After 12 Years Of Pain I've Had My Jaw Diagnosed.

[willows]

Today 2nd January 2009 is a day to remember for at 9:30 am I was diagnosed after 12 whole years of the most awful pain I've had to put up with , when it could have been cured 12 years ago ............but someone messed up ...........or should I say a number of men messed up , doctors that is .

I never had any problems with face pain until I had the first car crash in February 1997 in which my son , huge puppy and I were hit from the front /side by a lady who was coming out of a private school as we were passing it , I was the only one injured and away with a neck injury , a broken wrist and broken ribs , but I had also hit the right side of my face very hard against the drivers window causeing massive bruising to this side and pain , no x-rays , scans or MRI touched this part of my body and it was just left to heal as the so-called A & E doctors said ' its juts bruised '..................WRONG ( number 1 mistake)

The second car crash was in September 1997 this time I had to be cut out of my car as I had been hit by a land cruiser with bull bars on from behind ( I was waiting to come out at a roundabout ) the car that hit me was doing 50+ miles an hour and I didnt stand a chance, I had back and neck injures and once again I struck my head /right side of my face on the door frame , nothing was ever done about this as the bruising and slight swelling would subside I was told with confidence ..........WRONG ( number 2 mistake)

The third incident was almost at the end of September 1997 , if you have read my story you will understand what I mean by , my ex-husbands inability to terminate me . I came down 17 wooden stairs into a plate glass mirror and sustained neck, back and arm injuries in an attempt to not hit the mirror face on which would have surely smashed it in my face and left me with horrendous facial disfigurements I turned my head and put my hands up to shield myself. I manged to get away with it but had bruising once again to the right side of my face and head and for the third time I was told I was fine ( facial wise) and nothing was ever done about looking at it or checking it .............WRONG ( number 3 mistake)

So from late September 1997 I've had pain in the right side of my face , it started as a headache.........then my ear started to run like I had water running out of it ( intermittent times) ..........then I started to get earaches on and off , on and off for days then weeks at a time......then my nose would get a 'headache' !!!!! ............then my jaw........then teeth.......then my neck and finally the whole of the right side of my face was involved ( took almost 12 years to get this far).

My hearing has stared to be effected and I'm now talking loudly at my boys ( intermittently again ) , but its the pain that is the worst and its so bad now that on Christmas day I was sick with it and had to open my presents with a bucket beside me ( not my best of years so far then )

The pain has now been constant since Christmas day and I've been getting worried that its not just POTS , I've been thinking its possibly one of my lumps growing inside this time or something even more sinister .

Today 2nd January I went to see a ENT specialist AGAIN .

I've seen at least 7-8 over the past 12 years and all have just said 'it will pass' ............( wrong ) 'its nothing to worry about' .( wrong ) .............its possibly migraine' ( wrong ) in fact I've had so many things aid to me about what it is or what they think it is I could write a book about face pain .

So....................would you like to know what it is ??????

Would you like to know what I have to have down ?????????

And would you like to know how on earth something like this could possibly be passed over, missed or just brushed aside by the so called 'experts' ?????

I've come to the conclusion that doctors DO NOT LISTEN TO ME ...........because if they had this awful thing ( what? what ?) would have been picked up 12 years ago and I would not have been like I am today. It took a woman to diagnose a woman and I think the reason why she picked up on it so fast was because she LISTENED to me , didnt interrupt me and asked questions that no one had ever asked before and when she did a certain test on me ...............er , well all I can say is that half of the staff of the ENT department came rushing into the room I was in as I screamed so loudly they must have thought I was being murdered ( couldnt stop myself unfortunately )

So ...........guess what ??????

I HAVE BEEN WALKING AROUND ALL THESE YEARS WITH A BROKEN JAW BONE .

The reason its not healed is because she thinks I've broken it more than once and now all the cartilage and muscles that are surrounding it have grown out of place or have gone. The test the doctor did was to put her finger in my mouth and press ( on the left side first ) the bone which is right at the back of your teeth facing downwards, of course I felt nothing , just pressure.

She then said I'm going to do the same on the other side ' Please whatever happens dont bite me ' this I thought was a silly thing to say as why should I want to do that ???? when she pressed the bone .............OMG I screamed with the most awful pain I've ever felt in my life and nearly passed out , feeling sick and dizzy afterwards.

