Its summer and we are all a little languid. I have a lot of mail and read lots of silly things members are told by the Medical Profession. Without naming names lets talk about the looniest/craziest thing you have ever been told about TN.
Mine's not so bad but when I was diagnosed in the ER I was having very bad shocks every time I opened my mouth. I saw a very harassed young woman who knew immediately what was wrong with me. As the pain was so bad I wrote down everything I wanted to say and YES!! she gave me a big telling off for not talking and told me to practice it when I got home!!!
This is mild compared to what you guys have told me so lets have a little laugh (or cry) at your stories.
One Dr. said "It's all in your head." I replied "Yes, the pain IS in my head. I'm glad you know that much about it." My sarcasm was in reply to his insult. Then he said "No, I mean it's just your nerves." I replied, "You're right again. It IS nerve pain." He gor mad and walked out and I just dealt with it on my own because back in 1996 the internet was very sparse compared to now. No way to search except in the hospital library.
That lady who told you off for not talking, she's just uneducared and has not experienced the same pain as you.
I think the craziest thing was when I kept going back to the endo. and complaining about the tooth he had re-done the root canal on. As I was leaving the office he said, there is nothing wrong with the tooth and I need to find something else to do...My daughter was in the reception area and I asked her if she heard that, and she did. I was appalled, to say the least. At that point, I found something else to do, went to my neuro and got put on neurontin, and left a nice voice mail on the endo's message system explaining all of this to him. Min
Min, they are not thinking of how we feel. They are thinking that we are faking and getting a fake permit to park where “only wheelchair patients” should be. I know I sure get mad when I see a very expensive car there without a permit, because they figure a fine is nothing to them. People don’t often think of others’ feelings anymore. I got my husband out of his shyness by repeating that everyone is so self conscious of themselves, they are not even paying attention to any of his “believed” imperfections.
It would be nice to have some comeback lines when we hear things like that. For most doctors, we are people in pain and they are compassionate people. For others we are just a challenge, a puzzle to solve. Some do it well, but sometimes we run into someone who's ego is used as a shield behind which they hide incompetence and when a challenge cannot be solved, they diminish the patient (it's the patient's fault). Here in the US, it would be nice to be able to get your money back though.
In my experience, this applies to other professionals too. Those with large egos, use them to hide incompetence.
Pretttty much… Carolina. It’s just sooo wrong that some doctor’s do that. I feel for all the people that have gone thru this humiliating experience. Min
Lawyers and Dr.s earn their living from the suffering of others. They used to have more compassion, but after learning that they are under so many tiny regulations, that even when they want to help, often their hands are tied, this is why they get so angry and take it out on us. They are caught between the authorities and the patient. It’s rare to find kind Dr.s these days. So many with TN get referred to psychiatrists just because the Dr. has not done any research and is not willing to. I actually got told by my Dr. that he didn’t have time to research what was wrong with me. I said “Did I hear you right? Isn’t that your job, to find out what’s wrong with your patients?” Also, what’s wrong with his PATIENCE. If he doesn’t have patience, soon he won’t have any patients either.
I think I’m luck with my current neuro as well. At the beginning when I went for follow ups he would not remember why I was there. But he gave me my life back… since I started to see him. I was with another neurologist before him. He gets frustrated when things don’t work but overtime we have develop a decent doctor-patient relationship, which is important to me. He is knowledgeable, and apparently has several other TN patients.
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.
So I'm sitting in the treatment room waiting for the Neurologist. He enters with the MRI and the Primary care Doc's diagnosis in his hands. He watches me talking painfully out the side of my face. He says "Is this why you're here?'
I respond "Yes, and when I leave here I'm going to take several pain pills, two glasses of wine and smoke something so I can talk clearly with my friends at dinner tonight" He says, "I think I have something better for you'" He was right. (Mostly)
When the PA and the RN were discharging me from a night in the hospital and they kept referring to my “TMJ” after correcting them 3 times I told them perhaps they should read up on what conditions their patients have.
My favorite is (when trying to get him to explore TN/ATN instead of just writing it off as Migraines):
"Even if there is some fancy name for what is wrong with you, if nothing can be done, does it matter if we figure it out?"
Needless to say, my response was, "yes, how can you treat what you do not know how to identify? And even if there is no fix for it now, there might be some day, and it would be good to know what research to look at" "Fair enough" was the answer. I switched Neuro's right after that :)
I escorted my friend to the orthopedic clinic (broken shoulder). While waiting for her, I wandered over to the neurology clinic attempting to find out the number of TN patients treated there. The appointment clerk said he would try to find out. (He had never heard of TN). He went off to talk to people and when he returned, he said," You should go to the Oral Surgery Clinic."
Wow - sounds par for the course -- why can't we have a national / international movement like on Wallstreet for TN!
SF Bill said:
I escorted my friend to the orthopedic clinic (broken shoulder). While waiting for her, I wandered over to the neurology clinic attempting to find out the number of TN patients treated there. The appointment clerk said he would try to find out. (He had never heard of TN). He went off to talk to people and when he returned, he said," You should go to the Oral Surgery Clinic."
I told one doctor that I had a severe reaction to Lyrica and my feet swelled so bad, I couldn’t wear shoes, so stopped the medication. His response was that I didn’t have to wear shoes!
Say what? I bit my tongue, but almost suggested he stop wearing shoes and see how that works out for him. #%*%
I had TN for 4 months only when I started getting pain on the opposite side of my face, off to “one of the best neuros”, I had seen her once already.
I told her what was happening and she says…
" you can’t have bilateral TN, you’re 29 and don’t have MS"
Needless to say, I never saw her again…fast forward 10 yrs I still have bilateral TN. No MS.