I was referred to neurosurgeon consult by pain doctor. this guy made me feel so uncomfortable that I finally just asked him what he wanted me to say as my symptoms seemed to "displease" him in some way. After hearing my symptoms, he diagnosed type 2 when clearly my symptoms are type 1. I got the distinct impression that he wanted to "move me on" and type 2 was an out for him as it doesn't respond to surgery as well as type 1.
Further confusion ensued when he showed me results of MRI indicating a nerve laying on my T nerve that would be TN and very painful. He wants to refer me to the doctors who invented the surgery in Pittsburg, PA....Really? anyone else experienced these feelings or gotten this vibe from surgeons/ I am a psychologist and did not appreciate his insinuation that I had a DSM IV disorder.
I live in Tulsa, OK BTW!, Thanx for a quick response, Baci, pronounced botchy as in bocci ball. baci also means kisses in Italian. She weighs 4lbs and is black all over! My name is Maryan
Welcome to the group and I am sorry you are dealing with pain and a specialist that was less than helpful.
I would find another doctor, it is not worth the time, money, or effort to stay with someone that is not going to be supportive.
I am sure others will be along with suggestions but in the mean time if you look at the tab labelled ‘doctors’ up on the right hand side you might be able to find someone that is recommended and geographically close.
Hi Maryan, I had a doctor tell me I was just looking for drugs...moved on from that real quick. If a doctor is not responsive or makes you feel that they dont have time for you, it is time to start shopping. I have found that it is in all our best interests to become as informed as you possibly can about all this. There are a list of doctors on the tab in the upper right of the page, you may want to see if there is someone closer to you.
I have found that dealing with a doctor that is not experienced in TN is a waste of time, I am lucky that my family care doctor talks to me about this and really relies on me to tell her different drug therapies etc, because she isnt really familiar with this disorder. I also went to a neurosurgeon that all he does is TN surgery, there was nothing I told him that he hadnt heard before and it was nice to talk to someone who validated all of my pain and side effects
Maryan, I hope someone will make a suggestion for you very soon. Other than look at what is on offer when you click the button on the home page -Dr's we Love- it is hard for me to work within the american health care system.
Hi, Maryan. There is a wealth of information on this site for you and a lot of support. I'd agree with Trish that you probably need another doctor. The one you have has either mis-communicated or simply doesn't understand which symptoms correspond to Type I (Classic) or Type 2 (atypical) TN. However, few doctors who have serious training in pain management would jump to the conclusion that any element of your pain is psychogenic. To start your search for a resource more local to you than Pittsburgh, you can take a look through our Doctors Tab in the top page menus of the site. Otherwise, friend me and I'll try to put you in touch with the present Chairman of the TN Association Medical Advisory Board. He and several of his colleagues were students under Dr Peter Janetta who first popularized MVD for facial pain treatment at Pittsburgh.
Likewise (though you seem to understand this already as a practicing psychologist yourself), you would be well advised NEVER to allow a medical practitioner to enter the term "Atypical Facial Pain" into your medical records. Some of the less scrupulous practitioners of psychosomatic medicine would jump at the chance to treat you (and charge you) for this fictitious malady.
The Medical Advisory Board of the US TN Association has recently shared a letter with their members, in which they redefine AFP as "facial pain of obscure origins" and directly confront the mythology that neurological pain can have a psychological origin. Earlier this year, I invited the MAB to join me in advocating for pain patients with the APA, by pointing out that there is no validated or repeatable body of data in psychiatric practice that supports assignment of diagnostic labels such as "conversion disorder" or "somatiform pain disorder". Hopefully that view will be better represented in the DSM-V when it's published.
Feel free to come back to this or other threads, or to correspond. If you'd like, I can also try to put you in touch with a non-member of the site who is herself a psychologist and a chronic face pain patient.