She also pressed a place in line with my ear but about two finger with this out and once again I wanted to be sick .

So , I've taken the form straight down to the MRI section who are calling me as soon as they can get me in and I'm being sent to a facial surgeon to have my jaw bone sorted out ..............I just cannot believe it 12 whole years of this awful pain because the male doctors that I've seen just couldnt be bothered to listen to me .

Totally and utterly outrageous behavior by the NHS and all the doctors concerned who have made my life and my families utter H*** over these years as my pain effects my families ( as we are all aware)

Ami .

[dsdmom]

OMG!!!!! I am blown away that you have been walking around w/ this for 12 years!!!! That is so wrong I can't even begin to comprehend it. You must be very angry. And relieved. At least you know now you are going to get fixed...so try to hold onto those positive thoughts throughout this experience. And keep us updated.

[janiedelite]

Oh, I'm so sorry!!! I was hit in a car accident (lady drove through a stop sign into the side of our car), and I had hip pain afterwards. 1 and 1/2 years after the accident a surgeon found a ruptured ligament that was missed during the first surgery and MRI's. In the meantime, I'd lost my nursing job because I was in so much pain I could hardly stand or walk. It still took over 9 months of physical therapy after the second surgery to reduce the pain enough so that I didn't have to use a cane. It still hurts to some degree all the time.

What can be done for you now? I'm so glad your new ENT is finally getting you the treatment you need. Will you need surgery? It sounds like a big deal to try to fix with now because of all the overgrown muscle, cartilage, etc.

I so enjoy reading your posts. Your humor in spite of your illness has inspired me to hope and dream in spite of my dysautonomia. I really hope that you can get some pain relief and get this fixed!

[flop]

Ouch!!!!! I hope you get this fixed soon and get relief from all that pain.

Flop

[shelby]

Oh my!!

I am sorry to hear you have to go through all of that to find out that it was broken!! Good luck with the fixing of it. I have TMJ and have had two jaw surgeries and do you think it is fixed?? Nope. So I give up on that!! lol

Again good luck hope they fix it!!

Shelby

[Megan]

I'm horrified that nobody caught this! I hope you can get things fixed and start feeling better!

Meg

[iheartcats]

I can't believe you went around with that for so long - at least you know that sharing your story, if any of us have a serious accident we'll demand xrays for 'bruised' areas.

I hope they can fix this for you. Keeping my fingers crossed for you!

[juliegee]

OMG- Ami,

I knew you were facing jaw surgery, but didn't have the whole story. That is beyond shameful. I pray it is not too late to encourage proper healing. I am very sorry for all you have been through/and are going through.

Hugs-

Julie

[Patricia]

Many doctors don't listen these days and only make assumptions. Maybe you should send a brief note with a copy of your report to some of these doctors as it would be a learning lesson to them.......if indeed they listen.

[willows]

Thank you so much for all your replies, yes its pretty horrendous isn't it and so unnecessary .

But I'm not the only one that this hospital in Suffolk has misdiagnosed, my friend had a fall and had a broken wrist , at the time the A & E doctor said that the whole arm should be X-ray but it wasn't and about a month later they discovered that she also had a broken elbow , she has now been in constant pain for 3=1/2 months and never had a plaster cast on her wrist or arm , she was just told to 'rest it ' !!!!!!!!!!!!!!!!!!

I'm begining the think that there is some very big failings going on at this hospital but after 12 years I don't think they would even bother to listen to me .

The consultant who saw me on the 2nd thinks its a fracture high up almost in line with my ear ......now think about this .

About a year after the crashes etc I had 2 wisdom's out and the top one took around an hour of pulling and twisting etc ............I was in so much pain I was throwing up and shaking , but the ( same hospital by the way ) dentist just carried on saying that he'd frozen the area and I couldnt possibly be feeling pain ...............so what if he was pulling by fracture apart with each pull and twist ??????????????? OMG it doesn't bear thinking about does it !!!!

Today we all go back to our dentist and hopefully I can get him to write to the Devon hospital to back both Mike and I for the need for emergency help .

