I'm new here, I was diagnosed Chiari almost two years ago (After a loooooong time trying to convince numerous doctors to take me seriously) What really sticks out in my memory was one doctor who, after examining me for around five maybe ten minutes, sat down across from me and my mother and very calmy said, to use his exact words "So... do you think all this could be psychological?"
I'm kind of embarassed about my response to this, I started crying so much that I coudn't actually speak, I thought I was losing my mind, to make matters worse after ten minutes of me sobbing and sniffling he asked "Have I said something to offend or upset you?" He then told my mother that the surgeon that had said I would require surgery he said that he would definitely not suggest surgery (He said this before he saw any scans or any reports from other doctors)
I was just wondering if anybody else has had any experience like this or am I just being overly sensitive?
I don’t think you are being overly sensitive at all. I think it is totally irresponsible of a physician to disregard what you are going through and blame it on a psychological issue only because they don’t have the right answers.
It has happened to my daughter several times and the mental damage they have caused is worse than the disease. I don’t sit back quietly when the psychological word comes up.
I hope you have been able to find a doctor that treats you the way you should be treated.
Thanks Sonya, I havent found a doctor that I'm happy with yet, they keep chopping and changing what they think is wrong and how to fix it. I hope your daughter finds the type of doctor she should have too! I know exactly what type of mental damage you're talking about, I would refuse point blank to tell the doctors of any new symptoms because I knew they didnt believe me about the symptoms I had already told them about!
Sonya Teixeira said:
I don't think you are being overly sensitive at all. I think it is totally irresponsible of a physician to disregard what you are going through and blame it on a psychological issue only because they don't have the right answers.
It has happened to my daughter several times and the mental damage they have caused is worse than the disease. I don't sit back quietly when the psychological word comes up.
I hope you have been able to find a doctor that treats you the way you should be treated.
That's both awful and reassuring in a terrible way.. I thought that it was something that probably happened over here because of lack of awareness and doctors doing research. Thank you so much, as awful as it is that it happens to almost every Chiari patient it is very reassuring that I'm not alone in the experience.
Beeba said:
I am going out on a limb - but I think you will have a harder time finding a patient who has not had this suggested at least once if not more times. You are the rule much more than the exception.
Oof, yes I had a doctor say to me, “there is nothing physically wrong with you. Is there ANY possibility your mind could be making this up?” Its a question that you cant actually say “no” to. Sick. For me, the most upsetting part of this journey is being told things like this. It can really throw you into a tailspin… It’s embarrassing, and after that wears off it feels mentally abusive. I’m not surprised that you still remember that, I can replay mine in my head like a tape recorder. The good news is there are doctors and surgeons who get it and are able to actually help.
I cannot tell you the times I’ve gone away from offices crying,and God forbid they see you cry.They will then say you are just depressed,my answer to that is I’m not depressed I am devastated!! My chiari has gone on for 27yrs.+ and I have to fight my bitterness toward those Dr.s.I try to understand their lack of knowledge about this illness,if only they would be more understanding toward hurting people.The
mental anguish is as bad as the sickness,in my opinion there’s not as many hypochondriacs as the medical community thinks,they just don’t know about the less known conditions like this one.In my case there has been at least 20 docs.and so many tests and even surgeries that has cost me suffering and money,those are the easy things.I’ve dealt with the pain of being alone and that is worse than all these things.God has been my source of strength and He will always be,all we can do to is try to help each other.I will pray for all of you and will speak out every chance I get,to get the word out about the chiari and related illnesses.Thanks to these supportive friends that I have found on this site,sure wish I had found them long ago.Dr.Rosner in N.C.has given me hope for a better future,he is wonderful in the chiari field,my decompression is a year out and symptoms are much better.The key to help is a specialist in the chiari field.
When I first became ill in 2001 I saw a very experienced ENT that told me I needed to see a psychiatrist, that nothing was wrong with me. My NS later wrote him a very serious letter.You are not alone .I will post an article Red Lawhern wrote about this topic. He is the Head Moderator on the Trigeminal Neuralgia Forum. It's very interesting.
Hi,
My son had symptoms at 13, took 3 years, to be diagnosed, with lots of frustrations, for parents, thinking of all his suffering, being in his head!
He had surgery and still continues to have a hard time! Especially with stress and anxiety! We all continue to never give up!! God Bless You!
DAG
I was told for years and years and years that it was all in my head. You’re not being overly sensitive, it’s difficult to deal with those that say it’s all in your head. I’ve had symptoms for over tens years and I just got diagnosed this summer. I had to be persistent. Make sure you see more than one neurologist and get scans! Don’t give up, hope is out there
This sounds so familiar. Our daughter Aoife was Diagnosed with Chiari after 7 months , which is not so bad, when I see how long some others have been waiting for a diagnosis. Unfortunetely, we also had an appointment with a neurologist shortly afterwards, who, without seeing her MRI scans and after examining her asked . ''Do you think this could be psychological?''
