I was talking to my insurance coordinator online the other day and asking about neurosurgeons. We were talking about my TN. So she chimed in that SHE also has TN and that what in the world would I want surgery for?
I'm guessing that everyone's TN is different but that just really hit me wrong. I have had attacks from all 3 branches of the nerve and well if you would have handed me a gun during the attack, I might have used it. It was surreal and awful. I have lupus and PN and I know pain. This was a 10 on the painscale.
Do you ever get people like this? It really rubbed me the wrong way.
I am fighting with my disability insurance over this. They put me under review every 4 weeks and until they finish they hold up my checks. My doctor took me off of work and they still send me for review. I wish they could live a day in my life and see what a struggle it is. The spoon theory made so much sense to me because I really do have to choose what I am going to do every minute of every day to try and to keep from incapacitating myself for days. They are clueless what the meds do to you. They are clueless about the levels of pain. They are clueless that a fan blowing or a breeze hitting you or walking into a place that has the air conditioning up too high or a splash of water on your face can trigger an instant reaction. They are clueless that I can start throwing up at any minute because the level of pain can increase tenfold within a few moments. I wish they actually had an idea of what we all go through on a daily basis just to get out of bed and take a shower.
I'll tell you why I flew across the country to have my brain opened up - TO HAVE A CHANCE AT ELIMINATING OR REDUCING THAT DAMN PAIN! Nobody WANTS surgery - but with me the meds were worse. I lost all my IQ points and was a blob of nothing until I was proactive. i HOPE you look at the doctors recommended here.
I think people don't think before they speak. I guess maybe your insurance coordinator did have minor-ish, livable TN
or she might not have said that.
When I got TN - my new boss at my new job - said "I don't know if it is you or your new meds, but you are not learning this stuff!.....which is it?" I was feeling so low that I had to quit my first professional job. I was terrified that in one month I was the brightest crayon in the box, and all my new coworkers would come to me for help - then I was just DRUGGED.
I QUIT "under medical leave" and Later I found out that she had big up and coming health problems - and it's the best job I ever could have GIVEN UP - Child Protective Services is a hell hole to work in and nobody had any time to hold my hand or worry about me driving kids around on these stupid drugs.
Whew
Sorry
I hadn't let that one out in a while.
I hope you are not at the upset level that you were -- it's gonna happen - we can be mad at the "insensitive types" OR we can feel sorry for them because they don't know better I guess.
No I'm not still THAT angry. But when it came out of the mouth of the very person I called to HELP ME get into a neurosurgeon who specializes in cranial neuropathies, it was just much worse than if it came from anyone else. I was after all trying to do something about it and the very person I needed to help me DO something proactive was questioning me based on her own experience with MILD TN as if all TN is that way.
I don't know.. yes it happens all the time..I have systemic lupus and noone even knows what it is except that it's usually NEVER lupus...on "House" that is. LOL
I did realize something lately though. That most of you here are not looking for WHY you have TN or what caused it, just effective treatments. Comparatively speaking, I seem to be preoccupied with the WHY...maybe because in my case I have multiple cranial neuropathies, or it's the tremendous pain or the hope that more effective aggressive treatment of my lupus COULD minimize or even make the TN go away??????
I suppose it's a stupid thought. I take tegretol. It helps alot. I'm thinking about botox since my attacks are coming closer and closer together....
I wish you pain free days...for sure...Love and HUGS, Julie
ps I'm glad it worked out in a positive way for you and it brought you out of a job that you might have never been happy with...sometimes things have a way of working out... :)
Sorry about the rudeness you recieved from that person. I have never even meet another with tn, and doubt I will in the area I live in.
As far as finding the cause of mine, I went about 13 months trying to find the why. All of doctors I have seen can not figure out the why on this. There are guesses for example I have a real strong family history of autoimmune diseases; so one guess is my immune system is attacking that big ol nerve. Another is it is too small of a micro cell issue that medical science is just not there yet on. After seeing nine or ten doctors on this and trying to figuring out the cause with being left on frustration I’ve moved me energy to controlling my pain levels. It was hard to give up on finding out what caused my tn, I cried just over that. It is frustrating not knowing what the cause was is. In the long road I’d just rather have peace with just the acceptance of this nasty disease. Since surgery is out for me, and my only hope is medication for life; I decided my first step towards acceptance was just the acceptance of not knowing why or how I got this. This is just me, and my case everyone of us is different. I really hope that your able to figure out the how or why in your case and can be pain free soon.
