Acromegaly Ramblings

Cost Of Surgery

2011-11-14T09:08:00.000-08:00

(In response to my anonymous poster)

I had surgery in December 2006 for a 2.3cm pituitary macroadenoma. There were no complications, no CSF leak, etc. I stayed overnight at UCSF and was released by 11am the day following surgery. My insurance at the time was Health Net in California. My surgery cost almost $35,000. My copay was $250, that's all I paid out of pocket.

My Acro Monster

2011-10-18T10:01:00.000-07:00

In response to an anonymous poster who didn't believe I looked like I physically had Acromegaly, here are before and after pictures. Oh, and thanks for the comment since I certainly don't wish to look like an Acromegalic :-) I never wanted to post my worst pictures because I was embarrassed and ashamed of the "monster" I felt that Acromegaly turned me into. But if it helps others, here it is. I'm including my reply to this person, although I forgot to include all of the physical signs of Acromegaly that I had, sorry my memory is still not the best. Another I can mention is I started developing an under bite and TMJ.

My Acro Monster (Pre- Surgery 9/2006, Surgery 12/2006)

Almost 5 Years Post Surgery (6/2011)

"Yes, I believe my Acromegaly may have been caught early. I did have the outward signs before I had surgery. Some of my physical symptoms of Acromegaly were: I gained 30 pounds, my nose and lips enlarged, my skin darkened and thickened, my brow started lowering and my eyes became further recessed. I had acne, I grew more facial hair. I also developed the body type of the Acromegalic with a barrel-like chest, and spade-like hands and feet. Going on a diet, having surgery 5 years ago, and the fact that I'm now on 40mg of Sandostatin every 3 weeks has gone a long way towards getting me back to looking normal, although I don't feel completely normal on the inside. I still have large knuckles and spade-like hands and feet, although my tissue swelling has reduced immensely. I haven't posted one of the worst pictures of myself before surgery, but I can do that so you can see more of a difference. Truthfully I'm embarrassed at the monster I became. This is my picture timeline."

My Picture Timeline

Raw Food Diet

2011-09-12T16:00:00.001-07:00

I've been trying to change my diet for my health the last few years since I've had Acromegaly and as a result, high blood pressure. I grew up on a high dairy diet (I loved milk, cheese, ice cream and eggs), then as an adult I transitioned to a higher protein, higher fat diet (thank you fast food) which also included high dairy. It seems a 100% raw food diet may be much more beneficial than I first thought. When I tried to go raw before I didn't stick with it, in part due to habit and societal reasons. What I didn't realize at the time, was that I was also probably in a detox phase that was uncomfortable. If I can find the motivation I'm going raw/organic. It's sobering to think my own diet may have caused my Acromegaly. I wish there was a way to cure or reverse the condition without medications. I've already transitioned to a very low salt diet (way under 1500mg/day) and have lowered my blood pressure to a normal level so that I don't need blood pressure medication anymore. My skin also looks better, it's no longer super dry to the point of flaking, and I have less acne.

Why Raw Food?

Acromegaly Connections Chicago Event 5/21

2011-05-04T10:53:00.000-07:00

Again, for any interested. Click the link below, when the image comes up in a new page you can click again to enlarge the details.

Mini Update

2011-04-21T09:37:00.000-07:00

I've been lifting weights a few times a week, and jog/walking a few times a week. I've done a lot of online research. I got a lot of useful information from Bodybuilding.com on proper lifting techniques, they have some great videos.

The good news is I've been feeling so much more energy. I haven't been as depressed. I still have some issues with long distance driving causing me fatigue. And I still get extremely irritable, usually the week before my Sandostatin shots, as if the medication is wearing off. I hate everyone that week :-) I've told my children, you know the drill - ignore Mommy this week, I'll probably say a lot of horrible things that I really don't mean. I can't seem to control my outbursts even when I consciously try.

I've also noticed sometimes I still get the neck pain and headache on the left side. What's worked for me is a muscle relaxant. Once I've literally knocked myself out with that so I can relax and rest for a few hours, I feel wonderful afterward. I wish I didn't need my drugs, but they can be helpful when used carefully.

Acromegaly Connections Event 4/30

2011-04-20T20:06:00.000-07:00

I received an email about an event in California that some may find interesting, details below.

Fantastic News!

2011-02-02T14:19:00.000-08:00

I had lab work done in January, about 6 months since I changed from Sandostatin 40mg every 4 weeks to every 3 weeks. My GH went from 1.8 to 0.94. IGF-1 went from 379 to 356. I've been on Sandostatin around 4 years now and my numbers have never been so low, my GH had never been under 1.0 with the OGTT. My endo also stated based on my new MRI it's possible that the residual tissue may be shrinking a little. I see my endo again in June and may add Cabergoline to the treatment then.

Meeting in SF

2010-11-02T22:37:00.000-07:00

[Karen, Ellen, Tanya, Jenny]

Ellen (way to go again Ellen!) helped organize our meeting with Tanya Angus, and her mother Karen in SF. It was great to meet them, and welcome them to our California Acromegaly family :) They were very gracious, even about meeting us right after their arrival in SF. They're amazing people, and I'm really grateful that they're both putting their lives in the spotlight to bring more attention to Acromegaly.

My own personal choice was to expose my life with Acromegaly online, and that's a much easier avenue to take. I still have fears and other issues with bringing the subject up, even among people I consider close friends. I have a fear of public speaking that I've never overcome, so having people like Tanya who can be a spokesperson for herself, and everyone else with Acromegaly, is very appreciated.

I really hope Tanya finds a cure with her unique case (unresponsive to treatment as she keeps growing - at 6'11" now), or at least more effective treatment. Acromegaly is such a horrible disease, and it saddens and angers me that her case wasn't caught quicker. There's not only the physical aspects of the condition to deal with, but the mental aspect that contributes to our delayed diagnosis. Personally, when I started gaining weight and my hands/feet became larger, I became depressed, and figured I had just "let myself go." It's almost like I was in denial without realizing it. I thought I was a freak, or just weird with certain symptoms - like my continuing lactation years after having my last child - that I even feared telling my doctor my symptoms! And along with depression I had feelings of being disassociated from myself, and to a certain extent I still do now, as though I don't know myself or my feelings anymore. I believe these feelings are due to Acromegaly, as well the depression.

The symptoms of Acromegaly can be so insidious, that we fool ourselves into thinking there isn't anything wrong. Thanks so much to all who have come forward to share their stories.

Follow Tanya's story:

Tanya Angus - Official Site

ABC 13 News - Woman with gigantism is back from San Francisco with new doctor's orders

UCSF Update

2010-10-28T15:17:00.000-07:00

I drove into UCSF yesterday to meet my new endocrinologist, since my old one transferred elsewhere. My day started off well with a free drink coupon from Starbucks because they were closed due to lack of hot water! But I ended the day kind of frustrated and disappointed.

