I was diagnosed at pain management as having ATN. After this lower jaw surgery and the mental nerves stinging to a severe state they put me on nerve meds. Some help some make it worse.
I got really bad news no one wants to go back in and fix what this surgeon did. The Mayo Clinic has too many trigenimal Nueralga patients they aren’t accepting more meaning I’m not a patient.
I also tried to save my teeth why I got the surgery but am getting dentures. I’m 33. I wish I should have gone to the dentures.
I’m in pain in my trigenimal nerve. I’m on tripital but want to try pamelar.
My surgeon is not symphatetic. This isn’t trigenimal Nueralga but located in my mandible in my mental nerves. Which is in my trigenimal nerve.
My pain doctor said there are 20 meds that can treat this and I’m going to show him this forum. He treats a lot of facial pain and this forum can help him
Have you tried using lidocaine (cream or patch, although I suggest the patch) along the nerve branch that’s bothering you? I’ve had amazing luck with it in dealing with my ATN. I’ve also had very good luck with gabapentin, which I’m taking now. Trileptal worked for me for awhile, but I had much better luck with lamictal in the long run.
I’m so sorry to hear about you losing your teeth! But, maybe it will be for the best. Maybe there’s something ongoing with you teeth that’s triggering ATN. My fingers are crossed for you.
My ATN is from dental surgery too, in my case a difficult wisdom tooth extraction. There is nothing surgeons can do to fix my nerves, so medications are the only option. I am on Nortriptyline and Lemotrigine, with both at a low dose I have been able to dampen the pain most days without extreme side effects. With bad breakthrough pain I have also been using the Lidocaine patches or creams. They take the edge off.
So Mayo Clinic is seriously not accepting anymore TN patients?! How is it possible that a medical facility can in essence say that we have too many people suffering with pain so we are not helping them anymore?
I honestly don’t know. I was very distressed that day when that was being said. It was the second time I had a screaming match. The new people with the condition can’t go and get help. It bothers me so much. I had so much respect for them and then this. No respect for them what so ever anymore. They were supposed to be my saving grace and for others who try to get in for this are going to feel like me and that bothers me. Patt it’s not a rant you are just worried about others and that makes you a good person
Thanks for the response. Did the surgeons say why they can’t go in and fix it? I just got my pamelor today it’s going to replace my Elavil which makes it worse. I have been prescribed lidocaine and it does not help that much I’ve been using benzocaine at 20 % relief for an hour. I’m sorry for wisdom tooth distraction. I’m still praying that I get my mvd surgery even though it so late In the game. He’s afraid to do it because so much time has passed and my jaw can break down the middle but I don’t care anymore. Dentists and Oral surgeons seem to think they know everything when in reality they know nothing about the thee nerves in the mouth. I’m thinking about you
I have a partial that I glue down on my bottom and it makes the pain worse. The dentures will I’m sure take away the tooth pain. I don’t have back teeth anymore. I tried lidocaine only 20 % effective but have luck with benzxocaine
The surgeons will only search for compressions back behind my ear, inside
my skull. But because the damage happened in my mouth I am not surprised
they can’t find anything back there. Many surgeons won’t touch anyone with
ATN who does not show any signs of damage on an MRI because the out comes
are very rarely positive. Even if a surgeon was willing to try, I won’t do
an MVD behind my ear because I don’t believe it would help. In all my
research I’ve never heard of an MVD taking place closer to the face, so
surgery is not an option.
Unless you count having a subdermal electrode system or whatever they are
called. I would consider that, my external TENZ unit is quite helpful. But
as long as my meds are making life bareable I will avoid any cutting. I
have a history of wierd scar tissue growth and any surgery could have bad
outcomes from the scar tissue.
There is a surgeon who will do the mvd in the mouth for me not behind my ear but he wanted all routes taken. He’s in Georgia and there are risks involved. My jaw could break down the center because I have little bone but since he does the jaw surgeries so he could fix that. He said the chances are 10% that it work but he did say he would do my surgery if I wanted to. out comes yes very rarely come out positive but in my gut I know this is the route to take. How long have you have this? if he decides on it would you like to give you his name? he’s in Georgia.
Don’t give up on your mouth. I’m not. I think during the surgery something is compressing my mental nerves. I have full feeling in my bottom lip but with a horrendous sting. My dentist said he would numb me if my pain got too bad. Your case sounds like mine. is your lip involved?
My lips are not very bad, the tingle a bit but they are actually the least
problematic part. My pain mostly feels like it is in my bones and skin. My
jaw, teeth, bone right in front of my ear, and cheekbone, and the side of
my nose all ache terribly. My teeth where what first started hurting, and
it felt as though it spread out from there that first week I had pain. That
was almost 3 years ago, November 10th.
I woke up with pain randomly one morning, 6 years after dental surgery had
left me with minor numbness and tingling in my lips and mouth. It was
intermittent and didn’t hurt so I ignored it mostly. A had a tooth get
abssesed from a bad cavity and that turned my nerve damage from
numbness/tingling on occasion, to perminant severe pain on the left. I
still have the same number/tingles on the right. But I’ve yet to find a
doctor who believes the connection between the surgery and the pain brought
on by infection years later.
