3 Months: I want my IGF!

It has been 3 months since my surgery and all my vitals have returned to normal. I haven't had one of those headaches in several weeks. {Relief} And I can move normally again. I can run, I can bounce, I can strain and not have my head ring like church bells. I even started going to the gym three weeks ago. This was the final step in my recovery. The stress and strain of exercising at the gym, testing my body and pushing the limits, was the last activity since the surgery that I expected to regain. And now that I have, there is only one thing that keeps going through my mind... I want my IGF! Not really... well, maybe a little.

Since the surgery I have lost 12 lbs, it was almost immediate and most of it occurred while I was at the hospital and those first few days that I was bedridden at home. I didn't expect it so quickly but I was aware of it and I planned to do something about it as soon as I was able. I ate normally and I didn't notice my body changing until a few weeks ago when my loose pants were no longer loose and the ones that fit, well, they now don't. I had successfully managed not to lose any more weight but the proportions had changed significantly and that took me by surprise.

As I had always done in the past, if things ever got off balance, I would turn to the gym and it wouldn't take long for my weight to stablize and go in the direction that I expected. Keep in mind that it's not the number that I'm after but rather the direction. If I had lost weight, I would go to the gym to restore the lost muscle. If I had gained weight, I would go to the gym to restore the muscle which burns the food which caused the fat that expands the belly (that Jack built). Either way, muscle is king. Use it or lose it (and gain all the other things you don't want).

Years ago I read a book titled Body for Life where the author stated that he likes the way he looks in the mirror and there was no reason we shouldn't feel the same. I remember thinking, wow, how is that possible. But it was possible and I reached that point. I had absolutely zero embarrassment going to the beach or I wouldn't think twice about wearing a tank top in public. I was healthy and sufficiently muscular to feel comfortable. I wasn't Arnuld but I wasn't Icabod either. Now I'm not too far from bubba and stick figures never so look good, especially with a belly. So I'm back at the gym and guess what, I've got nothing. And it's like I never had it. Where's the beef? It disappeared with the IGF. Those at the gym who remember say, c'mon, you can do better than that, quit sandbagging. And while I would like to agree, it's with extreme disappointment that I have to admit I am not sandbagging. I really don't have it and perhaps all I had previously was only an illusion...

I've read the experiences of other Acromegalics, particularly the symptoms, but no one has commented on their physical strength. The females are disenchanted with additional hair growth, irregular menstrual cycles or leaky breasts but they don't mention being able to lift a refrigerator to dust around it. And the dudes don't seem to mention having fun with their ladies by twisting lids on really super tight so they can't open it without your help. But it's a very real side-effect. One that is perhaps not tested but one that I unknowingly took advantage of and came to regard as quite normal for me. Now that it's gone I'm not quite sure I like it. In a way, it's like taking away a part of what makes a man a man. It's certainly a part that I identified with and enjoyed. Who else is going to open pickle jars, relocate furniture or launch kids into the pool? These are very real things in a man's life.

All that being said, I'm glad I'm healthy again. I trust that my bones have stopped growing. My face looks normal again and I don't look as old as I used to. My physique has redistributed it's proportions but I believe I'll be able to correct that with time. Perhaps it'll just take a little more time and effort now. But I am going to miss going for distance when I launch the kids. And what fun will it be if my woman can open her own pickle jars after I tighten them? I don't know how I'm going to live without my IGF, not really, well, maybe a little.

Read full post!

2 Months Post Op

I met with my Ninja Surgeon this week. It has been 2 months almost to the day. He was still as calm as ever and exceedingly modest for what he had accomplished. I had 3 MRI's performed last week, one on my neck, and two of my head, with and without contrast, and we reviewed those results. Since my last posting, my headache has come back temporarily but it only lasted for a couple of days. And finally, as I continually get better, I lament my fading memory of Acromegaly.

