Where to start, approx 4 years ago i was sitting at my friends home when suddenly I experienced what I can only describe as the most horrific pain in the right side of my face, from the side of my nose across my check bone and radiating through my ear, it lasted approx 4/5 seconds, it felt like a burning electric shock, (I was frozen with the impact and sheer force that this pain hit my face, I would of certainly fallen to my knees If I were not already sitting at this time! SECOND PAIN HIT, THIRD PAIN HIT, FOURTH PAIN HIT. By this time I had to be assisted to the car and returned home trying every medication I could to stop this pain over the week end (I was experiencing several attacks of pain off & on over the weekend, The pain was not constant it lasted 4/5 seconds over a 20/30 min period.
I went the Dentist, had two teeth removed , (although x rays showed that there was no abcess or any true dental problems , I demanded that the teeth were removed as I could not stand the pain. The pain was worse, a visit to the G.P who felt that this what he,'SAW' was possibly.' TN' A referral was made to a neurologist, a MRI scan was requested and Gabapentin was perscribed, (the following three weeks the ,'attacks appeared to subside)! My appt with the Neurologist, ''Your MRI scan is CLEAR of a TUMER , and you are not going to DIE! I will discharge YOU''!!!
Three months later further attacks of pain arrived! Gabapentin increased, no pain for 3/4 months! Then more attacks of pain, G.p then introduced Carbamazepine along with the Gabapentine a referral was also made to a neuro surgeon, I think this is TN although there is no evidence of anything compromising the nerve, ''I will do ,'Balloon compression procedure which i'm sure will be sucessfull in your situation. I had the surgery and left hospital the following day, ( I had,total numbness in the right side of my face and a great difficulty with my Jaw, unable to open my mouth much and totally unable to open my mouth and 'stick' my tongue out). However I could now brush my teeth, eat a solid meal & I was pain FREE, I was still on the max dosage of medications and I was eager to reduce these, until I was no longer taking these.(I was looking forward to returning to, A LIFE)! Well 4 months later, Pain ! My Surgeon was able to preform a further Balloon compression surgery within two weeks :-) This time a experienced difficulty and pain with my ear!, although no where near the severe pain of my face (upper check) No more Pain! a further five months and the pain returned ! well my surgeon did not wish to preform a further ,'balloon compression' and referred me to a Maxillfacial consultant and a different neurosurgeon. The Maxillofacial consultant felt that I did not have TN He felt that I had complex problems one of which was the right TMJ and associated muscles, extra pyramidal symptions, A possible diagnoses could be a myofacial pain disfunction syndrome? (twenty years ago,whilst in my social worker role, I was severely beaten by a client the right side of my face took a great deal of impact, although this was not examined in hospital, (I did not express the pain I was experiencing in my face /jaw as I was 7 months into my pregancey when the attack happened and my baby was born and they were unable to save her life, this took president) I have experienced problems / pain with my jaw for all these years, it is always difficult yawning, opening my mouth for short periods, dentist etc I just live with this and it is not too difficult to do so !! This consultant requested that I greatly reduced all my medication until I was free from the, anti epileptics.No further appt is to be arranged. The New Nerosurgeon is not offering any further surgery, instead he has referred me back (once) again to the Neurolgist)! I CANNOT deal with this PAIN, isolation, depression any longer. I'm no further than I was four years ago, just more disappointment ! I'm so tired and so very frustrated with Consultants, suregeons simply telling me that they cannot help, offer me any solution to this HELL I'm living.
Sorry for the spellings and bad grammer.
I await some suggestions and if possible a little hope.
Wow. First off let me say I AM SO SORRY for the loss of your baby. That is awful you were beaten!! :(
I bet you anything that when you were hit in the face it did some damage to the jaw. But the MRI should've shown something. You said you had that done right? Maybe a CT scan is needed-- sometimes they catch things an MRI can't even though it's known an MRI is better.
I would push for further help. Don't give up. Do you grind your teeth at night? Is the pain sharp and stabbing pain or just really sore jaw and ear pain?
I do grind my teeth at night and some many years ago I had a,'mouth guard for this'! However I'am totally unable to wear this as it can cause the severe pain!!! The pain is a , Sharp and Stabbing .
My Jaw has just been sore for many years (since the attack), It locks, grinds and feels as though it slips out of socket.
My Jaw and Ear have become very sore since the two balloon compression surgeries!!
I'm really tired and seriously considering to end this pain in the only way I know how!
I would like to take this oppertunity to thank you for your time.
I take Cymbalta for nerve pain but there's Lyrica and other nerve pain meds your Pain Management Dr. could try as well as possibly Botox injections to numb the area or nerve injections or nerve burn with radio frequency ablation but for sure get a Pain Management Dr. and keep looking for a Surgeon to help you. I don't have TMJ but have chronic pain daily. Never give up as there could be something that will help you. I hope you find a good Dr.
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