Go for a second opinion with Neurosurgen Find one that has done lots of TN surgeries and knows a lot about TN it sounds like the Neurosurgen you went to does not want to treat you and maybe does not know that much about TN so instead of telling you that he wants to pass you off to someone else and if that is the case let him go find a doc who knows what he is doing
Hi Maryan. I also recently had a consult with a neurosurgeon in Tulsa, OK and I was very impressed with him. He was very nice and had a good deal of experience with TN. I was referred to him from my local neurologist (I live in Fayetteville, AR). If you want to add me as a friend, I could private message you his information if you are interested (surely it's not the same doctor). :)
Thank you all for your supportive and informative responses. Richard, my Dr. mentioned Janetta as the one who perfected the MVD, hence his reason for sending me to Pittsburg. I am blessed with a good, smart pain mgt Dr. who first referred me to a neurosurgeon she uses for pts with TN. She currently has only 3, but knows a lot about it. Anyway, my insurance didn"t cover the Dr. she wants me to see. I sent her a msg today informing her of my horrible consult and asked her to petition my ins to see the other Dr. Hopefully that will work. If the other Dr. could get them to send me to Pittsburg, surely they will approve another local surgeon, (or does that make too much sense...?).
I am just dumbfounded still about this Dr. I saw. Today I told my coworker about it who has MS. She knows him and immediately said, "he"s a j..k"! I don't know if he thought I was med seeking because I had taken a pain pill before my visit and told him, or, if I was just too good a pt for him to jerk around. I actually asked him what he would like for me to say since everything I said seemed to displease him.
Hi Gin! that would be great. I'm not sure how to friend you though. When I figure it out I will do it...or can you friend me? BTW, was his name something like Baird? That's who my PMgt doc wants me to see.
Maryan
GinRebekah said:
Hi Maryan. I also recently had a consult with a neurosurgeon in Tulsa, OK and I was very impressed with him. He was very nice and had a good deal of experience with TN. I was referred to him from my local neurologist (I live in Fayetteville, AR). If you want to add me as a friend, I could private message you his information if you are interested (surely it's not the same doctor). :)
To friend a member, you may click on their icon in any posting, go to their page and look for a line in the left side menu for sending them a friend request.
Hi Mayan! Oh he's referring you to Dr. Sekula! The king of MVD surgery from what I hear. He has probably done more than other neurosurgeon and has a very good reputation and success rate. Why your neuro would do that, WITH an MRI indicating a compression beats me! All I can think of is that he doesn't perform the surgery. At all. And instead of being gracious about it, he's dismissive.
I'm in a similar boat with my neurologist's egomania.
maybe it's because to HIS opinion he thinks you have a TN type 2 and not the classic TN which fits the surgery more.
i too just recently had 2 neurosurgeons advising me to do the MVD cause they saw something in the MRI.
BUT - they also admitted than since my symptoms and not classic (meaning : i have constant pain and not a "lighening pain" etc,) and since my "story" began just after a dental work - it lowers the rates that the MVD would help. BUT the DO advise it.
and i must say - i don't mind doing the MVD - the suffering is great already - i'm not sure if doing an MVD if the case isn't right -is smart. i've heard of people with type 2 TN that were shown a vessel pressuring on the MRI - and done the MVD and it didn't affect thier pain a bit .
it's such a dillema.
but it won't hurt for you to get a second opinio as you were told.
Hi Maryan ~ Yes, that was the neurosurgeon that I met with. I'm sorry to hear that he isn't in your insurance network. Hopefully your pain mgmt doctor's petition w/ the insurance company will be successful. :(
Ginny
Baci said:
Hi Gin! that would be great. I'm not sure how to friend you though. When I figure it out I will do it...or can you friend me? BTW, was his name something like Baird? That's who my PMgt doc wants me to see.
