Discussions By Condition: I cannot get a diagnosis.

Constant swollen lower jaw + Chronic mono

Posted In: I cannot get a diagnosis. 21 Replies
  • Posted By: Caligirl22
  • May 29, 2007
  • 10:30 PM

My 18-year-old daughter had four very impacted wisdom teeth removed March 12. Her lower jaw is still swollen. Although the oral surgeon sees this and has taken additional x-rays that prove there is no new infection present, he says that there is nothing that can be done. My daughter had a thin face before, and now it is constantly swollen and puffy. It never returns to normal. Sometimes it swells up even more. To back-track a little, since my daughter was about 15, she has gotten mono about every 3 months. She has been diagnosed with chronic mono. Though she did not have mono at the time of the extractions, could she be suffering from some type of autoimmune disorder/disease which has left her face permanently swollen (because she has had mono so often)? Also, has anyone ever heard of chronic mono for which there appears to be no cure? In addition, my poor daughter has chronic sleeping problems, as, every night, she is unable to fall asleep. I guess this may contribute to why she gets mono so often. Anyway, we have received no help regarding her swollen lower jaw area. Would anyone happen to know why her face does not return to its normal size? Thanks so much for listening! Here's wishing you all the best, always.

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  • My 18-year-old daughter had four very impacted wisdom teeth removed March 12. Her lower jaw is still swollen. Although the oral surgeon sees this and has taken additional x-rays that prove there is no infection present, he says that there is nothing that can be done. My daughter had a thin face before, and now it is constantly swollen and puffy. It never returns to normal. Sometimes it swells up even more. To back-track a little, since my daughter was about 15, she has gotten mono about every 3 months. She has been diagnosed with chronic mono. Though she did not have mono at the time of the extractions, could she be suffering from some type of autoimmune disorder/disease which has left her face permanently swollen (because she has had mono so often)? Also, has anyone ever heard of chronic mono for which there appears to be no cure? In addition, my poor daughter has chronic sleeping problems, as, every night, she is unable to fall asleep. I guess this may contribute to why she gets mono so often. Anyway, we have received no help regarding her swollen lower jaw area. Would anyone happen to know why her face does not return to its normal size? Thanks so much for listening! Here's wishing you all the best, always. :o
    Caligirl22 8 Replies Flag this Response
  • My 18-year-old daughter had four very impacted wisdom teeth removed March 12. Her lower jaw is still swollen. Although the oral surgeon sees this and has taken additional x-rays that prove there is no new infection present, he says that there is nothing that can be done. My daughter had a thin face before, and now it is constantly swollen and puffy. It never returns to normal. Sometimes it swells up even more. To back-track a little, since my daughter was about 15, she has gotten mono about every 3 months. She has been diagnosed with chronic mono. Though she did not have mono at the time of the extractions, could she be suffering from some type of autoimmune disorder/disease which has left her face permanently swollen (because she has had mono so often)? Also, has anyone ever heard of chronic mono for which there appears to be no cure? In addition, my poor daughter has chronic sleeping problems, as, every night, she is unable to fall asleep. I guess this may contribute to why she gets mono so often. Anyway, we have received no help regarding her swollen lower jaw area. Would anyone happen to know why her face does not return to its normal size? Thanks so much for listening! Here's wishing you all the best, always. If you haven't taken her for a second opinion to another oral surgeon, you should. And if that doesn't produce answers, don't give up! You could try a periodontist, oral pathologist, ENT - maybe even an internal medicine specialist. I've had jaw problems for 3 years & I'm still trying to find answers. However after terrible pain for 2 1/2 years, my dentist finally found an abscessed tooth that went undetected by panaramic x-ray, CT scan, and MRI (she thought it a little loose & sensitive to cold so took a chance and drilled into it). Removal of that tooth helped some with the pain issue, but I am still having problems. I've read that some dental infections are incredibly hard to detect. Could it be the lymph nodes are swollen & and not the jaw? I'm sure there are exceptions, but too many doctors just shuffle you out the door if they can't figure out your problem in the allotted 20 minutes. Keep trying! Good Luck.Jean
    Anonymous 42789 Replies Flag this Response
  • You're a sweetheart, Jean. Thanks so much for caring and your quick reply! Our search continues...
    Caligirl22 8 Replies Flag this Response
  • what is your health status - any autoimmune suspicions from you and her dad? i'm not a dr. but it may be early rheumatic Sx. do you/he have achiness/stiffness in your body esp. in morning?
