good. I was a little tired but otherwise none too worse for wear. I didn't feel any pain but I did feel a lot of pressure, mostly in my nose, but otherwise I didn't feel a whole lot of anything. By 2pm I was starting to feel stuff, though it was very general and I wasn't sure what I was feeling to be honest, I was definitley beginning to feel things as the medication began to wear off. The pressure in my head was most prevalent and my nurse would come in periodically to ask if I needed anything. I would just shrug and say I was okay. "Do you want any morphine?" Do what? Are you kidding? I must have declined the morphine request at least a half-dozen times but by 3:30pm, I was starting to feel things, bad things, pain and lots of it. I called the nurse and she said, okay, why don't we give it another 30 mins. Oh, okay. It was okay when you wanted to push it but now that I'm requesting it, it's best to wait??? 4pm came and so did my shot of morphine. Another nurse came in at the same time and upon hearing that I was feeling "pain", suggested that there was no need for me to feel uncomfortable so if this shot of morphine didn't work, they'd be happy to give me another. My mind quickly started racing about the condition I would be leaving the hospital and whether or not I'd have to battle a mophine addiction in addition to acromegaly. I must confess to my ignorance and potential pharma-phobic tendencies. I never understood drugs and their propensity to create problems rather than actually fix anything. And I will never understand how the pharmaceutical companies "push" their cocktails of drugs while down-playing all the side effects and warnings. But I digress... They assured me that there was no chance for me to develop an addiction and it was merely to allow me to feel comfortable enough to allow the healing process to begin. Ah, well that's different. Fire away. Within 30 mins, 4:30pm, I had my 3rd shot of mophine. The first 2 were 1mg while the 3rd was 2mg's, and while this seemed like a lot, I really didn't feel anything. I wasn't sure what to expect or even what to feel. For some reason I was expecting some sort of euphoric feeling but that wasn't the case. It was a case of simply feeling nothing to the extent that I questioned whether or not I was receiving a placebo. They assured me I was not... :) All I remember about the rest of the evening was Agnes, my evening nurse (with a strong accent). Every hour, on the hour, I'd hear, "Hello, it's Agnes... Hello? I have to check your vitals, how are you feeling? Hello? It's Agnes. I have to take your BP, can you open your eyes and lift your tongue? Hello? It's Agnes..." At 9pm, at 10pm, at 11pm, at 12am, ... by 3am I thought the evening would never end, then 4am, then 5am, then 6am, then ... Beth! It was 7am and Beth was back! Oh Beth, why did you ever leave me... I kept having this horrible dream...

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Acromegaly: The only option

After my diagnosis, I met with several specialists to discuss my condition. All were of the same mind and agreed that surgery was the best treatment and needed to occur to a) normalize my growth hormone (GH) levels, b) relieve any pressure on the surrounding brain tissue and c) preserve the pituitary functions (which I now understand is responsible for keeping the delicate balance of chemicals within my body). Absent were any other options, including drugs, radiation, or even the option of not doing anything at all. Given the lack of negative symptoms common among other acromegaly patients, it seemed to me that doing nothing or taking a wait-and-see approach was at least something to consider. The questions in my mind were: What if the tumor had stopped growing? What if all the damage that it was going to do was already done? Is surgery really treatment? What about the risks? It reminded me of an observation I made when my son was only 3 years old. He had happened upon a hammer and you wouldn't believe all the things that looked like a nail to him. I wondered if the same phenomenom held true even for surgeons. I'm learning very quickly that while medicine has evolved significantly over the years, there is still a lot that we don't know about the human body. The brain with it's highly complex nervous system is one such area that only a fraction of what needs to be known about the area is actually known. Going back to what we do know, we know that my GH levels are still exceptionally high and bone growth will continue as long as that remains true. My growth plates have long since been closed so there is no chance of me becoming 6'5" (giantism) but my facial structure will continue to grow as will all the other areas that have already shown signs of growth. The other major concern was that my tumor would continue to grow (and there is no reason to believe otherwise), and it was just a matter of time before my vision was affected. I hate the uselessness of it all.