The meeting with my neurosurgeon went very well. We reviewed the images both before and after surgery. Though I had seen the initial images before, I didn't have an appreciation for what I was looking at nor did I know what it was supposed to look like. The milky film of wavy varying grey lines is remarkably vague and yet with it, they are able to pin point foreign and abnormal conditions inside your body. My tumor was 14x13x11mm in size. For those that are metrically challenged (as I am), that's about 1/2" at it largest point and 3/8" at it's narrowest. The post-op images confirmed that there is no trace of a tumor at all. It's completely gone and in it's place is that coveted hollow blackish grey area indicating normal fluid or space. I feel a party coming on...

We also reviewed my neck and it too looked very normal and we compared it to the one taken right after my surgery when I was complaining of severe neck pain. The normal one showed very clear, distinct, linear lines up and down the spinal column while the other one showed a torpedo shaped void along the edge my of my spine which clearly was abnormal. This void is what he suspected was fluid or blood that had make its way into my spine and caused the pain. He mentioned again that he had never seen this happen before and was going to look in the medical journals to see if there is anything documented on it. Thankfully, it cleared after two weeks and I will say this was the most frightening part of this whole experience.

After going a couple weeks without a headache, it returned with some intensity a couple of weeks ago. Having learned from my prior experience, I keep a small supply of Percocet with me at all times and my new habit afforded me timely relief. I've learned that these headaches come and go on their own. They seem to start for no good reason and they seem to end with the same. I've noticed that my frame of reference has changed along with my symptoms. I used to measure my "wellness" by the brief periods of pain-free moments I had throughout my day. Now it's down to the brief periods of abnormalities I feel throughout the week.

In my last update, I mentioned that I had thought the spasm in my limbs had gone away but that was premature. I still have them and it's a weird sensation. It's not pain, it's just a twinge that says, hey, I'm here, remember me? Sometimes I'll take notice and I ignore it intentionally... :)

I'll close with some observations, some that I appreciate and some that I find rather lamentable. I have never had the opportunity to live with continuous pain. I say opportunity because it has been a true test of character and I've learned a lot about myself in the process. I'd like to think that I handled it well but 2 months is hardly what anyone would consider chronic pain. In the short time (which seemed like forever) that I was dealing with it, I was forced to take stock in what was important and what was not. I remember the first thing that I regretted most was not being able to play with my kids. And seeing the disappointed look on my youngest boys face when he would ask me to play and learning that I couldn't was more than I could bear. I would move mountains for my boyz and up to now, I believe they thought I could. In the end, I learned that they weren't looking for a super hero, they just wanted to play with dad. And it was okay that they didn't understand what I was going through. I would consider it a blessing if they remained healthy enough to never have that kind of understanding.

Now comes the irony. The same thing that I would wouldn't wish on my kids (or anyone for that matter), I value. I value the experience and the lessons and while I would like to believe that these lessons have changed me, I'm already starting to see evidence of a fading memory. In my research, I learned that many still struggle with the symptoms, even after surgery. My heart goes out to them. I just happened to be one of the lucky ones. I'm grateful for that, I just wish everyone could be as fortunate. As my life resumes more towards normal however, I see the daily issues taking over like weeds again, just as it was before the surgery. The petty things take over and they somehow manage to get disproportionately large. Perhaps this is another thing I need to learn about myself and take steps to keep that from happening, the proverbial weed-whacker...

Some speculate that the stress in my life contributed to the growth of the tumor. I don't know how real that is and I suppose I'll never really know but I can commit to keeping my perspective and only sweat the important stuff.

Read full post!

6 Weeks Post Op

Well, the long awaited news is finally here... My Endo called this week to inform me that my IGF, Insulin Growth Factor, was 186, it was 1,111 prior to my surgery. The normal range is 70-306. Drum roll please... MY SURGERY WAS SUCCESSFUL!!!

The only oddity in my results was that my testosterone levels were low-normal but still within an acceptable range. They will continue to monitor. Okay, TMI but great news nevertheless!

So, how am I doing? Well, much better thank you...

I seemed to turn a corner earlier this week with respect to my headache. It was really weird, the pain had been constant and I had forgotten to take my pain meds to work with me a couple times and I paid for it. It was difficult to focus but I endured the pain, the first time. The second time I wanted to beat my head against the wall for my sheer stupidity. The pain was constant and sharp, how could I forget? Well, I did. Twice. The second time I went home during lunch and I was okay after that.