    Anonymous 42789 Replies Flag this Response
  • Hello! Hope all is well in your world. Thx. so much for contacting me. My overall health is fine, but my husband has arthritis in his lower back and ankles. He also has achiness/stiffness in his body when he wakes up. Thx. again for your comments. From what I can find online, my daughter (with her already impaired immune system from chronic mono and many bacterial infections) may have 1) a cyst; 2) a (benign!) tumor; 3) an abcess; and/or 4) bacteria in her facial tissues (or bloodstream) for which a tissue sample may be advisable. Should anyone agree or disagree with my "unprofessional" diagnosis at this time, plz let me know! I'm actually in the process of scheduling an appt with a third oral surgeon to see if we can get some help and answers. Again, my thanks to all for your kindness.
    Caligirl22 8 Replies Flag this Response
  • Hello! Hope all is well in your world. Thx. so much for contacting me. My overall health is fine, but my husband has arthritis in his lower back and ankles. He also has achiness/stiffness in his body when he wakes up. Thx. again for your comments. From what I can find online, my daughter (with her already impaired immune system from chronic mono and many bacterial infections) may have 1) a cyst; 2) a (benign!) tumor; 3) an abcess; and/or 4) bacteria in her facial tissues (or bloodstream) for which a tissue sample may be advisable. Should anyone agree or disagree with my "unprofessional" diagnosis at this time, plz let me know! I'm actually in the process of scheduling an appt with a third oral surgeon to see if we can get some help and answers. Again, my thanks to all for your kindness.I agree that all you mentioned are possibilities. That is what I found out from my research, too. Please let me know if you are successful in finding an Oral Surgeon who is helpful. Those abscesses can be hard to locate. The bloodtest should be done immediately as infection that travels in the bloodstream can migrate to different parts of the body and cause lots of problems. However, I do wonder about the reocurring mono. Have you ever been given a satisfactory answer as to why that is??Jean (I really should log in)
    Anonymous 42789 Replies Flag this Response
  • No, Jean, we haven't received a satisfactory answer regarding the chronic mono (which we, actually, had never heard of before). I assume that my daughter's hectic schedule of working 2 jobs, not sleeping properly, and not getting enough sleep at times may have a lot to do with it. I will be seeking another doctor's opinion about that in the near future as well. Many thanks for writing back, Jean. Alas, the never-ending illnesses of my poor young daughter continue...
    Caligirl22 8 Replies Flag this Response
  • No, Jean, we haven't received a satisfactory answer regarding the chronic mono (which we, actually, had never heard of before). I assume that my daughter's hectic schedule of working 2 jobs, not sleeping properly, and not getting enough sleep at times may have a lot to do with it. I will be seeking another doctor's opinion about that in the near future as well. Many thanks for writing back, Jean. Alas, the never-ending illnesses of my poor young daughter continue...I decided I had more to say, so decided to log in.:) Another thing you need to check is for osteomylitis (infection of the jaw bone). Again, hard to diagnose and an Oral Surgeon is who usually makes the call. I think the test they most often do for it is a nuclear jaw scan. I also want to emphasize (not scare you) how important it is that you make sure an infection hasn't entered her bloodstream. Please, I encourage you to get that checked right away...and if she should suddenly get very ill and starts running a fever, get her to a hospital immediately and tell them what you suspect. This isn't likely, but I just couldn't let it pass without saying something more. Bloodstream infections can be dangerous. As a person who has dealt with jaw, neck, chest pain (after a dry socket, then an undiagnosed abscess for 3 years), I wish I would have done things differently...then maybe I wouldn't be going through the problems I am now. It occurs to me that ongoing Mono could be compromising her immune system and making antibiotics less effective. In a case like that, she should probably see an Infectious Disease specialist. The problem I ran into is that I began making all these appointments with specialists on my own (as my doctor didn't seem to have enough gumption). I ended up with records scattered from here to kingdom come which really can be harmful when trying to solve a "puzzle". Should you strike out with your 3rd Oral Surgeon, my advice would be this (for what it's worth). Find a medical center that specializes in diagnosing. These are usually teaching hospitals. Then make an appointment with an Internal Medicine specialist and let HIM/HER direct you to different specialties as needed. You may need to be adamant about who you want to be referred to - but remember, you are PAYING them. Hopefully, you'll find a good one who is compassionate and persistent (I haven't had that kind of luck yet, but I started late...after seeing several specialists on my own). Then all your records are in one place & the puzzle more easily solved...because given the Mono, there might be more than one thing going on - or one thing causing or complicating another. Hope that all makes sense.:D OK, I think that's all I have to offer.Jean
    Jean Marie 38 Replies Flag this Response
  • Much needed and appreciated advice, Jean! Very valuable, indeed! Thanks again for all of your great help! You've really made my week!!~ God bless!:p
    Caligirl22 8 Replies Flag this Response
  • I just looked at your name quickly and I thought it said call-girl. Hopefully you won't get any goofy messages (except mine). I thought "wow-she's brave". Anyway you talked about "unprofessional" diagnosis. Hey this is what this board is for! Some are drs., nurses, xray or allied health, or have been unlucky enough to have some of the problems displayed on these pages. Some are naturopathic (is that the right term?) and some are western med oriented. We hope a few phrases will open up a previously dead-end dilemma. Good luck
    rad-skw 1605 Replies Flag this Response
  • I was undiagnosed for years after I had pain and a wisdom tooth removed.It turned out to be TMJ. See an oral surgeon, they can detect that through an MRI also. A good physical therapist and repositioning splint, staying on mild foods will help. Actually my dentist had dislocated my jaw on both sides, which no one knew, and I had to have surgery.Don't rule anything out! Good luck!