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Acromegaly: The Symptoms

The symptoms I experienced were very subtle as I was experiencing them and they didn't occur all at once. In the early years I had no trouble explaining what was happening and even considered it to be well within the realm of "normal" but over time it became harder and harder to explain. Also when viewed over time, the changes seemed drastic and seemingly occurred over night. It consisted of the following:

• Unusual muscular growth
• Harsh facial features (swollen soft tissue)
• Curly hair
• Excessive sleep required
• Facial bone growth, eye brow
• Enlarged hands and feet
• Enlarged jaw bone causing under bite

The first symptom I noticed (and welcomed) was the unusual muscle growth as I approached my 40's. I had long since given up on the notion that I could look like Arnold Schwartzenegger. Though every man I suspect wants to look and feel stronger, I resolved myself to looking athletic rather than muscular. As a youth and even into my adult life, my physique was slight bordering on different stages of thin. Going to the gym was a good way to stay in shape but I clearly could not compete with the typical patrons. My weight fluctuated just like everyone else but it usually stayed within 5-6 lbs of 142. I'm only 5'10" and have an elfin build. Prior to these events, I typically weighed between 138 - 148 lbs. There were only two occassions in my adult life where I exceeded 150 lbs and they involved very seditary changes which allowed my weight to climb to 155 lbs. But once I resumed my normal activity, I reverted right back to my pre-determined range.

I began to see unusual results in the gym during the summer of 2004. It had been exceptionally hot that summer and I had stopped running as a result. I dismissed the improvements as typical variations since I had recently altered my workout. These improvements continued however and my weight began to climb. Within 3-4 months, I went from 148 lbs to 178 lbs, that's 30 lbs of muscle, meanwhile my waiste size remained at the usual 30". It was the first time ever that I could look in the mirror and actually liked what I saw. I received comments from my friends which did nothing more than acknowledge that I frequented the gym. The 8 years prior to that, it largely went unnoticed. As I mentioned, it was a welcomed change and certainly nothing I wanted to label unnatural.

It just so happened that around this time that my daughters (all three of them) went to work for Cold Stone Creameries for the summer. They would routinely bring home ice cream and I had gotten into the "habit" of topping off dinner with a pint of the flavor of the day -- every night. At first I was concerned that it might lead to excessive weight around the middle but my waiste stayed the same and everything else just kept growing. My chest, arms, legs, hands and feet simply kept getting larger. Interestingly enough, my proportions remained the same, almost like a pre-destined thing, just bigger. Again, a welcomed change and another point of rationalization. At the time I thought I had unlocked the key to my body and that my metabolism just needed more calories to compensate for what I naturally burned.

The rest occurred later or at least wasn't noticed until much later. The next thing I noticed was my facial features. It wasn't until 2006, approximately two years after the growth started that I noticed that my facial features had begun to change. It was a photo I saw where I appeared exceptionally haggard. I retook the picture thinking that it was just bad lighting but the same mug showed up. What a shock! Could I really look that bad??? Evidently I did and I looked decidedly older. This was in direct contrast to my otherwise normally youthful appearance. My smaller frame was easily and consistently mistaken for someone 5-10 years younger than I really was. Again, the change was welcomed. In the business world, it helps to at least look your age when establishing your credibility and experience.

It was in this same year that my mom had also commented on my hair. She asked if I had gotten a permanent. A what? Do guys do that anymore??? I had no explanation for it but instead just accepted it as growing older. After all I had just turned 40, my dad had curly hair so perhaps it was just in the genes.

It wasn't until later in 2007 that I noticed that usual my hats didn't fit anymore. These were the same fixed-sized hats that I had been wearing for years as an adult. You tend to grow attached to them after a while. Inescapable was how large my brow had become. It was noticeably larger and ridged now, almost ape-like.