I want to point out that my pain and discomfort is all my doing. The pain meds are really effective at controlling the pain. A single pill will have me nice and loopy within 20 mins (in a good way). I just have to remember to take them. (Oh, and the stool softener, we don't want to forget that!)

Then about 3 days ago, it changed. I woke up to find that my headache was limited to only a quarter of my head. The rear part of my head felt fine, the front-left part also felt fine. The front-right, on the other hand, sharp and painful. Percocet here I come...

The next day, it was a like a light switch, nothing. No pain, nothing. Wow, I wondered how long it would last. I made sure to take my meds with me but I was fine all day. The next day, same thing. Today is the 3rd day and I'm going strong. I'm almost tempted to go pop one of the kids with a tackling pad just to see if it comes back... Upon second thought, I'm quite happy to give it more time...

The last item I need to mention is those mysterious twitches. They stayed with me for about a week but I haven't noticed them lately. They weren't anything more than subtly interesting. It would catch my attention when it occurred but then it would go away just as quickly as it started. Strange to be sure but nothing that felt very alarming.

My next update should occur on or near Oct 12, 2008. That will mark 2 months post surgery... I can't believe how quickly it is going.

Read full post!

4 weeks Post-Op

Overall it was a good week. Despite the busy schedule, work was very productive and I had an opportunity to meet with old colleagues. In terms of my condition, I had a slight setback due to some carelessness on my part and met with my Endo which hasn't provided any results yet. With that, here's where I am with my current list of issues.

List of issues:

• Headache - slight setback
• Insomnia - tolerable

New to the list:

• Twinges of numbness in my limbs

Although I did have a good week, I did make a big mistake during football practice towards the end of last week. We were trying to teach our kids the long-snap rather than hiking the ball up close and personal. Our little center (hiker) was doing great unopposed but in tackle football, that's hardly realistic. Since I had been feeling better, I grabbed a pad and decided to pop him when he snapped the ball. As soon as I did it, I knew it was a mistake. He barely moved from my hit but the jolt rang through my head like church bells and that familiar sharp pain in my forehead came back (dammit!). I paused and waited for it to subside and it did subside from its peak intensity but not to the normal dullness that I could ignore. Instead it retained a bit of a sharp edge to it and it was no something I could simply dismiss. Damn, damn, damn, damn! I asked another little boy to take over my opposing duty but the damage was done. As the days passed, it remains, to the extent that by Friday, I had to take a pain pill. I had been able to avoid taking those for over two weeks and now I'm back on them. (Dammit!) The good news is that my headache doesn't worsen when I bend over or stand up any more. Now it's just there all the time.

The twinges in my limbs are weird and they coincidentally started happening a day or so after that regrettable decision. I can be moving or sitting (it really doesn't matter) and then I'll feel a twinge of numbness in my knees or elbows. Not at the same time, just random (and weird).

The office visit itself went fairly well. They were encouraged that I wasn't experiencing any fatigue and I had weened myself off the hydrocortisone over the weekend prior to my visit. It was a good sign that my pituitary gland is recovering and generating the necessary hormones to keep my body going. (I'll have to do a better job of writing down the hormones they keep talking about, it's all still very new to me.)

The visit again tested my dislike for needles. Not only did I have to allow the vampires (aka phlebotomist) to take more blood, the sweet nurse had to inject me with something before the blood draw. "Left arm, right arm please..."

I delayed publishing this post in hopes that I would have received results from my Endo but 4 days later, I still don't have anything...

Read full post!

