I've read some of your past posts and I wondered how you both are? Did you get over the osteomyelitis? I am battling infection now after a wisdom tooth removal, bone graft and retained root tips removal. I hope you are okay.

Dear Sae,
I hope you don't mind my intruding. I have been having severe dental problems and unfortunately at the moment where I am living, there aren't any experts able enough to diagnose it. I have often wondered whether it isn't osteomyelitis. What were your symptoms? How did the specialists finally locate the problem? I have had a ct and an MRI with no luck. Maybe you could help me by reading my post "need advice" by traumatised and giving me some suggestions.
Thank you,
Best regards,
Jane

I am so sorry, Jane, for all you have gone through. I read your post and you are suffering so. I am not sure if I have osteomyelitis and was researching some of the other posts and came up with the 2 names who definitely had O. My journey began when a wisdom tooth was extracted 11 months ago and dentist put bone graft in. Had immediate pain which got worse and dentist blew me off and said it was nothing. Pain was like screaming pain, could not eat, sleep and cried a lot. Was put on many pain pills, antibiotics by other dentists and still no let up. Was so sick, could not do anything, could not hold food down, developed heart pains (which they said was due to all the medications). Finally went to another state and doctor said it was either O. or retained root tips. Sent x-rays back to radiologist and he said it was retained root tips. I came back to my state to have the tips and bone graft removed. Twice was operated on since pain persisted. It has been 2 months now and although pain is not as bad, it feels warm, painful enough to take an occasional pill and gum is inflamed. Went to dental school to get dentures and OS said if pain persists to see him privately and he would send me to infectious disease doctor and then be put on a PICC line. Have an appointment Monday at dental school with another OS to have more teeth pulled and will ask this new OS what he thinks. MRI was negative, does not show up on Panorex, no fever but feel hot. I understand that MRI, Panorex, CT scans, blood tests or fevers are not always conclusive. One should have a scan with dye, also a biopsy. OS plans to do an alveoplasty in same area and I am rather frightened that if it is O. it will aggravate it more. I don't know exactly what the symptoms are and that is what I am trying to learn. I wish I could help you more as I know what that pain is like. It is sometimes difficult to tell between trigeminal neuralgia and infections, I think.

Sae,

I am doing a bit better, but still fighting this beast. I just had more surgery to remove a piece of bone that was protruding.

Susan

Dear Susan,
Thank you for answering and I am glad you are doing better. It has been a long struggle for you and I wish each day will bring more improvement.
Sincerely,
Sae

Hello again Sae,

Thanks for your reply. Your pains sound familiar...I can relate with my heart feeling poorly except that I haven't been on any meds that should affect it. I generally feel ill all of the time and unable to concentrate on things as my head feels like some thing is living in it that shouldn't be there. I am at wits end from it because there don't seem to be any experts in the Czech Republic who have the ability to identify the problem. I am trying to find out who to turn to for a biopsy etc... I have scheduled a consultation at American Dental (can't afford more than a consult with them) and I am really hoping their so-called expert will have some ideas as to what it might be, whether it is osteomyelitis or not, or a suggestion where to turn to with regards to state medical care. I feel stuck and my whole life is becoming affected after half a year of this. I have had meds for TN and AFP which did nothing but make me feel even more dead but the throbbing and incredible pain that you described were still there so I am assuming that it won't just be a matter of nerves...maybe a bad combination of things...who knows...I only wish I knew. Let me know how things go and what you find out. The pains and ill feelings you describe sound so similar. Does your head ever fill up and change the pressure between your ears? Weird question, I know, my neurologist was baffled by this symptom and claimed that nerves just don't work like that.
Take good care,
Jane

Jane, No I do not have the head pressure feeling that you have. An oral surgeon was the one who did the biopsy. I hope the American Dental will help you and that you will be getting some aid to get over this problem. Financial reasons sent me to the dental school, as this thing has become very expensive. Please let me know how things turn out and I will do the same. Best wishes,
Sae

Edited due to identifying information..

A question for Sae, Jane ande Susan.

I was diagnosed with Osteomyelitis on the 3rd of May, after extensive x-rays, somesort of lab tests done on a scraping of the exposed bone and extraction from the abcess above a tooth. On May 4th I had surgery to remove all my upper and lower teeth, and portions of my upper and lower jaw bones. I never had any real site pain, I thought I had an abcessed tooth, and or a flu bug. I was wrong, I am still taking large doses of antibiotics. I hopefully will be done with them this next week. I have had several test done since my surgery to ensure they removed all the infection and they are all coming back clear.
My question to you all, is in all your post I read about the amounts of extreme pain you all are in. How long do they believe you had the infection before they began treatment for it? Jane, have you requested the different doctors to test you for Osteomyelitis? Also, do any of you know where or how you contracted this infection?

I really never questioned any of the surgeons, doctors or my dentist when they said that I was lucky. After reading your posts I now know just exactly how lucky I really am. I still have to have bone graphing done on the bottom right side of my jaw, a titanium plate attached to the bone some how and then hopefully implants to help with holding the lower dentures in their proper position. But compared to what I have read that you all have eperienced so far I am still on the lucky side of the coin.

My heart goes out to all of you. May God bless you all with comfort and ease.
Casey

Dear Casey and Mc,
Thanks for your supportive and warm responses. It has put a smile on my face and given me hope. The main problem at the moment is that I haven't really progressed in finding out what went wrong and what is going wrong. My big day is Monday, appointment at American Dental which is probably the most "modern" thinking dental clinic in the Czech Republic. The dentists that played their role in messing up my mouth etc... are playing airheads. I have been sent to the psychaitrist by the one who removed my wisdom tooth and added the icing to the cake of pain. The excuses and "everything is ok...give it time" are frustrating. Another "expert" says that my max. Mand. nerve has been aggravated and is causing the whole thing. Could this be possible? One good thing is my blood tests are totally clean and reveal a healthy young lady. Were your blood tests off when they discovered you have osteo... Casey? Thanx for your advice Mc. I will have a look at the website. As the day progresses and the pain with it, my teeth throb and then my cheek numbs and then comes the final blow, I slur. The nausea and earaches are a puzzle. As far as I know, according to Czech dentists, the problem is in my head and a shrink and acupuncture are the right cure plus downing litres of herbal remedies. The whole thing is like a bad joke. My fear of dentists has quadrupled. In response to your question Mc about infection...till I die, I will believe that the intial cause of infections (luckily it seems that the antibios I took earlier on have taken care of some of that but then again I heard that osteo...doesn't show up on blood tests??), was the first witch doctor dentist I visited who treated no 6 as if she were drilling a hole into cement, never mind the hygiene in this country.
Keep you updated...

Jane,
I dont know what test, since they did so many gave them the answer of Osteomyelitis. I had xrays, MRI, PET scan, blood drawn, bone and gum scrapings, and the fluid from the abcess tested.

I still have had blood drawn at every appointment ( 5 so far) at the infectious disease lab but they have told me it is to help monitor my system on a whole. The type of Osteomyelitis that I have or had (so I guess there are different types or strains) can not be detected solely through blood test. I have bone and gum scrapings, and a MRI at each visit also.

Good Luck at your visit and I hope you come home with some answers.

Casey

Hello again Sae,

Does your head ever fill up and change the pressure between your ears? Weird question, I know, my neurologist was baffled by this symptom and claimed that nerves just don't work like that.
Take good care,
Jane


Mine does!!!!!!!!

Hello again,
...........No progress yet again. Just wondering Dancersadie, do you know what your diagnosis it or are you in the process of finding that out? The ear pressure is incredible when it starts and nobody wants to believe it.

Take care,
Bye for now

Hello again:)
I was just wondering...Sae...Have you got any news about your condition? I finally got the one and only true expert in town last night. After looking at my xrays and discussing my syptoms, he pointed out an irregularity between my two TMJs. The troubling side is blocked from inflammation due to the discus being displaced by poorly executed dental procedures. It was clear even to my inexperienced eyes but everybody has been focussing on the teeth aspect and neglected the possibilities of it being a TMJ problem. The current diagnosis is TMD so I need to have a night guard made and see him again 6 weeks. I am a bit concerned with learning to live with the pain, the achy joints all over my body, being a walking barometer,nausea, earaches, sore eyes etc...It really is unbearable and to be told that "relaxing" is the main part of therapy makes me a bit skeptical about remaining sane. I will inform you of any further advances...
I hope you are feeling better and on the road to mend...
Take care,
Jane

Wow, that is interesting, Jane. Yes, please keep us posted of your progress. I am glad it is not infection and hope that this will solve the problems of pain for you.

Casey, it seems like you are finally getting out of the woods and hopefully this infection is now under control.

My update is, the school did not work out for me. They are too new to do diagnostic work and students are quite inexperienced. I had 5 teeth pulled there though and it was traumatic and took about 3 hours. I decided after that to find a more experienced doctor as I can't take any more trauma. My appointment elsewhere is July 20th so will keep you posted too.

