Living life on the other side of the looking-glass ... With immense pain, catastrophic osteoporosis, and abnormally high testosterone

Nothing is clear in my life these days... not my thoughts, not the cause of my conditions, nor the future course of it.

After...

Four months

Hours spent in every known scanning device

Litres of blood and urine drawn and tested

Here is what we know: Diddly/squat.

OK, we know a little more than that. As my first x-rays at the walk-in clinic back in early November suggested, I do indeed have osteoporosis. VERY severe osteoporosis. So severe that the doctor wrote for the best and most expensive osteoP drug on the market- Forteo- and insurance approved it right away.

We know one other thing: My testosterone levels are significantly higher than normal... so much so that the doctor asked if I'd been shooting up 'roids and testosterone like an MLB home-run king.

Yeh... right... were I taking additional testosterone, I'd look like sasquatch, and sound like a foghorn.

We don't know what caused the osteoporosis.

Nor do we know why I am still in such inexplicable unbelievable pain on a daily basis.

My surgeon has determined that my gamma nail has set properly tho, so he's signed off on my care... we're looking under all stones to find a doctor who will either treat my pain or help find its cause.

So far that's been difficult, which is why you don't see much of me online, and won't until this is addressed.

The pain- more than the pain meds- leaves me in a fog/haze most of the time. I'm often disoriented in regards to space and time... I trip over things not there, run into things... and remember, before all this, my reflexes were so acute that I did all sorts of crazy things balancing on the bongo board.

Along with the pain is usually very severe muscle spasms. They are primarily in the areas of the body most affected by the osteoporosis but not exclusively.

The pain and spasms started before my femur fractured... so either they and the osteoporosis share a common cause, or they're just comorbid.

I just can't words for the pain... but perhaps this will suffice to convey how severe it is... I often find myself wondering if phantom pain could possibly be worse than what I'm experiencing on a daily basis... I wonder if I'd not have done better to have the leg amputated? Consider that... consider what a lover of the outdoors I am, how vigorous and vital I am, that the pain is such that amputation seems like the greener grass.

There are lots of good things happening in life... most especially that Tess and I have spent more time outside together in the last 5 weeks than in the previous 5 years... its an answer to many prayers.

Thanks for the comments and caring and praying... I so wish I were able to be online interacting with you, but interacting with this maelstrom which is working its way through my body takes all I've got... and then some...

The photo is one I took of my reflection in the creek which runs along one side of our property... seemed like a more apropos image than the wheel chair one. I did some FX to it... maybe I'll do a post about them someday...

Endocrinologist 1/27/10 & another reason I may not be online much

Yesterday's visit to the endocrinologist went very well... much as I had hoped and expected. Tess and I were struck by how all the things we discussed and tests he ordered were the things we'd both been wanting to explore since...oh...Nov 10th or so (a week BEFORE my leg went out, for those of you keeping track.)

So, got those and one more scan- a Dexa scan- then we reconvene in three weeks.

(Incidentally, in the course of this, the calcium levels came up / out- by themselves, they're good... as expected... .)

Next Tuesday, I see my orthopedic surgeon to explore resumption of full weight bearing and the details of my future course of activity, what sort of pain levels should persist, how long, etc.

So I'll be plenty busy dealing with all these doctors' visits... almost feel like I need a medical secretary just to keep track of it all!

I have started making inquiries to gain the information I'll need such that once we know what's going on with my body, WE can make a good decision about future vocational / educational issues. (Radiology was suggested by a well informed person close to the situation, and has much to commend it.)

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However...

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Another event happened yesterday which will doubtless affect how much time I spend online... where I'll be when, etc... for some time to come.

If you know us well, you know one of my family's hometowns is a bit to the north of Indy. A situation has arisen with the health of a person there which is quite alarming and has hit all concerned quite hard. As it plays out, it will take more of the family's time, attention, focus, energy, emotional resources.

I believe that's just enough information for those who know us well enough to know what I'm talking about.

That's all I care to say on the matter in this ueber-public place.

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General trajectory of pain, range of motion, etc is good. If I overdo, my body tells me, so... live and learn.

Tess and I are getting outside together more... she shot a couple of good videos of me which I hope to upload soon under the title "Not disabled- logistically challenged."

