Pincushion Time!

Well, I had my first appointment with my endocrinologist. I like him pretty well, which is good, because I have this feeling I'm going to get to know him real well.

He had some good-natured grumbling about how early I was showing up - I.e. most patients don't show up in his office until they have unmistakeable symptoms. Contrariwise, I'm so early that most symptoms are equivocal - tight judgement calls about what's going on. My fingers have gotten bigger - is it bone growth (definite acromegaly), or soft-tissue growth (could be acromegaly, Cushing's, or something else). Likewise for pretty much every other symptom. Dad's firmly of the opinion it's acromegaly, but Dr. Williams has to show some concrete evidence for a diagnosis - and he doesn't have a baseline of what my face and hands looked like ten years ago.

This is actually a pretty common problem in the specialties. Doctors don't see their patients until they're already sick, so they don't know what "normal" looks like for this particular patient. A friend of mine from when we lived in Iowa had this problem big-time. After some heavy (near toxic level) treatments for a neurological disorder, she noticed that her school performance had dropped dramatically - from A's at a private college, to struggling for C's and B's at a community college. Her neurologist tested her, and she tested out normal, yet she was plainly not normal for her. The lack of a baseline meant that the neurologist couldn't tell what had changed. This is pretty much what's going on with me. My hands aren't outsized beyond the norm (though they are large), my face looks like an ordinary face. Nobody has any objective measurements of what my face and hands and skin condition were like a decade ago to compare to. At best I can pull out some photos from my wedding to compare - and even then it's a case of "is it bone growth or soft tissue swelling?"

The first blood panel shows normal GH, borderline cortisol, and high TSH. Since one normal GH draw means about squat, we're working from ground zero to find out what's going on with my hormones. I had a second panel drawn Monday. Tuesday I had an elimination test for Cushing's. I should get results back from those on Friday or next Monday. Then if the Cushing's is negative, we proceed with the tests for acromegaly. If the Cushing's test isn't negative, then we proceed with the positive tests for Cushing's. (The negative test means: if it's negative, I don't have Cushing's, but if it's positive, I might or might not have Cushing's) In and around all this, we'll be chasing the high TSH levels as well, and trying to figure out what they mean.

I've been deemed "interesting". I could really have lived my life without becoming interesting to an endocrinologist.

Tanks a Lot

I mentioned before that Rob had gotten himself a new 75-gallon tank. Now that we have three good-sized tanks (plus three bettas in bowls), I thought I'd show you some of the denizens.

First we have Aaron's tank. Aaron likes peaceful community fish, though he doesn't always get them - his Dad's preference for more active fish means that some of his verge into semi-aggressive, and very small fish (like young neon tetras) have been known to simply vanish, even though we don't have fish fights. Aaron's tank is currently suffering an outbreak of fin-rot, which has absolutely trashed his poor swordtail, as well as killing off his peacock eel (pictured above) We're treating and doing heavy water changes hoping to save the swordtail, and keep it from spreading further. With any luck the eel will be the only casualty.

Rob's and my tanks have quite different characters. I'm having some trouble getting more than one picture to come up per post, though, so I'll discuss those tanks, and show some pictures of those in a later post.

We Have an Endocrinologist

First off - since I said I'd start adding images to my posts, meet Dad:

And we may have a surgeon - though that remains to be seen.

The endocrinologist is Dr. Fred Williams. His office is fairly close - about ten minutes down the highway in downtown Louisville, and he comes well recommended by my OB. I have an appointment in a week on Monday. Day after tomorrow I get to fax permission to the doctors in Mississippi to send my records up here, which feels kind of weird when one of them is my Dad. I can see why having your relatives be your attending physician is so frowned upon. Other issues entirely aside, the legal stuff is weird. With Dad as my referring physician on the MRI (the only way we could work out the registration issues, even though the neuro-opthamologist requested it), suddenly he legally wasn't allowed to discuss my medical stuff with anybody outside the hospital staff without my written permission - this included my mother, brothers, children, etc., etc.. Very strange.

