One day post-op and I'm thrilled to report a smooth and complication-free surgery! Thanks so much for all your thoughts and prayers. You people rock. Here's a little update courtesy of my most fabulous husband, David:
Hey folks -
As most of you know, Sarah went into surgery first thing this morning. Well, that's done, and she is doing well, recovering in her hospital room. Here's the surgery story:
Dr. McCutcheon found and removed tumor tissue on the right side of the pituitary gland, with the characteristics he associates with Cushing's tumors (white, soft tissue vs. darker, rubbery normal pituitary tissue). The tumor was not touching the sinus wall (which is very good!) and the sinus wall was clear of tumor on inspection. He also found and shaved off a small area of suspicious tissue on the left side of the gland (though it did not have those Cushing's tumor characteristics). He estimates that a little over 60% of her pituitary gland remains intact; chances are good that she'll have full pituitary function. There was no CSF leak detected.
While he was at it, the surgeon also cleared out a pocket of gnarly infected goop in her sphenoid sinus, which was trapped behind some scar tissue left from the prior surgeries, and very likely the root of her nasty recurring sinus infections. Goodbye gnarly goop!
This is all great news. Sarah is quite happy at the outcome, and hopeful of being cured. She got what she was wishing for: a careful inspection of the whole gland, removal of anything suspicious, a thorough sinus cleaning, and (very likely) no long-term impact on her pituitary function. Looks like her big gamble might pay off!
Physical recovery from the surgery will take at least a few weeks. We'll be here in Texas until late next week, then recovering back at the rancheroo. We won't know for several months whether Sarah is cured of Cushing's (be patient and hopeful!)
Take care,
David Lowe
Saturday, September 25, 2010
Thursday, September 23, 2010
Our Family Vacation... Sorta
Tomorrow is the big day: d-day, the moment of truth, the day of reckoning, the appointed hour (er... the appointed day?) or, for the more geeky among you, the day that I undergo a third transsphenoidal pituitary surgery to resect my residual ACTH secreting adenoma. Yep, the gland of oz is getting another trimming!
As most of you know, I've traveled to MD Anderson Cancer Center in Houston, Texas for this surgery. It's a little crazy -- I know -- and a very long way from home but I'm here to see a serious super-hero of a neurosurgeon, one who is among the top in the world for pituitary surgery. I mean he has a wikipedia page. How cool is that?
Anywho, it's been a crazy fun trip so far and I've learned something along the way: if you ever find yourself wondering how to take the bore out of a potentially very boring trip, say across several states to undergo neurosurgery, well folks, I've got the answer: bring your kids. Seriously, we are having such a ridiculous blast of a time. From soaring through the clouds (have I mentioned my kids are born to fly? Sounds cheesy, I know, but man does it get them fired up) and daily swimming at the pool to riding the elevator up and down then back up and then down, it's been one awesome adventure after another. And the fun doesn't stop there-- David's still got a few tricks up his vacation sleevies. He'll be taking them for a good ole fashioned train ride beneath a herd of man-eating sharks and to visit the NASA space center (featuring REAL LIVE SPACE SHIPS OMG OMG), while I spend my days lying in a hospital bed hopped up on narcotics dreaming up my own wacky rocket launches possibly also featuring man-eating sharks (I've heard the drugs here are REALLY groovy).
Oh and in non kid related fun vacation news, I got to meet another Cushie today! I've only met a few others IRL, all in passing at my endocrinologist's office, so this was the first time I've really had the chance to sit down for hours and yak up a storm face to face. It was awesome!
So, yes, so far our decision to make a little vacation out of this round of surgery has been a total blast. Will I still feel that way after I've had my lobotomy, err... I mean pituitary surgery, and am recovering in a hotel room, chiddlers running amok? I'll letcha know.
As most of you know, I've traveled to MD Anderson Cancer Center in Houston, Texas for this surgery. It's a little crazy -- I know -- and a very long way from home but I'm here to see a serious super-hero of a neurosurgeon, one who is among the top in the world for pituitary surgery. I mean he has a wikipedia page. How cool is that?
