| | Joined: Jan 2013 Posts: 6 Member | OP  Member
Joined: Jan 2013 Posts: 6 | i have similar pain on the right side too. Before I mention about my problem, I did have my tonsils/adenoids out at age 12 and had teeth problems since, very severe pain as a teen with cold weather, I now in my 50s have a full top plate and only front bottom and suffer daily with jaw pain.
It all kinda started after the 911 tragedy, that october i had this flu like problem lasted till the spring of the next year. After that i had had earaches, headaches, under my tongue. From that spring till today....I've been to multiple ENT, dentists, Neurology, medical physcians with no conclusive diagnosis to the pain. For a while they called it trygeminal myology (but the diagnosis didnt fit, it was under the face)and tmj and both were dropped as a diagnosis. I recently went to a civilian doctor who tested for "epstein barr virus" and turns out that it showed negative BUT showed that i had had it in the past. I do get rashes on my chest and neck, my under eyes are almost black now from years of pain and the symptoms are now and have been going down my neck to my shoulder, a little now on my back. MRI/sono-grams/cat scans show shoddy lymph nodes in neck and recently found a cyst on my thyroid. My Question is why haven't they wanted to remove these nodes that swell and are apparently getting bigger. they use the term small level 11...but there are numerous swollen lymph nodes. And the pain under my jaw feels like a horrible infection. Lately the pressure behind my nose and eyes/neck and jaw has cause worse dizziness....to the one point i almost past out.
Last edited by ChristineB; 01-11-2013 08:49 AM.
| | | | | Joined: Jan 2013 Posts: 6 Member | | OP Member
Joined: Jan 2013 Posts: 6 | just a note...with all the penicillin as a child with the tonsil infections...i am now and have been allergic to penicillin since my 20s.
Last edited by ChristineB; 01-11-2013 08:50 AM.
| | | | | Joined: Jan 2013 Posts: 6 Member | | OP Member
Joined: Jan 2013 Posts: 6 | when they dont know what it is they call it trigeminal myology but remember that is the face nerves not the neck lumps or under the jaw or under the ear...or behind the eye pressure.
for the life of me, why dont they remove these nodes or lumps...i have gone over 10 yrs now....and im in bad shape now from the doctors not removing my lumps....
Last edited by ChristineB; 01-11-2013 08:51 AM.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Tess, Im sorry but I dont have knowledge about your health condition. The members here are oral cancer patients and caregivers which is what we have extensive experience with. Since we arent doctors or medical professionals we probably wont be much help to you with your problem.
All I understand about the trigeminal nerve is that it is one of the 5 major nerves in the face. Ive had excruciating pain from this after a surgery to remove half my lower jaw, so I understand how debilitating the pain can be.
If your current physicians are not helping you go to a top medical center which has the best doctors. That is your best chance to get this taken care of so you can return to a decent life.
Good luck!!!
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Jan 2013 Posts: 6 Member | | OP Member
Joined: Jan 2013 Posts: 6 | opps i thought i posted this under another blog...sorry | | | | | Joined: Jan 2013 Posts: 6 Member | | OP Member
Joined: Jan 2013 Posts: 6 | oh and it is not trigeminal ...
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Your post was written on another members thread. I moved it here so it didnt interfere with the other persons questions. This will also give you the best shot at getting an answer for your questions.
You should see a flashing envelope next to "My Stuff". Click on that for your messages, I have sent you two.
Im sorry I am not familiar with your condition. It could be something related to TMJ but thats just a guess.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hi Tess have you had a ct, MRI, or pet?
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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