Friday, January 05, 2007

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.

9 comments:

Becky said...

When you were here, we talked about you putting more pictures up on your blog. You started out with a doozy! Good luck with whatever treatment you choose. We'll keep you in our prayers.

Anonymous said...

So, is the pituitary the bit surrounded by the sort of roundish box of light? It's right on the center line, right, behind the nose?
Is there any way to label the MRI scan on here?

Anonymous said...

That was me, Ledasmom, the anonymous commenter, by the way; I can't remember if I have a Blogger identity or not.
Technically, you are supposed to be losing part of your mind - or your brain, at least. A very very tiny part.

PerpetualBeginner said...

I believe the pituitary is the back part of the box of light - the sort of arch just in front of the spinal cord. The front part of the box is the optic chiasm.

When I get the cd back, I'll put up a zoomed section, and see if I can add decent markers.

You do have a blogger identity, btw. It's whatever you logged in as to access In Fieri Esse.

Blackbeltmama said...

My Dad recently had a craniotomy. The idea of brain surgery is very scary and I can understand your fear. But you have to remember that these surgeons do this 24/7, 365 days a year. Ask lots of questions, get second opinions and trust that you'll make the right decision which will lead to a positive outcome. My thoughts are with you.

Blackbeltmama said...

My Dad recently had a craniotomy. The idea of brain surgery is very scary and I can understand your fear. But you have to remember that these surgeons do this 24/7, 365 days a year. Ask lots of questions, get second opinions and trust that you'll make the right decision which will lead to a positive outcome. My thoughts are with you.

Chandler B said...

Hi!
Alecia told me that you were recently diagnosed with acromegaly.

I was also recently diagnosed in September 2006 with a macroademoa. I did not find out until the day of the surgery by an astute anesthesiologist that had acromegaly. (I was told before that the tumor was non hormone producing.) I had a transphrenoidal resection in October, 2006

I am going to Sloan Kettering for a second opinion regarding my treatment options.

Its nice to find other 30's females with acromegaly. The doctors down here in FL have never treated a premenopausal female with acromegaly - nice to know I am not the only one!

Hope to hear from you soon.

Ken D. Webber said...

How is treatment going? I am not going the surgery route. Using bromocriptine and ground flax seeds along with St. John's wort to achieve CHI, balance. Restore the balance between dopamine and serotonin and let nature correct the dis-ease. And, very low on the carbs. Carbs feed the tumor.

lora said...

Very useful and excellent information..


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