    Anonymous 42789 Replies Flag this Response
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  • I'd like to reiterate the suggestion to look into Osteomyelitis of the jaw. You may need to see a Maxillofacial specialist or ENT for this. A 3phase bone scan can be helpful, but depends upon how new the OM is if that is what it is, and there are other scans that can be done as well. You need to find someone who has treated Osteomyelitis of the mandible (her lower jaw, right) and has experience with this Dx as it is difficult to diagnose and to treat. Maybe call University of Rochester or Strong Maxillofacial Surgery and ENT departments and ask who they would recommend.Regarding "chronic mono", I suggest that you call Dr David Bell in Lyndonville, NY who is a specialist in Myalgic Encephalomyelitis. Read a bit about that, it oftent starts with "chronic mono" like appearance. Stay away from any "Chronic Fatigue Syndrome" CFS publications. That was invented by the CDC in 1988 for what were really MEitis outbreaks in the US and has led to a lot of confusion. Patients with ME often develop chronic osteomyelitis in the jaw due to lowered circulatory function (and the lower jaw is the least perfused tissue in the body, and less so in females) and there is also immune damage in ME which leads to chronic infections. Ask Dr Bell for a referral to a knowledgable doc in your area, or if you wish to travel to NYC, go see Dr Derek Enlander or Dr Susan Levine. Go with the ME dx (not "CFS") and save your daughter a lot of confusion and dead end effortsseehttp://www.ahummingbirdsguide.com/http://www.geocities.com/tcjrmehttp://www.name-us.orgBest of luck to you and your daughterME pt with COM
    Anonymous 42789 Replies Flag this Response
  • Thanks so much for your kind reply regarding my daughter's ongoing condition. I've scheduled an appt today with a third oral surgeon. I'm so sorry to hear that you had TMJ, along with a dislocation of your jaw on both sides! Yikes! The jaw surgery must have been painful. So glad that you are better now...finally! Please stay well. Thanks again for caring, and God bless!
    Caligirl22 8 Replies Flag this Response
  • I can't thank you enough, ME pt with COM, for your most valuable assistance and suggestions. I will pursue both matters further per your much appreciated advice. The additional oral surgeon today, again, had no answers for my daughter. Thank you very, very much for all of your kind recommendations!
    Caligirl22 8 Replies Flag this Response
  • Sorry your daughter struck out with the 3rd Oral Surgeon.:( You mention that they have all said there is nothing to be done, but do they say WHY her jaw remains swollen? Unless they know "why", how can they say there is nothing to be done??? Just a reminder (I've mentioned it before)...whatever route you decide to travel, try to keep track of her medical records. If you go to different specialists/doctors that are not part of the same medical center, you could ask for a copies of them. Or, at the very least, start a journal where you can track doctors she's seen, tests she's had, symptoms, etc. I prayed for your daughter. I know how difficult it is for me - and I'm an adult. She's so young. Don't give up! There's help for her out there somewhere. Jean
    Jean Marie 38 Replies Flag this Response
  • Dear Jean, I am sincerely touched and feel humbled that you and other nice folks care about my daughter's dual condition. Thank you so much for your prayers and good wishes. I have now scheduled an appt. with a medical doctor and an endodontist (although I was told that the oral surgeons should have actually diagnosed my daughter's disorder/infection!). I am in the process of scheduling an appt. with a specialist in Lyndonville, NY, regarding her "chronic mono" which may be directly linked to her chronic swollen lower jaw. Again, I am very appreciative for the generous help and support from you and others. Please know how much this means to me, and I will always remember everyone's kindess. My very best to you and yours always!~
    Caligirl22 8 Replies Flag this Response
  • Dear CaliGirl,You are most welcome, I sincerely hope that your daughter gets help and that Dr Bell can assist.The difficulty that you are having getting diagnoses for both problems is not unusual. Situations like this can make you wonder what you are doing wrong, but they are just tough things to find help for.I probably mentioned before that OM of the jaw does not present like OM in a long bone in the limbs which is what doctors are schooled to think of - lot of swelling and redness of skin, visible sinus tract draining through the skin, high fever ... these symptoms may or may not be observable in OM of the jaw and sinuses.Persistence is what is needed, and that you have demonstrated as well as a lot of love for your daughter. With those things, and the right doctors, she'll be seeing progress soon.All the bestME Pt w COM
    Anonymous 42789 Replies Flag this Response
  • Much needed and appreciated advice, Jean! Very valuable, indeed! Thanks again for all of your great help! You've really made my week!!~ God bless!:pI had my wisdom tooth taken out when I was 14 years old. Today, I'm turning 28. My jaw is still swollen and have not returned to normal size. I've seen dozens of doctors, got hundreds of MRIs, blood tests and screenings (you name it, i've had it!) and no one seems to be able to find a reason why. To make matters worse, I'm only swollen on one side, and it increases and decreases randomly also like your daughter. I do have discomfort in the jaw as well, sometimes more than others. Over the course of the years, I've found a few remedies that help bring down the swelling and discomfort and I really recommend them:- alternate ice and hot compresses every 5 minutes for 30 minutes- do not bite (i.e sandwich, burger, etc.), use only the back teeth to chew the food- absolutely no chewing gum- i've also tried physical therapy and it has helped immensely with discomfort, however, the comfort only last up to two days after treatmentI hope this helps.
