Brian Cather's contacted me recently to tell me about his experiences with becoming "fixatored". Here's his story in his own words (and sense of humour too!)
My Ilizarov was "installed" on Feb 9th, at Rush Presbyterian St Luke's
Hospital in downtown Chicago. It hurt like hell.
I was armed with workout pants that snapped down the side, of course not
enough to cover the frame, which would never fail to excite conversation
from strangers wanting to know the whole story...until they heard it of
course.
My Ilizarov has 5 rings, and 8 bicycle spoke size wires (I read somewhere Dr
Ilizarov used actual bike wires for his early model)
All in all, your standard orthopaedic purgatory. Cases that I have read on
your website have been worse, some have been better.
I scheduled a "second opinion" visit with a good rep doctor at another
hospital, Northwestern Memorial for a week from tomorrow. I'm kind of scared
right now because I have had no less than four of my wires break since the
original surgery.
2 weeks ago I got an ugly inflammation around one of my wires, it hurt so
bad I could barely clean it.
I just feel like taking a power saw to my leg sometime, It has been so much
hassle, back in 87, up to 90 or 91, when I finally stopped walking with a
cane, to now, where I have some sort of Clive Barker inspired parakeet cage
surgically implanted on my left leg.
Anyway, Slim, thanks for listening to me rant, I have bored all those who
bother to come around me now with it, sorry to make you a victim too, but I
hope you will understand how it really needs to all come out at times like
this.
Write back if you want to chat some more, but I'm sure you are out
enjoying the freedom of an unpinned leg.
Brian
So any enquiries or the like from Chicago, then give Brian a mail shot by clicking on Brian Cathers.
And as Brian has kept me updated, here is the latest episode in his story.
Hospitals are the same the world over I am sure. Rush Presbyterian used to
be pretty nice actually, I think its gone a bit downhill though. But all the
rooms are private.
I have a real fear that I am going to ultimately lose my leg. I just hope
this next surgery helps out. I'd rather keep it than lose it, but the time
that it is taking to heal is just killing me.
They gave me Valium for muscle spasms. Didn't make them go away, but they
did slow down a bit.
[In my e-mail to Brian we talked about my clothing mods and he came back with the following]
As for the rag trade idea, hey, there's a market for it. I have been told
that the actress who played "Mary Ann" on "Gilligans Island" went into
business designing clothes for the handicapped.
Thanks for writing!!!
Brian asks if there are any other habitual wire breakers out there. If so please drop him a line at the following e-mail address by clicking on Brian Cathers.
I have been wanting to email you for some time now to thank you for the
site. It was the first place I went to when my doctor told me I would have
to get into one of these gadgets for a dodgy tibia.
I was getting osteomyelitis from a surgical steel rod that had been put in my leg 12 years
prior. I was getting pain, swellings, pus filled abscesses.. y'know, all the
stuff you don't care to see when you take your trousers off at night.
So the doc wants me in an Ilizarov the day after the next. I beg for a week
to make arrangements, and then have to tell family, friends, work, some of
who helped me through the original injury.
I ran around while I still had 2
legs and shopped like it was Y2K, stocking up on easy to prepare
nonperishable foods, paper goods, toiletries. I got a few looks as I walked
out of the market with forty frozen potpies, 20 cans of veggie soup, and
enough chicken breasts to cook up for a an Italian wedding...oh, and the
pounds of pasta.
I suppose they just thought I was a caterer, except for the
10 cans of shaving gel, 10 tubes of toothpaste, and an "amount" of toilet
tissue. I knew from experience that it would be awhile before I could do my
own shopping again, or anything that would require me to walk with my hands
full.
I was in for a total of
four days, Wednesday-surgery Cut the original break. pull out the rod and
screws. Cut out dead bone. Scrape out dead bone. Debride, debride, debride.
Fit the original break together and cut a healthier section to do the
lengthening on. Bonus for Wednesday surgical patients, I got a straightened
leg, which had deteriorated into a bit of a comma shape from the original
surgeries.
Thursday-early morning second surgery to stick a Hickman
catheter in my jugular vein and back to bed semiconscious. Morphine drips
and valium. Friday- up, up, up, have some physical therapy, have a wash,
take off the drip, have a few Vicodin, get dressed, get fitted for a
Dyna-Splint to keep my foot angled correctly,
Saturday, one last vile
breakfast and a limp round the PT room and they send me home.
I convalesced
at my mom's house for a week, then back to my own apartment.
Others were just grossed out of existence, staying away from me
except to open a door if I needed it, and I think I liked those people
better.
After a month, my sister engineered a pair of Velcro leg black
jeans from the pattern on your website, and they work very well to keep it
hidden when I have to be in a business environment at my job. And thank god
for the current trend of oversized knit boxer shorts.
3 rings are on the
upper part of my tibia with 2 wire on the top ring, one on the second and
two on the third.
The four distracting nuts are on the lower half of my
tibia, between the 3rd and 4th rings. The fourth ring had one wire, and the
fifth had two. My foot was held steady at a 90 degree angle by the
Dyna-Splint.