I have just now gotten a dreamy job after all this - and Only recently letting go of "Why this careless oral surgeon yanked my head around and caused this" - I wanted to sue, I wanted to do more than write him the nasty letter I sent = I want to set his millions of dollars on fire -- because Fire was in my face- the same day he worked on me = but it was the Opposite side. I know he knew way sooner what it was before he sent me to neurologist. Glad he did that much.
I should/am keep working on forgiving him as it will stop me from taking the posion that is meant to finish him off!
I have to remind myself - now that I'm back to glass 3/4 full old self, that
"why does my son have aspergers" and "what am I supposed to learn from TN" can drive one batty.
Trying to concentrate on WHY I am one of the luckiest people I know, and take one day at a time as a gift --- as I work in Hospice.
Keep Posting!
jujubeee said:
No I'm not still THAT angry. But when it came out of the mouth of the very person I called to HELP ME get into a neurosurgeon who specializes in cranial neuropathies, it was just much worse than if it came from anyone else. I was after all trying to do something about it and the very person I needed to help me DO something proactive was questioning me based on her own experience with MILD TN as if all TN is that way.
I don't know.. yes it happens all the time..I have systemic lupus and noone even knows what it is except that it's usually NEVER lupus...on "House" that is. LOL
I did realize something lately though. That most of you here are not looking for WHY you have TN or what caused it, just effective treatments. Comparatively speaking, I seem to be preoccupied with the WHY...maybe because in my case I have multiple cranial neuropathies, or it's the tremendous pain or the hope that more effective aggressive treatment of my lupus COULD minimize or even make the TN go away??????
I suppose it's a stupid thought. I take tegretol. It helps alot. I'm thinking about botox since my attacks are coming closer and closer together....
I wish you pain free days...for sure...Love and HUGS, Julie
ps I'm glad it worked out in a positive way for you and it brought you out of a job that you might have never been happy with...sometimes things have a way of working out... :)
I'll tell you one thing I've learned...that doctors are not fallible, that they make plenty of mistakes, that some ignore clinical symptoms, that some don't listen. And I will NEVER EVER AGAIN trust a doctor implicitly about any condition without research and thorough consideration (2nd opinion) and that I will never again stay with a doctor I am not comfortable with. They work for ME and not the other way around.
I just had a rheumatologist tell me he would be the laughing stock of his hospital if he treated me with Benlysta, the first medication in 50 yrs to be fda released specifically for lupus. I found out the reason why was that the hospital does not approve new meds until 3 yrs after release and therefore his decision was not for MY GOOD but HIS.
Some doctor, huh? Nice! I fired him. And boy oh boy did I tell him why. I also reported him to the lupus foundation.
Nope. I've known her for years now. She helps me get procedures, meds and referrals covered. Nah...she doesn't care that much about the insurance...it's state insurance, LOL She's there really just to help.
I think doctors don't realize the pain either. Now to be fair, MY neurologist and GP did. I MADE my rheumatologist understand the extent of it, but my other doctors, not so much. Ithink they think it's a light nerve pain that brushes against your face. It's unbelievable how they don't get it.
I don't know about you but my left facial muscles pull towards my cheek and it twitches. It feels as if someone is trying to pull my teeth out of my mouth through my face. All the while my forehead feels like it's in a vice.
light wind, oh yeah right. This thing is a nightmare.
People just don't realize how bad this is; my dentist said to me several times that a lot of people get tooth pain when the weather's bad - that it's kind of normal (in other words, she was suggesting I should put up with it), to be fair she didn't know I had TN then, I think she was tired of me calling her office complaining about pain every other week.
I'll tell you one thing I've learned...that doctors are not fallible, that they make plenty of mistakes, that some ignore clinical symptoms, that some don't listen. And I will NEVER EVER AGAIN trust a doctor implicitly about any condition without research and thorough consideration (2nd opinion) and that I will never again stay with a doctor I am not comfortable with. They work for ME and not the other way around.
I just had a rheumatologist tell me he would be the laughing stock of his hospital if he treated me with Benlysta, the first medication in 50 yrs to be fda released specifically for lupus. I found out the reason why was that the hospital does not approve new meds until 3 yrs after release and therefore his decision was not for MY GOOD but HIS.