Best of luck to all and hope our dental woes will soon be resolved.
Sae

Hello again,
...........No progress yet again. Just wondering Dancersadie, do you know what your diagnosis it or are you in the process of finding that out? The ear pressure is incredible when it starts and nobody wants to believe it.

Take care,
Bye for now

I have osteo. Because my upper jawbone is so unhealthy my sinuses are affected too.

When I ride in the car, or go from outdoors to indoors, I feel like I am in an airplane. Doctors get a scared look when I explain this to them.

Ask for an Three Phase Bone scan or a 3D ct scan. Many people with osteo have been told they have TMJ. Dentists do not know what to do, so they say TMJ. I don't believe you have TMJ.

Do you have pain when you touch your cheek on the outside?

Hiya,
Thanx for getting back to me. I completely understand what your are describing. My cheek hurts only when the pain is triggered and the whole cycle of agony begins. If the pressure is low outside, I think I am going mental because my ears pop, my jaw aches, as you mentioned my cheek is sore, my eyes go blurry and I sometimes think I am going deaf. When the expert returns, he will have a look at an updated mri that I am having done in 2 weeks. I am planning on mentioning to him osteo or NICO whether he can take that into consideration when examining the results as being the cause of my TMJ syptoms. He showed me where the problem is on my panoramic xrays...when you look at your jaw on pan xray, there are usually two healthy slight spaces. The space on the affected side is filled. What doesn't make sense to me about it being TMJ is the chronological order of things. I just don't see where that could have happened logically which is why I personally think that the TMJ is a side effect of an infection left untreated for a long time and bacterii affecting and moving on into my TMJ. I spent the last three days is sheer agony from dawn till dusk. The minute it starts, no matter what I do to relax, it won't go away until I go to bed. In bed, I have problems because I tend to sleep on that side of my body and so I often wake up because my cheek, jaw start to feel sore like you have been sitting on your bottom all day. My ears were half-deaf in phases, my eyes were blurring and I was beginning to worry I might fall somewhere when I was out getting my splint. On the way home on the bus, I was getting bus sick. I have had mild problems with car sickness since puberty, but never like this and never outside of a moving vehicle while just sitting and having lunch. Because the last three days were under the weather, I was experiencing severe neck pain which made it difficult to swallow and control my mouth when speaking. I thought I was going to gag to death. My whole body ached. Today the weather is clearer and the symptoms are milder, more bearable. What are you doing to cope with your problem? I am finding it difficult to work, I am self-employed so long-term sick-leave is out of the question. My private life has crumbled because everyone thinks it is all in your head and that a peck on the cheek isn't a problem. I am an active person so to sit on my bottom and wait for things to improve is impossible. I need my biking, gardening, walking etc... so when the doc said, just relax and it will go away, I burst out laughing.
Anyway, I hope you are better. What phase is your treatment in now?
Take care and stay strong,
Jane

Okay, well Thank you to one and all for the mentioning of the ear popping and strange sinus issues. I thought it was just me being the big baby that I am. Glad to know I am not alone there.

Sinuses, since they removed so much bone mass on th upper jaw and the sinus cavity sits just above that I had openings that were filled with packing while they healed. Even though they claim that the openings have closed I still can't seem to get my allergies under control.

And to the osteo, well according to the doctors and their tests I am in the proper ranges. I still have bad days but they are becoming further apart. My energy levels are coming back, I am sure that the vitamins do have something to do with that though, I can actually tell the difference when I dont take them. I dont get the feeling that my brain has shifted and off balance when I wake up in the morning after sleeping on one side or the other. I had my eyes checked and they said for the first time I didn't have to change my prescription there so thats something, although, if I turn my head to fast in any direction, its as though the rest of me has to catch up.
My biggest issue now is that I still have no teeth, (a vanity issue I know) I developed a whole different kind of infection in one of the incisions from the last surgery where they inserted a rod and plate for my new jaw. So I am on a new antibiotic, soon they are going to have to run out of ones to give me. And as if that is not enough the remaining bone is not accepting and regenerating to the new metal so that is yet another issue. The best thing about that situation is that its not painful, at least not yet. Hopefully I didn't just jinks myself with that statement. The worst part I am not even allowed to wear the immediate dentures that I originally had. They seem to cause me to heal slower and cause more sores and issues then what they are worth.
That and the fact that they are way to big. I am a 5'6, weigh now about 120 lbs, my husband is 6'2 weighs 220 and after a bit of whining I got him to try my dentures in his mouth, they were huge on him too. The gum area is really thick but the distance between the outside of the horseshoe shape is almost a full half inch wider then what his are. Then after some creative measuring we discovered that my mouth is about a full 1/2 inch smaller from the outside gum line then his. Making a total of an inch. So hopefully as soon as this new infection has healed some, the bone graphing and metal have decided to become friends and bond I will be able to get new teeth made and they will fit. But until then I am still eating baby food. Yippee.
Best of the night to all, Casey

Hello again,
I had my first physiotherapy session yesterday and the facial massage was very pleasant but...now my lower jaw bone hurts more than before I went for the massage. Did any of you have the same experience? How did you feel after your physios if you had any? The mandibular and my teeth are throbbing and itchy. My masseter is definitely tight and overdeveloped. I feel like a freak because she thinks it is all stress related. I am really baffled now. I know that it was only my first massage but I thought it would atleast remain stable afterwards and not get worse. She mentioned using electro...next time. Any experience with that? The expert advised me not to open my jaw too wide and the therapist made me open my jaw wide 10x in a row and said to do that every day 10x in sets of 10. She aggravated my masseter and mandibular even more. I noticed that she had me down as ATFP which quite frankly annoyed me because I knew she was heading for the "it is all in your head and stress-related" theory. I left annoyed and frustrated wondering whether anyone can really help me in this country. If it it truly a matter of stress, then why didn't it happen a long time ago when I was living in greater stress than now? Why in the world do my teeth ache? I never used to grind my teeth at night until January of this year and that was because of the pain and symptoms that I had already had and not because of stress. It just doesn't add up tp me as being an issue of stress. Certainly, stress does play a role in it but I think that my pain is causing stress rather than the other way around atm because of the feeling of helplessness and "no way out."
I just had a little filling done on the other side on my lower 2nd molar and it seems to me that whatever tooth a dentist touches starts to feel arthritic afterwards.
Sorry to trouble you with questions...I guess I am just a bit puzzled as to what is going on with my head... I just might need a shrink from all of this soon!
Thank you,
Take care,
Jane

Hello again...
Just wondering how you are doing? Sae...how did July 20th go? Any news? I had my second MRI done especially for TMJ and the MRI docs couldn't see anything unusual. It is maddening. I don't know whether to believe the dr who said that my IAN us damaged that the best solution would be to "kill" it, or the other dr who says it is TMJD. All I know is that I feel dreadful...still. Decompression has also been suggested. I still am in the dark about what it is. It definitely isn't drainage. Has anyone tried electro therapy?
Thanks.
Hope you are doing better,
Take care

Hi All,
First, I am so sorry for all the pain everyone is suffering. It is such a drain and life changes because of it. The doctor is sending me for a gallium scan next week. He injected novocaine in the pained area and it made it worse. My jaw is so sore and the spot where the bone graft/root tips were, is very, very painful. I sure hope the scan finds out what is wrong. If it is some type of nerve damage, then he said it takes a very long time to heal. I live on baby food.
Bless you all and I am praying that we all find a solution and become pain-free.
Sae

Hey guys I dont know if you remember me but I was posting back in spring about my jaw problems. I want to thank you guys for mentioning osteomyelitis....That is what it turned out to be and because of you I feel I am getting better now. If I hadnt mentioned Osteo to my ENT in the first place I dont think I would have ever been treated. Well its been a long ride (not as long as some of you) but I think I am getting over this.

The first debridement I had didnt work and they only put me on Clindamyacin. I never really felt like I was getting better. The pain was still there are swelling got worse over time. Finally there was more discharge and they sent me to a Medical College. That was in late May.

The Med. College did a debridement/scraping and I was i the hospital for a week! They put me on 2...yea finally...antibiotics and since then I have been feeling good. It has been almost 9 weeks and no pain, swelling or discharge. Only a little discomfort around the healing hole in my mouth were scar tissue is forming/has formed. I guess this is to be expected???

On my last "dive" with HBO therapy on Monday and docs will see me Weds. for a complete checkup. Every time I see them they say from the X-rays it looks like my jawbone is densifying and growing back. Boy I hope this is almost over.

All the best to ALL of you.

Dear SCguy. I am so happy you feel better and that everything looks good. You have been through a lot.

Does anyone know if a Gallium scan can rule out Osteomyelitis? It is a 3 day procedure - they first inject a dye and then hours later you go through a scan and then the next two days you go through more scans. I am in a lot of pain and hope this will tell once and for all what it is. I can put no pressure on it and pain continues through jaw and down neck. My best to all and thanks for all your help.

