I am very sad for youuuuuuuuuuuuuu.
Oh!! are you saying that you lost custody of your child?? I am soooo sorry...........I am crying
shepherdgirl said:
The ENT specialist tapped one of my teeth looked at an xray and said 'hmmm you have a lot of fillings, you probably just need another one'. I refused to leave before crying and telling him..9 YEARS of pain u tell me to get a fecking filling? MOST OF THOSE TEETH dont even have nerves. I then got a huge migraine and went into the neurology department and demanded to see a neurologist at once...childish i know but hey the pain got so bad they put me in a bed and gave me meds..two hours later a very kind neurologist apologised for the way the ENT treated me and said he was clearly not taking it serious. he gave me steriods and pain killers and referred me to a maxillio facial who looked at my ct and mri (which the ENT dr said was unecessary to look at!!!)..and then he said..well ur bones have rotted away and u have a hugge cyst you need surgery within a week...first time in almost a decade...i thought i was not mad...after so many doctors said 'go to the dentist'..dentist says 'go back to the doctor'..ridiculous
Most frustrating: Being told every time that I'm too young to have TN (I'm 28).
Most time-consuming: Being told it's a tooth ache/ear infection/TMJ/ear infection again/shingles/imaginary.
Most scream-inducing: Being denied by my insurance for a neck/spine MRI because the results of my brain MRI (which hadn't been done yet) had not come in to them yet. SMH
Most uninformed: "Here, take some Vicoden and the pain will all go away."
Is there something invisible that I'm not seeing for some reason? When I open this page, Shepherdgirl's comment is blank, and even here where you reply to her Min, the part that says "Shepherdgirl said:" is blank. Obviously it wasn't blank for you so I wonder what's going on with my computer.
Min said:
I am very sad for youuuuuuuuuuuuuu.
Oh!! are you saying that you lost custody of your child?? I am soooo sorry...........I am crying
shepherdgirl said:
So did you have the surgery Mangamel? Did it help or hurt your TN?
Mangamel said:
The ENT specialist tapped one of my teeth looked at an xray and said 'hmmm you have a lot of fillings, you probably just need another one'. I refused to leave before crying and telling him..9 YEARS of pain u tell me to get a fecking filling? MOST OF THOSE TEETH dont even have nerves. I then got a huge migraine and went into the neurology department and demanded to see a neurologist at once...childish i know but hey the pain got so bad they put me in a bed and gave me meds..two hours later a very kind neurologist apologised for the way the ENT treated me and said he was clearly not taking it serious. he gave me steriods and pain killers and referred me to a maxillio facial who looked at my ct and mri (which the ENT dr said was unecessary to look at!!!)..and then he said..well ur bones have rotted away and u have a hugge cyst you need surgery within a week...first time in almost a decade...i thought i was not mad...after so many doctors said 'go to the dentist'..dentist says 'go back to the doctor'..ridiculous
Enough to make steam come out of your ears like on the cartoons. Do you have a Dr. yet who does know it's TN?
Roselyn said:
Most frustrating: Being told every time that I'm too young to have TN (I'm 28).
Most time-consuming: Being told it's a tooth ache/ear infection/TMJ/ear infection again/shingles/imaginary.
Most scream-inducing: Being denied by my insurance for a neck/spine MRI because the results of my brain MRI (which hadn't been done yet) had not come in to them yet. SMH
Most uninformed: "Here, take some Vicoden and the pain will all go away."
That is exactly what my neuro said to me! "I don't know what's causing this. There's nothing that can be done. You'll have to live with it." Wow, he's supposed to be the best in the business and he's scratching his head! Really puts your faith in the profession.
kiya_b said:
The most uninformed: "There's nothing that can be done. You'll have to live with it." This from a dentist who barely paid attention as I tried to explain the problem, but had plenty of time to order bootleg DVDs over the phone. (I know they were bootleg because I heard him request titles of movies that were playing in the theatre at the time.)