To try to shake the osteomyelitis I had to do a course of IV
antibiotics for 3 months. 1 gram of Vancomycin in a gravity bag of saline,
twice a day. And some oral Levaquin, which cost a stunning $280 US at my
local pharmacy for a month supply. (you don't want to know what the
vancomycin cost).
Fortunately, that is now done with and I have had the
Hickman removed. My infectious disease (yikes!) specialist has informed me
that any bugs in my leg are well dead and gone. Any other problems would be
coming from any necrotic bone that was not removed in the original surgery.
I.....think...that's good news, I hope.
I don't feel lucky, but
I don't feel cursed either. What I do feel is frustration, some with the
time element of this, some with my doctor going from the pre-surgery visit
where he was being very careful and considerate and explaining the procedure
with confidence, to one who sees me perfunctorily, glances at x rays, says
it looks OK, and answers questions I have with "I don't know".
One in my ankle broke in the middle of March, I want into surgery for a
"revision" and they took out the broken wire, repositioned two others and
added another wire on the fourth ring for a total of nine.
Fast forward to
the middle of April. I break 2 wires, one on the bottom ring and one on the
top ring.
I go for another revision, and only the two broken wires are
replaced. Fast forward to the middle of May and a I break another ankle
wire. This time the doctor decides not to replace it, but to pull the broken
one out, leaving me with one on the bottom ring, and two on the fourth ring.
Whenever I break a wire I get instructions not to put any weight in it,
which means going back to two crutches. Usually I try to use just one or two
cane around the house, and always try to put full weight on the leg as much
as I can.
But they cant tell me if that is was it making the wires break.
They said it doesn't happen usually. But since I have been putting full
weight on, I have broken wires and wires have also shifted the pinholes in
my leg by as much as half an inch in different directions.
I am worried that
the bone is not healing on schedule and my doctor is not being upfront with
me. I see the x-rays, and I see a big inch of dark gap with a little bit of
nebulous white that looks nothing like a fracture being bridged. But I am
not an orthopaedic surgeon either.
It started spreading to some of the wires
above, and I got an antibiotic that I took for a week and didn't work.
By
now I was in so much pain I was doping myself with Vicodin just to get away
from it. I was getting muscle spasms in the inflamed area as well. It was
distracting. I couldn't read, sit, lay down, watch TV.
After a week we went
to a stronger antibiotic, and Valium for the spasms which finally worked,
but I lost the entire last week of work, which I really wanted to be a part
of as we were defining a new internal training scheme.
But I was so doped
there was no way I could drive there. They were understanding at work, but I
feel really bad because this is taking so long, and whenever it seems I can
get myself going to work on something, I get some kind of complication, and
it all gets stuffed.
I have given up completely on planning, anything at
all. I'm getting antidepressants from a doctor, and they are helping a
little with the blue moods and feelings of hopelessness and helplessness.
But they don't do well with the frustration. I'm getting cranky and bitter.
What can I say?
The novelty has definitely worn off. Maybe the
antidepressants are the problem, they don't let me feel helpless, so I feel
bitter instead? [laugh]
I saw this chick who is competing in
the Olympics in Sydney who has NO legs, and she runs better than I did
before my leg ever got injured. It should be inspirational, but it isn't
somehow.
However, I saw on another Ilizarov WebPage about how these fixtures
are cheaper in the long run for insurers due to the high cost of prostheses
over a lifetime.
But I also know there are horror stories about bones just
not healing, ever. And I'm afraid I am one of those people. The reason they
left my rod in for 12 years was because my fracture was a mal/non union, but
it was fine with the bits of bone bridging around the rod. But it couldn't
do without the internal fixator.
I know your fixator was on for a long time,
and I really empathized with all of your setbacks. I am glad that it is off
of you now, and I hope someday I will be able to write to you and say the
same. My doctor told me 6-9 months before the surgery, but now its not
looking so good. Another 4 months was his guess before the last two wires
broke. The record for him, according to his nurse is 14 months, but that was
a more complicated case.
Also, if you get any inquiries from the Chicago area, you can give em my
e-mail, and I will try to help with any support or tips that I can for local
stuff.
I have officially changed doctors and am planning to have surgery at
Northwestern Memorial hospital in downtown Chicago on July 5th.
My new doc
is going to treat the bone gap a little more aggressively with a bone graft,
ow, ow, OW!!!! Also I broke more wires,
Everyone accuses me of
over-doing it when the wires break, but I am not doing anything except
trying to limp around the house. If I am any less active I'll get bedsores.
That was one reason for the no-confidence vote in my previous doc, he didnt
seem to be that concerned about it, or the fact that my break wasn't filling
in very well.
As they should be for $1000+ bucks a night.
Northwestern's new hospital was built last year and is supposed to be v.
"21st Century" with "patient comfort" foremost in mind
All zips and velcro, but
tailored stuff that works around braces crutches and wheelchairs.
Don't
think there is anything ilizarov specific though. I heard about another
company called WreckWear, not sure if it is the same type of stuff.
BC