Mikes been so unwell over the past 3 days and only just been out of bed , the jaw pain has set of his POTS and he's been so tired , yellow and dizzy , it makes me so mad that the hospital hasn't called him yet , if he's as bad as this next week I'm going to just take him to the dentistry department with or without an appointment.

I've been eating less and less as the pain I had in my face on christmas eve is still with me and the only way I can get any pain relief if is I stick a warm hot water bottle on my face , eat lukewarm foods that are very soft and drink lukewarm drinks ....thats hot or cold drinks at skin temperature. Its just been constant pain in my ear, eye, nose, teeth, jaw and face 24/7 for a whole 13 days .............well 12 years 5 months and 13 days to be totally 100 % exact !!!

Ami and her poor old squeaky jaw.

[corina]

i have been thinking what i could add, but it seems everything has been said. i am momentarily lost for words and uplifting talk. thought you had had it all, seems i am wrong . . . . . . . . . . .

keep smiling ami and maybe bite some ankles too (though that will be a hard job with that broken jaw)

love,

corina

[Shimoda]

Wow. People can be such retards. I'm sorry you had to suffer for so long for no reason other than other peoples' complete incompetence. I know that the apology doesn't help much, so take it for what it's worth. My thoughts are with you!

[willows]

I've been sort of talking to the hospital today and am having an MRI on Monday 12th at 7 pm in the evening.

I'm in so much pain at the minute I dont want to eat , cant sleep , feel sick and quite honestly just want to curl up and ***, yes, I know this isn't like me as I'm normally so 'bite the world to let them know your still alive' but this pain is something I've never felt in all my years of bits going wrong or falling off.

I cant describe it as such, but its NOT a pain like if you had a headache or had an infected lump somewhere nor is it toothache or earache.................when I broke my ankle and wrist neither felt like this which is what I just cannot understand , its a pain that is new and so horrible , so uncontrollably horrible.

At the minute I'm taking a 40 mg oxycodone slow release every 12 hours plus 40 mg of oxynorm every 4-6 hours , the oxynorm are supposed to 'kick in' after 20-30 minutes but they dont start to help until an hour or more after taking them and then only for around another hour if I'm lucky .Nothing really seems to stop this pain and I am spending most of my time 'drugged up' get still feeling everything and it goes on and on and sometimes when I try to eat or speak its so bad I just want to hold onto my face and scream...................

I also had a horrible thought , my voice has been having problems , my swallowing has been having problems and now I have this unbelievable pain .......................it makes you think doesn't it , I won't even write what I've got going through my head at this time for it just doesn't bear thinking about .

I'm so tired , so if I'm not on again over the next few days you'll know that the other new drug my doctor is adding in to kill the pain tomorrow ( 9th Jan 2009 ) has worked and I'm at last getting some sleep .

I will let you all know as soon as I get some answers from the MRI hopefully on Tuesday or later next week .OK.

Corina has my phone number so if its anything very bad and I have to go in to hospital immediately I'll get Mark to call her and then perhaps Corina can post for me , but keep your fingers crossed its just a huge fracture whats rubbing bone on bone and has mutilated my inner beauty .

Love to all Ami xxxxxxxx

[janiedelite]

Oh!

I hope you can get this thing fixed soon! Thanks for keeping us updated. Janie

[corina]

i have been calling ami last weekend to wish her all the best with the mri and cheer her up a bit, but she couldn't speak at all. her husband mark told me that she is in horrible pain and that she can only communicate via written notes.

if you're reading ami, i want you to know that i am thinking of you and hope these docs will do all they can (and more as they owe it to you) to find out what is wrong and fix it as soon as possible!!!!! not being able to speak must be a very tough punishment for you, not to mention the pain you are in.

sending you all my best and a big hug,

corina : )

[firewatcher]

Corina,

Any news?

Prayers and positive thoughts for you Ami!

[corina]

i haven't been able to talk to ami on the phone yet, so i sent her an email! i'll try to contact her today.

thanks for asking!

corina

[firewatcher]

Any news on Ami's squeaky jaw?

[willows]

Hello all , sorry I haven't been about much but Mike has been very ill, then myself, then Mike then me again ...........................not much fun for either of us .