This floored us on the day and all Aoife could do for the rest of the consultation was cry.
Symptoms still horrific, 19 months after surgery. We are extremely lucky with our own family GP who has known Aoife since birth over 22 years ago , so knew that she never presented with these symptoms until the day she had suffered an accident which resulted in a whiplash type of injury which in turn triggered a whole chain of symptoms which was finally diagnosed as Chiari with a syrinx.
I agree with the poster who said that probably most of us have experienced this at one time or another. It doesn't make it any easier to deal with and I'm sorry you had that experience. After 30 years (and the age that comes with it) of this problem, I don't put up with it anymore. I don't have a problem telling off a doctor when they are condescending. What I find even more aggravating than being told It's all in my head is that I am exhibiting drug seeking behavior. That one really makes me angry. I hope you get some good help soon.
How does 12 years of… It’s all in my head sound? I think a lot of us experience that. I went to a doctor once and she literally mocked me in a way. “Well, I guess we probably can rule out now you have a brain tumor.” (Btw noone ever gave me any scans or anything ever-even this doctor) If I had one more doctor tell me that my neck and shoulders are where I must be carrying all my stress, I thought I would go off the deep end. That must have been an awful lot of stress especially with that radical headaches we experience… I can’t feel my hands because I have carpool tunnel… My ears are ringing because of my sinuses…The list of wrongs goes on and on and on. Still was years later before my diagnosis and surgery. I’m tired of pretending I feel good well I feel miserable and I am most certainly tired of trying to convince myself that is must be what everyone feels. I love you guys!!!
Wow, I'm blown away by the fact most people have experienced this, thank you all so much for all your responses and for your kind words, this is actually the first time I've spoken to other people with Chiari and people who have watched their loved one suffer with Chiari so it's all new to me! I really want to thank all of you so much because not only does it let me know I'm not alone it also lets me know that there's good doctors out there.. it's also really nice that I can come on here and immediately get support and advice off all of you so thank you all very much! :)
I am so sorry to hear that this happened to you. I am still waiting on my diagnosis but have had several doctors intimate or downright claim that my symptoms are psychological. The thing is, doctors are generally not qualified to say such a thing in the first place. At best, they get a single semester of mental health training and that is simply not enough to be making claims of any kind in that arena, much less taking away a person's hope or making them question what they know about their body.
I am a mental health counselor (that's six semesters) and I have worked with many people whose experiences like the one you describe have caused them great distress. Doctors throw around the words "psychological, psycho-somatic, in your head…" as if they have some kind of mind-meld capabilities and can read your subconscious. They can't!
I wish that someone would begin to see sloppy work like this as in issue of "do no harm" because the harm it causes is real. People with really physical symptoms do not get the care they need. No one deserves to be written off!
Doctors simply don't like to be wrong or not know something. They would rather you were wrong. The field tends to draw people who like to be right and any humility they have is often (not always) driven out of them by the process of becoming doctors in the first place.
I apologize if I sound angry - but, I am. This has happened to me for years and I just don't know what I would do without the people in my life who support and trust me. The distress of being ill makes perfect sense "my body isn't dependable, I am losing the activities that give me meaning, I feel sick and have pain all the time… Yeah, I'm feeling kind of down!"
It infuriates me when doctors don't listen to the people who inhabit the bodies they are supposed to be treating and tread into territory that they don't really have any business in. If I, as a mental health clinician, handed out a medical diagnosis, I'd lose my license. If I let my gastroenterologist do my brain surgery, everyone would think I was mad. It is the same thing. Just because you know one thing, that does not mean that you know another. It is astounding that a doctor will not give a diagnosis of a physical ailment based on symptoms and without concrete proof (a picture they can point at…) but they'll damage a patient by claiming its a mental health disorder with absolutely no evidence at all of it at all.
You have been in your body all your life and you know it is trying to tell you something. Keep listening to your body. Keep trusting yourself. You are the expert and the doctor is just being consulted for his opinion - you decide what it's worth.
Never let anyone minimize your situation. I had numerous drs try to put me on antidepressants. I discussed this with people very close to me who I knew would be honest if they thought I needed it and each time they agreed that I was not having psychological issues.
Keep going to different drs until you find one you like and trust. Remember you pay them… you are not at their mercy…
See a Chiari Specialist. I highly recommend Dr. Oro. He’s in Denver. I know it may be far… and pricey, but worth every dollar and second. They put me at ease, acknowledged my concerns, properly evaluated me… with tests and verbally… and I just had my first of 3 recommended surgeries.
You are not crazy… just am I was not crazy…
You just haven’t found a good doctor for you yet.
It took me 5 years of different doctors in 3 states before I decided enough was enough.
Even the best doctors can’t “cure” us but they sure can improve your quality of life.
Stay strong and be your best advocate. If you would like more info on Oro or costs or contact info please message me privately.
I wish the best for you and remember its in to be pushy with drs. Remember and remind them its your life on the line.