Dear all,
I am pleased to hear that you, ScGuy, has finally found a way and relief. That's excellent! Sae, one question, on xrays and scans, does your jaw look in place, inflamed or dislocated in any way? I was on a little trip by car today and it triggered the most incredible pain again. I came out of the car half deaf and with blurred vision plus a bit car sick. My entire jaw from left to right throbbed and my right cheek went numb. Insanity.
I am struggling finding help in this country. At the moment, everyone has wiped their hands clean and keeps passing me on like a hot potato to another dr. I am concerned about the jaw "expert" I saw one month ago because he has ruled out neurology and said that my teeth don't interest him, that it should be my endos concern. His only interest is how my jaw works so I am beginning to get worried about ever finding a way that will rule out osteo 100%. Nobody has mentioned trying more particular scans or grafts.
This website has also helped me a lot. It has given me the courage to fight and the knowledge of techniques and equipment that is available in the medical realm. Thanks everyone. I wish you all good health, as little pain as possible and I have my fingers crossed for you Sae.

Dear Traumatized,
I think the gallium scan will show inflammation that normal x-rays will not show. I have been passed around from doctor to doctor too. My pain is about 2 inches of jaw bone and no pressure can be put on it. I have had it for a year. Root tips were left in by a dentist and bone graft put in and it became infected. Pain was excruciating. Became very sick and nauseated and I was basically ignored by everyone. Finally the root tips and bone graft were removed but still have been left with terrible pain. It is either nerve damage or osteomyelitis but trying to get a diagnosis has been very difficult. The pain at times radiates down into my neck and up into my ear. I have Sjogren's which causes dry mouth and dry eyes and swallowing is difficult. Also had a salivary gland removed due to a mass. Do you take any pain medications? Have you been on antibiotics? Regular x-rays and MRI showed nothing, but I understand that if you are on antibiotics the tests don't always show the problem. I think the dye scan is the best and I will let you know what happens after I get all the tests done. An Oral Surgeon ordered that. Several doctors mentioned osteomyelitis to me but did not do scans, only oral antibiotics. I have had two scrapings but pain came back. This has been going on for a year. It sometimes feels like jaw is broken, sometimes a lot of pressure, and any pressure sets it off. Like you, I want to rule out Osteo. 100%. The neurologist said he would not medicate me until I ruled out Osteo, so I have been running in circles trying to get the scan and finally found a doctor who ordered it. Have you looked into trigeminal neuralgia? I believe that is like an electrical shock which is extremely painful and it does affect the ears, cheek and face. Then there is severed nerve and nerve damage and then, of course, Osteo. I am sorry for all you have been going through and hope you find a doctor who will give you a gallium scan and the order has to state "to rule out Osteomyelitis." You might have to be a little bit demanding in a nice way to get this done. One has to keep trying and I know it is difficult when you are not feeling well and are in pain. I hope SCguy will keep us posted and you too as it is of great help to us and others to know how to handle things and get help. My prayers are with you. Sae

Hello again...
Thanks greatly Sae for you suggestions and support. Nobody has ever mentioned gallium scans around here because they all say that MRIs are the most accurate and that if nothing is found on one, then nothing else will work. It is so incredibly frustrating dealing with the drs here. The minute you seem slightly informed, they are annoyed and back away. I have decided to meet with one dr at emergency on Wednesday, who once offered one week in-patient treatment which I refused in May because he wasn't able to see any problem on the xrays and I wasn't quite up to lying in a hospital bed like a guinea pig. I still do not see that as an option but I will put pressure on him to take a proper look at my Mri and suggest a gallium scan. I am quite curious because he couldn't see the problem on the xrays last time with my right jaw which looks blocked and his colleague who is still on holiday and works privately (intimidating costs for his service) pointed it out to me on the xray. I looks like I will finally get to a proper neurologist who is very thorough at her work. Everything works through connections here and too much beaurocracy slows things down.
My thoughts are with you all,
Take good care,
Jane

Forgot to mention...Sae... I haven't been on antibios since May and my last MRI was a week ago. Trig Neuralgia was ruled out as well. One dr said that it is IAN damage but was puzzled by the jaw problems and the car sickness, ear and eye problems associated with it. What scares me most is that without a gallium scan, you can live labelled as TMJD patient for years without any relief and with osteo manifesting itself. I have insomnia from the fact tha I can't sleep on that side of my face and it throbs and hurts to touch which is why I am going to persist in ruling out osteo (the insomnia is taking its toll on me as you can read from my scattered thoughts...my concentration is horrible and I often feel disorientated). I noticed something scarey lately as well, my fingertips often numb. I feel like i am disintegrating.
Sorry for my rambles...I have found being in touch with you all most helpful and more so than going to the drs.
thanx once again,
Jane

Hello once again,
I feel a bit caught at the moment. All of the symptoms I have are quite unbearable and chronologically don't add up to what a dentist just suggested. I personally believe it is Nico or TMJD but now I have been told it could be the other three wisdom teeth that are left in my mouth. Is it really possible to feel so crummy as if you have osteo or tmj and yet it is just your wisdom teeth acting up? Has anyone ever gone through this? Doesn't sound right to me..What do you think, those who have read my other threads?
Thanks immensely, your opnions might save me from going ahead with coughing up a lot of money for a check up with this dentist. It has been arranged through a friend who thinks they are doing me a great favour...

I am sorry but I dont get what could be wrong with the three wisdom teeth that could be causing the type of pain that you discribe. I can see the osteo causing problem for those teeth though. I have heard of people having some serious health issues that all started with their wisdom teeth having problems. But I dont know if the popping in the ears, and the sickness to your stomach would be considered as symptoms for that.

IMHO I think that I would at least go and see what this dentist has to say.

If you decided to have those teeth pulled I would ask that since they are doing you such a great favor if they could check to see if the bone surrounding those teeth could be tested for density. I was told by my team of doctors that my jaw bone just crumbled when they went in from the osteomyletis. Just a thought. Dont know if this is even possible but since the wisdom teeth are usually so deep into the bone I dont see why not.

Good Luck
C

Hello again all,
CARAT...I have the same thoughts on the suggestion...nonsense...so I tried to be a bit more assertive today and woah...what a day. I had a dental appt and the dentist said that my teeth are beautifully healthy. He wasn't able to give any explanation whatsoever for all of the pain. I decided to pop into the most recommended dental clinic which is covered by the state. Unfortunately, I bumped into the expensive oral surgeon who saw me privately and diagnosed TMJ. He was definitely irritated by my presence at a state funded health care centre. He had no choice but to see me. I originally wanted another oral surgeons opinion...oh well... He humiliated me. Laughed at my suggestion of osteo and when I mentioned my painful salivation, he had a hearty good laugh and said "nothing unusual, we all salivate 1,5 L/day" and that was that. My lower jaws cont to ache and all the teeth that have recently been touched. I still cant bite down on my rc tooth which was done in March. The manidbular area it sits on aches and is warm to the touch, my eyes are sore like when you have a fever and my body aches with it but no temperature. Nausea...none of the symptoms have changed since I started posting My glands are swollen and painful. I wear a night guard and things have just been getting worse. I am truly p.o ed with the health care here. He refused, so have others, to do a bone scrape and a 3d bone scan saying that osteo patients "look" differently. They should be swollen in the affected areas and he said I am not. I have lost some weight in the past half year from it all so he assumed that I must be stressed and that I must be a hysterical woman (he lookec at me as if had a disease) so he prescribed antidepressants that he says relax facial muscles...and he sent me home. Brilliant. Anyone have any experience with Amitriptylin? Supposedly no side effects... that is what the neuro said about Gabaptin or Neurotin...it made me seasick for a week.
Once again, thank you all for your help and support,
Take good care...

Traumatized;
so you are to take antidepressants now but not for being depressed....please tell me you will go somewhere else if that is true? I think it's odd so please tell me I read it wrong:)
Take care, good luck, don't give up!

chatty

Okay, does he think that you are depressed and that is what is causing your dental/mouth pain???? That makes even less sense to me, then pulling healthy wisdom teeth.

If there is nothing wrong with your teeth according to this dentist also then how about a ear, nose throat doctor???? I mean maybe an infection is in your ear and its traveling causing pain in other areas. I am sure that you already went this route before but I am just amazed that you are having physical pain with physical symptoms and they want you to take an antidepressant medicine to help????

Good Luck and let us know

Casey

Dear All,
Traumatized, I really wish you could get a gallium scan. I found out today that I do have osteomyelitis. The MRI did not show it, the Panex did not show it. I had swelling at first from surgery but have had no swelling since. Constant pain was my clue. You must not give up. Are you able to find a doctor on the Internet in your area where you could ask about a bone scan? Would your hospital be able to take one. I think you should insist on it. Antidepressants are now what you need. You must find a doctor who will listen to you.

My concern now is the doctor put me on 300 mg Clindamycin for 6 weeks. I mentioned the PICC line but he said he hoped we would not have to go to that. He also ordered blood tests before I started the antibiotic. I have been on Clindamycin and other antibiotics before but not for six weeks or at this dosage. Does anyone know if this, in fact, can get rid of the Osteomyelitis? He said the infection is not very much (it sure is painful though - can't imagine what it would be like for others who have a lot of infection).

