Need help in basic start ...

[tie]

I have written my story here about a year ago. (less)...

I deal with debilitating jawbone pains for years which the source was unknown .
Since the last time i was here, they have found i have severe sinus infection and i went to surgery... it didnt work.. i since then i am with infection and antibiotics for 8 monthes now.

My thing is - beside the pain my overall look of jaw (and face) has totally changed in 10 years. Totally . Ive tried to convince local doctors that i KNOW ive lost vertical length , my lower 1/3 half of face totally collapsed .
It devastets me.

My teeth - are straight.
My bite - is fine.

But i know how ive looked and how i look now and its unnatural.. uve lost the will to live if it is with this look.

But people say - if its not for medical reasons - dont do jaw surgery.. its very complicated surgery etc. I agree. )...

Just need to share to vent, to hear opinions ...

I am from Israel...i cant reach to the US i cant travel for years due to my chronic pain, .. i dont know where even to start looking for surgeons.. bhow to contact offices (my english in talking is not that great) . I wish i coukd even pay for someone to help me with research contact doctors etc...

At least to hear what they say, if my situation is fixable or not..
, so ill have some hope . Yes i was unique looking in a good way and i want that back

[kavan]

http://jawsurgeryforums.com/index.php/topic,7803.msg70649.html#msg70649

Reply #1

In particular the last sentence in Reply #1: "Bottom line is that you have to pursue a diagnosis as to what this pain condition is and get some kind of medical CLEARANCE in order to have a surgery/surgeries to the face."

Chronic pain along with seeing accelerated unfavorble changes can short circuit the logical thinking process and as you say, preclude pursuits that involve travel. So, I'll go over the logistics here again.

1: Your MAIN pursuit needs to be a DIAGNOSIS of what the 'mystery' medical condition is. It is something where you have BONE LOSS to the face and also PAIN to the jaws. So, if the bone loss and pain is localized to the jaws (as opposed to being systemic as in bone loss everywhere and pain to all joints), than seek out maxillo-facial surgeons or those in DENTAL profession for a DIAGNOSIS. If the bone loss and PAIN are systemic as in everywhere to ALL joints or nerve pain, than keep PUSHING your primary care doctor to tell you WHICH type of SPECIALIST you should seek out for a diagnosis.

Since facial surgeries, eg. maxfax and/or plastic surgery are CONTINGENT on having a MEDICAL CLEARANCE or at least their knowing what med conditions you might have, you've gotta keep on pursuing appointments with doctors who could DIAGNOSE what your condition is. BECAUSE a doctor doing aesthetic surgery on you, whether it's maxfax or plastic surgery is going to what to know what health conditions you have and/or if their surgeries can help and not harm.

2: If you want to know what maxfax surgeries could be done and to get a plan/proposal, you would need to obtain CEPHALOMETRIC X-rays from a local maxfax. With that, you could set up a cyber evaluation with a US surgeon who would evaluate the cephs and send back a proposal.

To the best of my knowledge, Dr. Gunson does that and there is a process and fee involved.  If you wanted to know more about that, you would have to put up a separate post asking people who did that how they went about setting up those type of initial internet evaluations.

There are probably OTHER doctors who could provide proposal/plans based on your cephs. You would need to query members who have HAD them. I don't know the details.

In the event you don't already know, most maxfax/bimax surgeries aimed at optimizing aesthetics involve time in BRACES to prepare for it even if your bite is 'fine' and your teeth are 'straight'.

[tie]

Hi

Thanks much for taking the time to answer , and clearly as always .

You are totally right i need a diagnosis , my life would be much easier. Believe me i've been to more than 100 doctors in all fields.
Just this year i did a CT scan and a surgery cause whole my sinuses were infected to the eyes from a fistula in my jaw .
I might need another surgery next month .

But ill leave this, not because its not important, but its not something can be solved here  .

