Hi Christine,
I know it’s a frustrating answer to go a route that you don’t want to go. The medications are no fun, and I’ll tell you I’m not looking forward to lifetime of having TN let alone having to take these crapy medications. Try to look at this waiting period as a bless in disguise. Now you have some time to find a doctor you can trust to listen to about your TN and help you decide if you are the right canadite to have an MVD. Also that you trust enough in his or hers knowledge and skills for crawling around your head and slicing it open. This might be hard to think on as well but it also gives you some time to think how you will react or what you may do if the out come of surgery is not what you wanted. I know we should always try to think of the best out come, but I also believe we should be prepared when the universe has other plans for us, know what I mean there? Your insurance plan also might require that medication must be tried first before other more invasive procedures are done too. Lastly if you do not agree with your current doctors plans for your treatment you can always get a second or third opinion on it. Hope your day is going well and it is pain free for you.
Christine said:
Thanks for your response back. I am quickly considering surgery. I am working and I am having trouble with word retrieval. I have made mistakes and I am tired. The surgeon I went to today wants me to undergo the traditional approach with meds before considering the surgery. I naturally want a quick fix but too many around me say to wait and be patient. I just still cannot believe I have this. Not taking it well....
Kari said:
Hi Christine Thanks for asking on why my doctors think I'm not eligible for surgery. For starters my doctors think my body might be attacking its self and it would be the nerves that have to do with TN. This only a theory though but there is evidence that suggest this along with my family history of auto immune disorders and diseases. The next is mine is type two and since surgery is less affective for type two they don't like to do this. Also both doctors think surgery, nerve blockers or injections will end up doing more harm and damage than good. Lastly my age has something to do with it. I can remember fully the reason on this. I trust both of my doctors on this, my neuro has experience with TN and OHSU has a clinic for TN that is known for being one of the best for the west coast. OHSU alas actually my third opinion for surgery. The second opinion doctor was all gun ho to crawl around in my head with his scissors, but I did not trust him and there was something amiss with his clinic and him. After his opinion and his appointment I went back to my GP and ask to get a third opinion from OHSU after I read about their TN and pain managment clinics. It was crushingly numbing to be told surgery would be a bad fit for me and would not whisk away this horrible pain. I'm just coming to terms with it rather well and that appointment was back at the beginning of April this year. Certainly i hope everyone can be a canadit for any surgery, injection, or nerve blocker and be successful and not have to take any medication afterwards and of course be happily and blissfully pain free. I do want everyone though to be carefully selected for these procedures and not have any procedure that may or will cause more pain as they were not patients that would benefit from these. Any hoot there's my doctors reasons as to why no surgery blah blah blah is good for me. Hope that explains correctly to you and have a pain free day.
Christine said:
Hi Kari- do you know why they feel you are a poor candidate? Do you just have pain on one side of your face? Have you sought a second opinion. Not impressed with my neurologist and may for hitting the road for a new one shortly.
I think I developed my TMJ disorder because I kept chewing food using only half of my mouth (the other half was painful) for too long. Then I started experiencing pain in my facial muscles to which I paid little attention at first. I then had two oral surgergies, during which I kept clenching, within a month. Two days after the second surgery I woke up one day with a massive pain in virtually all of my teeth. I had a fever and I noticed that my teeth don't meet any more. I visited my dentist and he didn't find anything wrong, prescribed me antibiotics for the fever. Then for the next month I couldn't release my facial muscles, it was impossible, and it was driving me crazy. I got diagnosed with slipped discs and ATN only after my nervous breakdown when I researched my symptoms online. Muscle relaxants were a life saver then, also magnesium chloride helped a good deal. So in my case, ATN came first and I don't believe that I would get TMJ/D if it wasn't for my ATN.
Nir Morita said:
my story is deffernt than yours.. but still - i sympathize with the sentence that you have 2 a bit bad days a week - but you are grateful for the rest of the week. it's sad that we have to be grateful for a few "good" days a week.. . but at least it's better than 24/7 pain all day.
i do "wonder" something what is the cause... i mean - many "develop" TMJ disorderes etc.. but is the TMJD a result of the pain or the cause ? etc.
i mean - does all the other symptoms suddenly appear (like people say they have TN1 and "developed" TN2" ) - does it because that a person so much time in pain - develops more pain ? maybe he tense his muscles more etc.
Oldriska said:
I'm convinced my TN II started with medical negligence and the following dental work. Firstly, I wore braces on my lower teeth when I was 25 or so and my front teeth received a massive stripping (not sure if I'm using the correct word here) in order to fit them into the limited space in my mouth. I was happy with the esthetics of the result. Then I started to experience pain which I mentioned to 3 (!) dentists, only the third one took an x-ray, the two dentists before her sent me home saying I have beautiful teeth and that it's normal to feel pain from time to time, especially after the removal of braces. Well, it showed up that I had infection in the front teeth. Then followed a line of dental treatments on two of my teeth - root canals and root end surgeries, in the meantime I also developed TMJ disorder and my teeth no longer meet, which is frustrating. To cut long story short, after about 9 months of intense pain I had a nervous breakdown, ended up on a sick leave and had time to think about and research my symptoms. Upon my request, I got a referral to see a neurologist from my dentist, was put on Neurontin, which caused a bad depression even suicidal thoughts. I was weaned off, switched to Lyrica and I also got prescribed antidepressants from my psychiatrist. Now I'm feeling a great deal better than I was a few months ago, although there is even on a good day this tension in my teeth which won't leave. I still have bad days - maybe two every week but at least I get a break from the pain. I try to do things for myself, like going to a physio/acupuncturist every week, which also helps...I'm lucky that I've managed to keep my job so I can pay for these "treats" out of pocket. I saw a TMJ doctor recently and he says I need to sort my neuralgia first only then he'll see what he can do about my slipped discs - a sort of Catch-22 situation, needless to say, it gets tiring and frustrating from time to time:) Most recently, I've been referred to the Institution of Experimental Stomatology to see if I'm alergic to some of the material in my mouth.
Jasagrl even though we private messaging, I will put it here.
My pain started right after the anesthetic of a dental filling wear off, I had no pain prior to that procedure, I just wanted to get rid of the decay. Well, I never had this electric shooting pain, from the begin with it started with that tooth and muscle cramps to my lower jow, I just massage it all day, the tooth pain was constant drilling like. Now for couple of years the pain is in that tooth and once or twice immigrant to another, for some period of time. The drilling changed into burning along time ago, the pain is very locally and internally, I can't say my face hurt, it's the tooth that has a vicious pain 24/7. BUT I also have a vascular compression in close contact with the nerve distribution to the emergence of the nerve in the brain stem ( And not other than the superior cerebral artery -the infamous , most troubles making)...I am not sure what to do