    Anonymous 42789 Replies
    • August 19, 2008
    • 07:06 PM
    • 0
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  • I had my wisdom tooth taken out when I was 14 years old. Today, I'm turning 28. My jaw is still swollen and have not returned to normal size. I've seen dozens of doctors, got hundreds of MRIs, blood tests and screenings (you name it, i've had it!) and no one seems to be able to find a reason why. To make matters worse, I'm only swollen on one side, and it increases and decreases randomly also like your daughter. I do have discomfort in the jaw as well, sometimes more than others. Over the course of the years, I've found a few remedies that help bring down the swelling and discomfort and I really recommend them: - alternate ice and hot compresses every 5 minutes for 30 minutes- do not bite (i.e sandwich, burger, etc.), use only the back teeth to chew the food- absolutely no chewing gum- i've also tried physical therapy and it has helped immensely with discomfort, however, the comfort only last up to two days after treatment I hope this helps. I swore I'd stay off this forum as I really haven't had much luck finding solutions and many of the posts create more angst than help. However, I couldn't stop myself from commenting on your post. I too have lost count of the MRI's, panagrams, CT scans, etc. I've had on my jaw (see my other posts). I've been to Mayo so many times I've lost count. One thing I wanted to ask you is if you have ever tried steroid injections? An ENT at Mayo tried this after commenting it wasn't "rocket science", but it might just help - and it did...at least for a while. I've had a couple of them since & have enjoyed the relief (not total relief, but considerable). Also, IF you are still looking for answers and have the means, might I suggest Dr. Reid at Mayo Clinic http://www.mayoclinic.org/bio/12645966.html . He is a face pain specialist and the most compassionate, caring doctor I have ever run into. He is the top of his field, and has put all my info into a worldwide database to see if my pain problems (which also involve my chest) have been documented by other specialists. He also was willing to refer me Dr. Jim Swift at the University of Minnesota who is considered one of the top Oral Maxillofacial Surgeons in the world - http://www.dentistry.umn.edu/facultystaff/faculty_bios/Swift,_James/home.html OK, that's all I have to offer. After all the misery I've been through, I just can't help but TRY and help others when the opportunity arises. Good luck. Jean
    Jean Marie 38 Replies
    • August 20, 2008
    • 08:43 PM
    • 0
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  • Hello! I hope you found solution for the problems that your daughter had described in your posts. I recently found this forum searching for help as at the moment i am also suffering from the same symptoms. I suppose the posts are quite old and hardly believe i would get a reply but just wanted to try. I found what you wrote very encouraging since i finally found a connection between the symptoms i have. Let me shed some light on my story. I am 19 years old and around one year ago i started realizing my face was swelling slightly at times which made me really worried since they were no other symptoms along. With the time the swelling became more recent and let me mention that me same as your daughter used to have really thin face which was suddenly becoming considerably massive and puffy. That really influenced my confidence moreover nothing else as a symptom appeared which. That made me so anxious and stressed since i didnt know whats wrong. Eventually the only thing that seemed like a reason for that was that i had an impacted wisdom tooth which was slightly hurting and once the swell came along with infected gum around it so i though i found out where the swelling comes from. Unfortunately i took out the tooth and the swelling didnt disappear it became worse as the swelling started to appear more often. The only clue i had was that my lymph nodes were constantly swollen as well with a jaw pain when the swell was more massive. So i started going to doctors and and figured out that i have mono same as your daughter so there is three matching symptoms constanly .swollen face as the swell varies, jaw pain, extracted wisdom tooth and mono. I would be really thankful if you tell me how your case developed and is your daughter better now is she completely cured and what did it turn out to be causing that?
    Anonymous 42789 Replies
    • October 17, 2009
    • 09:18 PM
    • 0
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