The thing is, i cant even express how the qulity of my life is.. its below zero, the pain and the fact i cant look at myself, i dont have any joy in life for 10 years .

I think only here people can really understand that.
I've read the posts and i see how much auesthetic eye you have, how you see every mm of change can effect the whole face .

The logic is - ill need to silve my current jaw/sinus infection. This can take monthes, i know.

But I , at least might want to consult with best oral surgeons , to have confirmation that THEY see what I see, that at least they can give me some hope, some path for along the road, that they CAN help me. I dont mind dying on the operation table, but not to wake up with nothing to live for, like now . ( I know, it's not something to say to doctors : )

Pain is in jaw, not all over body. Just niw they have found an infection they have missed for 1.5 years even though i went from doctor to doctor begging something is happening .

Of course many doctors dont want anything to operate a chronic pain patient. I remember i email a xlinic in the US that has a really impressive site, but the doctor didnt want even to advise me ( of course i asked to pay for the consultation).

About the xrays needed.

Due to my illness i did A LOT of scan...
Panoramic scans every year, a full head CT and a full head MRI..
I wonder if these scan will be enough for them instead of CEPHALOMETRIC at least for start cause i really did too much radiation (who knows, that cause also cause some of the process of bone loss).


Yes - braces is a big problem i dont mind the look of it - but for someone with pain in mouth its a problem to do braces.
I hope for maybe a doctor can do without braces.

And yes - i might open a thread asking for names of doctors.
Might open other posts for that in the future

Thanks Kavan , i love reading your logical thinking

[kavan]

I know what you mean by doctors not wanting to get to the SOURCE of the chronic pain. They just want to say; 'Chronic pain patient' which just reflects what you told them.

To the best of my knowledge, those who have had the 'internet' consults with Gunson (and some others) just need the CEPHS and maybe a panoramic front dental X ray. They use those to look at the bite, facial angles, proportions etc and then CHANGE things on a program to come up with a preliminary proposal. But all facial changes from maxfax surgery are contingent on ORTHO (the being in braces part). Not wanting to be in braces to prepare for such a surgery would limit you to 'linear advancement' where BOTH mandible and maxilla are brought forward by SAME amount. However the chances are very LOW that something like that would look aesthetically pleasing unless you happened to be the really 'lucky one' who could have that. Most bimax cases need a bunch of different and varied adjustments to each jaw.

Well, you already know that Gunson can do those internet assessments. I think Relle in California could be another one. But there could be more. You would just need to ask the members who had that service HOW they went about doing it and what they needed to submit.

There are probably even MORE maxfax docs now a days due to the CORONAVIRUS who do the SKYPE consults (where they see your face in motion over your computer and talk to you). I think they call them 'Tele-visits' or something like that. So, now is probably a good time where doctors actually want to do REMOTE initial evaluations. So, look into that too.

[Post bimax]

Have you investigated all TMJ disorders?  TMJ degradation could lead to pain, retrognathism, bone loss, etc.  Gunson and Wolford have a strong interest in TMJ issues. Maybe Movahed too.

Word of caution- I would get 2nd opinion and confirmation before proceeding with Wolford as he may try to sell you TMJ replacements when you don't actually need them.

[tie]

I know what you mean by doctors not wanting to get to the SOURCE of the chronic pain. They just want to say; 'Chronic pain patient' which just reflects what you told them.

To the best of my knowledge, those who have had the 'internet' consults with Gunson (and some others) just need the CEPHS and maybe a panoramic front dental X ray. They use those to look at the bite, facial angles, proportions etc and then CHANGE things on a program to come up with a preliminary proposal. But all facial changes from maxfax surgery are contingent on ORTHO (the being in braces part). Not wanting to be in braces to prepare for such a surgery would limit you to 'linear advancement' where BOTH mandible and maxilla are brought forward by SAME amount. However the chances are very LOW that something like that would look aesthetically pleasing unless you happened to be the really 'lucky one' who could have that. Most bimax cases need a bunch of different and varied adjustments to each jaw.