The possible surgeon is in Boston at Mass General. I haven't contacted them at all yet (I'll do that this week, just to get information), but they have a Neuroendocrinology Clinic with three on-staff neurosurgeons, two of whom list pituitary surgery as a specialty, and one of whom has several published articles on acromegaly. As a big bonus I have great infrastructure in the Boston area. Virtually every friend I have kept in contact with from college lives near there. A in W. Newton (about 15 minutes out), L. in Worcester (1 hour), and B&B both live within the half-day range. Plus A has friends and family in scads, who know me and are kindly inclined towards me. The boys could easily stay with her (Actually, I think she'll be hurt if they don't), so they'll be close, but not directly involved with all the scary medical stuff. Plus she has the room so that other than a night before, Rob & I wouldn't have to stay at a hotel.

Frankly, if I end up having somebody poking in my brain, it's really nice to find someplace to go where I'm not going to have to worry about the logistics and support. Where somebody I trust completely is going to have charge of my kids, without having to have them halfway across the country, or leaving them behind while I go away. This way Daddy can be right there, but can still be with me as much as I'm likely to need him to be.

I suspect Mom and/or Dad are likely to come up as well, but again, this way they can be with the boys, or with me as they need to, rather than being tied to watching to nervous little boys.

Visit to Becky & Update

As promised, I wanted to talk about the visit that Aaron & I made to Becky just before New Years. Becky lives about a ninety minute drive from my parents (as opposed to a nine hour drive from me), so we decided to meet for the first time when I came down with Rob & the kids to spend New Years with my parents.

Becky and I met each other through the Isshinryu Women's Yahoo group. When she posted her blog link and I wandered over, I discovered that not only did she practice Isshinryu, but that she knitted, spun, read SF & fantasy, and kept snakes! Our hobby lists read like we developed them together - except for the snakes, but given Aaron's feelings about reptiles (evident above), snakes were a plus too. The snake Aaron is holding is Snow, a snow cornsnake. Becky allowed him to handle all but two of her snakes, and he was in seventh heaven. She has more photos of the visit here , but I couldn't resist stealing this one, the look on Aaron's face is so priceless.

We had originally planned for me to come up around noon, but that didn't happen. Instead Dad woke me up around eight with a phonecall to tell me he had asked a colleague (a neuro-opthamalogist) to work me into his morning schedule, and would I please get myself down to the hospital? This turned into a full morning of being tested: field of vision, color, point of focus - whole slews of things I've never had done before. Weirdly enough, given that I've been nearsighted my whole life, my distance vision is apparently better than my near vision now. Nice to know that the RK is still doing what it's supposed to do.

About noon, I thought I had been kicked free, but then got called back because the UMC computer was throwing fits about registering me for the MRI - it couldn't deal with a patient seeing a doctor first, and then getting registered. Eventually we had to give up on registering me under Dr. Parker, re-register me with Dad as the referring physician, and then schedule the MRI. By the time we got that straightened out it was nearly 2:30. Becky was an incredibly good sport about having me call repeatedly and move my visit further and further back each time. Eventually I did get away, packed Aaron in the car (Robbie changed his mind about six times before deciding to stay with Granny), and off we went.

Becky gave good directions, so we had no trouble finding her - having Cody standing out by the mailbox in his football jersey was a help too. He looks exactly like the photos on Becky's blog. I (just like Becky apparently) was a bit nervous about meeting her in person for the first time. What if we were disappointed in each other? I needn't have worried. Aaron started right off asking to see the snakes, and by the time we finished with that we were going on like we'd known each other forever. I got to hold Monty, Becky's younger ball python, who promptly demonstrated why they're called ball pythons, by curling up in a tight little knot. He calmed down after a minute or two, and was pretty quickly exploring just who this new person was. Never having handled snakes before, I was surprised by how curious and interactive they were. Aaron was delighted, but managed to contain himself and listen to Becky explain how to handle the snakes properly. I suspect we will be ending up with snakes ourselves in a few years, when he is old enough, and I find I'm rather looking forward to it.

After the snakes we went out to dinner, and then to the dojo. Becky showed me the re-breakable boards, which were interesting. She broke the yellow board, holding it in one hand, which was impressive. I tried it afterwards, and got it on the second try, but only with Becky holding it for me properly! Those things are tough. Cody and Becky both played Aaron at air-hockey, which he'd never seen before, and enjoyed a lot, and then Becky and I compared Seisan katas. Hers is a lot different from mine. They're unmistakeably the same kata, but many of the details are quite different, especially towards the end. I would dearly love to get a chance to go through all of them (at least that I know), but there just wasn't time that night. Oh well, by the next time I go down I should know one or two more, so the time won't be wasted.