The most unprepared: After getting a diagnosis, worked with an oral surgeon for many years who was successful with controlling the pain with medications. However, at year six we reached a point where the pain level would increase every few months, but each time I went to visit him he would ask if I would like to lower my med dosage.
The most ridiculous: "Your teeth are too sharp and will need to be filed down." Thanks Dr. Van Helsing. I'm just going to back out of here slowly and you better not follow me.
JahKiya
stop eating bacon and your pain will go away!!!
WOW this was from my long time chiropractor who I believe just doesnt have an answer for me
A NS told me after waiting for him for 3 hrs for a 1st consult "A Cowboy Can Only Skin so Many Cows in a Certain Time". Never saw him again.
" I don't think it's TN, let me write you a prescription for antidepressants". I told him he was fired and I wanted a refferal to a neurologist (which he did) and can I have an MRI while I'm waiting? (Iknow how long it can take to get one in this town). No.
Ist visit with neurologist she immediately ordered an MRI.
Unbelievable! And Janice, how would the chiro explain that we have members of religions which forbid the eating of pork, and yet, they have TN???
Reading these comments some of you have heard, I'm amazed again at how ignorant some doctors can be. SMH... There really should be more ways to provide feedback for others to read. My chiro also tried to tell me something similar about pork and meat in general and wanted me to become a vegetarian. I went the other way and went paleo and feel better than I have felt since my neurological problems started. Pass the bacon, please!
Anyway, my first neuro appointment about the TN will be Thursday (it was my GP to diagnose and refer me) and I hope I don't have any ignorant quotes to bring back from that one. I do have some nice ones from previous experiences though as I've been in MS testing for over a year.
While in hospital I took a fall trying to walk from bed to bathroom as my legs were quite funny at the time. The on-call doc that they called in started shouting at me that I was a stupid foreigner and a ball breaker and that I had to get up and stay in the bed. Without helping me or asking if I'd hurt myself, etc, he stormed back out into the hall shouting and swearing at any of the nurses within earshot of how stupid patients could be. It was only 7 pm and I'd called for a nurse's assistant an hour before for help to the bathroom.
After this I went to a new hospital for a second opinion. While there, a neuro making daily rounds gave me a twenty minute lecture about how greedy I was for using healthcare in a foreign country (we pay a significant amount of taxes and I'm married to a local) and that I didn't need a neuro, I needed a gyno and to lose weight (I'm an L, and I'd guess she was an XL) if I ever wanted to be a mom, etc. Then she started muttering about how there was nothing wrong with me when I clearly had one eye turned in and twitching back and forth and walking was still risky business.
I've found that for every good doctor there are 9 who are in the wrong profession. Now it would seem that I've had what's now been identified as TN since August and hopefully the neuro the health system assigned to me for the problem won't be a letdown. At least my GP is able to back me up this time just in case. :)
Laura
Im so happy I found this discussion I was just thinking about this and wanted to vent!
I saw a renowned neurosurgeon who absolutely would not tolerate any discussion when I brought up TN. I tried explaining that there is a second type (i have ATN) and he barked at me that he was an expert in TN and that there is no second type. He compared himself to a rooster and me to a baby chick in terms of our levels of knowledge. When I tried to explain again he said I was being really quite stupid and told my dad I may have OCD. This was all in front of 5 observing interns and my parents. I wanted to rip off his bow tie and throw it in his face....yes he was wearing an actual bow tie.
This last week from my GP (whom I love as a doctor). “Yeah you are walking really bizarrely. I think it’s neurologically.” Not the answer I wanted to hear nor was “I don’t think it’s gonna just walk its self or walk out the door; I think we’re looking another problem here”. This last answer was him helping me not to just break down in a little puddle. The appointment was over my difficulty walking as of late and not TN related but I had to share.