Anywho, it's been a crazy fun trip so far and I've learned something along the way: if you ever find yourself wondering how to take the bore out of a potentially very boring trip, say across several states to undergo neurosurgery, well folks, I've got the answer: bring your kids. Seriously, we are having such a ridiculous blast of a time. From soaring through the clouds (have I mentioned my kids are born to fly? Sounds cheesy, I know, but man does it get them fired up) and daily swimming at the pool to riding the elevator up and down then back up and then down, it's been one awesome adventure after another. And the fun doesn't stop there-- David's still got a few tricks up his vacation sleevies. He'll be taking them for a good ole fashioned train ride beneath a herd of man-eating sharks and to visit the NASA space center (featuring REAL LIVE SPACE SHIPS OMG OMG), while I spend my days lying in a hospital bed hopped up on narcotics dreaming up my own wacky rocket launches possibly also featuring man-eating sharks (I've heard the drugs here are REALLY groovy).
Oh and in non kid related fun vacation news, I got to meet another Cushie today! I've only met a few others IRL, all in passing at my endocrinologist's office, so this was the first time I've really had the chance to sit down for hours and yak up a storm face to face. It was awesome!
So, yes, so far our decision to make a little vacation out of this round of surgery has been a total blast. Will I still feel that way after I've had my lobotomy, err... I mean pituitary surgery, and am recovering in a hotel room, chiddlers running amok? I'll letcha know.
Thursday, August 26, 2010
The Gambler
Dumping Cushing's is shaping up to be a whole lot more difficult, time consuming and downright heart wrenching than I had anticipated. This disease, it turns out, is not nearly as down with being the dumpee as I am with being the dumper. As you might imagine, I'm pretty annoyed. I mean I totally dumped this shite months and months ago! And then, when it weaseled its way back in to my pituitary gland, I DUMPED IT AGAIN. And, now, after being not so subtly kicked to the curb twice (there's just nothing subtle about neurosurgery, even the purely endoscopic variety), it's back, carrying on as if we're still young lovers with nothing better to do than feel sick all the time.
*Sigh* In case I'm overusing the dumping metaphor and/or you have no idea what the crap I'm talking about, let me put it bluntly: I still have Cushing's. After two surgeries and the removal of two tumors -- Galinda and her as unnamed but equally wicked twin -- I STILL HAVE FREAKIN' CUSHING'S DISEASE.
Since I've been terrible at keeping this blog up-to-date, let me take you way back for a recap: after suffering for nine years with a whole slew of Cushing's symptoms, I was finally diagnosed with pituitary based Cushing's one year ago, almost exactly. My first pituitary surgery was in November of last year and, sadly, it failed for a cure. I was re-diagnosed a few months later and my post-op MRI showed a second tumor that had been missed the first time around. I was quickly sent off for a second surgery. Unfortunately it also failed for a cure. These past few months, since the second surgery, it was back to the same old Cushie testing extravaganza: peeing in jugs, FedExing vials of my spit to a lab in California, an MRI, etc. Once my re-diagnosis was double triple quadruple confirmed, the next step was far less pleasant: choosing a course of treatment with which to proceed.
It's hard for me to describe how difficult a decision it was. The best I think I can do is to have you understand that I spent two months near continuously thinking about it (no really). Strangely, it was the first time in my experience with Cushing's treatment that the next course of action was unclear. That's not to say that I didn't have options to chew on going into the 1st and 2nd round of pituitary surgery, but just that they were rather limited. Everyone involved in my care-- my medical team, my husband, myself-- believed that a 1st and repeat pituitary surgery were really the only reasonable courses of action given my the specifics of my case (mainly in terms of MRI findings). My options were more along the lines of: what should I wear to meet my surgeon? Should I braid my hair or put it in a bun? Not at all like the most recent decision, which included whether or not to proceed with a third pituitary surgery at all. (The braid or bun decision, btw, is one I make every day. It's just how a wear my hair, not some fancy impressive meet-your-surgeon hairstyles.)
The long and the short of it is that I've decided to have a 3rd pituitary surgery, scheduled for September 24th (!), so feel free to stop reading now; just leave me a little good luck message in the comments section. If, however, you're insane and/or a major Cushing's nerd (a term I just coined, btw, to describe people, like myself, who stay up into the wee hours of most nights trudging through research papers for the latest greatest on pituitary adenomas and cyclical hypercortisolism) and/or not entirely sick of hearing me talk about Cushing's, in which case, read on, my friend, read on :)
I was faced with three reasonable options to choose from: 1) radiation 2) a bilateral adrenalectomy or 3) a 3rd pituitary surgery.