Another symptom which I summarily dismissed was my need for sleep. It was like going through puberty again. (Do you remember that summer where you slept for 10-12 hours and grew overnight?) As an adult, my usual sleeping habits called for 6.5 - 7.5 hrs a night. No more, no less. If I was tired, I slept a little longer, if not, it was shorter, but always inside that range. Then all of sudden I'm sleeping 9-10 hours! If I didn't get over 8 hours of sleep, I would start falling asleep at work. It was most embarrassing during meetings when I'd start nodding off right there in front of everyone. I eventually just found that it was easier to stand during these meetings to keep me awake and save myself continual embarrassment.

Ironically despite these things, I still had no cause to think that anything was wrong. It wasn't until the end of 2007 that my annoyance with changes in my bite that I finally thought to go see a dentist. My only motive for going was to see about getting braces again. My rear molars no longer made contact with each other and my bottom teeth were now extending beyond my uppers. It was annoying to be sure but as for alarm, I still had not connected these changes as being related.

It was the dentist that redirected me to an MD. After the general checkup, he had no other recommendation than a teeth cleaning. I had grown so accustomed to my impacted molar speech that I inquired about it when I didn't get one. What impacted molars? The ones that had been there since I was in high school, the same ones that every dentist I had ever seen recommends I remove without fail to prevent long term problems. What do you mean what impacted molars? A quick review of the x-rays showed that I no longer had impacted wisdom teeth. Go figure! (So I guess I right to leave them in after all these years.) Well, what about my bite? We discussed my braces in high school and he suggested that maybe my jaw was growing. Is that it? Well, no, you should probably see a regular MD as that's not normal. Oh, okay.

It was early 2008 when I finally scheduled a visit with my primary physician and thankfully, he took the office visit seriously. I must admit to feeling rather silly about scheduling an office visit to discuss "jaw bone growth". Even more silly as we went through the usual questions about anything being wrong. My prior physicals didn't yield anything other than you are the epitome of health and this visit wasn't any different. My eyes, ears, temperature, weight(?) and reflexes are all normal. "So you say your jaw is growing?" Well, no, not really. I don't know that it's growing, I just know that my teeth have been moving. "Uhum, I see." It all felt very silly. But he followed his procedures which led to the test for growth hormones (GH) which then led to the CT scan which reveiled the tumor.

Looking back, it all made sense but hindsight is 20-20.

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Acromegaly: The Diagnosis

I still remember the day I received a call from my primary physician. I had been with him for several years but I had never had the occassion to speak to him over the phone. If I ever called his office, I would leave a message and I would receive a response from his assistants or even the receptionist but never from him personally. To what did I owe such an honor, particularly when he begins the conversation with, "is this a good time to talk?" Sure, why not. He began to use terms that were not part of my normal vocabulary but I do remember hearing that my growth hormone levels were reportedy 14x above normal. That didn't stike me as all bad but I did agree to a CT scan to get more information. The CT scan later confirmed what the doctor had read about in text books, namely a rare condition known as Acromegaly caused by a pituitary adenoma. What did this mean? It means that I had a tumor growing near my pituitary gland. Not all tumors stimulate the gland nor does it get stimulated in the same way. In my particular case, it was stimulating it to produce excessive amounts of growth hormones (GH). Is that bad? Well, up until then I hadn't thought so. My symptoms were mostly subtle and none were life-threatening. The most annoying of symptoms was that my lower jaw grew to the extent that I now had an under-bite. It was annoying because it made chewing food difficult and sometimes I would catch the inside of my cheek instead of food but otherwise, it was of no consequence. Missing were other common symptoms found in other patients. There was no headaches to speak of, no hypertension and no impairment of vision. Generally speaking my health was above average, I was active, had plenty of energy and outside general muscle growth (which I considered healthy), there were no negative symptoms to speak of.

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