I have posted a bunch recently & have questions about various issues with my face. All of my pain is the left side. Issue started with upper left jaw a 2-3 yrs ago. I have things today going on upper & lower left side. Right now labeled ATN.
So I have written posts a lot about my upper pain. My lower pain all started after I had a sinus procedure through the mouth left side upper jaw. Long story. I woke up with swelling more on the lower side of left mouth mandible area. I called & said is swelling normal they said yes. I saw the dr for follow up⌠he denys where he did work would cause issues where the swelling is. He said itâs not infected. My Lower jaw started hurting weeks later & been to many drs who said they donât see infection where swelling. I did augmentin as well which didnât do anything for it. The ent said dental & dental couldnât find anything wrong on X-ray. I also went to a neurologist then who dismissed it as being nerve related. I went to dermatologists as well⌠so been everywhere! The skin was tender as well. I went to a hospital but she wouldnât let me through because I told her I had an MRI done by another dr to check the soft tissue and nothing showed up there. So- at a loss. Fast forward to today my smile is a little off because of it. I have been on many antibiotics over the years & it never took that area of swelling down completely. Now no one notices it because it is minor. Thatâs another thing⌠try telling a dr you know something is wrong but if they canât see it forget about it.
Now after I had a tooth pulled upper side I developed pain & tender skin & swelling next to my nose. Almost above the extraction site but seems to be a little to the side of it. So I have 2 areas of swelling on my face⌠minor. So- is this nerve related or maybe I am allergic to the general anesthesia? I have had dental work in past all my wisdom teeth out at once decades ago & had no chipmunk face. I have had cavities filled, crowns, etc. With no issues.
So thatâs that! Confusing as heck. I write a post about swelling & some replied they have it too. I just wanted to ask about the mandible swelling. If it sounds weird that a procedure done on the same side upper jaw causing swelling in another area of face. I wonder if I have a problem with my lymph nodes? Why I have 2 areas of minor swellingâŚor just nerve damage causing the swellingâŚ
I forgot to add after that sinus procedure I had major pain inside my left cheek like where she put the needle to numb me up. I went to ENT who yet again didnât see anything wrong. The inside pain lasted a couple of months then it went away but was left with that minor swelling area.
**Have you had patch testing to see if you are/ have been allergic to any of the meds /chemicals used during these procedures ?
On what basis did the Docs. justify antibiotics ? Was your White Blood Cell count elevated ?
Has anyone checked your Sed Rate or CRP which are markers of inflammation when you are most symptomatic ?
I am just looking for some tests that might help back you up when talking to Doctors
Hey Lala,
TN has been one of my many âpseudoâ diagnosis and I want to say that your experiences are not uncommon.
ââŚI saw the dr for follow up⌠he denys where he did work would cause issuesâŚâ
I did the same, queried the drâs. Ohh they donât like that at all. I was told âIâm the dr, I know. You? Youâre just the patient, you wouldnât knowâ I know pain but that doesnât count. I was asked if I intended to sue, which I had nor have any intention of doing. I was looking for answers, not money. But many drâs are very concerned about their reputation and their insurances. My surgeons opinion was âWe operated, we fixedâ But this is not anything like fixed.
ââŚThe ent said dental & dental couldnât find anything wrong on X-rayâŚâ I have found that although I have documented everything from symptoms to treatments trialled to medications used, unless some doctors can see it on a scan or read it from another duly qualified doctor, my reporting is seen as anecdotal or hearsay. "âŚtry telling a dr you know something is wrong but if they canât see it forget about it.â I have to agree.
ââŚI also went to a neurologist then who dismissed it as being nerve relatedâŚâ I have a known neurological condition which was operated on multiple times and when the so called âfixâ did not fix, then came the nerve diagnosis TN, cervical dystonia etc and was trialled on all sorts of medications from heart meds to epilepsy meds to Botox. When none of these we beneficial out came the psych diagnosis and psych meds, which other than put me in a constant mental fog did very little.
Unfortunately some drâs do make out they know it all, but when they donât they are often less than willing to admit they donât know why. I have had to learn to manage the best way I can with medication, diet, relaxation techniques, hydrotherapy and whatever else works because it seems the professionals are at a bit of a loss.
I must say here, I have not had any swelling issues, so I am of no help there and maybe Medicaâs points could give other avenues to investigate.
But please know you are not alone on this journey and that some of us have been on a very similar route with mixed results.
Thank you so much for your response. It is nice to know your not a lone. I have done it all, allergy testing, neurology, ent, dental etc. the allergy testing was the usual stuff not the anesthesia so I guess I should inquire about that.