Chatty, you have been through so much. Don't know how you handle it all.

Take care everyone.
Sae

Traumatized
I am sorry for the typo, I meant to say "Antidepressants are NOT what you need, I didn't mean "now." Sorry, I am a little rattled at my news.

Hello again,
Thanks for your responses. Te anitdepressant should help with the muscle spasms and clenching. After my first dose, the pain is still lurking in the area where the wisdom tooth was and it shoots into my ear. The muscles around it are more relaxed which helps me pinpoint the painful area which was getting difficult to find under all of the muscle spasms. Maybe it will help show the expert that even with the muscles relaxed, the pain, the throb is still being emitted from that area, the lower mandibular in the back corner. I am contemplating going to see a better orologist to have all of the glands in the area checked out to make sure that my salivary glands aren't contributing to it...again, it will take time to arrange it all via a contact I have, there is no other way in this country. It is pathetic.
Sae, in a way, it must be a relief to finally now and prove that it is osteo. Now your road to mending should start. I was offered by a hospital contact (an anastesiolog...can't spell that) that if I wanted to test whether or not it is osteo, without a scan...a bit risky, that they would put me on an antibio drip 3x a day to get rid of it. If it isn't so widely spread, it should work. I have everything possible crossed for you. Unfortunately, every time I mention bone scan to a dr. they argue that their is no point that I clearly haven't got any chance of having osteo. When I look back at the method of extraction the dentist used, I clearly have a chance at having developed osteo. I didn't see any blood during the extraction which meant that she had artificially kept the socket dry from blood using whatever they use. It is a poor method which increases the chances of getting osteo, plus, I am a very poor healer. To add to it, my first molar was open without the pulp and all, for 3 months which led me to believe that some bacterii could have got in which was causing the tooth to feel like it was trying to shoot out of the gum.
All of the top notch experts know each other here, small country, so it is quite difficult to get around and gain new opinions without the previous one affecting the next.
Take good care everyone,
....

Dear Traumatized,
I understand your frustration as how much pain can a person endure and convey to their doctor what is wrong and then be dismissed like a naughty child. I am up at 5:00 a.m. with pain. I've started the oral antibiotic and although I am somewhat relieved to finally have a diagnosis, I keep thinking that it might not work because everything I have read states that a PICC line and removing the dead bone is the only way to get rid of it. I try not to be angry because anger zaps my strength and I need my strength but deep down I feel a lot of anger. I too had infected glands, swollen glands. But that was before the wisdom tooth removal, which I felt was the start of the osteomyelitis. I have criss-crossed the state and went to another state to try and get help and this just should not be. I pray that you will soon find someone who will listen and give you a gallium scan. They just don't know how hard it is to live with pain. Thank goodness for this board.

Here a just a clipping describing some symptoms...the main problem is that TMJ specialists are often blind to osteo...anyway, I still believe that my tmj is the result of most probably, osteo:
Osteomyelitis- Restricted jaw motion, pseudoparalysis; Soft tissue around the inflamed bone, which is hyperemic, warm, edematous, and tender. Actinomycosis may also present with a localized swelling at the angle of the mandible.
(Wow, I have all of the above.....My face is warm in the area that I think is affected. Sae...is it your lower or upper mandibular? I came across an article that said that it only affects the upper which struck me as odd. I heard about just one expert in the whole country who specialises in osteo. In order to get to him and have him spend more then 5 mins on me, I need to pull some strings. Until then, I have no choice but to continue with asserting my opinion to the TMJ specialist and wiring him up. I know that I annoy him because i am not convinced with his diagnosis. I believe that part of the problem is TMJ and then the heat, throbbing and tenderness are osteo related.
My fingers are crossed for everyone,
Take good care,
Off to the battle field

The clipping described exactly the symptoms I have. The bone pain feels deep and it is in the lower right mandible. The tissue is warm and tender and and I have the pseudoparalysis. I feel so strongly that you have osteom. and hope you can pull those strings and get to the right doctor. Why do they make it so difficult for us to get help and that we have to almost fight them to be heard. I can't imagine what this would be like in a foreign country. Don't give up. You might have to take a copy of that article with you. Maybe you could look up "gallium scan" on the Net and take a copy of that, as well as looking up "treatments" (which I think I will do) and take that too, although some doctors cringe when you mention getting information from the Net, which is narrow minded.
You are in my thoughts and will say extra prayers for you.
Sae

Sae, according to what my doctors have told me the only cure that is for sure is the pikk line with IV antibiotics for 6+ weeks and to remove all the effected bone tissue.

Tramatized, it can affect the bottom jaw bone. I have the past 5 surgeries and lack of bone to prove that one.
Casey

Casey,
Thank you - that is what I mentioned to the doctor. I am afraid this will be another six wasted weeks for me and then more drastic measures will need to be taken. I am so down. I don't know how you keep going with all you have been through. I wish we could give names of doctors on this board. I've been to so many and they have never seen a case of osteom. All that I have read on treatments states the same as you said, except for one time I found a site that said some of the newer antibiotics
go straight to the bone eliminating intravenous but they failed to mention what antibiotics. Just about everyone is put on Clindamycin and it doesn't seem to work.
Casey, I hope all goes well with you and that you soon will be out of this nightmare. Are you still taking antibiotics?
Sae

Sae, I was on IV antibiotics from May 4th until the 25th of July when they removed my pikk line. My maxillofacialist told me that I am the 6th patient that he has know with osteo, and all of them have been within the past 5 years. So I guess it is becoming more common unfortunately.
My oral surgeon had just came from a conference that osteomyelitis was brought up. Otherwise he would never have thought to consider my symptoms as osteo. He would have said that I had a form of TMJ and maybe referred me to a ENT for further testing.
I was very lucky.

Hope all is well with you,
Casey

Casey:

What state are you in. I'd love to find an OS who would treat my prob.

Tx, Lisa

Casey, if it had not been for this board and people like you, I would not have known about osteom. and what to ask for or how far to push to get testing. I just hope you will soon be well again and have teeth and can enjoy eating. I sometimes wonder if I have O. in the upper left area too as my teeth were removed after horrific pain and 5 failed root canals and crown lengthening. I still have pain even though its been about 3 years. I called the hospital and asked for the report of my scan and don't know if they looked at other areas or just the one area. When I read your posts, I should not complain as you have been through so much. Best wishes to you,
Sae

I totally agree with you Sae. If it were not for the people on these boards my denstists/doctors would still be treating me for TMJ!! LOL!! It took about 3 dentists, 3 oral surgeons, an ENT and finally treatment from a competant, caring and driven group of Doctors at the medical college of Ga., but I do think I am better now. Still have a little scar tissue which causes a little uncomfort every now and then but no constant pains or swelling like before. I was on IV for about 8 weeks...straight Clindamyacin and it didnt work. Then they took out more bone, scraped really well and put me on C. and Levaquin and I think I am better now. Been off the orals for a little over a week now and i feel great. Keep your heads up IT WILL GET BETTER!! I promise you.

Thank you SCGuy for your update. I am rooting for you that you are now completely healed. The way I understand it, you were on oral Clindamyacin and that did not work and then you went to IV for 8 weeks, then had bone removed and more scraping and then went on oral C. and Levaquin? Did I get that right? I am trying to figure out if my treatment plan of 6 weeks of Clindamyacin will work. OS has not suggested bone removal or scraping and didn't think I needed IV. By the way, I've had this for a year now and like you have gone to many.
Regards,
Sae

Edited due to identifying information..

Susan, thank you for answering. I keep wondering how you are. It has been a long period of suffering for you. The OS said he called an infectious disease doctor, at my doctor's request, and the information he was given was to use 6 weeks of 300 mg. Clindamycin and then wait 8 weeks to see if it comes back. Yes, I am in Phoenix. I do like my OS - he seems to be trying.

Susan, do you take sublingual B-12 2500 mcg. for nerves? It is supposed to help heal. You can get it at Walmart. You put it under your tongue and let it dissolve.
The reason I know this is at first my problem was thought to be nerve damage.

It has been very difficult trying to get tested for this. A blood test was taken but have not received result. Thank you for caring. I'm concerned about you too.
Regards,
Sae

Sae,

I am still going to encourage you to consult with infectious disease on your own. I don't know who your oral surgeon is in Phoenix, but there aren't that many good ones here. Don't trust anyone with your health anymore. They failed you to begin with by misdiagnosing you. Clindamycin is a good antibiotic, but you have had this too long. You should be on iv antibiotics. That is the gold standard for treating osteomyelitis everywhere else, why is it different b/c it is your jawbone?

