Re: Penny/Chronic Osteomyelitis// Question

[Guest guest]

I haven't heard any glowing reports about nuclear scanning, but can't

say for sure as I have no personal experience. I know people in the OM

community have tried just about everything and the best stuff out

there seems to be the 3d software programs (eg. Simplant) that docs

use for doing dental implants (implants are VERY bad news, so

unfortunately, these are docs you don't usally want to consult with,

since they're the last people sympathetic to bone infection,

considering their dismal success rate with implants. Of course, there

could be exceptions.).

This 3-d imaging software however does incredible analysis of CT scans

of the jaw and sinuses but unfortunately, not that many docs yet have

the expensive equipment to open the scans or know how to use it.

There is a doctor in New Mexico, who is amazing. Every doc I know of

who sees his scans say they're the best they've ever seen, so if you

want his name, back channel me. He does CT scans and uses the 3-d

technology to pinpoint where the problem areas are, wormholes, etc.,

that other people and scans just can't see. His scans have made a big

difference for people I know.

The other crucial testing, of course, is to get cultures done. Either

from extracted teeth, bone biopsies or needle aspirations.

Unfortunatley, it's very difficult to find someone willing to do these

things unless you've got someone already working with you who

understands what's going on. Getting the ON/OM dx is essential though,

when it comes to getting insurance coverage of appropriate treatment.

This is a very difficult disease (ask orthopedic surgeons and i.d.

docs, who deal with bone infections in diabetics). The vast majority

of oral surgeons would prefer to pretend none of it exists. They just

want to pull teeth and be done with it. My first oral surgeon told me

he was shocked at the necrosis he found in my jaw, that it took much

longer than he expected and that he had to remove a lot more dead bone

than he had anticipated (I still have a big hole in the back of my

jaw), but he didn't mention a word of this in my actual records (they

keep it minimal for a reason - " normal " wisdom teeth extractions). He

then let me suffer with 3 dry sockets, refused to culture my

extractions, etc. and I didn't know enough then to make my own

arrangements to have them cultured, or even to keep the teeth, since I

could have sent them to Bouquot in Cleveland, at least to have them

tested for Osteonecrosis (bone death). If you have any extractions,

keep the teeth!

After this fiasco, I had to go to my maxilofacial pain specialist to

get abx. This surgery made me REALLY sick and spread my infection.

This second, brilliant doc has been trying to help in this area for

years, and he's so disgusted that he's no longer recommending ANY oral

surgeons. He calls ME to find out if there are any breakthroughs on

the doctor front, or if I've found anyone who's doing any good

whatsoever. After my initial surgical experience, I later saw 4 or 5

other local surgeons who wouldn't even discuss what was going on in my

jaw. They supported the first guy's procedures, and said they didn't

believe that OM or ON even exists. Bone-heads. How can it not exist?

The jaw's made of bone, isn't it? Apparently, they've got too much ON

on the brain to think logically.

So I'm sorry to sound so dismal. It aint easy, but not completely

impossible. You've just got to find the right docs to help you get

started, who will take the situation seriously and will work with you.

Not a lot of them out there, but they do exist.

In the meantime, this is why I personally like Tony's approach, since

the organisms he cultured out of my sinuses, were exactly the same

organisms they found in my bone (which are NOT supposed to be there).

Same sensititivities, etc. I've spoken with local, good

microbiologists, and they agree, it makes more sense to work with what

you've got (i.e. the nasal swabs) than with nothing at all. And there

is a minute amount of research out there that says antibiotics without

surgical debridement/intervention, can potentially be successful. The

problem is when there's a lot of bone death, that means no blood flow,

so getting the treatment to the focal infection can be difficult.

Hope this isn't too discouraging. It is possible to get help. But it's

a process. No quick fixes.

My recommendation is to get the best scans possible, pinpointing

problem areas. Then find a doc to do testing of your organisms.

Sometimes this help can come from strange places. My friend, who's

been fighting this condition for years, out of desperation went to a

cancer specialist. Since infection in the mouth is known to lead to

cancer, he was actually really helpful. Immediately recognized, from

looking at her scans and scoping her sinuses and seeing wormholes and

pus, that he jaw was obviously infected with Actinomyces (confirming

the Mayo's lab dx from years back, which no one would take seriously).

So this convinced her i.d. doc to treat the actino. You wouldn't

normally think of going to a cancer specialist, but you've got to

think outside of the box. Even talk to orthopedic surgeons. They may

not treat your jaw themselves, but they often have suggestions about

docs who might since they've got nothing to lose.

penny

> Penny,

> You mentioned yesterday about some people getting further testing

and

> they found out that they had chronic osteomyelitis. What further

> testing? Are you referring to a nuclear bone scan or others more

> sensitive? Do you think the nuclear scan is best? I have my doubts

> about it. My dx during a nbs was infarction. I had been on

clindamycin

> iv for 6 weeks , which could have made it look like infarction

rather

> than an active infection. I am interested in other testing if you

(and

> the group) know of any would you share your thoughts. Thanks,