I've had very minimal improvement on 40mg Sandostatin every 3 weeks. I've been looking into other options. Based on my MRI she stated that it doesn't look like I'm a candidate for re-operation. I'd really hoped I could avoid the expensive monthly Sandostatin shots, call me optimistic. I do stress about insurance continuing to pay that costly bill every month for me, although I have no basis for worry.

She also reminded me that Gamma Knife Radiation is an option. Maybe I'll try it, when they can guarantee I'll turn into a superhero. Forget Acromegaly, I want to be She-Hulk! :-D

The other option my prior endo and this one are pushing on me is trying the lowest dose of Dostinex/Cabergoline. I remember having some side-effects when I was on it before. I always seem to have side-effects with any drug, so I try to avoid them. Maybe I'll stop being so stubborn, resisting their advice. I'm a bad patient.

The Latest..

2010-09-27T09:24:00.000-07:00

Good news. I'm on a new dosing schedule for Sandostatin 40mg - every 3 weeks now instead of every 4 weeks. I was tested after 3 months on the new dosing schedule. GH is 1.8, IGF-1 is 379. But, my numbers were basically the same on Sandostatin 40mg every 4 weeks. I'd hoped to see a dramatic improvement. I'll be seeing a new endocrinologist at UCSF end of October to discuss whether I should go back to the old dosing schedule, and a possibility of re-operation (slim in my opinion based on my MRI).

Also on Sandostatin side effects, my blood pressure may be slightly higher. I haven't been taking blood pressure readings every day, since I've been jogging daily and at my doctor's appointments my blood pressure is always low enough. And any other issues are negligible, although I do worry about potential damage to gallbladder.

On another note, I believe the high doses of Sandostatin had been causing almost daily muscle pains. Any time I exercised (it was very infrequent before), or did even a small repetitive activity I would have muscle pain for days. Since I started jogging daily (jogging or jog/walking 15-30 minutes) I haven't noticed the muscle pain, so that is wonderful! It seems I may have less Sandostatin side effects due to exercising, even a small amount daily. I did approach my new exercise plan carefully and slowly, and I don't push myself too hard. I'm naturally a very lazy person, but I'm realizing that not exercising doesn't seem to be an option for me. It's imperative to my health.

WORLD'S TALLEST MAN: STILL GROWING SUNDAY, AUG 8 at 10/9c on TLC

2010-08-05T09:30:00.000-07:00

Sneak Peek

At over 8 feet tall, Sultan Kosen is the world's tallest man ... and he is still growing! In this all-new TLC special, we follow his extraordinary journey around the world not only in search of a cure to his gigantism but also to overcome his lonely existence.

As young boy in a Turkish village, Sultan dreamed of a simple life - to grow up, have a job and find a wife. At the age of 8, Sultan began to grow uncontrollably and by his teenage years, the extreme growth had forced him into isolation. Continuing to grow, he soon became the "World's Tallest Man" which brought Sultan fame and opportunities to travel around the world. While confronting his dangerous condition with medical attention, Sultan begins to seek out relationships. More than anything, Sultan longs for a wife and looks for love online, resulting in his first date ever. He also travels to the US to meet America's tallest man, former Harlem Globetrotters George Bell, and is encouraged with the new friendship. Although still growing, Sultan now lives with newfound confidence and bravery despite the continued threat to his life and his dreams.

Changed Verdict - Side Effects of Sando

2010-05-12T13:23:00.000-07:00

I wanted to edit this post because I thought I had my answer and I believe now that I was wrong. I don't believe that arthritis is the cause of my muscle pains at all. I always read any drug information inserts as soon as I buy a prescription. I don't remember an insert stating this side effect of Sandostatin. Looking at their drug insert information online, muscle pain is not even listed as a side effect of this drug. But a simple google search tells me that statins can cause muscle pain. I'm going to mail Novartis to see what they say about this.

* * *

And the verdict is (most likely) - Arthritis!

Well the good news is my blood tests came back good. I don't have chronic fatigue (although I've been exposed to Epstein-Barr like many people), and I don't have Fibromyalgia. My heart was good, no diabetes, no low levels of potassium or Thryoid or anything else. Did have slightly high LDL (by like 2 points), and slightly low HDL(2 points again). So naturally, I'm feeling a bit like a hypochondriac at this point! :-) Is my pain in my head?? Well, it is literally many times :-)

I did ask my doctor for pain medication to manage my chronic pain since OTC doesn't help anymore. I still have headaches/neck aches, and right side sciatic pain. And I'm sick of dealing with it so I guess I'll take my chances with pain meds. To my surprise, he handed me Arthrotec. Which is an arthritis pain med! I already knew I had degenerative disc arthritis in my back due to my sciatic pain, which began last year and has been bothering me consistently. And my blood test did show a high sedimentation rate which indicates inflammation like arthritis. But I never thought the other symptoms I had could be arthritis related. I have an aunt with rheumatoid arthritis and I certainly don't have her symptoms or limited mobility! I do have joint pains sometimes, but most of the time it's muscle pain, or sciatic pain. Anyway, a Google search also confirmed chronic fatigue is a symptom of arthritis, which I also didn't know. So maybe I have my diagnosis finally! I'm happy to have some sort of answer, so I can know how to properly treat myself. And I'll be looking into seeing a Rheumatologist most likely, although I'm not sure how helpful that will be considering I don't like taking medications.

ETA: Arthrotec didn't work unfortunately. I only took one pill and had continuous stomach pain, and a bloated/full stomach feeling all day. I did eat before taking the pill as directed. The pain was like hunger, but once I ate I felt overly full and like I had reflux/the food wasn't digesting at all. And I didn't notice a significant reduction in arthritis pain either.

I'm also noticing my posture has been horrible. Trying to maintain good posture all day seems to help with headaches and sciatic pain, although my back muscles are so weak that it makes my back ache! I'm hoping to join a gym and increase my muscle to help combat the arthritis.

More Potassium and a Tip on Sando

2010-04-25T23:38:00.000-07:00

First I'll give the Sandostatin LAR tip, because I'm going to ramble like usual :-) I thought I posted it here somewhere but I guess maybe I commented somewhere else. Anyway, people on forums have complained about the shot hurting, or getting a lump since it is a bigger needle, and the Sando is thick. When I first started getting the shots, I tensed the leg on the side I was getting the shot, and I felt pain shoot down my leg, along with developing a large, painful lump. Maybe I'm getting scar tissue and that's why getting the shot is so easy now, or maybe I'm doing something right. I make sure that I don't stand on the leg on the side that's receiving the shot, and I close my eyes and concentrate on not tensing either. It also helps to massage the area right after the shot. But truthfully, I get a small lump now and I don't massage anymore, and it's easy to deal with. I don't even feel the needle go in usually.

And...I'm onto my next theory why my BP is so high (still prehypertensive). I'm guessing I've been eating a high sodium diet that's also WAY too low in potassium. High sodium..duh..too much fast food/packaged junk. My BP goes up even after one fast food meal. I realized I've gradually cut way too many things out of my diet, probably out of laziness. Even eating at home, I thought eating smaller portions of meat was better, and added some carbs with it. I've also been boiling meats which I read causes it to lose nutrients.