3 weeks Post-Op

I returned to work this week and I didn't have any issues that prevented me from working in a sedentary environment. To be clear, my physical activity entails all of sitting at a desk, typing and using the phone. I did need to walk to conference rooms both upstairs and down but these are all activities well within my limits. My doctor recommended that I stay home for another week or work part-time but being at a new job, I didn't have any vacation time (or sick time) and I didn't trust my employers patience. Three weeks is a long time for a new guy not to be at work. If there was physical labor involved, I would have stayed on disability. For me, my bigger issue was staying home. I have projects coming out my ears and while I was sitting idly wasting the day, I was continually tempted to install solar panels, rebuild the XR100, wash and wax my car, repair sprinklers, straighten up the garage and clean my 50 gallon fish tank. All of which require a fair amount of stooping and lifting which still hurts like hell. My reasoning was simple, go to work and avoid all of it. My list of issues is considerably smaller now but I'll provide an update from my previous list.

• headache/head pressure - dull/tolerable
• extreme neck pain - 100% gone
• sharp pain in ribs - 100% gone
• Slow bowels - still present but under control with meds
• Insomnia - still present but sleeping better than before

Of my original list of issues, only the headache remains. It's dull and always present. It would sharpen to intense pain when I would bend over or if I stood up too quickly. It got to be predictable and I would brace for it, and wait for it to pass. As of Sunday, two days before my 3 week anniversary, it stopped altogether. I can bend over slowly and stand up slowly and there is no subsequent pain that follows. The dull portion of the headache is still there but the sharp waves have disappeared. Wahoo!

The insomnia remains and it is my biggest concern. I need to work (during the day), which means I need to sleep (in the evening). I asked my doctor to suggest a sleeping aide and he deferred me to my Endocrinologist. He then suggested that I start weening myself off the hydrocortisone, basically omitting my evening dosage. That helped a little in that I seem to be able to get some sleep, it's just not a sound sleep and I'll wake up throughout the night. The important part is that I do fall back asleep and get a decent number of hours (4-6 hours) before getting up in the morning. I figure that I'll eventually get tired enough to sleep all the way through.

Coincidentally I met with my ENT on this day and he had a look at stitches (Aha! Proof!) and he subsequently removed them. (Damn!) He said I healed up nicely and he doesn't need to see me any more. He also mentioned that my nose was a bit swollen and crusty (which I already knew) but he wasn't worried about it. Okay, thanks doc!

My Endo is next week!

Read full post!

Picture Timeline

In trying to put together a picture timeline, I realized that I'm not in too many photos. I guess having children puts me on the other side of the camera most of time. It was the later part of 2006 (Sep/Oct) that I really began noticing my facial changes. Oddly enough it was the pictures and not the mirror that allowed me to take notice.

Read full post!

2 Weeks Post Op

Wow, what a difference another week makes. I'll run through the issues but first a little commentary. Now that I getting out and about more often, the comment I keep hearing is that I don't look like I've just had surgery... particularly brain surgery. And ironically despite how I feel, that's very true. I don't have any bruises, no black eyes, no visible point of incision, heck I don't even have a cool scar to bore my future grand kids with... Visually, it's like it never happened. My surgeon was like a ninja stealth samurai. He went in with a knife, I know he did, but I didn't see it and neither did anyone else and there is no visible proof... Somehow that has a way of hindering your recovery. It has a way of inserting an element of doubt, almost dream-like, did it really happen? One quick sensory check confirms what you already know but as you heal, it just leaves more room for doubt. Here's a quick run down of my list of issues:

• headache/head pressure - mild/tolerable
• extreme neck pain - 99% gone
• no sense of smell - 100% back
• distorted sounds - 100% gone
• sharp pain in ribs - 80% gone

New to the list:

• slow bowels
• insomnia

Of my original issues, only the sharp pain in the ribs remains but not to the same degree. As I mentioned previously, I found that I could support my left pectoral muscle and avoid pain while I was walking. That eventually led to my simply protectively favoring my left arm over my ribs. As my mobility improved, the pain subsided by an equal amount. It's not completely gone but I'm no longer visibly favoring my arm over my ribs and I think within a few days, it will be gone completely. New on the list is slow bowels and insomnia. I'm told that's these are side-effects of the medication. Percocet (for pain) slows down the bowels and the hydrocortisone (reduces swelling and provides needed hormones after surgery) keeps you awake. So I'm trying to regulate when I take the medication in an effort to improve my condition. My headache is still present but I'd classify it as mild and can ignore it for the most part. There are times when the pressure seems to build to quite unbearable levels but then it subsides after a minute or so. I can generally tolerate the cycles for a couple days and then I'll take a pain pill just to take a break from it. The neck pain is no longer what I would describe as pain. I would say it's more like fatigue now. After I've been up for a while, it feels better to rest my neck a bit by laying down. It's quite manageable now and I no longer consider it a major issue. This past week had brought about many major improvements. I have had to recover from many injuries over the years. For me, bruises or muscle soreness usually only lasts about 3 days. I can't recall any that required more than 5 days to be as good as new. Here, two weeks have passed, and while I can't say that I'm as good as new, I can says that I'm well on my way. Now if only my ninja samurai surgeon had left a few bruises or visible marks, then I'd at least some visual cues to help gauge my recovery. Instead, I have to rely entirely on how I feel and not at all on how I look.

Read full post!

Milestone: I drove today

It struck me odd that I felt compelled to write about this milestone. It had little to do with my health but more to do with what I enjoy. I recall that stunned feeling when the hospital discharge instructions said "no driving". Say what??? Okay, whatever... (They obviously were not aware of my acquiring red just a few days before my surgery.)

But there she sat, waiting...

I checked on her repeatedly when I would come and go. As my friends came to visit, I would point to her. When I went for a walk with my son, I looked again and again but it wasn't time.

But today, it was time. I had been off my pain medication for several days now and my mobility was no longer an issue. It was time.

Despite sitting for 2 weeks, there was no hesitation to start. I wasn't surprised just silently pleased to confirm that we were both ready. As I casually drove down the street, Pon De Replay was playing lightly in my speakers. "Come Mr DJ, please Mr DJ, won't you turn the music up..."

Yes, indeed. And up it went. And for a moment, it was a brief moment I reached heaven. So much so that I pulled over to close my eyes and enjoy every little bit of it. And my son, bless his little heart, just laughed and said, "dad, you're weird."

With a huge smile on my face, I agreed, and we were off to finish our simple errands.

Read full post!

Post Op MRI results

Great news, the MRI results of my spine revealed fluid in my epidural space which they are guessing is probably blood. They speculate that the lumbar drain used to control the pressure in my head may have allowed blood to enter the area near the incision. That's as much as I understand at the moment. My doctor is inclined to not do anything just yet and see if this plays itself out. As a result, I am forcing myself to get up and move around more. I can walk around and sit down at the table for meals. It's not the most comfortable feeling but it's a start in the right direction.

Read full post!

Milestone: I can smell again!

It has been 10 days since my surgery and while I had the packing removed from my nose after the second day, I had no sense of smell until about 2 days ago. Sadly, all I smelled at the time was ammonia. It was fairly strong and followed me everywhere I went. When it occurred, I just took note of it. I didn't think there was anything I could do about it and since I had other issues, this was the least of my concerns. When I awoke this morning, I smelled breakfast, the bacon and eggs. What a relief! I still smell a hint of ammonia but either I'm getting used to it or it's fading on its own. My taste buds seem to be coming back as well. It feels different, almost like they have changed also but at least they are coming back.

Read full post!

Milestone: No pain meds

Well, today marks another important milestone for me. Despite my other adventures, I did not need to take any pain meds today. My activity level was light, all in all a good day for pain. To contrast, yesterday my neck pain was exceptional yet again and so was the headache after about mid-day. By evening it was time for some relief. But not today.

Read full post!