Good thoughts and wishes to/for all out there!

Avascular necrosis in my right humerus indicated by Weds' MRI

Just found out the results of Weds' MRI. Don't know much more than that its there at the top of my right humerus (upper arm) bone near the shoulder joint. Not even sure which of my many specialists will be treating it, what the treatment will be, etc.

The simplest explanation of this in layman's terms I could find it this one.

A more thorough but still generally understandable treatment is here.

A detailed clinical discussion specific to avascular necrosis of the humerus is here.

This is all very new to me, just heard, but skimming over it all yeh, does make me wonder if that's what happened with my femur, and may be happening a few other places.

The Indiana Orthopeadic Center & Dr. Sieber have done wonders for me - Post-op visit and general kudos

I had my post-operative visit with my orthopedic surgeon yesterday. It was a long but very pleasant visit, as indeed they all have been. The folks at the Indiana Orthopeedic Center have all been wonderful. I've been trying to take down names of people so I can write specific letters of commendation and thank-yous, but if you're somebody who works there, and you've worked with the tall black haired guy who's always working on a rug, I'm talking about you!

( We stopped at the dollar store after the visit and I bought two packs of thank-you cards, but I think I'm going to need more.)

The surgeon who worked such wonders for me is Dr. Jon Sieber He placed a 14 inch by 1/4th inch titanium rod in my femur. Its quite impressive. The ends of this device which anchor in my bone have heads like a dry wall anchor. I wish I'd asked him the precise name of the device, or for permission to take a picture of my x-ray, etc.

I went there on crutches and the receptionist smiled and said "This is a surprise"

When I asked her why she explained that it was surprising and nice to see me not in a wheel chair.

Of course they took x-rays... many, since I'm as lengthy of stature as I am of speech. The nurse was very pleasant too, and she surprised me when she said "I wish all my patients were as cooperative & understanding as you." Now, I don't think of myself as a particularly patient person, nor especially nice. I do at least my share of griping, but not at people who are helping heal me! I heard similar comments in the hospital. I'm glad my health care team appreciated my attitude, but I don't get why people would grouse at them for doing their jobs when their job is fixing you! Its not like they wake up in the morning and say "Oh goody, I get to torture that freak who's always working on the rugs." Sure, some of the x-ray positions hurt, the IV and CO2 meter in the hospital were hassles but... anyway, as above, that's why I make it a point to write thank-yous... they don't get NEARLY enough appreciation!

As for my situation, the etiology remains a mystery, but the doctor is pleased with the progress of my healing and my activity.

I'll be on crutches and off driving for a month. He wants me to say at partial load bearing the next two weeks, and work towards full load bearing and being off crutches by the time I see him in a month.

Tomorrow I see the oncologist- though I have no idea why...

• the biopsy of my femur marrow came back totally clean,
• had blood tests for all possible cancer markers, and they were all clean
• Every square centimeter of my body has been scanned at least once, some as many as half a dozen times by at least two different methods (x-ray, MRI, CT, ultrasound, & dye contast bone density.)

I believe there is still some concern about osteopenia or osteoporosis. Cancer was explored as a possible etiology and has been ruled out by the extensive battery of tests. So perhaps the oncologist will want to explore other disorders which though not cancer could still be responsible for my bone having disintegrated and broken?

Tess seems to be done breaking out with new pox, and my mother bounced back from her fever/stomach problems.

Thanks for all the love, prayers, concern, support.

Tess update: 3 white spots on back of her throat- cause for alarm?

Took pictures of them so she could see them, could upload one later if anyone thinks they'd be able to tell us something from them... right now just killing time waiting for my shopping ride.

My mother has stomach flu / Crutching & PT going well

Why not... my mother seems to have stomach flu- high fever, chills, vomiting...

So I'm headed out presently with my brother to do some emergency shopping- gatorade etc. I'll be on my crutches and my brother will follow after with a cart.

There's no doubt now that Tess has chicken pox.

CHICKENPOX: Online diagnostic tools?

Tess has had a fever of 101 since Sunday, and yesterday broke out in... something.

Since I can't drive to the drug store or take her to a clinic, we'd like to know what we're dealing with before we beg a ride from family or friends.

Thanks!