I'd asked my doctors to test all of my levels of like everything possible in years past. So I assumed they checked potassium, but maybe not. I'm going to double check. I do have ALL of these symptoms of potassium deficiency: fatigue, myalgia (muscle weakness), acne, dry skin, memory loss, heart problems, digestive problems, ringing in the ear.

So I'm on week 1 of a new diet. No pill supplements since I've read they can be dangerous. Larger portions of meat like steak, potatoes, bananas, OJ, etc. Less packaged crap/fast food (I really didn't add much table salt to anything, just ate the wrong things). I should also mention prior to this diet I'd pretty much completely cut out caffeine, besides green tea a few times a week. And soda or coffee maybe once a week. So far I'm feeling more energy so that's good. Seems like less bloating and water retention. Digestive stuff better. Lost a few pounds. Feeling less cravings. Usually I crave sugar constantly. Haven't taken many BP readings yet but had a couple good ones. And I'm also aware that I may trade off a better BP for higher cholesterol levels with eating more meats (like I'll take time/remember to make sure it's not fatty every time I shop). I'll update later, along with info from the doctor about whether my potassium level was ever checked.

Healthline

Life123

Wellsphere

Mayo Clinic

Another Meetup!

2010-04-18T17:22:00.000-07:00

Ellen (Acromegaly Bloggers), Wayne (AcromegalyCommunity.com) and I had a chance to meet up in SF. We had a great time. It was like meeting up with old friends for me, they're very warm and sharing people. It's very nice to have a support network online and in real life. I'd had a crazy week since I was a week late for my Sandostatin shots due to a doctor's office mix up, and I almost didn't go. But I figured if anyone in the world could understand me and my crazy, hormonal, totally irritable week it would be Wayne and Ellen. And I did end up getting lost for a few minutes in SF, and breaking at least one traffic law like normal when I go to SF. Those are like two requirements for me when I go to SF no matter how many times I've been there, and it's not on purpose either sadly! Yes I do have blonde roots :-D

I was already so thankful that Ellen has been so proactive, and is such a connector pulling together so many of us with Acromegaly on the Acromegaly Bloggers site. I've become so much more comfortable in myself dealing with Acromegaly, thanks in large part to Ellen's efforts. Wayne and I had only had a few conversations online prior to meeting. He works full time yet he manages his online community, and facebook site, he's working on a book, he's appeared on tv, and he's working on creating an Acromegaly nonprofit. Thank you so much Wayne for working so hard for Acromegalics, and getting the word out there. My post is by no means as eloquent as I'd like it to be. But if you're looking for additional support, definitely visit AcromegalyCommunity.com and Acromegaly Support on Facebook.

Loooong Update!

2010-04-12T08:55:00.000-07:00

The latest is my IGF-1 is 384, and doctor says normal is up to 368. Can't remember what my GH was, but it's always under 2 with the OGTT. Since I'm still at this "almost normal" level my doctor wants to put me on a low dose of Cabergoline. He's concerned about potential cardiovascular problems. My blood pressure has been averaging about 125/80, which is good, but still not ideal because it does spike up near hypertensive levels when I'm under stress. I really don't want to take the Cabergoline though. I've fought not to take medications I don't need, or to get off medications I don't need. I've had bad side-effects with every medication I've taken, and I also wonder how I'm harming my body internally by taking these medications. And truly, those side-effects make taking the medications not worth it to me. I also suggested going from 40mg of Sandostatin every 4 weeks, to every 3 weeks instead. My blood pressure has greatly improved this last year that I've been on the 40mg. I was told there really isn't enough evidence to support that would be effective.

So now I'm stuck wondering if staying at this "almost normal" level is ok? If it's all I'll ever be? I don't know if I have a chance at normal. I feel like taking these other medications may put me at unnecessary risk. I already have a myriad of symptoms that aren't controlled by the Sandostatin. I've dealt with them as they came along. I've constantly complained about the fatigue, the headaches, etc., and my doctors tell me they don't know what's causing it. My thyroid and other levels are normal. But it greatly affects my quality of life. I didn't realize that I'd never explained to my husband in depth how this fatigue affects me till the other night. I've been dealing with this ever since 2006 at least, when I was diagnosed with Acromegaly. I guess I just blogged about it.

The fatigue is with me daily, and usually headaches too, although I have less since getting off the bp med Diovan. Dragging myself out of bed every day is an effort, socializing, staying on the computer more than an hour, driving more than 30 minutes, reading....anything that seems to require my concentration for extended periods of time seriously fatigues me. Standing for long periods, walking for long periods, just doing weekly grocery shopping fatigues me. It feels like there are hands compressing my head, my scalp feels tight, my shoulders feel like there is a weight on them. My face even feels like it's being pulled down, like there's a weight on it. If I don't have a headache already, I usually develop one on the left side, along with the muscle pain on the left side of my head and neck. And my memory and concentration are horrible. My short term and long term memory seem gone. I get tired or easily distracted when people are talking to me, or when I'm trying to read. I have to constantly tell myself to pay attention to what they're saying, or I have to constantly re-read sentences. I've turned to caffeine to help me concentrate, but it only helps so much. I have a hard time understanding people too, which is weird. It's almost like I'm dyslexic, which I know I'm not. And I'm harder of hearing now too.

I've tried to exercise regularly but seem too tired/not motivated enough to continue. About a week or two is all I manage before I stop. And the exercise is a problem too. It doesn't matter how little or how hard I work out, I always end up with muscle pain that lasts a few days to a week, and is in fact quite annoying! Why would I want to continue working out when I know this pain is what I can expect? About the only thing that seems to help with the fatigue is laying on the couch prone or almost prone with my feet up. Closing my eyes for a rest, or sleeping also helps. I can watch tv without getting too fatigued. Yay for me, that's the only activity I ever wanted to do for the rest of my life right?! I'm only 33 for Pete's sake! I can do other activities, for instance I went rollerskating at a rink a few weeks ago. It was my first time in probably 20 years, and it was so fun! But I had to push myself the whole time, like I normally do with any activity that requires my concentration. And then afterward I had to deal with the muscle pain for the next week plus. And the sad thing is how much I was looking forward to getting home and resting, like always nowadays.

A friend of mine mentioned she was recently diagnosed with Chronic Fatigue Syndrome. I'd heard of it before but never considered it. I looked into it though and it looks like I have a lot of the symptoms. It looks like it's hard to diagnose though, and that you must rule out a lot of other things first. And even if I'm diagnosed, really what is the treatment? Especially when I don't want to take more pills that I don't need to take, or pills that will give me side-effects I don't want.

I'm so completely frustrated by my condition right now. I really feel like I look great visually, I think I look almost normal. I'm so grateful the Sandostatin has given me that back at least. Developing the Acromegaly monster's appearance sure isn't every girl's dream! But I don't FEEL normal at all inside. I was a week late on my Sandostatin shot last week due to a doctor's office mix-up, and I was a basket case! I was so irritable, more so than normal. And I was in tears twice, which is not very normal for me. And they were the kind of crying jags that could've lasted forever. I was having a terrific pity party for myself. So what now? I have no idea where I go from here. I'd almost rather take the option of staying at this "almost normal" level with the knowledge that I'll probably die a few years younger, or even quite a few years younger. Rather than worsen my quality of life with more medications, and prolong my misery.