At the minute both Mike and I are on antibiotics as I have a huge abscess in my upper right side jaw and he has the same in his lower right side jaw

Mine is because of this jaw problem and Mikes is because he had his wisdom tooth out about 2 weeks ago and it just will not heal .

I've written more on whats been going on here in a post called ' sleepless in Plymouth '

Willows.

[willows]

Its now been some weeks that I've been on antibiotics and I';m still not right .

Today I went back to the hospital to see about my jaw and had a surprise, the consultant had a poke around and found a huge head on an abscess on my upper jaw line , he felt under my jaw and said that there was a small lump of some sort , but then dismissed it as he found a 'nobble' of filler sticking out near to the infection and decided that this was the cause of all my weeks of pain and infections ...........so even thought he knew I had an abscess ready to burst at any time he said I had to go to my dentist and get it sorted as it wasn't a 'Max-Fax' problem.

So driving to the dentist , which is just 10 ins from the hospital I was told to come back in three and half hours to get it sorted out ..............ahhhhhhhhhhhhhhhhhhhhhhh! this meant I had to drive both hubby and son back home ( 30 miles ) then drive back to the dentist ( 30 miles ) then back home again ( 30 miles ) not a nice thing to have to do when you feel ready awful and your jaw is about to explode!

Having gone back to the dentist I was seen within minutes and he filed off the tiny little nobble of filling and explained to me that there was no way that that small section of filling had caused all the infections I've had in my jaw and the abscess , when he had stuck a probe in it to rupture the head and cleaned up such a lot of pus that his assistant looked a bit queasy , but what he found was interesting as the swelling wasn't like a normal abscess and it didnt trek off to the root of any tooth , it was just there !

My dentist is now saying that it isn't his fault and that the infection is from another source not the teeth or roots etc , so Ive got to back to see fax-max again and get this sorted out soon.

I'm now on to sets of antibiotics and just a couple of hours ago the swelling in my jaw was very painful again , so with a miners lamp stuck to my forehead and a whole load of tissue pushed into the right side of my mouth I used a sterile surgical needle and ruptured the thing again ...............OMG more muck and pus came out of the thing , but its now feeling a bit better and its flatter than its been for 3 weeks or more .

With only 4 days to go until Mikes 18th I'm so worried that my jaw doesn't suddenly kick off and have me ending up in hospital , for this is the sort of things my body likes to do to me , so fingers crossed that I stay well and that this last lot of antibiotics ( 500 mg of one sort & 250 mg of another 3 times a day each ) will kill that ever is lurking in my face and 'give a girl a break ' for once .

Ami xxxxxxxxxxx

[janiedelite]

I was saying "ahhhhhhhhhh" with you! What a horrible journey! So sorry!

[willows]

I've now 'emptied my abscess around 7 times and every 6-7 hours I have to check to see if its grown in size again full of muck this is not a very nice thing to have to do I can tell you and my right back upper jaw is in so much pain now .

I've just one more lot of tablets to take at 8 am today and thats it , so if the abscess is still chucking out pus , well I have no antibiotic cover at all from then .................typical isn't it , no one will take responsibility for the infection !

Max -fax at the hospital say its not there department as its on the gum , my dentist says its not his department as its nothing to do with my teeth or gums .......he says its my jaw and that the Max-fax people are not seeing it and as for my own Doctor , well he says its either a max-fax or dental job and not a medical ....................hello you lot I'm the person stuck in the middle with an infected jaw, gum, face or whatever and I'm the one who's in such awful pain ans has been for 20 days ..............yes 20 days of swollen face , rip roaring spikes of shooting pain up the face , swollen jaw bone , tender gums, bleeding gums and teeth and now a huge abscess and I should think around 3-4 tablespoon of infected pus have come out of it now .......................so are'nt we the lucky doctors and consultants and dentists who can go home and eat and drink properly and of course go to sleep without waking up to empty the abscess because you cant stand the pain anymore .

PERHAPS YOU SHOULD THINK ABOUT THE PERSONS WHO'S SUFFERING ALL THIS ...............AND NOT WHO'S TO BLAME OR WHO'S DEPARTMENT HAS TO PAY TO CLEAR UP THE MESS.