Susan

Hello again,
I have to agree and give a million thanks to you who have all been most helpful on this board. I have a silly question to ask... what does osteo look like on an MRI? Is it white, black? I am struggling with glang problems today for a change. I feel like I am passing salt and yet the docs all said there is nothing wrong with them. During the most painful moments, my neck and the glandular area were less sensitive to the touch. Any one of you experience this on top of your throbbing mandibular? After three days of Amitriptylin, I am exhausted and showing most of the side effects. My muscles have relaxed but the throb persists plus the discomfort in my salivary glands. I feel like something is living in the problematic area. At the moment, a lot of pain and a squeeky liquid feeling just under the ear where the mandibular nears the ear near the parotid gland. Feels as if some drainage is being attempted but with nowhere to go except for a pimple on my neck in the area. Plus a light rash over the affected areas. Any ideas? The docs all think I am nuts and the Amitriptylin will sedate me enough to stop pestering them.
Thanks immensely. Praying for you all that the pain and suffering will end.
Take good care,

Edited due to identifying information..

Hello again...
Thanks again in advance. I have to say, I am truly baffled by what is wrong with me. I am also extremely annoyed by healthcare individuals in this country...I received an SMS, can you believe it...an SMS (I am still in shock at the lack of respect), from the so-called maxifacial specialist's nurse stating that he couldn't find anything wrong with my jaw on the MRI so that it isn't TMJ and that I should go to a dentist again. Geeeeeeeeze!!!! He makes me wear a nightguard and take Elavil which I have stopped due to side effects...and then he says it isn't TMJ via SMS. Well, I sent back an sms thanking him for his help and that his recommended dentist said that I have perfectly healthy teeth. Either his dentist is a quack or I am a hypochondriac. I am disgusted especially after feeling extremely ill again all day. The pain brought tears to my eyes and nobody wants to believe me, I am left feeling like a hypochondriac. I am beginning to wonder whether I have contracted some sort of infection from the initial dentist's drill. I have chills again, no temp though, my whole body aches, it is difficult to swallow because it is as if some fluid is in the way between the end of my lower mandibular and ear. I feel claustrophobic as if my glands have expanded and are putting pressure on my ears and teeth. I am miffed. I am beginning to feel that the aching teeth are a result of something else and not the other way around. I am also getting concerned about the fact that I have just about exhausted all of my resources for qualified doctors connected with stomotology in this country. There has to be sth on my MRIs that people have missed. Osteo, stone in gland, major abcsess, allergic reaction to dental materials (white fillings)...I don't consider myself a paranoid person, I just know my body well and this is not normal. I am very pain tolerant and have low blood pressure but have always been strong and overcome any feelings of faintness. It seems that I will have to collapse oone day for anyone to take me seriously.
Susan...I don't live in the US, central Europe so Pheonix is out of the question unless I can mail my cds to someone and sort the bills out later somehow.
Once again, thanks for all of your support and take good care,
.......

Oh Trama, I am so sorry that you are having to go through all the pain and then to have people in the medical community not believe you is horrible.
Maybe finding a dentist or oral surgeon outside of Europe that is willing to look at your test results and films by mail is the option you are going to have to take.

I could not imagine having to deal with all I of this physical stuff and also having to deal with trying to convince someone that they are real. So unfair.

I hope that you find an answer soon.

Casey

Susan, I am in the process of trying to get an infectious disease doctor for another opinion. It's been difficult. I appreciate your help and concern.

Traumatized, I am worried about you. I don't know if this will help you. I have had gland trouble, very painful, all in neck area. Went from doctor to doctor, (ear, nose and troat doctors), all said nothing wrong. I paid for a scan with dye on my own and they found a mass in my neck and then I went for 2nd opinion. It was confirmed and I had a salvary gland removed. I continued having these types of pains and finally discovered it could be Sjogren's. I thought too it was stones in glands. Went to a Sjogren's support group and they recommended a doctor and said that a rheumatologist is who I should see. The doctor performed a biopsy on my lip and confirmed that I had Sjogren's. My blood tests were negative. Then my teeth started hurting (have all capped teeth). The teeth became decayed under caps. Sjogren's symptoms are dry mouth, dry eyes. It leads to rampant tooth decay. It also affects your glands and other organs. You are more prone to infections in mouth, teeth, glands. Could this be your problem? Look up Sjogren's on the internet as that is where I first started to find out what was wrong with me. I never thought a rheumatologist would be the doctor to see. You must ask if he/she knows what Sjogren's is. Some don't. My parotid glands were swollen and I had much pain.

I feel that MRI's with contrast are the way to go or x-rays with contrast.

I am so sorry for your pain and the indifference shown you. Do not give up, as my Mother always used to tell me. I'm praying for you.
Sae

Hiya all,
Hope you are well or doing as best as possible...I went through another one of my hospital nightmares. I have been feeling ill for the past few days. I can tolerate a lot but yesterday it was too much. My whole body aches as if there is an infection somewhere. I feel like I have an abscess (es) in my mouth that are trying to get out and making my head feel full especially behind my ears. My jaw bones ache and the teeth on them (lower mandibles). I can taste drainage but I have no idea where it is coming from. I feel extremely light headed (I have never fainted in my life...quite a strong body in extreme situations even though I look fragile...maybe that is the problem because when a doctor sees me, I come across as a frail but healthy looking young woman) and my head feels like it is burning but again, I haven't got a fever only a slightly elevated temperature. My eyes ache and whatever it is, is forcing them to close and when I try to sleep, it is as if my head has a tremor. I have chills and tremors and can't catch my breath. So, yesterday, being it my third day following the unusual pressure in my glands the previous days as I mentioned in other postings...I called up a contact at one of the better hospitals in town and said "help!!!" He arranged meeting a doctor there and having blood tests and then either forwarded to stomatology or orology. Great I thought, things are rolling before I pass out. I got there, the dr. that was supposed to help me turned out to be a real arrogant you know what. He just felt my glands, didn't take any blood or x-rays etc...I was furious but feeling half-dead so unable to be agressive enough to make him see the importance of it. Because it isn't my native language either, my arguements sucked and he brushed me off like a hypochondriac that thinks all drs are stupid. I said to him, that whatever it is and if it is an infection, it is obviously not easy for the eye to detect, not that drs and dentists are stupid. Anyway, the friend that arranged it called the quack and told him to prescribe some antibios. I was generally accepted as a patient with osteomyelitis or osteonecrosis of the jaw and so I was given antibios Benemicin(Rifampicinum) 300mg 3x a day, and Ciprinol 250mg 2x a day. Plus, a bonus baggy of pain killers. Brilliant eh??? I left absolutely infuriated. Plus had to spend the next hour looking for 24 hour pharmecies that actually carry Benemicin which seems to be a rare antibio here. It seems pointless to be taking antibios orally for two weeks that will just mask the problem again for another two months and then it will explode again. I can only hope that the supposedly highly qualified dentist that I am going to see on Monday, will detect something on x-rays if it isn't too late, some root canals might be needed or extraction. Insanity. Anyone ever felt the symptoms I mentioned?
I hope that you are all doing better and more successful with your doctors. It seems like every time there is a glimmer of hope, some quack has to douse it with his arrogance.
Take good care,
You are in my thoughts,
.......

Traumatized,
Do you have infectious disease doctors there? I looked up your drug on internet but it is in Russian and we do not have the two named drugs you are taking. I think you should get an infectious disease doctor.
Worried about you, Sae

Hello again....
Thanks for your concern Sae. How are you progressing?
Following a day of heavy antibios, my heart has improved and my head is a bit better. The pain has concentrated to the jaw where everything started in the first place. The throb persists in the lower mandibular and again, leaving me feeling carsick on the way home. I admit, I am worried as well because no matter how much I beg for a blood test, it keeps falling on deaf ears. There are infectious disease doctors here, just difficult to get to them. The contact I am using who atleast got me in to emerge last night and convinced the quack doctor to give me the antibios, I know he is trying but I am getting annoyed at the speed of things. When I called him yesterday and said to him thanks for everything so far but that we haven't worked fast enough...he got the message which is why he sent me to emerge but I can't understand why someone doesn't take my blood. I am miffed. The antibios are going to just mask whatever it is that has been lurking in wherever it is for the last year. I am going to try and convince him on the way to the dentist's via the hospital again, to take my blood. I am afraid that by Monday the antibios will affect the results though. I am also concerned about Lyme disease because of the area I live in and some of the other symptoms I have been having and that have been gradually increasing over the past couple of years. The entire dental experience is just the icing on the cake. I have been suffering from quite severe rheumatism for my age (27) for a few years and more...
The full antibios names are Ciprofloxacini hydrochloridum monohydricum and Rifampicinum or Benemicin. Like I said to my friend who drove me to emerge and back...I felt half-dead yesterday, I would have been almost dead today and dead tomorrow. It felt like something was spreading and now I can feel the meds fighting it.
Thanks for your care,
Take good care,

Rifampicinum is one of the anitibiotics they had me on for the second series that I had. I also took Cipro, which is supposedly the strongest anitbiotic made, for about 4 weeks. I did feel alot less pressure while on the second series of antibiotics then from the first. So at least they are giving you something that might help some.
Not a lot of help I know.

Casey

Traumatized, have been having trouble with computer so hope this goes through. I am glad the antibiotics are starting to work and hope you will feel stronger soon and have some relief from pain. Blood test probably should have been given before you started antibiotics.

I feel a little better but have develped severe pain in upper bone now. Don't know what that means but will see an infectious disease doctor end of month.