The first option, radiation therapy, would involve blasting my pituitary gland with a few good doses of radiation, in hopes of killing all remaining ACTH secreting tumor cells and it was, honestly, not something I seriously considered. It's not that I have the seemingly common knee jerk reaction that radiation is bad (I don't), but, given the particulars of my case, I didn't seem quite right. When targeting pituitary adenomas, radiation has a reputation for causing collateral damage to the pituitary gland, leaving the patient hypopituitary. Hypopituitarism simply means that the pituitary gland is damaged and thus unable to produce one or more of it's hormones in sufficient quantities. It's managed by lifelong supplementation of the missing hormones. While pituitary surgery can also lead to hypopituitarism, by some stroke of cosmic luck, I have not become hypopit from my surgeries. And, as you might imagine, I'd very much like to keep it that way -- not a cell short of proper pituitary function. Also, since my most recent MRI does not show one single clear area on the pituitary where the residual tumor is located (instead there are several areas that are suspicious for tumor), I'd have to have my entire gland blasted, which would almost certainly leave it severely damaged. And finally, in case you're not already convinced: the cure rate is not particularly high -- I was quoted less than 50% for a case like mine -- and even when it does work to kill ACTH tumor cells, it often takes months or years for it to take full effect and, thus, for the patient's symptoms to resolve.
So, because radiation did not seem like a particularly good idea in my case, it really came down to a 3rd pituitary surgery or an adrenalectomy. This, my friend, is the real decision I've been agonizing over for the past few months.
A bilateral adrenalectomy, which we cushies affectionately refer to as a BLA and I for the longest time I thought stood for Byebye Lame Adrenals (not really), is the complete removal of both adrenal glands. Sounds kinda fancy eh? It is! And for the vast majority of patients, it's a cure for Cushing's. The beast is slain. Unfortunately, there is one major downside: you won't have adrenals. Funny that! It's all perspective I suppose. No more adrenals: whooohooooo, no more high cortisol screwing with every facet of your body. Yay! But on the other hand, no more adrenals: boooooooo! :( Your body thus loses its ability to synthesize adrenal hormones and you are left supplementing them for the rest of your life. Some people like to think of it as trading a horrible uncontrollable disease for a controllable one. Cushing's for Addisons. Then there's the not-so-fun fact that even a BLA is not a 100% guaranteed cure: the teeniest piece of rest tissue can continue to pump out and overload your body with cortisol. Fortunately, rest tissue is rare. I've heard the cure rate for BLA quoted as 90 - 99%. I think 95% would be a pretty safe bet.
The last choice, and the one that I ultimately made, was to have a 3rd pituitary surgery. The idea is that my surgeon will locate and resect all residual tumor. As for why I chose this route: the upside is very up. I could be cured! I could be cured and get to live my live as if Cushing's never happened (hormonally speaking, I mean). By that I simply mean that I could go on to live, post-Cushing's, without having to supplement adrenal hormones, like would be necessary with a BLA. Sounds great, eh? I know! Unfortunately there are downsides. The main one is the very real possibility that it won't cure me. 50/50 are my odds. Not bad, but certainly not anywhere near as glorious as the odds of a successful BLA. The other downside, and the one that had me really questioning whether a 3rd pituitary surgery was a good course of action for me, is that, as with radiation, I could lose pituitary function and become hypopituitary. Every time chunks of gland are taken from my pituitary, this is a real risk. I'm fortunate, in fact, to have intact pituitary function this late in the game.
So that's the long and the short of it. In many ways a 3rd pituitary surgery seems most risky to me: it's my last chance to be truly cured, no strings attached; but the worst-case scenario is also a distinct possibility: that being that I don't get a cure from the pituitary surgery, become hypopituitary, and then end up with a BLA. I'd end up having to supplement both pituitary and adrenal hormones for the rest of my life. It would suck, for sure. But, it turns out, it's a risk I'm willing to take in shooting for the jackpot reward of getting cured, without having to lose my adrenals. At this point, I feel lucky to even have a chance for such a good outcome and that, to me, makes it worth the shot.