So right now I'm trying to really work on improving my health any way I can naturally. Considering I can't seem to keep a regular exercise schedule (although I am still trying), I'm getting stricter with my diet. Which is hard to do considering I have 3 growing kids, and a husband who doesn't help much in that area! I'm trying to drink green tea once a day at least, since it has cancer fighting properties, as well as helping to slim the waist. I'm trying to kick my sugar habit cold turkey, I have a feeling that won't work but I'm trying. I'm limiting natural sugars. I'm trying to eat oatmeal a few times a day since it's supposed to be good for the heart and the waistline too. I'm working on controlling portions which is very hard because ever since I've gotten Acro I've had a monster appetite. But the main problem for me is sugar I think. I'm hoping once I curb that craving, the fat along my waist will disappear and I'll have a normal blood pressure. I'm hoping that regulating my diet will help improve the Acromegaly and other symptoms I have.

Insurance Ugh!

2010-04-12T08:46:00.001-07:00

I'm sorry, I have to post this. Is there anyone who knows ANYTHING at my insurance company?? It's like they've instructed their representatives not to give out any information about eligibility. I call in and always feel like I'm talking to myself!! These people know as much as I do. I try looking online but don't find the info I need. And every time I call in, they never know what laboratories are considered in-network, and they try to tell me that the closest in-network are 40 minutes out of town. I know that's not true because I've gone to laboratories in town and they've been covered. My doctor keeps giving me the lab slip for a lab that's not covered. Maybe they're out-of-network, but in town, but they still pay for it?? Frustrating!!

Tune in to TLC Sunday 8/7c

2010-03-11T11:29:00.000-08:00

>> HELP! I'M TURNING INTO A GIANT - Sun at 8/7c <<
A heart-breaking look at individuals suffering with Acromegaly, a rare condition that causes the body to grow uncontrollably. These modern-day giants exhibit amazing bravery and determination to lead normal lives.

Tanya (31) - http://www.youtube.com/watch?v=HNQyHR1l-x4

Macular Degeneration

2010-03-01T22:20:00.000-08:00

Years ago my eye doctor remarked on the fact that I had a second set of eyelashes, and he seemed surprised by that. I thought that seemed odd. Now I'm wondering if the second set of lashes is a normal thing, or if it may be another indicator of Acromegaly? The quicker someone can be diagnosed with this disease, the better.

My eye doctor also told me I had "buried drusen" a few years ago. He explained, but didn't seem to be worried about the condition. He just kept monitoring me every year. Now I'm beginning to think I'm in the early stages of Macular Degeneration. Symptoms I've had are drusen and high blood pressure (I'm actually back down to prehypertensive right now though). And in the last year or so it's become harder to read my computer monitor. I thought maybe my prescription changed, or my eyes were just getting tired quicker. It's as thought my eyes don't want to stay focused on the center of the page, but try to read around it. I've also noticed it's harder for me to tell certain colors apart, like orange and red. Those are two more signs of Macular Degeneration. I have my annual appointment in April, so I'll find out for sure then.

Meeting with Another Acromegalic

2010-01-24T21:47:00.000-08:00

I met my first one in person today, Ellen!! I posted about it shortly on Acromegaly Bloggers, but I wanted to share on my blog a little more in depth. She and her husband were very sweet, open, and funny. Thank you Ellen for sharing so much of yourself with me. I truly appreciated it, even though I don't always show my emotions openly. I felt like we'd known each other for a long time already, since we've chatted online. I truly wouldn't have suspected she had Acromegaly if I'd met her on the street! I'm not sure if that's due to her treatment of Sandostatin? I had noticed that I thought she looked different since I'd first seen pictures of her online (prior to treatment). I wonder if the Acro monster is losing some of it's grip on me since I've been undergoing treatment too?

I remember years ago when I first started developing Acro (unbeknownst to me), and I literally felt like I was changing into a monster. Physically, and mentally I felt as if I were transforming. I would look at other people, and I recognized them as if they were a different species. I really identified with the link Ellen posted on the "Hulk" on Acromegaly Bloggers, although I didn't have the increased height of the Hulk. Anyway, I kind of expected to identify with Ellen when I saw her in that way. As if we were members of the same species :-) But I don't feel that happened. I'm not sure why, but I thought that was funny.

We talked about so many things, and it was nice to commiserate, and to share our similar experiences. I have to confess talking about Acromegaly still makes me feel like too much of a worrier, or a complainer. We do have legitimate health issues, that I can't ignore. I wish I'd had more to contribute, that I could've helped in some way besides basically affirming that we suffer from similar ailments. I know that can be helpful in its own way though, based on my own personal experience. We're not alone, and although I'm sorry she has Acromegaly too, it's also a positive thing that we share this disease. That we can identify with each other. That we're not crazy as I've thought so many times in the past :-) Seeing another person with Acromegaly who seems so "normal" on the outside was very gratifying. Living with the disease every day can be such a drag on our energy, and our outlook. But we can stay positive, and we can beat this disease to a certain extent.

I wish I could meet more of you in person. If only to hug you and say, things are going to be OK. Dealing with Acromegaly, especially in the first few months is such a shell shocking experience. But so many people I've talked to have gotten through surgery, and started treatment, and started to return to semi-normal lives. Yes, we still live with the disease, but so many of us have almost beaten it. I've never been to a therapy session for Acromegaly, or for people with tumors or cancer. In many ways this blog has been my own little therapy session. I hope everyone is doing well. In fact, it would be nice to have updates on how people are doing. I worry when I haven't heard from people for a while. Worrying is like my full time job :-)

A Bit of Good News!

2009-11-11T11:33:00.000-08:00

I think many of the symptoms I've been having in the years since my surgery are not actually related to the acromegaly. I've kept telling my doctor and my endocrinologist about my symptoms, and they've kept testing me for different things that I may be deficient in. I even thought maybe my pituitary wasn't functioning correctly, so maybe I was experiencing early menopause. But my lab results always came back in the normal range.

It's funny how things seem to happen by chance. Our insurance was requiring us to start getting our maintenance medications by mail order. So I was going to have to switch from the Diovan 80mg to a generic alternative. When I was researching that alternative I learned of all of the side effects of this medication, which were also side effects of Diovan. Apparently I never read through my instructions on Diovan thoroughly enough. When I'm experiencing so many different symptoms, over a gradual period of time, I guess it's hard for me to think they may be related.

The problems I've been having in the last few years: headaches, muscle and joint soreness, heart palpitations, fatigue, sore throat, dizziness, memory issues, blurred vision, etc. I also think I've had some hair loss, and may have had a small case of pruritus (a sensation of wanting to scratch an itch). Many of my symptoms seem to have been on the lighter side, which made me assume they were normal. I didn't even realize they could be side effects. But I'm hoping that they are side effects of the Diovan.