Don't give up. We are rooting for you.
Sae

I am so glad you are seeing an infectious disease doctor. Are you allowed to post the name here? Not sure if posting of doctor names is okay. I think it is. If you don't mind posting initials, like Dr. Cr, or Dr. Sp with the first two letters of the last name if you don't feel comfortable posting the whole name. Just curious if you are seeing the same doctor I see. There are a couple of good ones in the area, but one or two bad ones. I hope you got in with a good one.

Susan

Hello once again...
How is everyone doing?
I had an interesting trip at the dentist's (another one). It was obvious in advance that she had made her mind up no matter what symptoms I describe to her, that it MUST be my upper wisdom teeth. I queried whether they can they really make your head feel like it is filling up with pus, discomfort when moving head because of fluid retention at bottom of skull, your neck go numb, your heart struggle to keep up, your glands feel like a stool is passing through and your parotid make you look like you are getting ready for winter, make you feel sick at the thought of food, carsick even on a bike or when sitting down? Ok, I can see that the glands, eyesoreness, earaches and headaches can come from it but what about the rest of it? She wanted to yank them out then and there but I refused of course. I prefer to be sedated to avoid getting into the whole turmoil of muscle cramping and spasms again in my face. One good thing was that she took a detailed x-ray of my root canaled first molar and discovered a chronic infection at the bottom of one root...no dentist had previously noticed it since March because nobody bothered to update the detailed x-ray. So, I allowed her to start the root canal re-treatment. I tried not to think about it at the time but the hygiene here just makes me cringe. Most endos don't use rubber guards (forgot the name of it...mind gap...plenty of those these days), she used her bare hands until her asst came who was gloved. I don't want to get paranoid but knowing how many problems I have already had, I would expect her to take extra precautions especially since she noted that I am the "sensitive type." I am still concerned whether part of the initial problems were some sort of bacteria from improper treatment.
Otherwise, I managed to presuade the doctor to run some blood tests. I am a bit worried that after 48 hours of a double dose of antibiotics that the results may be altered. It should have been done on Friday when I came to emerge half dead!!! But nobody listened and just said that I am a hypochondriac with psychosomatic pain!!! I am extremely frustrated and can only hope that retreatment of my first moalr will help and eventually, removal of my upper wisdom teeth as well. Should symptoms persist, my slate is clean and dentists and docs won't have an excuse to blame it all on.
I hope you are all doing better,
My thoughts are with you,
Take good care

Trama, I know that its not much but at least you had a new xray done that showed something of an infection. And although the antibiotics were in your system for two days, if its really osteomyelitis it wont effect it enough for them not to notice. My blood tests were out of wack for weeks after my surgery even with the picc line of 3 antibiotics.
Glad that you are at least being treated for something. Even if they dont realize it.

Casey

Susan, I don't think we can post names here and even if we could, at this time, I would not feel comfortable doing so. I haven't seen him yet. Hope you are doing well and am happy you have found good doctors to help you.

Trauma. and Casey, I wanted to mention that it is important to eat yogurt when on antibiotics. Or you can get acidophilus to maintain healthy intestinal flora at health food store.

Hope everyone is getting better every day.
Sae

Sae, you are about 5 yeast infections and 3 bouts with thrust to late with that advice but thank you so very much. I am one of the blessed souls on this planet that can not eat dairy products, and yogurt is really hard on me. I do on the other hand have an extra prescription for Nystatin in the cabinet.

Hope everyone is well,
Casey

SAE,

I understand your hesitancy.We don't know each other and I could be a wacko. (I'm not, but this illness almost drove me there.) I hope the ID doctor helps you get on a picc line and gets this cleared up for you. You have been fighting it a long time.

Susan

Susan,
No, Susan, you are not a wacko. I think you are very kind and intelligent. If it weren't for you, I would not have known about osteomyelitis and persisted in getting care. I, and others, thank you for your help.

Casey, you really have gone through a great deal and I'm so pleased that you are finally able to eat and not be in pain.

Trauma., I hope you are okay and will let us know how you are.

Best wishes,
Sae

So hows everyone doing? I had a quick question for any of you guys who have been struggling with this nasty thing for a very long period of time. How, in fact, do you know the infection is gone? I am not having the pains/swelling/slight fevers/ etc. etc. etc. that i had whenthis infection was going strong, but I still have minor aches and pains in the jaw that dont last too long. Could this be from all the extensive surgery i have had? (scar tissue??) Also, it sounds like something is cracking when I move my jaw a certain way, then i get a slight pain for a few seconds. Perhaps a small broken bone somewhere in my jaw is keeping things a little flared up? For any of you long term sufferers, what is the longest period of time you have been OFF antibiotics, and felt good.
Thanks

Well according to the ID doctor that I go to, I am symptom free and all my blood tests, MRIs and Gillium scans show clear but he will not say that I am clear for one year. Osteomyelitis is an infection that is capable of going dormant for short periods of time. So although I am not having any symptoms right now it is not sure that I wont start having symptoms again next week. He did tell me that 98% of cases that remain dormant for at least year never have an active case of osteo again.

Hope that helps

Casey

Edited due to identifying information..

Hello everyone,
Just been reading your posts and everytime I go through them, I get anxious. After one week of two antibiotics at their max. doses, my symptoms are coming back. I am running a low-grade fever again, aching body, eyes, ears and two throbbing mandibulars which make it difficult to fall asleep. I am beginning to wonder what is living in my mouth other than the regular bacteria you find in their. My glands acche off and on and are puffy on and on again which I can tell when i start biting my cheeks. Going back to the dentist tomorrow. He will check the retreated root canal and my other teeh again to make sure they really are healthy. I have pimples in my mouth again. On the x-ray the bone infection surrounding the rc tooth was quite extensive. I don't know whether or not to just have it pulled...but for some reason I don't think it will solve everything. Dental infections are taken very lightly here so I am struggling getting proper care. My new dentist won't be enough and the specialised dental clinic (the "best" in the country) sent me to the doctors. Nobody wants to help it seems. The person who gave me the antibiotics said it was the last thing he could do for me...haven't heard from him since. Great. I feel that the more time this keeps going on for, the more damage is being done. It has been a year already since the original abscess ailed my entire body but was left intreated because the village town dentist never found it...I originally thought I had a heat stroke but now I know that that was an abscessed tooth.
Anyway, just an update.
Hope you are all doing better,
Take good care......

I developed a severe allergic reaction to Clindamycin - welts and hives all over body. The pain had let up after two weeks and I was so encouraged but then the reaction. Had to stop the med. and pain came back. Now on docycyline but it does not seem to be working after one week. Still have not seen infect. disease doctor as appointment is end of month. I am sorry for all you have gone through Trauma. and Susan, I agree, doctors seem to always think women are depressed. I hope you will soon be okay Susan. SCguy and Casey, I am encouraged by your news and hope both of you remain osteom.-free. Bless you for posting on this board and helping others.

Hi again,
Just need to vent today. My symptoms are truly coming back with just two days of antibios left. This is exactly what happened last time...after one week of Clyndamicin (can't remember the exact spelling), it was as if my body got used to it and the sypmtoms just gradually crept back into my life. Nobody is taking it seriously. I am labelled a lunatic without a cause. I am running a low-grade fever again which is affecting my vision, my lips quiver again, my ears are getting that familiar pinch, my head throbs and my lower mandibular sings along, my heart feels weak occasionally (I am as fit as a fiddle normally...I am an avid cyclist) and my glands are reminding me of their existance. I visited my new dentist today who has started retreating my rc first molar. His previous patient had delayed him and my appt ran into the next one. He was obviously annoyed with me, looked at my panoranic x-ray from May, said all looks good because I started feeling an ache on the other side...I opened my mouth, he peered in, said the left side looks just the way a healthy set of teeth should look...tapped on the re-treated first molar and I felt nothing (maybe I should have been dramatic and started howling in pain) and rudely said that he has another patient waiting and that there is nothing wrong. Nobody has bothered to do a hot or cold check on my other teeth and yet the gnawing ache is starting up with full force on the other side. I am truly annoyed, disappointed and in despair. Who would have ever thought that an innocent trip to the dentist's because of a toothache a year ago would lead to feelings of near death? I am wondering whether or not I have really caught something from the dental drill? But why doesn't it show up in my blood tests? I am appalled by the doctor-patient treatment here that I have run into so far. I am at wits end with it all and nobody will listen to me and help try find a solution. The last hope I have left is an oral surgeon who offered to hospitalise me for a week back in May. I refused for personal reasons and I thought that there still has to be a way to solve it on an out patient basis. He has been on holiday for the past month so I thought I would give him one more shot in September since things have developed quite dramitically since May. I wonder if he would also shoo me away like his colleagues have?
Thanks for reading my venting. I am really feeling depressed from it all. I can't even plan a holiday or a long weekend away because flying upsets things and I get car sick from the unusual head pressure. I even get woozy on the bus and most frustrating, on my own bike.
Take good care,
I hope you are all having better luck:)

Hi Traumatized,

I know we've been following eachother's posts here and on other boards. Just wanted to let you know I totally understand your frustration. I too had a great response to an antibiotic (after trying four others) but after about a week off the antibiotic my symptoms came back. It was so great to have a few days where I felt normal and did not have a constant awareness of my mouth and jaw! It was a glimpse back at what life used to be like! Although my problem may be different than yours, some of our symptoms are strikingly similar. I started this whole thing with severe pain in my lower jaw, swollen glands on one side, bad ear pain, fevers and feeling just horrible. I've been following the infected salivary gland route because eventually my salivary gland on that side swelled everytime I ate. Funny thing was, when the antibiotics worked, I still had swelling, just no pain. Anyway, after being off the antibiotics for a week the pain came back - but on the other side! No swelling of that salivary gland yet though. I'm scheduled to have the swollen gland surgically removed and am really afraid that this is not really the problem but don't know what else to try. I haven't even mentioned to my Dr. about the pain on the other side because I won't see him again until surgery mid-September. Besides, it will just confuse things more at this point. (I don't want him taking out the other salivary gland as well!) I think I'm going to go ahead with the surgery and see what happens from there. Maybe a round of the antibiotics that worked so well on the first side will work on the second?