Is it the right choice? I have no clue. There really is no easy or obvious answer with this stuff; no right choice. I've come a long way in my fight against this crazy disease and just need to continue trudging forward, making the best decisions I can with the information I have, in pursuit of a cure. One way or another, I know I will get there. And I do think this 3rd surgery will be it. My surgeon (a new one) and endocrinologist are off the charts crazy amazing awesome awesome awesome. I feel so blessed on that front. I could not be in better hands.
On a lighter note, when asked if he thought I'd made the right choice, David refused to answer because, he claimed, to do my thought processes justice, he'd have to think about it for, ohhhhhh, two months straight.
I probably did over think it. But only a little :)
*Sigh* In case I'm overusing the dumping metaphor and/or you have no idea what the crap I'm talking about, let me put it bluntly: I still have Cushing's. After two surgeries and the removal of two tumors -- Galinda and her as unnamed but equally wicked twin -- I STILL HAVE FREAKIN' CUSHING'S DISEASE.
Since I've been terrible at keeping this blog up-to-date, let me take you way back for a recap: after suffering for nine years with a whole slew of Cushing's symptoms, I was finally diagnosed with pituitary based Cushing's one year ago, almost exactly. My first pituitary surgery was in November of last year and, sadly, it failed for a cure. I was re-diagnosed a few months later and my post-op MRI showed a second tumor that had been missed the first time around. I was quickly sent off for a second surgery. Unfortunately it also failed for a cure. These past few months, since the second surgery, it was back to the same old Cushie testing extravaganza: peeing in jugs, FedExing vials of my spit to a lab in California, an MRI, etc. Once my re-diagnosis was double triple quadruple confirmed, the next step was far less pleasant: choosing a course of treatment with which to proceed.
It's hard for me to describe how difficult a decision it was. The best I think I can do is to have you understand that I spent two months near continuously thinking about it (no really). Strangely, it was the first time in my experience with Cushing's treatment that the next course of action was unclear. That's not to say that I didn't have options to chew on going into the 1st and 2nd round of pituitary surgery, but just that they were rather limited. Everyone involved in my care-- my medical team, my husband, myself-- believed that a 1st and repeat pituitary surgery were really the only reasonable courses of action given my the specifics of my case (mainly in terms of MRI findings). My options were more along the lines of: what should I wear to meet my surgeon? Should I braid my hair or put it in a bun? Not at all like the most recent decision, which included whether or not to proceed with a third pituitary surgery at all. (The braid or bun decision, btw, is one I make every day. It's just how a wear my hair, not some fancy impressive meet-your-surgeon hairstyles.)
The long and the short of it is that I've decided to have a 3rd pituitary surgery, scheduled for September 24th (!), so feel free to stop reading now; just leave me a little good luck message in the comments section. If, however, you're insane and/or a major Cushing's nerd (a term I just coined, btw, to describe people, like myself, who stay up into the wee hours of most nights trudging through research papers for the latest greatest on pituitary adenomas and cyclical hypercortisolism) and/or not entirely sick of hearing me talk about Cushing's, in which case, read on, my friend, read on :)
I was faced with three reasonable options to choose from: 1) radiation 2) a bilateral adrenalectomy or 3) a 3rd pituitary surgery.
The first option, radiation therapy, would involve blasting my pituitary gland with a few good doses of radiation, in hopes of killing all remaining ACTH secreting tumor cells and it was, honestly, not something I seriously considered. It's not that I have the seemingly common knee jerk reaction that radiation is bad (I don't), but, given the particulars of my case, I didn't seem quite right. When targeting pituitary adenomas, radiation has a reputation for causing collateral damage to the pituitary gland, leaving the patient hypopituitary. Hypopituitarism simply means that the pituitary gland is damaged and thus unable to produce one or more of it's hormones in sufficient quantities. It's managed by lifelong supplementation of the missing hormones. While pituitary surgery can also lead to hypopituitarism, by some stroke of cosmic luck, I have not become hypopit from my surgeries. And, as you might imagine, I'd very much like to keep it that way -- not a cell short of proper pituitary function. Also, since my most recent MRI does not show one single clear area on the pituitary where the residual tumor is located (instead there are several areas that are suspicious for tumor), I'd have to have my entire gland blasted, which would almost certainly leave it severely damaged. And finally, in case you're not already convinced: the cure rate is not particularly high -- I was quoted less than 50% for a case like mine -- and even when it does work to kill ACTH tumor cells, it often takes months or years for it to take full effect and, thus, for the patient's symptoms to resolve.
