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Duckie - 14 Apr 2005 16:36 GMT

check your email from me. I think I hit pay dirt. Found
a surgeon doing research in bone death.
Duckie

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DiWitt - 14 Apr 2005 17:08 GMT

bone death as in necrosis? Please share! Thanks.

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Cyberhugs,
DianeW

It is only with the heart that one can see rightly; what is essential
is invisible to the eye. --Antoine de Saint Exup?ry

check your email from me. I think I hit pay dirt. Found
a surgeon doing research in bone death.
Duckie

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Duckie - 14 Apr 2005 23:57 GMT

Well, the email Ari posted last week or this week
or.... I printed out and took with me to RD's [saw PA]
; showed it to Infusion room nurses; today to PT; and
finally my visit with my orthopedic surgeon. He is
doing research into the lack of blood flow cause bone
death. I gave him Ari's note, told him where Ari lives.
He took time to read and then tried to ask me questions
which of course I don't know the answers but then said,
I'll email him. :)
Seems he has some kind of theory [now understand I
don't know what he is talking about since at least so
far, this is not my problem so have done no reading on
the problem] that there can be something which sounded
like compression ? [made me think of decompression for
divers and a deep dive which ascent was too rapid]
which basically shuts down the blood vessels which
supply blood to the bone and the bone dies since it is
not being fed. Had some results with drilling [ick]
holes in the bones so blood flow can resume around the
affected area. I am sure I have lots of this wrong but
Ari's case interested him. Ari is not a candidate to
being drilled -- did I mention ick to that. lol But
sure hoping that some of the rest of the research might
yield something.
The doctor left clutching Ari's email and I felt like
this man was like a dog with a new bone. He took
possession. Bet he thinks about Ari alot from now on.
Made me feel good and didn't cost me a cent. :)
Duckie

> bone death as in necrosis? Please share! Thanks.

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spodosaurus - 15 Apr 2005 17:55 GMT

> Well, the email Ari posted last week or this week or.... I printed out
> and took with me to RD's [saw PA] ; showed it to Infusion room nurses;
[quoted text clipped - 3 lines]
> tried to ask me questions which of course I don't know the answers but
> then said, I'll email him. :)

Thanks again for that.

> Seems he has some kind of theory [now understand I don't know what he is
> talking about since at least so far, this is not my problem so have done
[quoted text clipped - 4 lines]
> being fed. Had some results with drilling [ick] holes in the bones so
> blood flow can resume around the affected area.

It's a controversial procedure called core decompression, where they
drill into the bone in an attempt to reduce the edema and allow
regrowth. It's controversial because it hasn't been conclusively shown
under which circumstances it really works, and it can contribute to
collapse.

With me, the risk of severe bleeding and infection are likely far too
high for us to use this procedure. It's been mentioned repeatedly to me
over the years, especially in the time before my hip replacements.

> I am sure I have lots of
> this wrong but Ari's case interested him. Ari is not a candidate to
> being drilled -- did I mention ick to that. lol But sure hoping that
> some of the rest of the research might yield something.

I hope so too. You never know what rare cases get overlooked or not
written up as case reports in journals, so to find the information you
rely on networking among professionals (hence the presentation of rare
or odd cases at case conferences).

> The doctor left clutching Ari's email and I felt like this man was like
> a dog with a new bone. He took possession. Bet he thinks about Ari alot
> from now on. Made me feel good and didn't cost me a cent. :)

I hope he's able to offer some new insights, but even if not, it's good
to know that at least people are thinking about it and even if it
doesn't help me, they might recognise it down the road.

I'm going to have another CVC implanted through my neck in a few days.
We're going to try not to burn out my kidneys with high dose IV iron
chelation. We think this is what's contributing to the osteoporosis and
osteonecrosis. My liver isn't too happy about the massively high iron
infiltration, either! We're really grasping at straws here.

I'm trying out a new painkiller, too, called digesic. I've only been
able to take tylenol/panadol for the last six months because of physical
side effects associated with any of the opiate painkillers.
Unfortunately, I have to be careful of my tylenol consumption because of
how much stress my liver is already under. Most of the time I just try
and take all the different forms of pain, but it's wearing me down and
stripping away who I am.

> Duckie
>
>> bone death as in necrosis? Please share! Thanks.