Some doctor, huh? Nice! I fired him. And boy oh boy did I tell him why. I also reported him to the lupus foundation.
I work in the insurance industry, that is , when I am working, out on disability now. The first adjuster I had was rude as could be, she told me she was going on vacation in 3 hours and I needed Hopkins to get all my paperwork in by then. I asked her who was covering for her since she said she would be gone for 3 weeks, she advised me no one. I then advised her I was also a licensed adjuster and federal law states someone must be in the file every 72 hours and that she was full of crap. I got her supervisor and asked to be assigned a different adjuster.
My point is, sometimes customers and adjusters dont mix well, I have had customers hate me or love me. As an insured you have a right to ask for someone else. I lucked out and got someone who had had other claims of people with TN and has been very understanding and knowledgeable. I would be uncomfortable with her comments as well, its one thing to try to empathize with people, its another to belittle them. I would ask for her supervisor and tell them you would like another adjuster.
Please feel free to message me if you have any questions, I am glad to help
Wendy
jujubeee said:
No I'm not still THAT angry. But when it came out of the mouth of the very person I called to HELP ME get into a neurosurgeon who specializes in cranial neuropathies, it was just much worse than if it came from anyone else. I was after all trying to do something about it and the very person I needed to help me DO something proactive was questioning me based on her own experience with MILD TN as if all TN is that way.
I don't know.. yes it happens all the time..I have systemic lupus and noone even knows what it is except that it's usually NEVER lupus...on "House" that is. LOL
I did realize something lately though. That most of you here are not looking for WHY you have TN or what caused it, just effective treatments. Comparatively speaking, I seem to be preoccupied with the WHY...maybe because in my case I have multiple cranial neuropathies, or it's the tremendous pain or the hope that more effective aggressive treatment of my lupus COULD minimize or even make the TN go away??????
I suppose it's a stupid thought. I take tegretol. It helps alot. I'm thinking about botox since my attacks are coming closer and closer together....
I wish you pain free days...for sure...Love and HUGS, Julie
ps I'm glad it worked out in a positive way for you and it brought you out of a job that you might have never been happy with...sometimes things have a way of working out... :)
People say dumb things. You know that even I say dumb things, and you and I are close! Also, we are extra-sensitive due to hypersensitivity caused by constant pain ramming our central nervous system. Yes, my ex husband and mother in law have both been very mean about it, hubby even left after the third time he had to take me to the E.R. after me adoring him for 20 years. Hubby's grandfather got TN from shingles, and hubby's family just refused to believe that I could be in the same amount of pain as he was. I had one lady grab my face. I told her where my pain was and she grabbed both sides of my face with one hand and said "oh? Here?" I almost fell to the ground. I wanted to hurt her back! lol.
I guess she has heard about all the failures of the surgery. We are taught that way up here in Canada too, that it can make you worse, and that it doesn't often help. Even if that might not be true, thats what we are told, and our province will no longerr pay for MVD surgery due to the high failure rate. So, she has a right to her opinion. I don't think she meant to hurt you. She was concerned that you might not have a good outcome.
Maybe Sheila. I had the distinct impression that she wasn't even aware there WAS a surgery for TN. After all, it's just a slight inconvenience...at least that's all it was to her. Why would anyone need surgery for something that hardly hurts?
Blah. Family can be so MEAN. Well you know what I think about ur ex. That goes without saying that it was unusually cruel. And if anyone doesn't deserve that treatment, it's YOU. When my sister found out I had lupus she said "oh sorry bout your lupus, but now we know why your lupie in the head". Wasn't a joke. Kind of funny though I guess...and this is coming from the mouth of a psychiatrist. Some counselor. I think she got her doctorate in a cracker jack box. ha.
Anyway pain is personal and relative. My 6 might be someone else's 10. It's funny the things our bodies get used to. THIS TN THING though is a monstrous condition. It's absolutely surreal that nerve pain could be so cruel, and I've had pretty severe peripheral neuropathy for almost 15 yrs now. I graduated from that PN to nerve compressions everywhere from my shoulder and neck to my toes. It's bad, but let me tell you nothing is as bad as TN. I FEEL for each and every one on this board.