So, because radiation did not seem like a particularly good idea in my case, it really came down to a 3rd pituitary surgery or an adrenalectomy. This, my friend, is the real decision I've been agonizing over for the past few months.
A bilateral adrenalectomy, which we cushies affectionately refer to as a BLA and I for the longest time I thought stood for Byebye Lame Adrenals (not really), is the complete removal of both adrenal glands. Sounds kinda fancy eh? It is! And for the vast majority of patients, it's a cure for Cushing's. The beast is slain. Unfortunately, there is one major downside: you won't have adrenals. Funny that! It's all perspective I suppose. No more adrenals: whooohooooo, no more high cortisol screwing with every facet of your body. Yay! But on the other hand, no more adrenals: boooooooo! :( Your body thus loses its ability to synthesize adrenal hormones and you are left supplementing them for the rest of your life. Some people like to think of it as trading a horrible uncontrollable disease for a controllable one. Cushing's for Addisons. Then there's the not-so-fun fact that even a BLA is not a 100% guaranteed cure: the teeniest piece of rest tissue can continue to pump out and overload your body with cortisol. Fortunately, rest tissue is rare. I've heard the cure rate for BLA quoted as 90 - 99%. I think 95% would be a pretty safe bet.
The last choice, and the one that I ultimately made, was to have a 3rd pituitary surgery. The idea is that my surgeon will locate and resect all residual tumor. As for why I chose this route: the upside is very up. I could be cured! I could be cured and get to live my live as if Cushing's never happened (hormonally speaking, I mean). By that I simply mean that I could go on to live, post-Cushing's, without having to supplement adrenal hormones, like would be necessary with a BLA. Sounds great, eh? I know! Unfortunately there are downsides. The main one is the very real possibility that it won't cure me. 50/50 are my odds. Not bad, but certainly not anywhere near as glorious as the odds of a successful BLA. The other downside, and the one that had me really questioning whether a 3rd pituitary surgery was a good course of action for me, is that, as with radiation, I could lose pituitary function and become hypopituitary. Every time chunks of gland are taken from my pituitary, this is a real risk. I'm fortunate, in fact, to have intact pituitary function this late in the game.
So that's the long and the short of it. In many ways a 3rd pituitary surgery seems most risky to me: it's my last chance to be truly cured, no strings attached; but the worst-case scenario is also a distinct possibility: that being that I don't get a cure from the pituitary surgery, become hypopituitary, and then end up with a BLA. I'd end up having to supplement both pituitary and adrenal hormones for the rest of my life. It would suck, for sure. But, it turns out, it's a risk I'm willing to take in shooting for the jackpot reward of getting cured, without having to lose my adrenals. At this point, I feel lucky to even have a chance for such a good outcome and that, to me, makes it worth the shot.
Is it the right choice? I have no clue. There really is no easy or obvious answer with this stuff; no right choice. I've come a long way in my fight against this crazy disease and just need to continue trudging forward, making the best decisions I can with the information I have, in pursuit of a cure. One way or another, I know I will get there. And I do think this 3rd surgery will be it. My surgeon (a new one) and endocrinologist are off the charts crazy amazing awesome awesome awesome. I feel so blessed on that front. I could not be in better hands.
On a lighter note, when asked if he thought I'd made the right choice, David refused to answer because, he claimed, to do my thought processes justice, he'd have to think about it for, ohhhhhh, two months straight.
I probably did over think it. But only a little :)
Friday, March 12, 2010
An Update from the Gland of Oz
After a 4 month hiatus, I finally have a few minutes to share a long overdue health update. Not so coincidentally, four months ago was right about the time of my first pituitary surgery. Yep, that's right, my *first* pit surgery. As Eli would say: what the?!??