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spammage trappage: replace fishies_ with yahoo

I'm going to die rather sooner than I'd like. I tried to protect my
neighbours from crime, and became the victim of it. Complications in
hospital following this resulted in a serious illness. I now need a bone
marrow transplant. Many people around the world are waiting for a marrow
transplant, too. Please volunteer to be a marrow donor:
http://www.abmdr.org.au/
http://www.marrow.org/

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spodosaurus - 15 Apr 2005 18:43 GMT

> I'm trying out a new painkiller, too, called digesic. I've only been
> able to take tylenol/panadol for the last six months because of physical
[quoted text clipped - 3 lines]
> and take all the different forms of pain, but it's wearing me down and
> stripping away who I am.

I'm spitting mad right now. I have told my doctors, repeatedly after two
serious episodes, that I cannot take oxycontin. So, I started feeling
weird earlier tonight but I thought it was due to lack of sleep and
dehydration. However, things started getting little odd, so I decided to
do some research on Digesic. It's f#$%ing oxycontin! I hope the small
amount I've taken doesn't cause the same reactions as before, but all it
takes is less than 48 hours on that stuff for the reactions to start.
What the HELL is wrong with doctors? they're worse than teenagers! You
tell them something, and it goes in one ear and out the other because
they know best...until their treatment makes you sick for something
you've warned them about in your individual medical history...then they
act like they've discovered it!!!! Sorry about the rant and the
language, I'm very upset right now.

Ari

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PattyDFX1 - 15 Apr 2005 20:26 GMT

> I'm spitting mad right now. I have told my doctors, repeatedly after two
> serious episodes, that I cannot take oxycontin....I decided to
> do some research on Digesic. It's f#$%ing oxycontin!

Hi Ari,
Digesic isn't oxycontin. It's Darvocet (propoxyphene &
acetaminophen). Much milder than oxycontin; completely different drug.
Hope this helps:
http://www.ehs.lilly.com/msds/msds_propoxyphene_and_acetaminophen_tablets.html

Lilly: Propoxyphene and Acetaminophen Tablets
Common Name: Propoxyphene and Acetaminophen Tablets
Tradename(s): Darvocet-N; Darvocet-N Tablets; Darvon; Darvon
Tablets; Distalgesic; Dologesic; **Di-Gesic; Digesic**

--
Patty
Hoping your hills are never too steep.

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Joan Carter - 15 Apr 2005 23:28 GMT

> Digesic isn't oxycontin. It's Darvocet (propoxyphene &
>acetaminophen). Much milder than oxycontin; completely different drug.
[quoted text clipped - 5 lines]
> Tradename(s): Darvocet-N; Darvocet-N Tablets; Darvon; Darvon
>Tablets; Distalgesic; Dologesic; **Di-Gesic; Digesic**

Darvon is not a nice drug. I'm surprised it is still around, it was considered
one with bad side effects many years ago. I remember when I began nursing it was
used a lot but went out of favour a long time ago.
---
Joan

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spodosaurus - 16 Apr 2005 06:45 GMT

>>Digesic isn't oxycontin. It's Darvocet (propoxyphene &
>>acetaminophen). Much milder than oxycontin; completely different drug.
[quoted text clipped - 11 lines]
> ---
> Joan

Okay, obviously the web sites that were listing it as another brand of
oxycontin may have been in error. I'll have to do more research. Either
way, the side effects were similar to those I get on oxycontin type
drugs, and those are things I won't go back to.

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Joan Carter - 15 Apr 2005 23:26 GMT

>What the HELL is wrong with doctors? they're worse than teenagers! You
>tell them something, and it goes in one ear and out the other because
>they know best...until their treatment makes you sick for something
>you've warned them about in your individual medical history...then they
>act like they've discovered it!!!!

I don't know what it is. There are those who have this God complex. Thankfully
most will listen to the patient. But those who don't are dangerous.

---
Joan

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Duckie - 16 Apr 2005 23:34 GMT

Where are you getting your scripts filled. The druggist
should be watching this for you. {{{{{Ari}}}}}
Duckie

>> I'm trying out a new painkiller, too, called digesic. I've only been
>> able to take tylenol/panadol for the last six months because of
[quoted text clipped - 19 lines]
>
> Ari

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