I always told my doctors I didn't want to take any medication unless I had to. Still, my primary doctor started me on a daily dose of 80mg Diovan. I can understand his concern for my health. But I wonder now why he never suggested I start at a lower dose. At the time my blood pressure was around 140/90. I recently told my doctor since my blood pressure had been controlled very well in the last few years, that I wanted to try to get off the medication gradually. He told me I couldn't get off the medication. Well, I decided without his approval to start weaning myself off the medication, even though I know that's not recommended. But besides the high blood pressure, and the fact that I have Acromegaly, I'm in good health.

Before Acromegaly, my blood pressure readings were always 120/80. I started taking the Diovan every other day for a week, then half a tab every other day for a week. I monitored my blood pressure in the morning, afternoon, and evening. At the 40mg every other day I'm feeling a lot better, and my blood pressure readings have been staying about the same or decreasing. On the 80mg it was around 120/80. I've gotten down to 116/73. I'd love to stop taking the medication altogether but I doubt that will be possible. I tried to go homeopathic with the apple cider vinegar a while back and couldn't stand it :-) But if all of my symptoms were actually side effects of the Diovan, I think I'd take anything over that. My health problems have had quite a negative effect on my quality of life the last few years. I've felt more like a 60 year old woman, than a 32 year old. I'm thankful that I may have finally found an answer to so many of the problems that have been bothering me :-) I'll keep you posted on my progress!

Pinched Nerve - Acro, Genetics, just getting older??

2009-09-04T22:46:00.000-07:00

I always want to attribute every new weird medical problem I have to Acromegaly :-) I'm not sure that's what's causing it in this case. I've had a pinched nerve in my leg now for the last 5 weeks, possibly caused after I did some digging with a shovel. The pinch didn't happen immediately after, it was a couple days later. I wouldn't think a little digging would cause a problem like this for a 32 year old, but I could be wrong! I was told after x-ray that I have spine arthritis in the T4-T8 area, with some disc thinning. The Dr sent me to physical therapy and told me I can exercise, but should avoid lifting over 50 lbs, and back contortions (no yoga for me). The last few weeks resting, elevating the leg, and heat have really decreased the pain. Increased activity seems to make the pain worse. My family has a history of back problems so genetics may be playing into the equation.

I've also noticed that there seems to be some relation between repetitive actions and increased muscle aches for me. I'm an avid reader, but I've purposely avoided reading lately. The pain and tightness on the left side of my neck and shoulder (and headaches on the left side) seem to have gone away. I'm wondering if the pain was caused by too much reading, holding the book in my left hand for hours at a time, day after day. I've noticed at other times when I overdo things my muscles ache as well. But I don't think it would be overdoing it, these actions don't seem like they should be that detrimental to a person the same age without Acromegaly. Or maybe I'm just getting old! :-D I may be grasping at straws but it makes me wonder!

Good News!

2009-05-05T15:34:00.000-07:00

Yay :-) Dr. Ku just called to tell me my labs were good. My GH was 1.5, and my IGF-1 was 377, with a normal range for my age of up to 368. So I'll be getting another check-up in 4 months.

Phone Call from the Endo

2009-03-31T18:44:00.001-07:00

My next appointment with Dr. Ku at UCSF has been pushed to 4/28. I rescheduled so I could go get my labs done, DOH! He forgot to give me a lab slip, and I forgot to ask. It would be nice to actually have results to talk to him about when I see him :-) Anyway, he called today to tell me he got my labs from 3/9/09, that lovely glucose tolerance test again. It just keeps getting better and better trying to force myself to drink that nasty stuff without vomiting :-D I think I worry the poor lab tech. I must look visibly paler and more sickly every time I drink it :-D Back on topic, my GH was 1.2 ng/mL (after 2 hours) which is lower than it's been before, and that's great! It was 2.2 ng/mL in 5/08. So the 4 months on the increased Sandostatin 40mg has helped. Dr. Ku says he'd like my GH to be under 1 but if my IGF-1 is at a good level then he won't worry much. Unfortunately my IGF-1 may not be at a good level. My IGF-1 from 3/9 was 521, and that's up from 464 in 5/08. That's higher than it's been in the past. So Dr. Ku wants to know if the IGF-1 is actually higher, and he's sending me to another lab to try to pinpoint that number. If my IGF-1 comes back high again then he says he'd like to be more aggressive in my treatment because I'm topped out on the 40mg of Sandostatin. Hopefully I'll have good news to report in a few weeks.

Another Update

2009-01-14T08:29:00.000-08:00

I hope everyone had a wonderful holiday! I was contacted by another acro friend and it made me realize I haven't posted in quite a while due to the holidays and all (that and my extreme laziness lately!). It's been nice to email with people and learn their stories, to know we're not alone in this. I feel horrible for not following up with everyone like I should. I just don't seem to have the energy lately. I don't stay on my computer more than an hour or two a day now.

My health has been very good lately though. I've been receiving 40mg of Sandostatin (one injection on each side now) for almost 3 full months. I go back to see my endo on 3/3 when it's been 4 full months of the 40mg, and I'll probably have another MRI in April. My MRI's have been excellent, no regrowth. I think my theory of TMJ may have been off. I got a night guard but haven't worn it. But since starting the 40mg of Sando my headaches have dropped off significantly. I'm so happy that I no longer have daily headaches. I do still avoid things that seem to trigger the headaches though, like opening my jaw too wide, and wearing my hair in a ponytail. I think reading books may be causing me headaches as well. I'm an avid reader, and I always hold my books in my left hand. I noticed the muscles of my left shoulder all the way up to the back of the left side of my head are always very sore and tight. I'm trying to adjust how I hold my books now to see if that helps.

The fatigue is always with me though. I did have a very nice holiday, and I did have fun. But going through the holidays depressed me a little because socializing seems to tire me very quickly, having to concentrate so much on what everyone is saying and to prepare my replies carefully. It's much harder for me than if I were allowed the time to compose my thoughts in writing. The holidays made me conscious of just how much I didn't interact with others, as opposed to how much I used to before the acro. I felt like so many times I was very quiet, and basically felt like an observer, letting all of the conversations flow around me but not contributing, watching as if I were outside my own body. I try to stimulate my mind by reading and playing games. But when it comes to making conversation I'm never able to recall as much as I'd like, and therefore I'm not able to contribute as much as I'd like. I can't remember so many things from my past, things I learned in school, things I should've remembered even about important current events that I've lived through. I wonder how much of it is age (I'm turning 32 soon), and how much is the acro. I notice my hair is graying already and I'd like to blame that on the acro too haha :-)

Onto a New Theory...