I am in WA, and at this point travel all the way over the country for
treatment isn’t really worth it. But I am interested to hear how your
surgery turns out. This is the first I have ever heard of someone looking
for damage in your actual face, let alone trying to fix it.
You are different from me but dear God your left side. Do the meds touch that side? Did they give you antibiotics for the infection? I feel so bad for you. I just hope with what ever meds you are on lessen the pain. You are in my thoughts and I’m telling you dentist’s don’t know what wth they are doing.
The antidepresants and anti-seizure drugs take the pain down from
overwhelming to kinda dull ache pain most the time. If I am exposed to wind
or heat or cold it will increase. If type 1 triggers are like a gas oven,
Instant severe heat (and by heat I mean pain) mine triggers like an
electric oven. I can step into a wind or eat something hot and be fine in
the moment, but over the next 10min it will “heat up” and next thing I know
I have to go lay down it hurts so bad. Usually the only solution if I get a
bad trigger is lidocaine cream and sleep.
As far as the infection goes, it was 3 years ago, I got the infected tooth
pulled, and antibiotics for the infection, it was cleared up in a week, but
the pain never left.
Changed my whole life though, I went from working full time and living on
my own to unemployed in my parents basement, spending my days begging God
for pain relief, since then I got married and tried several part time jobs.
I found one I can do with out too much stress, but it is not in my field,
and I feel like my $40,000 education was totally pointless since I only got
to use it for 2 years before this hit me. But over all life is good and I
am very blessed with a supportive husband who never makes me feel bad for
my limited money making.
I had to give up my career, too, which did originally make me feel like college was a waste of time - but it wasn’t. Learning for the sake of learning has value! And, as long as you’re making your bills and have a bit left over for something fun now and again don’t worry about how much money you’re bringing in, there is much more to life than money.
Focus on living and being stress free, not on what education level you have and how much money you make. I truly believe simplifying your life will help you manage your pain. You’re on the right path!
I feel so bad for you but glad the meds take it down and am glad you found a stressless job even if part time. My job is very stressful. I’m glad you have found an amazing husband and honestly he cares a lot about you. KIT w me
I don’t regret the time and things I learned in school, I just wish I had the physical capacity to pay back the $38000.00 I still owe on my student loans. College is stupidly expensive, and now I don’t get any monetary value but I still have to pay. And while I believe money is far from the most important things in life I do like to do things like eat, and live indoors. Those are outrageously expensive “hobbies” in the greater Seattle area (ranked like 4th most expensive cost of living in the country, only behind San Fran, NY, and Honolulu) but my husband is unlikely to find jobs anywhere cheaper, since he is in a technological field.
As far as “as long as you make your bills” since my pain started several times I have not, without the monetary support my parents have given me I would not have been able to pay any of my bills for almost a year. I am eternally grateful for the money they have given me, but I hate that they had to do it.
My pain is as managed as I think it ever will be, and I work hard to balance between physically being stress free and avoiding the depression that comes with being overly bored and unproductive. Honestly I am doing well. I just have some wishful days when the bills come in or the breakthrough pain is bad where I miss my old life and plans I had for my career, and I don’t think that will ever end, and that is ok. It doesn’t bum me out long term. If I didn’t get frustrated I would not be a normal mentally healthy human, that would be some major suppression or masochism or something like that.
Don’t feel bad for me, what is, is. We are all here because life threw us a nasty curve ball. You seek treatment, learn what helps and what hurts, you adjust habits accordingly and you keep going.
I have not. And I am working part time, after a year off work while I found
medications I could live with. I want to keep working part time, and the
few disability aid type things I have seen you either are a “can work” or
"can’t work" there is no aid for “limited work.” Maybe I just haven’t
looked in the right places. Are there links or resources for this
vocational thing you are talking about?
Also, I am pretty sure loan forgiveness is usually only available on
Federal loans, and 60% of mine are private. But getting 40% forgiven would
still be very helpful.
Thats why you want Voc rehab involved. They can help manage the “ticket to work Program” which essentially allows you to earn upto $1,170/month (I think might be more in 2018) Yes you are disabled which allows the student loan deferment thing. although if done through SSA/Voc rehab is less permanent (its a three year look back) The requiremnet is "substantial Gainful employment. You are NOT penalized for trying. Anyway you can call Nelnet seven days a week at 1-888-■■■■■■■■ from 8 a.m. to 8 p.m. Eastern time to get information on starting the student loan part of it. Voc rehab in Seattle is: (206) ■■■■■■■■
I really like it when the moderators step in and give some very valuable info.
I am in Canada
so does not apply BUT
I am sure a moderator would come up with ideas for me ,too if I asked.
This atypical pain is the worst.I am glad that it is being recognized for the demon that it is.
Thanks TJ, I had researched and still somehow never found these specific programs. I don’t know if it will get me anywhere, but I do plan on at least researching it more. My worry is that my new job brings in $1100-1600 a month depending on how many hours I am assigned. That would put me barely over the limit for 2018 of $1180 on most months. My 3 year anniversary of waking up in pain is in 5 days, and I have tried nearly all the medications and the best combo still leaves me with low-mid level daily pain, so I am pretty sure this is gonna last. My worry is that I am “too functional” for aid, but not functional enough to support myself. We will see what they say.