I too have had normal blood work, but have been on so many antibiotics so who knows? I am going for preop blood work in two weeks and will have been off the antibiotc. for over a month, so maybe that will show something. This has got to be some sort of infection! I have been to two dentists and one endo. and all say my teeth look great.

I totally relate to how this messes up your life. I never know from day to day if I will be able to work, and how much. My Dr. is generous with narcotics but I hate to take them, especially during the day because then I can't function. I have no patience for my kids when I feel lousy and my house is a disaster. I just have no energy and can't seem to deal with the smallest things. I have wasted this whole summer sitting around the house waiting to feel better. Planning a vacation was impossible and would have been no fun anyway. Keeping a decent attitude has been a major challenge.

I do hope you find some answers soon. Please keep posting. Maybe between the two of us we can figure out what is going on.

Best wishes!

CT Mom, could your doctor do a lip biopsy to find out if you have Sjogren's, which causes swelling of salivary and parotid glands as well as pain? It is a simple test. Blood tests don't always show it. Although a lot of people have not heard of Sjogren's, it is more common than lupus and affects mostly women. Have you had a CT scan with dye to find out if you have a mass or blockage in your salivary gland? I am concerned about your having a gland removed and not being 100% positive.
Sae

Sae,

Thanks for your suggestions - I'm open to any and all. Actually, I had considered Sjogrens but I don't have the symptoms of dry mouth or dry eyes. I did have multiple x-rays and a CT scan but they did not show any stones. However, my ENT said that 20% of the time obstructions don't show up on the scans. Also, he thought the duct might be damaged from passing a previous stone and be spasming, rather than having another obstruction. I was a bit uncomfortablel with this until I spoke to someone who had the gland removed and they found two large stones that didn't show up on scans, so I guess it does happen. I too am uncomfortable with removing the gland when I'm not 100% sure, but don't see what other options I have other than taking a wait and see approach (and I've been doing that for four months now). One of the things that bothers me is that my pain is really situated in my jaw under my back two molars. Dentists haven't been able to find anything but if I go through all this only to find that I still have jaw pain I'll be really annoyed. (Although a dental problem would not explain the swelling of the gland when I eat.) I'm hoping this is just referred pain from the gland.

Thanks for your suggestions!

CTMom
Yes, I see you have gone through a lot of options and your doctor seems to be considering all of them. I didn't know about stones not showing up either, although my kidney stone did not show up until I had a nuclear scan. I wish you the best, CTMom, and hope that your problem will be solved. I know what gland problems are like and jaw pain as have that now and believe me, it is no fun. Will be thinking of you and let us know how things are going with you.
Always, good health to you.
Sae

Hi again,
CT...I have to add a word of contradiction to teeth not being able to cause salivary gland problems. Actually, untreated abscess teeth, can cause salivary gland infections like Parotitis and Sialadenitis which then can lead to Ludwig's angina and even death. On the other hand, you can have salivary gland probs unrelated to teeth and then if it is chronic and uncurable with antibiotics (I have missed whether or not you have had some samples taken from your glands...is it bacterial or viral?) If it is viral, then all of the antibiotics you have recieved will never work. I am beginning to put the puzzle pieces together with what happened and is happening to me. I received the blood test results in my very own hands (very dangerous as I can now see that what I was told is in the norms, is not...just lazy doctors). My results show that I underwent or am undergoing still gland infection, specifically of the parotid which was caused by untreated dental infection (s), and because the parotitis was ignored, I believe it could have led to Ludwig's angina from the symptoms I had or septic shock. It is beginning to make sense to me...the next question is whether or not the initial infection that caused the whole thing is the bone infection of my lower mandibular under my first molar which was never treated properly resulting in the spread to my glands and into my body. This would explain why both sides of my face ache, ears etc...Like you write, it is the back set of teeth on the lower mandibular that seem to ache. It seems that nobody has enough time to bother to compare previous blood tests with my latest one to notice the differences which clearly show that an infection and inflammation of some sort is present. I feel better now knowing that I am not a hypochondriac. I can just wait until the symptoms come back full blast before I can demand help. I am anticipating that the antibios I have been taking are not enough to kill it as I already feel things creeping back slowly and expect that IV is probably the only way to go in the future. CT...Have you ever been put on IV antibios?
Anyway, I sound like a madwoman...just thinking out loud above. Don't know if any of it makes sense though...
Take good care,

Trauma.
Looked up Ludwig's angina and that is scary. Right now my left parotid gland is hurting and of course, still have pain in the lower jaw bone on the other side. I am happy you are finally getting to the core of your problems, T. I have always felt that my excised salvary gland had to come out due to infected teeth. I hope CTMom reads your post as there is a lot of info. in it and its been helpful to me too.
Take care,
Sae

Thank you guys for your posts!

I have always wondered whether the swelling in my gland was due to a dental infection but none of my Drs/dentists seemed to take this idea seriously. They just see the swollen gland and not the whole picture. Also, my ENT said that if the tooth were the problem the abscess would have to be large enough to be obvious on x-ray. Now I wonder if that is true. I have had multiple x-rays by multiple people and seen them myself and there is no sign of any abscess around the tooth roots, so I'm at a loss. Also, the ache in my jaw is not specific to one tooth so nobody wants to risk doing a root canal on a healthy tooth and still leave me with my problem. To complicate things, I clench my teeth at night, so my dentist thinks that is a likely cause of my pain.

Questions for you Traumatized - how did your dentist figure out what tooth was the problem? Is your pain constant and severe (as I was told abscessed teeth are)? My jaw ache comes and goes without warning, can last only a few seconds or up to about an hour, and I can go whole days without pain. Nothing specific brings it on and the teeth are not sensitive to tapping, hot or cold. Dentist told me this did not sound like an abscess but I definitely have pain!

In any event, my bloodwork so far has not shown signs of infection, but I was on multiple antibiotics at the time so who knows. I am having blood work next week, having been off antibiotics for awhile, so I'm interested in what it will show. Have not had IV antibiotics yet. ENT did a procedure in the office when he dilated the duct in hopes of reducing swelling. It didn't work and left me with a massively swollen and extremely painful jaw. My tongue was swollen as well, which makes me think of Ludwig's. I honestly thought I might die. Fortunately it eventually responded to oral antibiotics. I never want to live though that again and it's one of my fears that removing the gland will stir up whatever bacteria/virus is in there and bring it on again. They have not done any cultures of the gland (I did not even know they could do that) but will do a biopsy once they remove it.

Because this gland has been a problem in the past with stones, I am pretty sure I'm going to have it removed. Hopefully that will solve my problems and if not, the doctors will have to take a more serious look for the source of this infection.

Again, thank you for all the information. My doctors have been helpful, but I just don't feel they see the big picture and what I've been living with these past few months. Your info. helps me to put things together and figure out what questions to ask the doctors.