After the dojo we went back to Becky's, where Aaron got to handle Sunset again. Becky gave him a snakeskin of his own to take home, and he's very proud of it. Then Cody, who's a member of an astonishingly good marching band, gave us a good-bye tune on his tuba. Aaron was asleep before we even got properly onto the highway, curled up with his snakeskin and the Pokemon cards Cody gave him. The whole visit was wonderful, definitely the high spot of what was otherwise a pretty difficult holiday. Thanks Becky for showing us such a good time!

Tumor update: All the recent news has been good. My fasting GH levels are normal (though cortisol is borderline, oddly enough). GH levels flux throughout the day, one of the things that makes acromegaly hard to diagnose until well progressed. If I'm understanding correctly, I'll probably have a glucose-challenge done next. The tumor itself measures about 2mm, and is low and central in the anterior pituitary, pretty much ideally located for surgery, if that's the route we take. I have my first appointment with an endocrinologist on Monday, Jan. 22nd, so things are pretty much on hold until then. I seem to be adjusting to the new way of things. I haven't had any serious flashes of terror in a couple of days now, though I'm still moodier than usual. I expect I'll get a little more nervous as the endocrinology appointment looms, but at least for now I'm doing pretty well. If I ever needed proof that I have wonderful friends, this last week has been it, as they put up with my obsessive behavior over acromegaly, and keep me sane when I'm trying to fly to pieces. Thanks guys!

Benign

Benign - the non-medical definition: pleasant and beneficial in nature or influence; "a benign smile"; "the benign sky"; "the benign influence of pure air"

The medical definition: Benign is any condition which, untreated or with symptomatic therapy, will not become life-threatening. It is used in particular in relation to tumors, which may be benign or malignant. Benign tumors do not invade surrounding tissues and do not metastasize to other parts of the body. The word is slightly imprecise, as some benign tumors can, due to mass effect, cause life-threatening complications. The term therefore applies mainly to their biological behaviour.

Notice that "pleasant and beneficial" is decidedly not part of the medical definition.



(This is an image from the MRI I had January 2nd. The bright section just in front of the center mass is the pituitary.)

As you might gather from the above, I've had a very interesting winter vacation. It included some wonderful things - like a visit to Becky, which she has written about, and I will write about later. However, it was dominated by discovering how big the difference between "not malignant" and "not harmful" is.

I have a benign pituitary tumor called an adenoma. Pituitary adenomas can do any of a whole slew of things. They can produce nothing (in which case their possesors frequently never find out about them), or they can produce any of the half-dozen plus hormones that the pituitary produces. Mine is producing growth hormone, which causes a syndrome called acromegaly. Hands and feet, forehead and chin all grow. Skin is thick and oily (and prone to breakouts, apparently). Weight gain is common. If the tumor starts before final growth is achieved, then the person with acromegaly will get taller too. If the tumor itself grows too much, it will start to interfere with the structures around it, most notably the optic nerves which run right in front of the pituitary. In long term untreated acromegaly, the facial distortion becomes distinct (The actor who played Lurch had acromegaly), diabetes, heart disease, carpal tunnel syndrome, and arthritis.

So benign or not, the adenoma has to be dealt with. There are drugs which can be used to treat adenomas. Unfortunately they don't work very well on tumors that produce growth hormone for some reason. They can suppress the effects of the excess hormone, but they generally don't shrink the tumor. Also they're rather hideously expensive ($1000 - $10,000 per month). So the most likely route is surgery. As brain surgery goes, it's fairly minor. As brain surgery goes...

This has been a pretty clinical entry, I'm afraid. Mostly I'm dealing with this right now by being very clinical, and very goal oriented: finding an endocrinologist, researching acromegaly, looking at on-line information about the surgery. As long as I do that stuff, I don't fall apart in terror at the idea of somebody poking around in my head. The terror comes in short bolts at unexpected times. Like yesterday evening at karate when I talked with K, the doctor who's going to be acting as my PCP for this and was fine, but when I talked to Sensei, I fell apart. I cried on him for several minutes before I was able to be coherent enough to tell him what was going on. Tonight at karate I was fine.

Apparently this is about par for the course, and I'm not actually losing my mind - it just feels like it.