Am I angry ????? you bet I am with just today to go before family start arriving for Mikes big day I'm feeling like .................dogs do-do , have pain down the whole of right side of my face to my jaw line and am so tired that I'm way behind with everything I should be doing , including collecting the cake which I will do tomorrow after I've taken Mark to the hospital for another check up .

So , if there is anyone who watches over this earth , please please give this girl a brake and let me have just one day without pain and all the other bits that goes with it , all I want to do is give Mike the best 18th birthday he could possibly have and give him a day to remember .

Ami xxxxxxxxxxxxx

[firewatcher]

Ami, I don't know if this will help, but here goes. When I had my wisdom teeth out, I developed three dry sockets (nasty black infected ones!) I was told to mix almost hot salt water (as much salt as would dissolve) and squirt it into the socket to flush out the gunk. It was the only thing that helped. It didn't hurt any more than the infection, smelled awful, tasted worse...sorry. But it did help. Maybe try that? The trick is to get one of those long, curved point syringes and blast it into the opening!

You might try swishing whiskey, just don't swallow! I know its a waste, but the alcohol should kill the bacteria, just don't get the cake after you do it! If you get pulled over, they'll get you for drunk driving for sure!

May you get some relief and an responsible doctor soon. Take care!

Prayers from over the pond!

Jennifer

[willows]

Last Friday morning the pain in my jaw/face etc became so bad I nearly passed out .

I called my own doctor who told me to go to A & E and refuse to go until someone had seen me from max-fax and done something about all this .

On arrival at A & E I asked to see the registrar on call with max fax and within 10 ins I was rushed from A & E reception to x-ray then to see the registrar , who on seeing the state of me was shocked

He took me to see the x-rays and the infection which was around the one tooth had now spread to two , then into the actual jaw bone and into the sinuses as well , no wonder he said I was in so much pain !

I was given yet another course of antibiotics and told to come back on Monday at 2.00 pm and then he himself would take out the tooth that had died and sort the jaw bone out as well .

So all through Mikes 18th birthday I couldnt eat a thing , I 'could'nt drink and kept running a temperature ..............but eventually Monday arrived and after 4 large injections into my gums and the roof of my mouth the registrar set yo work and with a very loud cracking noise 90% of the tooth came out .............along with a jet of puss and other stuff .............OMG yuck

Unfortunately a small amount of tooth had broken off in my jaw bone , so he had to drill it out ..................mmmmmmm, at this point all I can remember was the nurse saying to me 'open your eyes ami...... are you Ok , ami , open your eyes' I must have blacked out for a short space of time as I cannot remember him taking out the rest of the tooth at all.

Its now 3: am in the morning and having come home and gone to bed as I felt just so ill , I've had to get up as my face is killing me and all I can taste is blood , my head is pounding , I'm dying of thirst and my right foot is killing me as well ..................er right foot you say ??????????

Well , Mikes birthday party was a great success and I'm hoping to send the first 3 photos to be put in our photo section later today ( if I'm still able to get about ) but whilst I was talking to Mike one of his mates who was sitting opposite him moved his chair slightly back ( I was standing beside this chair apposite Mike at the time ) he lifted the chair up and without looking ................put the wooden leg onto my foot then as he was almost standing at the time .............just chucked himself back into the chair ..............all 12 stone of him .

NO , I didnt scream , I heard loud noises in my head and thought I was about to pass out , but hung onto the chair back and in a quiet controlled voice asked him to move his chair .

Getting back to mark I whispered what had happend and asked him to come to the loo with me to check out any injury .

My foot from my toes to my ankle joint is now black/blue /red and you can clearly see in amongst all the other swellings over the foot , the imprint of the chair leg base..............is it painful??????

Well all I can say is that I cannot get a shoe on properly and I cannot bear weight on it and walk any distance , if that answers the question !

I didnt tell Mike until the next day , not that he would have missed it ! and he was so shocked at the state of my foot .

So in all I've had a really poxy weekend , Mike had a really brilliant weekend and Mark , well poor old Mark just had to battle along as best he could , because guess what ???

He went down with an infection two days before Mikes party as well ...................I tell you this house is jinxed .

Ami , Mike and Mark all hobbling about .xxxxxxxxx

[janiedelite]

I just keep hoping with you that your "jinx" lifts! I'm so sorry for all you're going through!