It's the little things

So I had to take a break from my normal thread to interject today's revelation and important milestone. Today I moved my bowels. Let me say from the beginning that I do not generally speak of such things and I do believe these are truly private matters. But, if I could help even one person by documenting my ordeal, it would be worth all my tribulation and embarrassment. What you need to know Bowels need to move, regularly. If you don't, it's just a matter of time before something goes horribly wrong. Percocet (my pain med) has the side effect of hardening your stool. While I was at the hospital I was given a daily dose of stool softener. After I left the hospital I was not, nor was there any mention of it. It was not on my prescribed list of drugs which also includes over-the-counter meds. In short, I didn't think about it. While I was at the hospital, they checked my urine output every hour, measuring how much urine I was producing but there was no mention of bowels. Well today, it reared its ugly little head, 9 full days after surgery. I'll be brief but to the point They were like little rocks the size of marbles and they were stuck together to form a giant rock, solid and immovable. It did move to a point but then it got stuck, in between, something, somewhere, I don't know. All I know was that it felt like I was trying to pass a large object and the pressure was well beyond what I could tolerate. My head felt like it was going to explode, I couldn't stand up, I couldn't sit down, I was in bathroom hell. After about an hour I realized I was in big trouble, I finally called for my wife. She was horrified (as was I) and she blames the hospital but we discussed our options calmly. We could go to urgent care (but I didn't think I could make it through the requisite waiting room) or we could call the pharmacist to see what they would suggest. The pharmacist suggested an oral stool softener and in the meantime I could sit in a hot bath to hopefully soften things a bit. So I did, for over an hour, but it wasn't helping. My wife in the meantime had enough time to drive to and from the pharmacy twice, the first time returning with Senakot (a laxative), the second time with Senakot-S (stool softener). I took two and waited. I didn't know what I was waiting for, I just waited, in the bath. The ugly I went ahead and removed this portion since I didn't see how it would benefit anyone but a very select few. If you would like to know how this story ends, I'll be happy to email it to you. It's sufficient to say that after 2 1/2 very long miserable hours I ultimately found relief. The lesson is simple, be aware of your meds and make sure to include a stool softener if you are using pain killers.

Read full post!

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.

Read full post!

The day after surgery

The next day was full of progress.

My merciless nurse, Agnes, was gone for the day and Beth had returned with sunshine and a strong desire to make me feel better. Again I didn't feel like I needed much but she checked on me just the same.

It occurred to me late in the morning that I hadn't eaten at all the previous day and I thought I should start eating something. Not because I was hungry but I knew I needed to eat something to maintain my weight. I asked if I was being fed through the IV and they said it was just a saline solution to keep me hydrated. Okay, how about some food? Yes, of course, how does yogurt sound? Steak sounds much better. With a sly grin Beth left and returned with covered plate... To my surprise, it was yogurt. It turns out she's evil too, she just pretends to be nice.

Overall I felt pretty good. I didn't take any pain medication until about 11am. As far as I know I went all evening without any pain meds. Once I began taking Percoset at 4 hour intervals I soon noticed that the last hour of those interval were the most difficult as my head and neck would begin to hurt as the medication wore off. We got in the routine of using morphine near the third hour to keep the pain at bay.

A different nurse came in about the middle of the day to take me for my walk. I felt like I had aged forty years and I had immediate visions of what I'd be like when I'm 80 years old, all hunched over, walking slowly, carrying my urine bag. The walk was good however. I was surprised to see that I could stand on my own. I kept my balance without too much trouble and the only thing that felt uncomfortable was my catheter. (Curse the guy who invented catheters...)

Thankfully my mom was with me during my hospital stay and she helped me pass the day telling stories and allowing me to pontificate on my many random subjects. Watching the Beijing (pronounced Bei-Jing) Olympics was great for a while but hearing about Michael Phelps over and over and over and over and over and over and over and over, ad nauseum when you include the re-runs, got old. He's a stud, we get it.

My wife and kids also came to visit that evening. Since I was a neuro patient, I had a room to myself and not subject to normal visiting hours. That meant my mom could stay with me overnight and the rest of my family was able to come by after school /football /showers /dinner /etc. It was a nice diversion and made for good conversation. My boyz are the light of my life and I love them to death but when you have a headache, 8 & 9 year old boyz in an 8'x10' room with nothing to do can find your nerves very quickly. These two handsome little devils need to be outside, all the time. And as much as I love to wrestle with them, I just couldn't do it right then. Play time would have to wait.

Read full post!

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...

Read full post!

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.

Read full post!

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.

Read full post!

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.

Read full post!