On the tn side of things though here’s one for you all. This was from the first pain managment doctor I saw last year. “Oh yeah I see TN all the time, everybody has it. All we need to do is go in you head and cut the nerve off completely, then you be fixed. We can do it in my office.” Considering his office did not have a surgery room was clue of crazy doctor, clue two was everyone has tn, and there were other clues. I just walked away and did not go back. Honestly I think he just wanted me as patient so he could add TN to list of diseases he has treated.
Kari what a scary guy that Dr is! What if someone trusted him to do brain surgery in his dirty office?? Suure, sounds like he knows all about it. lol. NOT! That's actually exactly what my first TN Dr. told me too, but not to be done in his office. lol.
The first neurologist I saw after my sinus surgery failed to relive the pain (referred to by GP) was in an out of the exam room 3 or 4 times busy with other things. About all the info he got was I was on Lrycia and it wasn’t helping, and I’ve been to 2 seperate ENT doctors and both said there is nothing wrong with my Sinus’s sicne surgery did not help.
He told me the other doctors were lying because lyrica would have relived any pain caused by a neurological condition, and I should go back to them to look at my sinus’s again
So according to him, everyone here who has pain is not relieved by lyrica, guess what? You don’t have TN!
Years ago I went to a major hospital for a consult with an endocrinologist in reference to my thyroid disorder. I was on synthroid but gaining weight like crazy and sleeping 14 hrs a day. The endocrinologist I met with was head of the department but a total ass. He advised me to...wait for it..."stop reading womens magazines and getting your symptoms from there and to get a real job and get off your fat butt" I swear this happened!!
My endo I have now found out that the test results are not accurate for me and for some reason I get a false reading, I also have a neurologist working with me now to find out what other auto-immune disease I have because she feels that something has been missed in me for years.
Wendy
I just thought of another little nugget. I went to my neck doctor, he specializes in sports medicine and is an MD and physical therapist. I am having issues where carpal tunnel has come on overnight with no reason, so I go to him thinking perhaps he can check my neck. This doctor proceeds to tell me I have MS and he has never seen a TN patient that didnt. I told him that is old school thinking. I also advised him that three top neurosurgeons in the country, including Dr. Ben Carson have said I dont have MS.. This doctor tells me he is ordering a spinal tap to prove them wrong!! He told me they were all idiots....I cannot repeat what I said to him on the way out the door....this idiot was going to make me a pincushion just for his ego..
Wendy
Hey shiela, yes i did have the surgery. I had to do it even though i was told it may change nothing of my pain because it was a ‘damage control’ type situation. I feel i breathe smell and taste better but i have been left with new and different pain. However, pain caused by chronic infection with fevers, night sweats and a feeling of fullness in my face all lessened considerably. On the tn front no change for the better but regarding other symtoms i suffered it did help yea x
Sheila W. said:
So did you have the surgery Mangamel? Did it help or hurt your TN?
Mangamel said:The ENT specialist tapped one of my teeth looked at an xray and said ‘hmmm you have a lot of fillings, you probably just need another one’. I refused to leave before crying and telling him…9 YEARS of pain u tell me to get a fecking filling? MOST OF THOSE TEETH dont even have nerves. I then got a huge migraine and went into the neurology department and demanded to see a neurologist at once…childish i know but hey the pain got so bad they put me in a bed and gave me meds…two hours later a very kind neurologist apologised for the way the ENT treated me and said he was clearly not taking it serious. he gave me steriods and pain killers and referred me to a maxillio facial who looked at my ct and mri (which the ENT dr said was unecessary to look at!!!)…and then he said…well ur bones have rotted away and u have a hugge cyst you need surgery within a week…first time in almost a decade…i thought i was not mad…after so many doctors said ‘go to the dentist’…dentist says ‘go back to the doctor’…ridiculous
I just had an experience last week but it`s not about TN. I``m having pretty serious heart issues and horrid symptoms to go with it, and the SPECIALIST that I was sent to for it, when I asked if there is a pill or remedy, he said ÒH I THINK YOU CAN TAKE IT! You shouldn`t have to just `take it`` when your heart is in danger and there`s an easy remedy!