Let me take you back for a quick recap. The aforementioned first surgery was a smashing success... sort of. My awesome surgeon found and removed Galinda, the wicked witch of the right side of the gland (to those of you who think of Galinda as the good witch, shame on you!) Unfortunately, it failed to cure my Cushing's. I know! Major Suckage! A big surprise came with the results of my post-operative MRI. It showed the right side of my gland looking clear and Galinda free. BUT... a never before seen tumor showed up all the way on the other side of the gland of Oz. Sooooooo. I flew to back to LA last weekend and had the itty bitty bugger removed Tuesday. Yep, three days ago! It's all happened so fast; I haven't even had a chance to name it. Please help! I'm not stuck on continuing the Wicked theme (though I'm certainly open to the idea) and am accepting any and all suggestions.
I am, by the way, doing well, recovering nicely from the surgery and have no inkling as to whether or not I'm cured. And I don't much care to speculate. Those of you who have been through this know how easy it is to obsess over every little change in your symptoms (or lack thereof). OMG, I totally just sneezed, like, REALLY loud! I haven't sneezed like that in years! I must be cured!
Okay so I exaggerate a bit, but you get the idea. Only time will tell.
Sunday, January 31, 2010
No, I'm not referring to the Ultimate Fighting Championship
Today I am collecting what I'm pretty sure is my 15th ever UFC. The non-cushies among you probably have no idea what I'm talking about. To those who do: wink wink giggle giggle high five!
Health update coming soon...
Health update coming soon...
Friday, January 22, 2010
Misdiagnoses! My Seven Best
It's some sort of crazy cushie rite of passage: over the years, as we bounce from doctor to doctor, most every Cushing's patient accrues more than his or her fair share of misdiagnoses. Makes sense, really. Cushing's is rare (though, arguably, not as rare as most doctors claim) and because it presents with such a dazzling array of seemingly unrelated symptoms, doctors account for them by slapping us with relatively common ailments. It must be PCOS. No, fibromyalgia... that's gotta be it! Diabetes! Chronic fatigue syndrome! Migraines! Hypertension! Thyroid!
I don't mean to insinuate that these diseases aren't perfectly real (they are!) and/or that they can't occur in conjunction with Cushings (they can and do!). But, for those of us who are eventually diagnosed with Cushing's, these earlier diagnoses often turn out to be symptoms as opposed to stand alone diseases, and nearly as often turn out to be... well... just plain wrong. In my search for answers, I got all kinds of kooky suggestions, ideas, suspicions and other misguided attempts to explain my symptoms from doctors and other health professionals. Here are seven of the most memorable:
1. "You exercise too much!" Yup, I actually had one doctor chalk my symptoms up to overexercising. He noticed I was carrying my bicycle helmet and said something like "You like to ride your bike, eh? Do you exercise much otherwise?" When he learned that I exercised 2 - 6+ hours every day (jogging daily, biking everywhere, dancing from midnight to six am... that sort of thing), he explained that vigorous exercise actually causes people to gain weight. I kid you not. A real live doctor said this! He also alleged that it accounted for my many other symptoms, but when asked to explain, he changed the subject and advised me to stop biking altogether, because, he claimed, in addition to the whole making you sick and gain weight thing, bicycling in the big city was terribly dangerous. I left his office, got on my bike, rode home, and found a new doctor.
2. "Your Chi is allllll fucked up!" My acupuncturist in SF, who was fabulous and funny, talked a whole lot about Chi and how incredibly out of whack mine was. Though she never actually used the words "allllll fucked up," this is David's interpretation of her diagnosis :) And frankly, it probably wasn't a misdiagnosis at all. Thanks to a certain hormone secreting tumor that disrupts every body system, I'm sure my Chi was alllllllll fucked up.
3. "Tell me more about your mother..." This, unfortunately, is a common occurrence for not-yet-diagnosed Cushing's patients: poo-head doctors claim that it's all in our heads. Because western medicine up to that point can't explain our symptoms, they assume that we must have some deep-seated psychological problem that's making us "sick." This only happened to me once, thank goodness... it was more than enough. It's incredibly unsettling to have a doctor tell you that you're not really sick, when you know, without a doubt, that there's something terribly wrong. Anyhoo, when this dude found out that I had what he called "a notable psychological history" (my mom was mentally ill most of her adult life), he decided that it had to be the root of my problems. He spent about an hour asking about my childhood and my mother's illness while completely ignoring my illness. He asked me all kinds of leading questions, like "do you sometimes feel so frustrated that you feel like you want to hurt yourself?" (ummm... NO!) and "Well, surely, after such a traumatic childhood, you must feel extremely angry to have all those years stolen from you." (Again: umm, no. Not really at all, actually). I, BTW, didn't tell him that my childhood was traumatic (it wasn't), instead, that was his interpretation based on knowing that I grew up with a mother who was mentally ill and that I was now inexplicably ill. The dude was a pompous jerk. Unfortunately, I can't say his name or even the clinic he's from (he's from a very well know clinic and this could be construed as slander or some shit, right?). But I can say this: he was right about one thing, it was all in my head -- in my freakin' pituitary gland, you freakin' ASSHOLE.