Hello again,
CT...I am concerned about you having your gland removed...it should really be a last resort. I know you have been through a lot but if you once felt your tongue swell and like you were on the brink of Ludwig's Angina, I would go back to a proper dentist who doesn't know your case and have him check every tooth properly. An infection doesn't have to show up on an x-ray. Mine didn't for half a year and it probably became visible within just a month to the eye on an x-ray. I have been feeling sick like a dog for 8 months now and nobody knew what to do so they yanked my wisdom tooth to see if it would help. My concern now is that it continues to throb in that area so I am worried about the infection having spread from my first molar to the back during extraction because my first molar was opened and festering like a volcano at the time. Some dentists lack common sense around here.Because the initial infection was never cured in my case, I believe that it has been living on happily since January, without any visible signs on x-rays, the odd pimple in my mouth but the most incredible pain. This is why I was labelled lunatic with atypical Facial Pain. The AFP was in my opinion, an excuse for sth else...there has to be a source. After two flights in July, my glands started getting attacked and after the last flight in August, I was completely ill as if the infection that I knew was living in me but wasn¨t detectable, was spreading. That is why I went to emerge but they brushed me off. My blood tests following the emerge incident and 2 days of antibios, clearly show acute parotitis and infection and what puzzles me as to what is going on, is that it seems to be caused by viral and bacterial. Guess what the dr said to me? My blood tests are within norms. Baloney...which is why I demanded he give them to me rather than throw them out and that's when I started putting the pieces together. A regular GP who doesn't know what to look for, sees the blood tests as normal but the things I had over or under range clearly point to acute parotitis and infection. If you read about gland infections, the most common cause is poor oral hygiene or unqualified dentists who can't find the problem in time. If they take a sample of the bacteria then I still believe that they can administer the proper or most appropriate antibiotics to help rid the problem. If they find that it is viral then something other than antibios should be prescribed. What scares me from reading through various medical essays on gland infections is that they can actually lead to osteomyelitis as they are not functioning properly and retaining the toxins in oral area. It's all quite complex it seems, the crucial thing is for us all to have doctors co-operating with us and trusting we aren't hypochodriacs and helping do the necessary testing and applying the right medication. I wouldn't allow anyone to remove anything from my body unless absolutley everything has been eliminated and the only hope is removing that sth. Like with my problematic RC first molar which started it all...I think that whether or not it is cured or extracted, the problem has spread and needs more attention. My plan now is to wait until the symptoms come back to their full form because atm nobody believes me, and then to seek the proper help in one of three hopeful places. A friend of mine's friend died from a dental infection that spread to her entire body and nobody helped her because nobody believed her as her teeth appeared to be fine from the outside but nobody cared to test what it had already managed to do to the rest of her body.
It looks like a long battle but nobody should ever give up. I believe that there has to be an answer and solution to all of this suffering. Finding the right people to help is what seems to be the most challenging part...then it should be smooth sailing.
Take good care,
Fingers crossed for everyone,
Thanks for reading all of the above ramblings. Maybe they will be useful for someone .........

Hi Traumatized,

Actually, I think I am taking a similar approach as you right now - staying off all antibiotics and waiting to see what develops. It has been about a month now and I am definitely feeling more run down. No fevers yet. The swelling feeling on the floor of my mouth and on/off pain in my jaw has remained pretty constant. What is making me crazy is just the sick feeling - like my body is fighting something. So far all Drs. think it is the salivary gland causing the problem. It's like they see it swell when I eat and then can't get past that it might be something else, so maybe they are right. This is the opinion of two dentists and one endodontist, all of whom I have a lot of trust in. I suppose I could get another opinion and eventually someone might recommend a root canal on one of these teeth, but I don't want to go ahead and do that if it's not necessary either, and so far nothing is definitive.

My surgery is not for about three weeks so I have some time yet. It took two months to get a surgical date, though, so I'm not real anxious to cancel it until I have a different plan. ENT has pretty much said this is all he has to offer me.

I see my primary care Dr. tomorrow for a pre-op evaluation. I'm going to ask him to run complete blood work for any clues as to what this is and spell this all out for him. I have a good relationship with his and trust his judgement. It's funny, I realized today I haven't felt this run down since I had mono in college - makes me wonder if this isn't all some stupid virus. I'm also going to ask him what he thinks of an infectious disease consultation.

Anyway, thanks for your advice. Although I have battled my share of medical issues over the years, this is the first time I've had an extended illness without a clear diagnosis and it's incredibly frustrating. It is helpful to hear from others. Please let us know how you are doing and I hope you feel well soon.

Hi again,
CT...funny you should mention mono because it was one thing that crossed my mind when reading articles. There are so many types of viruses that once you get, go away but lay dormant in your body. Dental trauma can "wake" things up again. Glands are most always affected.
I know what you mean about generally feeling unwell. My entire body is aching and the aches shift from joint to joint apart from the constant mouth pain. It is really frustrating. You are lucky you have a good relationship with your doc. I desperately need to find a doctor who will believe me and help me. The closest contact I had gave up, the antibios were his last bit of help. Infectious diseases would be helpful but without a docs referral around here, I am lost.
Off to bed...my bones and joints are aching,
Take good care everyone

Hi everyone,
How are you all doing? Any news/updates?
I am back to where I was before antibiotics...sleepless nights because my muscles and joints ache, muscles are weak, very low grade fever so nobody cares to take it seriously, chills, numb skin on back of neck and where parotid glands are and other salivary glands under the chin, my eyes ache and water, ears feel foreign, throat is sore (that is a new symptom plus the one morn when I woke up and felt like it had crawled down to my chest over night so I feel like my chest is infected too now), all my teeth ache and my face is tender. I called the dentist, he told me he is busy and that there is nothing wrong with my teeth...he didn't seem to care about my symptoms even about the fact that the rc retreatment seems to have failed so far. He said "Go to you GP. I am busy" and hung up. Soooooo I went to my GP who looked at me as if I am insane. She looked at my previous blood test results, did a physical check-up, listened to what I have to say about my symptoms and said............brace yourselves.........."there is nothing wrong with you, you are just stressed...I have a good shrink in the next town that you can visit." With that, she handed me a referral sheet with the loony ladies contact on it, a prescription for sleeping pills and CIAO. Before I left, I had to ask my dying question..."Do you really think a shrink can cure a dental problem?" and I left furious and drained.
I am not able to go back to the same dentist on Monday for my rc retreatment, I can't trust him anymore so I had to seek out a new one, an older expert known for his ability to save teeth. I trust his skills and will value his opinion if he suggests to pull the tooth. I am also hoping he will take me seriously after being in the business for 40 years. I even called the renowned dental clinic out of frustration for help...I said I am to weak to travel one hour to be told that I am to see my GP and dentist....and guess what...I was told to go and see my GP and dentist. I said that I already have and the person persisted and hung up. I was dumbfounded.
Anyway...just another one of my horror stories...had to vent somewhere. I feel like I am going die from whatever bacteria that is living me first before someone believes me enough, takes a sample from the affected area and prescribes the proper meds.
Take good care,
Fingers crossed for all

Traumatized,

Oh, I can't believe all you are going through trying to get help. I have had more luck with sympathetic doctors, even though I'm still not 100 percent sure I'm going down the right road.

I saw my GP for my preop visit. He is a very "old-fashioned" doctor who doesn't overbook patients and takes the time to listen, for which I am very thankful. I told him about my symptoms, the fact that everyone thinks it is a salivary gland problem, the fact that dentists say me teeth are fine, and my concerns that this really is a dental problem after all. He agreed that dental infections can be really tough to diagnose and he would never say never but...considering my options at this point he urged me to go ahead with the gland removal because it clearly is a problem. He thought if a dental infection were causing the gland to swell, it would swell all the time, not just when I eat. Makes sense. Also, since the pain is not localized to any one tooth and both dentists and endos. say my teeth are okay, I have kind of reached a dead end in that respect for now. Even if I insist on a root canal I wouldn't know which tooth to do and since they aren't 100% it might just complicate the issue. Now, if I have the gland removed and still have pain....I don't even want to think about it!

As far as how I've been feeling - I have good days and bad days. Some days I almost function normally and other days I am miserable. The pain is managable but feeling tired, feverish, with a sore throat really wears me down and often my tongue feels swollen but it looks normal so it's hard to get a doctor to take this seriously. I'm hoping a swollen tongue goes along with having a blocked salivary duct. Haven't heard about my blood work/chest x-ray so I assume everything is okay but will check in next week with him. I am anxious to get this surgery over with - 11 days to go!

Oh, I feel so bad for you that you can't find anyone to take your complaints seriously! I know I'm not making this up and I'm sure you aren't either!! Wish I could offer some useful advice but please know that I'm thinking of you and hope you are able to find help soon!

Trama, I am so sorry to hear that you still haven't gotten anyone to believe you. How horrible it must be. Do you have any chance of maybe leaving that area on a mini vacation and going to some place else, and being seen in an emergency room. I know its pretty far fetched but my goodness some one some where has got to listen to you. Have you thought about going to the head shrink, and talking with her, maybe if she was to see that you are not a nut case and really are having genuine symptoms she can help argue your case.

My thoughts are with you, best wishes,
Casey

Hi again,
Thanks for your suggestions...I have thought about going elsewhere but don't know where...just might try a foreign clinic in the city which will be expensive but they might take a different approach. I don't understand why dentists and doctors alike, deny the fact that root canalled, and teeth especially failed ones, can cause all sorts of health problems in this country. It is possible that my immune system isn't as good as I thought it was so that the bacteria is winning and creating rheumatic fever-like symptoms and endocarditis-like symptoms. There is tons of medical info about this on the internet that any patient can access so if they think we are all dumb enough to sit back and let whatever it is have a field trip in our bodies that ends at the morgue, then they are naive. I will see what the dentist says on Monday...the good thing about him is that he often performs surgery at the "renowned" dental clinic which is one of the only two in the whole country that is based on "research" and the more scientific side of stomatology. It is my last hope.
Take goo care everyone,
My thoughts are with you