It's so refreshing to hear that from a mental health expert, I think it's made even more devestating when they say things like "It's psychological" because you start to question yourself about everything, I had actually stopped telling doctors about new symptoms because I figured there was little point consideering they didn't believe me before, I had the decompression surgery after I was fortunate enough to meet a surgeon who understood Chiari and explained what a sryinx was, the problem now is that the symptoms just haven't gone away, the back of my head where they removed a small part of the skull swells up and feels like a sponge, the weakness, the pain, the not being able to find the words are all worse than ever but now every doctor has made it very clear that the surgery was a success and that I'm AOK now... after reading all these comments I feel like I CAN actually go to them and say "No, something is still wrong and you need to listen to me" and I've never felt thaht before! I can't put into words how much each and every one of you has made me feel not so alone!
AsaN said:
I am so sorry to hear that this happened to you. I am still waiting on my diagnosis but have had several doctors intimate or downright claim that my symptoms are psychological. The thing is, doctors are generally not qualified to say such a thing in the first place. At best, they get a single semester of mental health training and that is simply not enough to be making claims of any kind in that arena, much less taking away a person's hope or making them question what they know about their body.
I am a mental health counselor (that's six semesters) and I have worked with many people whose experiences like the one you describe have caused them great distress. Doctors throw around the words "psychological, psycho-somatic, in your head…" as if they have some kind of mind-meld capabilities and can read your subconscious. They can't!
I wish that someone would begin to see sloppy work like this as in issue of "do no harm" because the harm it causes is real. People with really physical symptoms do not get the care they need. No one deserves to be written off!
Doctors simply don't like to be wrong or not know something. They would rather you were wrong. The field tends to draw people who like to be right and any humility they have is often (not always) driven out of them by the process of becoming doctors in the first place.
I apologize if I sound angry - but, I am. This has happened to me for years and I just don't know what I would do without the people in my life who support and trust me. The distress of being ill makes perfect sense "my body isn't dependable, I am losing the activities that give me meaning, I feel sick and have pain all the time… Yeah, I'm feeling kind of down!"
It infuriates me when doctors don't listen to the people who inhabit the bodies they are supposed to be treating and tread into territory that they don't really have any business in. If I, as a mental health clinician, handed out a medical diagnosis, I'd lose my license. If I let my gastroenterologist do my brain surgery, everyone would think I was mad. It is the same thing. Just because you know one thing, that does not mean that you know another. It is astounding that a doctor will not give a diagnosis of a physical ailment based on symptoms and without concrete proof (a picture they can point at…) but they'll damage a patient by claiming its a mental health disorder with absolutely no evidence at all of it at all.
You have been in your body all your life and you know it is trying to tell you something. Keep listening to your body. Keep trusting yourself. You are the expert and the doctor is just being consulted for his opinion - you decide what it's worth.
I would love to go over to the states and look for treatment, I live in Ireland so there's literally a handful of doctors (at most) Who have ever even heard of a chiari, one of them actually read my notes and asked me how to pronounce it, I was left on morphine tablets for 17 months just so I would stop going to the doctor complaining of pain, thankfully I'm off them now and I never intend to go back on them! I was told it was post traumatic stress etc. and I lost all confidence in my own mind and in my ability to speak up when I didn't understand/agree with what the doctors were saying. I really hope there's more research done over here because if you need surgery you really have little to no chance to choose who preforms it! pebbles said:
Never let anyone minimize your situation. I had numerous drs try to put me on antidepressants. I discussed this with people very close to me who I knew would be honest if they thought I needed it and each time they agreed that I was not having psychological issues. Keep going to different drs until you find one you like and trust. Remember you pay them... you are not at their mercy... See a Chiari Specialist. I highly recommend Dr. Oro. He's in Denver. I know it may be far... and pricey, but worth every dollar and second. They put me at ease, acknowledged my concerns, properly evaluated me.. with tests and verbally... and I just had my first of 3 recommended surgeries. You are not crazy... just am I was not crazy... You just haven't found a good doctor for you yet. It took me 5 years of different doctors in 3 states before I decided enough was enough. Even the best doctors can't "cure" us but they sure can improve your quality of life. Stay strong and be your best advocate. If you would like more info on Oro or costs or contact info please message me privately. I wish the best for you and remember its in to be pushy with drs. Remember and remind them its your life on the line.
i am so sorry what was said to you. i am 57 and can remember having systoms since I was six and they didn't find my chiari till last year so I heard it all for 50 years from Doctors and family. i always knew something was wrong but i was told it was all in my head I needed attention I was depressed and on and on. I am still having so many problems since my surgery and they have tried to say i am fine. i know better now like I tell them they can think what they want but I know things are not right and they will not get me to think it is all in my head I will not be put back in that box!
You have all made me cry for all the rotten treatment and experiences we have all had to endure. I pray for the day CM is no longer a mystery to medical providers and all people with legitimate medical symptoms gets the respect we all deserve.