4. "Have you had your thyroid checked?" Dear lord, yes. Yes yes yessssssss. So. Many. Times. Some Cushing's patients have thyroid problems in addition to... well... Cushing's. Not me. My thyroid is fine. Downright spectacular even. But because thyroid problems are far more common than Cushing's and many of the symptoms overlap, doctors are much quicker to think thyroid! than they are pituitary tumor! Just for shits and giggles, I went through records to see how many times I've had my thyroid levels checked over the years. 13. Yup, 13 separate times over the course of 9 years. If only those tests had been aimed at checking my cortisol levels... sigh.
5. "You have chronic diarrhea because you're vegetarian. It's actually a good sign that you eat plenty of fiber!" Nuff said.
6. "I don't think it's fibromyalgia, but why not try these pills and see if they help!" This doctor ruled out fibromyalgia, but wanted to treat me for it anyways... ?!? He preformed some weird test, which basically involved pressing on me a whole lot...
Doc: Does this hurt? Me: No.
Doc: Does this? Me: No
Doc: How 'bout this? Me: Umm... no?
Doc: This? Me: No
This went on for quite some time and then he said something like: "We'll, it's definitely not fibromyalgia! Haha." But then a few minutes later: "Why not try this medication for it anyways and see if it helps? It's also an antidepressant, so it'll make you feel real good!" Nice.
7. "Super DJ Acid Fingers!" Okay, so this one doesn't qualify as having come from a medical professional on account of it being a self-diagnosis, but still... it's awesome. In my early years of Cushing's, I experienced all kinds of whacked out skin changes, one of which being that the tips of my fingers became extremely dry and cracked and painful and nasty. My old friends, I'm sure, remember the stunning rainbow of bandaids on my finger tips. I was taking several chemistry lab classes at the time, which involved experimentation with acids and because I wasn't much of a glove wearer (you know: young and invincible), I often spilled little bits of it on my fingers. I assumed that the fucked up fingertips were a result of the acid, which earned me the nickname "acid fingers." I couldn't figure out why my fingers never healed after I started wearing gloves and then even when I refused to work with acid altogether. My doctor said there was no way that the acid was causing my skin problems. I didn't believe him at the time, but hey, turns out one of my doctors was right about something! Yay!
We'll, that's all I've got for now. I'd love to hear from other cushies... what were your best misdiagnoses over the years?
I don't mean to insinuate that these diseases aren't perfectly real (they are!) and/or that they can't occur in conjunction with Cushings (they can and do!). But, for those of us who are eventually diagnosed with Cushing's, these earlier diagnoses often turn out to be symptoms as opposed to stand alone diseases, and nearly as often turn out to be... well... just plain wrong. In my search for answers, I got all kinds of kooky suggestions, ideas, suspicions and other misguided attempts to explain my symptoms from doctors and other health professionals. Here are seven of the most memorable:
1. "You exercise too much!" Yup, I actually had one doctor chalk my symptoms up to overexercising. He noticed I was carrying my bicycle helmet and said something like "You like to ride your bike, eh? Do you exercise much otherwise?" When he learned that I exercised 2 - 6+ hours every day (jogging daily, biking everywhere, dancing from midnight to six am... that sort of thing), he explained that vigorous exercise actually causes people to gain weight. I kid you not. A real live doctor said this! He also alleged that it accounted for my many other symptoms, but when asked to explain, he changed the subject and advised me to stop biking altogether, because, he claimed, in addition to the whole making you sick and gain weight thing, bicycling in the big city was terribly dangerous. I left his office, got on my bike, rode home, and found a new doctor.