If I can go back in time I would do things so differently & not have done some procedures. When you hear people talk about the classic symptoms of nerve pain & I donât have electric shocks or obvious typical symptoms so I guess I just second guess the ATN & feel like itâs coming from somewhere but where. Itâs my brain that has to accept it. I agree with trying to get into meditation & get myself in a better state of mind. Itâs obvious I am over anxious & stressed. I can accept nerve pain I guess I just want the confirmation & want to make sure itâs not something else with the swelling. I hear quite often to really find a good neurologist. I wonder why so many out there are so clueless & quickly dismissive.
Ohh this is all so true, all of it.
Once we have eliminated the more common dental, ent, neuro etc it seems the more common default diagnosis is nerve pain. You speak of the âtypical symptomsâ but then talk of âATNâ the âAâ stands for atypical. In medical terms atypical is the opposite of typical and for some medicos this can be very difficult to accept. Drâs are scientists and in science A+B=C. The problem I have here is that is that my symptoms are not âAâ nor âBâ and the result is not âCâ, so I do not equate and for some drâs this goes against their education and textbooks. They can often find this difficult to accept (as if itâs all just a simple walk in the park for us, the patients. Itâs not.) We sometimes place drâs on a pedestal of being all knowledgeable but then when they donât have the answers frustration can be the result.
ââŚItâs my brain that has to accept it.â And when you learn âHow toâ accept it all, please tell me how. I have some days when that acceptance is easy, but then have days when itâs all far from easy. Finding that happy median, thatâs the key.
None of this journey is simple nor easy, but here you are amongst people who know from their own personal experience and not a textbook. So come talk to us.
Skip neurologist and go straight to a Neurosurgeon even if you donât want surgery. They are more informed about TN and ATN. 2 neurologist acted like it was in my head - mental problem.
Mine was diagnosed as trigeminal neuropathic pain from root canal.
You might need a referral from your family doctor.
Thanks. It gets me so mad to hear how drs make people think itâs in their head. I truly am sickened by how people with pain are made to feel. I am so glad you got a diagnosis.
I have had an unusual course with a boatload of diagnoses including Glossopharyngeal Neuralgia .If I had not been a doctor known to the first doctors I saw they would have called me a " crock" âtheir favorite term for patients who do not fit into their Cookbook diagnoses . The doctor who helped me the most was an ENT who does Integrative Medicine . The Neurologist not so much . A World famous Neurosurgeon charted a PE he never did , so I never went back to him.
This sounds superficial but itâs true ⌠try to dress as nicely as you can . If you feel bad and are female do not overdo the makeup and jewelry . On one hand a lot of docs are snobs who judge people on the basis of how they dress . On the other , if you look " too good " when you ARE in pain they might question how someone who feels so bad can take the time to do makeup etc . My friend , a nurse pointed that out to me about the makeup . I already knew about dressing nicely e.g. trying to avoid sweats âbut I would always try to do my makeup to lift MY spirits. She pointed out that I looked "too nice"to be ill â so I dropped the jewelry and eye makeup . My goal in saying all this is to help others be taken seriously . If you can --write your symptoms down and TRY to speak factually, not emotionally . If a symptom is hard to describe say that . If the doc seems to lose interest hand them the written symptom list . Some docs are Visual learners and just drop out if your history is too long for their attention span . I hope this helps .
I am guilty of sweats & being emotional. I have broken down in tears a bunch of times. Itâs a shame. Drs should learn that if they donât know whatâs going on then they can refer the patient to another colleague, specialist, and just say hey I believe you I just donât know. Not you need to see a psych dr, your not sick enough to be in pain etc.
First let me say my heart goes out to you . I have suffered pain so severe that the only reason I did not commit suicide was my fear of God and my religious beliefs . I understand that tears can just happen when you are overwhelmed . There are many good people out there practicing Medicine who would be touched when you cry
. BUT a calvacade of circumstances have made it even harder to be treated for pain . There was a short window where Docs were told that Pain should be viewed as a 5th Vital sign .For the first time , perhaps , people were being adequately treated for severe pain . Sadly that changed for many reasons . I am not saying you are WRONG for being emotional âjust that with some docs , who now feel under siege and in danger if they treat pain , with those docs you may well not be helping your case . They avoid sympathy to avoid feeling guilty for not treating patients .
And if you need to wear sweats , wear them . I just made some suggestions based on my own experience , hoping to help others . Medical school was an eye opening experience . Not everyone who went in to Medicine did so because they love Mankind