Well, you already know that Gunson can do those internet assessments. I think Relle in California could be another one. But there could be more. You would just need to ask the members who had that service HOW they went about doing it and what they needed to submit.

There are probably even MORE maxfax docs now a days due to the CORONAVIRUS who do the SKYPE consults (where they see your face in motion over your computer and talk to you). I think they call them 'Tele-visits' or something like that. So, now is probably a good time where doctors actually want to do REMOTE initial evaluations. So, look into that too.

Doctor totally dont want do invest. I am diagnosed as "atypical facial pain" (which is a valid diagnosis and there are much many others like me) - a diagnosis basically mean " you have pain in teeth, we believe you, its some kinda neuropathy, we dont know the source of it or how to fix it".
For ne its not enough .

Thanks for clarification about the braces

My fear is (let my chronic pain aside fof a moment).. my teeth are quite aligned.. im not sure any doctors would want to ruin that (and even i have my fears to do that ir is it worth it).
On the other side i do know my look is debilitating me to live  .

I need something to lengthen my face. The vertical axis of my face shortened, making my whole proportions gone .
Ive extracted 5 teeth so on the other hand my mouth is far from being balanced.. but teeth ARE straight and no bite problems (so why cause ones with surgery i ask myself)

I need to find doctors that are sensitive to the auesthetic side to at least give a thought if what needs to be done with my face .

I need to see i how download and transfer the CTs i have or MRI into simple files so that i can send via internet, and how to write my case to the doctors etc  .

[tie]

Have you investigated all TMJ disorders?  TMJ degradation could lead to pain, retrognathism, bone loss, etc.  Gunson and Wolford have a strong interest in TMJ issues. Maybe Movahed too.

Word of caution- I would get 2nd opinion and confirmation before proceeding with Wolford as he may try to sell you TMJ replacements when you don't actually need them.

Thank you.

I was checked for Tmjd , i dont have it (but its hard to know)...

My face has shorthened.. i lost 5 teeth so my teeth is lack balance for sure, but i dont think the pain is from that.. but the loss of bone might (and from extracting teeth).

Thanks for the names of the doctors.
Ill see if i will ever got the strength to start the process of inquiring

[kavan]

Doctor totally dont want do invest. I am diagnosed as "atypical facial pain" (which is a valid diagnosis and there are much many others like me) - a diagnosis basically mean " you have pain in teeth, we believe you, its some kinda neuropathy, we dont know the source of it or how to fix it".
For ne its not enough .

Thanks for clarification about the braces

My fear is (let my chronic pain aside fof a moment).. my teeth are quite aligned.. im not sure any doctors would want to ruin that (and even i have my fears to do that ir is it worth it).
On the other side i do know my look is debilitating me to live  .

I need something to lengthen my face. The vertical axis of my face shortened, making my whole proportions gone .
Ive extracted 5 teeth so on the other hand my mouth is far from being balanced.. but teeth ARE straight and no bite problems (so why cause ones with surgery i ask myself)

I need to find doctors that are sensitive to the auesthetic side to at least give a thought if what needs to be done with my face .

I need to see i how download and transfer the CTs i have or MRI into simple files so that i can send via internet, and how to write my case to the doctors etc  .

Your teeth might be perfectly aligned as to how your face is NOW. It's just that they are probably not in the right place to LATER displace your face in a maxfax surgery.

[tie]

Your teeth might be perfectly aligned as to how your face is NOW. It's just that they are probably not in the right place to LATER displace your face in a maxfax surgery.

Yea, i know.
Im from Israel, here its very conservative regarding jaw surgeries.
Doctorshere told me and warned me - dont touch your jaw, sunce your teeth are now aligned why mess it.
But ive seen so many casesdoctors tell people not to do surgeries that later turned out to save their lives (and also the opposite cases, of course).

Thanks much , Kavan