2. "Your Chi is allllll fucked up!" My acupuncturist in SF, who was fabulous and funny, talked a whole lot about Chi and how incredibly out of whack mine was. Though she never actually used the words "allllll fucked up," this is David's interpretation of her diagnosis :) And frankly, it probably wasn't a misdiagnosis at all. Thanks to a certain hormone secreting tumor that disrupts every body system, I'm sure my Chi was alllllllll fucked up.
3. "Tell me more about your mother..." This, unfortunately, is a common occurrence for not-yet-diagnosed Cushing's patients: poo-head doctors claim that it's all in our heads. Because western medicine up to that point can't explain our symptoms, they assume that we must have some deep-seated psychological problem that's making us "sick." This only happened to me once, thank goodness... it was more than enough. It's incredibly unsettling to have a doctor tell you that you're not really sick, when you know, without a doubt, that there's something terribly wrong. Anyhoo, when this dude found out that I had what he called "a notable psychological history" (my mom was mentally ill most of her adult life), he decided that it had to be the root of my problems. He spent about an hour asking about my childhood and my mother's illness while completely ignoring my illness. He asked me all kinds of leading questions, like "do you sometimes feel so frustrated that you feel like you want to hurt yourself?" (ummm... NO!) and "Well, surely, after such a traumatic childhood, you must feel extremely angry to have all those years stolen from you." (Again: umm, no. Not really at all, actually). I, BTW, didn't tell him that my childhood was traumatic (it wasn't), instead, that was his interpretation based on knowing that I grew up with a mother who was mentally ill and that I was now inexplicably ill. The dude was a pompous jerk. Unfortunately, I can't say his name or even the clinic he's from (he's from a very well know clinic and this could be construed as slander or some shit, right?). But I can say this: he was right about one thing, it was all in my head -- in my freakin' pituitary gland, you freakin' ASSHOLE.
4. "Have you had your thyroid checked?" Dear lord, yes. Yes yes yessssssss. So. Many. Times. Some Cushing's patients have thyroid problems in addition to... well... Cushing's. Not me. My thyroid is fine. Downright spectacular even. But because thyroid problems are far more common than Cushing's and many of the symptoms overlap, doctors are much quicker to think thyroid! than they are pituitary tumor! Just for shits and giggles, I went through records to see how many times I've had my thyroid levels checked over the years. 13. Yup, 13 separate times over the course of 9 years. If only those tests had been aimed at checking my cortisol levels... sigh.
5. "You have chronic diarrhea because you're vegetarian. It's actually a good sign that you eat plenty of fiber!" Nuff said.
6. "I don't think it's fibromyalgia, but why not try these pills and see if they help!" This doctor ruled out fibromyalgia, but wanted to treat me for it anyways... ?!? He preformed some weird test, which basically involved pressing on me a whole lot...
Doc: Does this hurt? Me: No.
Doc: Does this? Me: No
Doc: How 'bout this? Me: Umm... no?
Doc: This? Me: No
This went on for quite some time and then he said something like: "We'll, it's definitely not fibromyalgia! Haha." But then a few minutes later: "Why not try this medication for it anyways and see if it helps? It's also an antidepressant, so it'll make you feel real good!" Nice.
7. "Super DJ Acid Fingers!" Okay, so this one doesn't qualify as having come from a medical professional on account of it being a self-diagnosis, but still... it's awesome. In my early years of Cushing's, I experienced all kinds of whacked out skin changes, one of which being that the tips of my fingers became extremely dry and cracked and painful and nasty. My old friends, I'm sure, remember the stunning rainbow of bandaids on my finger tips. I was taking several chemistry lab classes at the time, which involved experimentation with acids and because I wasn't much of a glove wearer (you know: young and invincible), I often spilled little bits of it on my fingers. I assumed that the fucked up fingertips were a result of the acid, which earned me the nickname "acid fingers." I couldn't figure out why my fingers never healed after I started wearing gloves and then even when I refused to work with acid altogether. My doctor said there was no way that the acid was causing my skin problems. I didn't believe him at the time, but hey, turns out one of my doctors was right about something! Yay!
We'll, that's all I've got for now. I'd love to hear from other cushies... what were your best misdiagnoses over the years?
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