2008-10-08T08:37:00.000-07:00

I can't seem to pinpoint a real link between excess sugar/caffeine and my headaches. So my new theory is maybe it's TMJ (Temporomandibular Joint Disorder) causing the headaches. I never knew TMJ could cause so many problems. I had braces that helped to correct a big overbite when I was younger, so I guess I thought my teeth must've been perfect afterward :-) It seems that isn't so. I haven't helped things any by failing to wear my retainer at night either..for the last couple years. I've had many symptoms over the years that I didn't connect together, much like I didn't connect my acromegaly symptoms.

TMJ symptoms/contributing factors: bruxism (grinding teeth), malocclusion (misalignment of teeth), head/neck/shoulder aches, clicking in jaw, inability to open jaw as wide as before, ear problems (feeling of fullness/muffled hearing - my hubby thinks I'm going deaf because I turn the tv volume so loud!), dizziness, feeling of jaw "catching", stress, bad posture, jaw pain (when pressure applied)

I didn't think I could have TMJ since I don't have noticeable jaw pain, even though I have all of the other symptoms! I didn't realize head/neck/shoulder aches could be caused by TMJ. Or that it could be aggravated by stress. I did think it was interesting that when I have slight headaches, and I've pressed on my upper jaw, sometimes the headache seems to lessen.

I was prompted to see my dentist this time by the fact that no matter how careful I chew, my teeth keep biting the skin inside my mouth and my tongue causing painful canker sores. I'd never had one on the tongue before and I can say it is very, very painful! I've also developed sores from my teeth rubbing against my mouth while I sleep! I decided it was time to get my teeth in alignment again and also ask about the TMJ. She referred me to an oral surgeon who confirmed the diagnosis.

The acromegaly has caused my lower jaw to push forward so far that the oral surgeon said I'm a class 3 malocclusion (I believe I've got that right!). He said my case isn't really bad yet, so that's good! I now need to have a night guard (or splint) made by my dentist, then I need to see my orthodonist to see if he can do anything to help with the alignment of my teeth. The oral surgeon suggested I try to manage the TMJ by trying not to clench my jaw, cutting my food into small pieces or trying a softer diet for a while, avoiding stress, etc. I could handle a milkshake/smoothie diet :-D Hopefully I'll have found the answer to my problems!

Headaches & Sugar?

2008-09-19T23:53:00.000-07:00

I've been having almost daily headaches since I was diagnosed in 8/06. Two years of headaches and I'm finally getting serious about trying to find a way to stop them. I've just assumed they're part of the disease (I've heard of other acromegalics who have headaches after surgery), but maybe that isn't so.

I've been to a neurologist who wanted to medicate me, which I didn't want. So I let her send me to physical therapy. The heat and massage helped, but didn't solve it. I notice I get headaches when I get stressed (never used to happen before acro). My neck tenses on the left side and then the headache is always on the left side of my head. I've had blood tests to check for vitamin deficiencies, glucose problems, etc. Everything is normal. And I am happy about that :-) I've been to the chiropracter, that seems to have helped. I learned my C1 vertebrae is out of place slightly. I'm looking forward to seeing how the chiropracter may help my headaches. Although insurance doesn't cover it so I can't go very often, not 3x a week at $40 each visit. As a result I'm trying to locate other possibilities.

I'm wondering if I'm creating my own problems. I always had a sweet tooth when I was younger. But with the acromegaly the sugar cravings (mainly for refined sugars it seems) really seem to have grown. I noticed so many things that I buy are sweet things. Maybe it's a combination of things? Too much sugar, and not enough water? Fluctuations in blood sugars causing headaches? I don't think it's a caffeine problem. I have a soda a day or less. So I just started a journal a few weeks ago to try to pinpoint the cause of the headaches. I believe it was Ken who mentioned early on to me that sugar and coffee were very bad for acromegalics. I kind of brushed that off, probably because I love them so much! :-D In the first article below I read, "One of sugar's major drawbacks is that it raises the insulin level, which inhibits the release of growth hormones." So maybe my sugar cravings have been my body's response to the disease, trying to decrease my elevated growth hormone levels. Interesting.

Hopefully I'll have some interesting answers to report in a few more weeks. I'm trying really hard to cut out refined sugars (seems impossible in our fast food/prepackaged society).

Sugar's effect

Sugar: Pleasure or Poison

Sugar Sleuths

GH Update

2008-05-20T20:47:00.000-07:00

For some odd reason I'd hoped this visit would've gone well. No such luck. Went to UCSF today to see my endocrinologist. My fasting GH was 2.8 ng/mL, suppressed GH after 1 hour was 2.7 ng/mL, after 2 hours was 2.2 ng/mL. Didn't quite make it under 1 ng/mL. My IGF-1 was 464 with a reference range of 126 - 291. My doctor told me again that as far as he's concerned the assay range for the IGF-1 has been changed too much recently to use my IGF-1 level as a predictor of how well I'm doing.

So going strictly by my failed GH testing he's recommending I go up to the 30mg Sandostatin LAR, and check back with him after 3 full months on the med. Visibly I look better, more swelling has gone down with the increase in the last few months to the 20mg. But I really don't want to think of where I go from here when I find out the 30mg doesn't work. I'm sick of fighting with this disease already. I feel more like a 50 year old than a 31 year old. I'm fatigued all the time even though my thyroid and other numbers are good. My headaches have improved but I still have them quite often. I have heart palpitations sometimes but my EKG was fine. Everything seems *fine* but I don't FEEL fine. I'm still waiting to discuss my latest MRI with my doctor. But my last MRI was good and my GH was still too high. I really don't want to consider radiation and possibly damaging my pituitary gland further, but what option do I really have?

Checkup at UCSF

2007-12-18T20:48:00.000-08:00

Today I went to see another endocrinologist at UCSF, Dr. Ku. I don't know if I should name names. Especially when I complain :-D They bounce me around between doctors a lot (fellows), but at least this one seemed nice and actually concerned. I can't say the same for one of the head doctors there, Dr. Tyrrell. He gave me my shots but generally seemed in a hurry to get me off his hands every visit. I can at least thank him for prompting me to plead with my primary physician to do the monthly shot (because they initially refused) - and now I don't have to travel to San Francisco every month.

Dr. Ku made sure to check all my vitals and actually asked questions, etc. I told him about my fatigue and headaches and he gave me the normal "don't know what to tell you about that" answer that I get (and expect now) from all of my endocrinologists. He told me the labs for the glucose suppression test came back with the GH at 2.1 and IGF-1 at 389. Back in 5/07 my IGF-1 was 370 and GH was 1.3. This doctor told me that they've changed the normal range so much on the IGF-1 over the years that it's not always a very accurate way to judge things because the range has been so skewed. This is the first time I've heard that one. He also said that he thinks my GH should be below 1.

If I'm to believe the readings are correct, then my levels have actually raised some since 5/07, even on the monthly 10mg Sandostatin LAR. So the doctor is raising me to the 20mg and I'll get checked again in 5 months. Hopefully I won't have issues. I asked how often I should have the MRI done and he said every 6-12 months. The surgeon who operated on me, Dr. Kunwar, hasn't followed up with me because they're so busy there. So the endo says they'll follow that. Well I should hope so! I can't believe that's not a normal concern for the endo with my condition. It's as if he expected the surgeon to follow up with me, I'd think that's an endo's job? Anyway, I know that "I" will follow up with myself. Dr. Ku also mentioned that just because my GH seems to have risen some, doesn't necessarily mean my tumor has returned. That's good news but I'll still be interested to see the next MRI.