Maryan
GinRebekah said:
Hi Maryan. I also recently had a consult with a neurosurgeon in Tulsa, OK and I was very impressed with him. He was very nice and had a good deal of experience with TN. I was referred to him from my local neurologist (I live in Fayetteville, AR). If you want to add me as a friend, I could private message you his information if you are interested (surely it's not the same doctor). :)
Baci, I would like to say although the prognosis was accurate with my neurosurgeon...he had one heck of a bedside manner. He was shall we say "a step above everybody else???" On the mentality level or so he thinks he is. LOL
Dr. Sekula is in Erie PA ( used to be in Pittsburgh).. but I can tell you this if he IS telling you to go to a pittsburgh doc for surgery... I would NOT. I did. Made my life an absolute nightmare. I ended up having a REALLY botched MVD. Also, most hospitals in pittsburgh are teaching hospitals. A STUDENT did my MVD. No wonder why I am messed up. I had no idea one was going to as I requested that no student touch me; but low and behold- one did.
I really think bedside manner means alot, i dont care if the doctor is one of the best in the world, if they cant talk to you and explain things, well the heck with them.
I am having an mvd next week, yes I am scared, but I researched the neurosurgeon that is doing it and what I liked best is he spent over an hour and a half going over my mri etc with me and talked to me as if I was on his level of expertise. That sold me on the surgery, plus I dont do well on meds, have every side effect you can think of, so I want to at least try this so I can get back to work.
If the surgeon doesnt do 100's of these surgeries a year, or talk to you like a human or know TN inside and out, then I would move on. Sadly my neurosurgeon even admitted that most TN patients know more about this disorder than the average doctor. I truly think some doctors discount the disorder because they are just too damn lazy to find out or give a referral , and god forbid they would admit they dont have a clue.
I went through this earlier this year with horrible doctors. The first neurologist I was referred to actually said to me "You lady. You Fat. You have migraine. All fat lady with pain in head have migraine." (He was Korean.) I left his office in tears. I didn't get a word in edgewise and felt really helpless. I went to another doctor who jumped right to MVD after tegretol had bad side effects, another surgeon confirmed the diagnosis but disagreed with surgery at this point and now, I've finally seen a doctor that has given me hope. Oddly enough, this doctor is part of the same practice as the awful first guy. Keep your head up - your answer is out there!
that made me laugh, not at you, but myself...i went to the bahama's years ago, right after i was diagnosed with thyroid disease and gained about 75lbs, one of the women doing the hair braiding, yelled out to me....hey fat lady, get your hair done??....maybe this doctor has a calling to do hair on an island.
I once left an endocrinologist office in tears as well, the thryoid medicine wasnt working, and he told me to stop reading womens magazines and getting my syptoms from there, that I was fat because i was lazy. Years later I found a doctor that finally figured out that my blood test results were total crap and for some reason I always get an incorrect reading, he adjusted my meds and i dropped weight and felt 100% better. You are right, you have to keep looking until you find the gems out there instead of the turds, lol
wendy
KatieKitt said:
I went through this earlier this year with horrible doctors. The first neurologist I was referred to actually said to me "You lady. You Fat. You have migraine. All fat lady with pain in head have migraine." (He was Korean.) I left his office in tears. I didn't get a word in edgewise and felt really helpless. I went to another doctor who jumped right to MVD after tegretol had bad side effects, another surgeon confirmed the diagnosis but disagreed with surgery at this point and now, I've finally seen a doctor that has given me hope. Oddly enough, this doctor is part of the same practice as the awful first guy. Keep your head up - your answer is out there!
I think we all probably have had run-ins with bad neurologists and neurosurgeons. After reading up on a lot of things (as we do to be well informed) he asked me where I worked (am a nurse in the same hospital but a pediatric ward) and went "you have read too much". EXCUSE ME?! Any shred of respect I had for him went out the window right then. I haven't seen a neurosurgeon yet but will end up seeing one if the referral the hospital said they would make happens. I hope I get a nice one (the second neurologist was nice) ...
Here's a joke ... What's the difference between God and a surgeon? God doesn't think he's a surgeon. HA! (my favourite medical joke)