I had part 1 (of 2) jaw replacement surgery in 2/13. Right after I had numbness and some paralysis on left side. About a month after surgery I was getting some electric shock pain, we assumed it was the nerves waking up. A few weeks after I was getting the small electric pains the whopper jolts started. I remember the day we were driving home and the window was open a little, my husband was smoking a cigarette and BAM I was screaming I had thought his cigarette hit me in face and burned me. It lasted on and off for about 10 minutes. Now, for about 2 months I have continues to get the Big jolts.. I was told I have Trigeminal Neuralgia.
I was diagnosed by pain clinic, an then surgeon who did part 1 (part 2 is june 5th). He did a nerve block and I had some relief for about 3 hours. I was sent to Neurosurgeon and waited a month to see him. LAst week I went to Neurosurgeon, after waiting 3 hours for my appointment the Dr came in and told me this is not TN? He said he thinks it could be but would be coming from jaw surgery not typical tn. He told me he doesnt know what I can do. Told me I should ask the the surgeon that did the surgery. I told him I did he sent me to you. I begged him to please help me, tell me what I can do, Im scared, I have never felt pain like this, I can not take this anymore!! He left the room and came back then said well, you might have tn but he cant fix it. He gave me a prescription for tegratol and said I need to go to my pcp for refills and bloodwork. He also told me the only treatment I might be considered for is radiation treatment.
I left with complete disappointment and in even more confusion then ever. If the trigeminal nerve was cut then it would not be painful right? The pain I feel is exact spot of TN, the dr confirmed it with nerve block on tn. I am not saying nerve could not be cut, but how do we fix it and why would I get the exact pain of TN? Please help me. One of the questions on Dr form was will you be going to an attorney, I wrote i dont know. Could he have been covering himself from getting involved? This is how I feel, he did not want to clean up someone elses mess. He pretty much blamed the surgeon and about came out and said he messed up. I am having surgery on Wed with same surgeon because no one else would even look at me to complete the surgery.
Please any suggestions, where do I go, who can help me? Something odd is neurosurgeon mentioned TN is something you are born with and that is why he knows this is not TN because I had surgery and it started after surgery. I have not seen anywhere where TN is something you have all your life as he told my husband and I.
I'm so sorry that you are in pain and no one will help you..I never had a pain in my face ever until I had oral surgery.Then the oral surgeon said well it must be an on overactive nerve..The dentist said it was nerve damage..The neurosurgeon said it wasn't nerve damage but gave me Amitriptyline to try to see if it worked..It did..Your symptoms certainly sound like trigeminal neuralgia...I have read a lot that certain experts say that dental work doesn't cause trigeminal neuralgia , just aggravates it. I believe that dental work DOES cause neuralgias...The tegretol may take a few weeks to start working on your pain..And I would find a new neurologist :( One that will listen and care about your fears and questions..I hope you get help soon...
After TMJ replacement I went to neurologist and was told everything was complication from surgery. I still have paralysis on left regained a little blinking. I have also been to eye dr, who also told me it is TN. I have alot of numb feeling but the pain in my face is pretty severe and can not even touch my face. Hair washing and brushing is excruciating, chewing talking also aggrivate and send shocking pain in 2 of 3 trigeminal nerves. I believe there is obviously some nerve involvement as my function is compromised. I have feeling I just cant move it. They said it is like bells palsy. I had to have replacement because I had fused bones and severe degeneration and arthritis from an auto accident 27 years ago. I had had 4 surgeries prior with no problem (1988-1993). I also have denture (2/12) and have screws in gums (jaw wired right now with rubberbands I can remove) The pain is in left cheek in middle and above eyebrow on left. the nerve block was directly at ends of nerve and had immediate relief for 3 hours. Yes, the surgeon was wrong, but again, no one else will even look at me. I have to go and have surgery Wed by same surgeon as I have now jaw in right now. (see tmj concepts for idea of surgery) I am hoping to at least get screws out and move forward with the next phase of trying to figure this all out. If he did cut the nerve then why would I have relief with nerve block? The other thing, I am on high doses of pain medication and it does not even touch this shocking pain at all. I have also been on 300 mg of lyrica for about 1 year so it has made no difference except make me in a fog. When I call and try to make appointment with neurologist and ask if they treat TN they refer me to neurosurgeon. I go to neurosurgeon and he tells me I need pain clinic, pain clinic tells me they cant help need neurosurgeon. See where I am going, with this, no one wants to touch me, its easier to push it to someone else in case the first person made a mistake, they dont want to make another one but no one wants to help and take control. I am so overwhelmed. I might add I also have Lupus and a blood clotting issue (aps) which also scares people away. I have had MRI prior to having this pain and brought cd to Neurosurgeon. He said it all looked fine, but it was before I had pain, and from what I have read most people did not show a problem on the mri.
I am so sorry you are in so much pain. I also have had a TMJ Replacement Surgery. My pain is the same as it was before the surgery, nothing changed..the pain was bad before the surgery & stayed bad after. That was one of the indicators my neuro has used in my diagnosis, the other is the TEGRETOL, fill your prescription, after the fist 2 doses I bagan to feel such great relief. The one problem I see with your pain is it got worse, changed after the surgery. Do not give up hope, there are still things out there that can help you. As far as the other surgery goes, I would hold-off if you can. I know that I will never have my other side done. I am supposed to in 5 years. Where are you suppose to have your Replacement done? I see you are in NC-
Your symptoms sound a little like Anesthesia Dolorosa....(not a Dr though-)
The two main symptoms of AD are facial numbness (much like the numbness from a dental anesthetic injection) and constant pain. The pain is usually burning, pulling or stabbing but can also include a sharp, stinging, shooting or electrical component. Pressure and “heaviness” can also be part of the pain symptoms. Often there is eye pain. Cold increases the feeling of numbness sometimes making the face feel frozen
There are some promising treatments with motor cortex stimulators-
Alot of times they ask this to see if this is accident related and if there is going to be a lawsuit against someone else. More and more doctors are asking this because they dont want to deal with depositions or more insurance companies asking questions.
When I had a horrible car accident, at least 3 doctors turned me down as a patient because they didnt want to deal with a lawsuit.
Wendy
Cleo said:
Only in America would you see the question- Are you getting a lawyer-- on a doctors form. If they feel the need to ask then I would be sure to contact one before part 2 ever takes place.
I had the 2nd part to tmj replacement last week. When I woke up with a new jaw it actually was a little sore but was not in "pain". A couple hours after surgery, TN came back :( yes it is TN no nerves were cut, it is not from TMJ but it is TN. The Dr I saw was obviously not experienced with TN and did not want to get involved with someone elses work. The neurosurgeon where I had the surgery will treat me for TN, but it is 4 hours away so we are going to a Dr close by. I should have started with to begin with. The Dr close by that will be treating me was referred to me by a father of a boy on my sons baseball team. He had MVD and was successful 10 years ago. I still can not believe the pain I have from TN and not the surgery. Starting on tegatrol tomorrow. We wanted to wait till after surgery to make sure there were no reactions.
Thanks again for all the support, will keep you posted.