One Year Anniversary!!

2007-12-09T00:22:00.000-08:00

I can't believe it. I just realized in 3 days it'll be one year since I had surgery. I guess I should do an update :-) I'm doing really well now (knock on wood). A lot has improved since surgery, and even more so since starting the monthly Sandostatin LAR shot back in April. I feel almost normal again. I have an appointment the 18th with my endo in S.F. to check my levels again.

After surgery my depression seems to have completely gone away, where before it was chronic (YAY!). I'm still fatigued daily, and I notice that I tire easily doing simple things like getting on the computer, socializing, and driving long distances. I get headaches and neckaches often. Tylenol and Advil are my friends. My BP is under control with meds (Micardis at the moment, switching to Diovan end of month). My GH and IGF-1 are controlled. Most of my soft-tissue swelling has gone down now. My nose is back to normal size. I've gone down about 2 ring sizes to a size 7 I believe, and I can fit in my 8 1/2 shoe again!! (Down from size 10). My weight is good at 135, but I still get extremely hungry at times. My hair still seems to curl too much but I've discovered the straightening iron. I have to stretch before any exercise now or I'm extremely sore afterward (I may just be getting old in this case, I did hit the 3-0!). And I notice I still have the beginnings of TMJ. Luckily I'm not in pain but opening my mouth is awkward at times, and I deal with the awful clicking sounds/feelings.

My biggest complaint is probably wishing I knew more how to control my illness, wishing my doctors could provide me with more information. Some days the headaches, neckaches, and fatigue are unbearable (I know my limitations better now, and when I need to rest - I rest!) I get juggled around between endo's in S.F., and I never seem to have the same doctor. All they seem to do is tell me my GH and IGF-1 and not much else. At the same time I realize I could be much worse off and I do realize how lucky I am.

I've received a lot of contact lately from other acromegaly sufferers (a pleasant surprise!). It's great to hear from you and swap stories. I hope things are going well for all.

What Do I Do??

2007-09-25T22:33:00.000-07:00

I'm having too many of these moments lately. I find myself in a "situation" and I feel like I can't make a decision for fear of making the wrong one. In this case my doctor is really pushing BP med. My BP has been elevated to about 140/90 for the last year. I refused medication initially because I hate to take prescription meds, and I didn't do my homework. I finally researched and realized having untreated hypertension is much worse than taking medication.

I also didn't realize that many people have had success stories with homeopathic methods. So I let my doctor put me on BP prescription meds. Now that I know about the homeopathic options I'd like to try those. However my doctor really doesn't want me to be off prescription meds, she's really pushing them. I told her I'd follow her advice. But now I'm second guessing things. I guess ultimately it's my decision. Even though I respect her advice as a doctor, she is a "guide" in my health care. I don't see what's so wrong with *trying* the homeopathic course for a few weeks to months with daily checks of my BP. If that didn't work, of course I'd switch back to prescription meds. *sigh*

Sandostatin and GH update

2007-08-28T21:40:00.000-07:00

It seems like I'm doing extremely well. I just had my 4th Sandostatin shot. Physically I'm finally starting to look like I did 10 years ago, I'm very excited! I still have some headaches but that may be related to my hypertension. I'm trying to keep my blood pressure controlled with prescription medication, but I've read some home remedies really work. I'm hoping to try a combination of garlic and calcium, or possibly the apple cider vinegar and see if I can get off the prescription meds.

I also talked to my primary care doctor about doing the shot in office. She refused in the beginning, but I just found out her husband and partner in the practice has done the shot before. They're going to start doing them for me starting next month so I don't have to travel to San Francisco!

GH Level

2007-08-23T09:19:00.000-07:00

I had another oral GH test. GH level is still about the same at 1.4. Need to have my IGF-1 checked again as well. My endo in SF changed again. This time when this dr gave me my shot he hit a nerve and it was painful. I'm not impressed with him so far. He doesn't seem to take me seriously, and takes 2 weeks to return messages. My first visit he asked if I could be seen by another endo closer to home, basically because he didn't have time for me. As if I would travel 3 hours roundtrip to SF every month if I didn't have to. Unfortunately my primary dr refused to do the shot, and the only other endo I saw closer to home I personally didn't like, and felt that he was unqualified to treat me. I'm tired of dr's who just don't seem to care. I asked my primary dr again if she'd consider doing the monthly shot. She said she'd consider it but I haven't heard from her in 2 weeks either.

Picture Timeline

2007-07-03T10:06:00.001-07:00

I thought Alecia had a neat idea with the acromegaly 'before & after' surgery picture timeline so I made one too. It helped me pinpoint when the physical changes started, probably around early 2003. In 4/02 I had my retainer adjusted because of the gap between my teeth widening. In 5/03 I had my rings resized larger. However I don't know when exactly the disease began of course.

My first Sandostatin Shot!

2007-05-01T22:33:00.000-07:00

I went to SF for my first 10mg Sandostatin shot. Yay!! My Dr says since my GH was so close to normal, and my last IGF-1 was about 370, he doesn't think I'll need to go over the 10mg Sandostatin, but we'll see in a couple months.

It was all easier than my scary imaginings :-) I imagined a HUGE needle and that it would hurt really badly. But it was very quick and felt like a normal shot. I also have to remember to call an hour before each injection appointment so they can take the medication out of the fridge. Oh yeah, and Dr told me to stay away from fatty foods so I don't get gallstones.

Good news!

2007-04-25T23:15:00.000-07:00

My insurance finally approved 12 monthly visits to UCSF + 12 Sandostatin LAR injections. I really had to stay on top of them. I basically had to assume my insurance, and my primary doctor were complete idiots who don't communicate, and call them about everything constantly. But it worked :-D I should start injections next Tuesday as long as they get the med in time. Oh, and my oral GH testing was 1.3, should be <1.

UCSF Update

2007-04-03T20:37:00.000-07:00

I'm excited to have some good news today. My doctor told me that we're going to skip the 3 weeks of daily injections and go straight to the monthly injections of Sandostatin LAR. I'm a little worried about the side effects, but as long as it works out it will be so much more convenient. I've also been taking cortef (oral hydrocortisone) and levoxyl (synthroid) prescribed by another doctor and he told me I can begin weaning off those as it doesn't appear I need them based on bloodwork. So the only med I'd need would be the injection, yay! I hate to take any drugs I don't need. I'm actually beginning to see I have more side effects than I realized thanks to the cortef most likely. Maybe I don't have fibromyalgia after all, just side effects of cortef.

I also now know my GH level based on blood tests is 7.4 ng/mL. This number may have been affected by my taking the steroid hydrocortisone. The doc says normal accepted level used to be 5 ng/mL, now it's 2 ng/mL. I'm going to do the oral glucose tolerance test for GH next week. And hopefully within 3 weeks when I return to UCSF and insurance approves I'll start on the Sando shot.

My Body Is Out to Kill Me!!

2007-03-28T21:21:00.000-07:00

Had my first endocrinologist appointment with UCSF on Tuesday. I think it went ok. But my BP was 150/110. Since getting acro it's usually higher, around 140/90. Normal for me used to be 120/80. Anyway, it's getting up there. So the endo wants me to schedule an echocardiogram to rule things out. He wanted me on BP meds right away, but I hate to take any med I don't have to. Especially since I usually get ALL of the side effects. I'm going to see if the Sandostatin injections help lower my BP, since I'm thinking it's an acro symptom. The endo suggested I start injections 3x a day for 3 weeks, then if all goes ok I'll go the once a month route.

Acromegaly, Andre the Giant, and me!

2007-02-09T12:44:00.000-08:00

Why I'm Talking Now

I have a very rare disease called acromegaly. The reason I'm posting about this is there's very little information regarding personal experiences with acromegaly. I feel like I have to put myself out there to offer information on the experiences I've had. And I would like to know more about how this will affect me in future.

What is Acromegaly?

Acromegaly is from Greek akros "extreme" or "extremities" + megas "large" = extremities enlargement. It's not considered a genetic disease. I acquired it somehow.

Statistics of Acromegaly

In the United States:

40-60 people out of every million have acromegaly
3 new cases per 1 million in the U.S. each year

Worldwide:

approximately 4,676 cases per million
116 new cases per million per year

My Experience

I was having some severe headaches last summer around July 2006, to the point where I felt non-functioning, which is unusual for me. I'd never even had a migraine that I knew of. I had an MRI of my brain and they found a benign pituitary macroadenoma 2.3 X 2 X 2.2 (or a large pituitary tumor, greater than 20mm).

Small pituitary tumors are actually pretty common. Based on autopsies in the U.S., 25% of people have them. Most are benign, and they don't seem to cause significant medical issues.

My Symptoms:

2.3cm pituitary macroadenoma (large sellar/suprasellar mass, left carotid artery slightly displaced, slight mass effect on optic chiasm)
severe headaches (mainly left posterior)
severe fatigue
enlarged spade-like hands and feet
achy joints, enlarged knuckles
depression (12 years before acromegaly diagnosis)
some confusion/memory and speech issues
irregular periods, amenorrhea
prolonged lactation
soft tissue growth
extra abdominal fat?
acne
developed barrel-like chest
enlarged nose and tongue
some frontal bossing of the forehead, sunken eyes
skin tags
snoring
high blood pressure
arthritis?
excessive sweating
teeth spacing
less libido
skin darkening
irregular heartbeats?

The Endocrinologist

I went to Stanford and saw an endocrinologist (hormone specialist), Dr. Katznelson. He visibly diagnosed me as acromegalic immediately. I was totally in denial that I could have this "disease". He referred especially to how my hands were so large and spade-like in shape, I had a lot of "soft tissue" growth he said. My ring sizes had grown (I didn't know at the time, but by 3 sizes on some fingers), my shoe size had grown (by 1 1/2 sizes), and I had other visible symptoms of acromegaly like the widening nose, enlarged tongue, and skin tags, along with my non-visible symptoms.

My tumor was behind my nose, beneath the brain in an area of dead air space. However, it was the size of a walnut, and it was squishing my normally pea-sized pituitary gland like a pancake. The pituitary gland regulates the hormones of the entire body. There was the possibility that my pituitary gland might have to be removed, in which case I'd need to be on HRT's (hormone replacement therapy) the rest of my life.

Surgery 12/2006 @ UCSF (San Francisco, CA)

I ended up having surgery at UCSF (San Francisco, CA) with Dr. Kunwar on December 12, 2006 to remove the tumor transphenoidally (through the nose). My surgery began around 8am and only lasted about 3 hours. The surgeon cut through the sphenoid bone, pulled the tumor out and packed the hole with a fat graft from my abdomen. I also had a lumbar drain inserted into my lower spine to reduce any pressure from fluids around my brain. I was a little freaked out by blood dripping from my nose for the next few hours following surgery, especially when I walked around. I had no nasal packing, but eventually it stopped.

I left the hospital by 11am the following morning. It was very similar to a sinus surgery, it seemed almost cosmetic to me. It only took me 4-6 weeks to recover. I had no headaches and basically felt like I had a bad head cold. However I am still very fatigued, which is pretty much normal I think. As far as I know at this point, the tumor was removed 99%, and my pituitary gland is intact.

Based on the statistics, if I didn't have surgery I could have gone blind because the tumor was beginning to press on my optic nerve. And my life expectancy would have been half that of a normal person because of all of the effects of the tumor and the acromegaly.

I had so many symptoms that came on gradually over the last few years, I didn't realize they were related at all. In fact, as each new symptom appeared it was easy for me to explain them away without checking into them because they didn't seem related.

Acromegaly in a Nutshell

Basically, in a nutshell, the tumor caused my pituitary gland to produce too much growth hormone (GH), which caused the acromegaly. The GH caused production of insulin-like growth factor (IGF-1) in my liver. The IGF-1 causes bone and tissue growth. The good news is even though my tumor will possibly recur, it can be controlled. And I can live a normal life with most likely a normal life expectancy thanks to my surgery and continuing treatment. Most likely I'll need to have shots every month to control my growth hormone and IGF-1.

The Famous Acromegalic

The reason I mentioned Andre the Giant (the WWF wrestler, also known as the giant in the movie 'The Princess Bride') is that he had acromegaly also. It's just that his form of acromegaly is called 'gigantism.' Gigantism is a type of acromegaly that begins in pre-pubescent children whose long bone cartilage hasn't fused together yet, leading to excessive bone growth. This in effect leads to excessive height. Acromegaly in adults causes many of the same excessive growth issues (but not excessive height). For example, my organs can grow too large which can cause me many problems like diabetes and congestive heart failure in the long run.

Links:

Acromegaly.com - satellite site of the Pituitary Network Association
http://www.acromegaly.org/about_acromegaly.aspx%2520Acromegaly.org

Endocrine & Metabolic Diseases Information Service http://www.endocrine.niddk.nih.gov/pubs/acro/acro.htm%23causes

Acromegaly - Wikipedia
http://en.wikipedia.org/wiki/Acromegaly

Pituitary Tumors
http://www.umm.edu/endocrin/pittumor.htm

A personal acromegaly blog
http://blessed-beyondmeasure.blogspot.com/

Acromegaly forum
http://acromegalysupport.com/phpBB2/index.php

A little about me

2007-02-09T12:38:00.000-08:00

I'm 30 years old. Just turned unfortunately :-) I'm married with 3 kids. I'm a big family person, love my family. I'm a student at CSU Stanislaus, although taking this semester off. I'm majoring in Computer Information Systems, although I don't know if that's what I want to do now. I also have a medical condition called acromegaly and I'm looking for others with personal experiences to share.