Hi all, hope everyone is having a pain free day. I read all posts that everyone puts up. I find them sometimes uplifting,some times scary, and sometimes very depressing. But I have seen a common thread that weaves through many of these stories. I have mentioned this in some of my past responses but after just reading another one that angered me I thought maybe it would be worth its own discussion.
It is the radiologists!!! Does anyone understand the impact that what that dr puts on the interpretation of your scan sets the ball rolling as to how you will be treated from this point forward by the 98% of drs who don't even know anything about chiari let alone contradict what another dr has put down as HIS/ HER expert opinion?
A radiologist job is to interpret what they see on your scan.
IMHO - a good interpretation with out ever seeing a patient would read a 7 mm herniation of brain stem consistent with chiari malformation1. PERIOD!!!! But no what they say are things like incidental finding, or 15 mm herniation of no real significance.. How the F do they no what is significant or not lleave that up to the neurosurgeon to decide what is significant they are the ones speaking to the patient. And with this condition 95% of the diagnosis made by an interview of the patient.. And sure if you go to a specialist I am sure they read those scans themselves but what about all the non neurosurgeons that we all get sent to and trust me they can't read those scans and they go by that report. You have already been labelelled as has your little made up problem that you are obsessing over because you really just have nothing better to do. Even my first surgeon kept saying it is nothing it was just an incidental finding no big deal. The only reason we did surgery is because you kept coming back to the hospital. It cost me 100$ every time I walked through that door. Really I have way more fun things to spend my money on. And when I was still sick and complaining after surgery that something still didn't feel right he repeated very loudly to me IT WAS JUST AN INCIDENTAL FINDING!!! What are they talking about? I didn't go in for a bad pinky toe and by mistake had an MRI of my brain - that would be incidental. I was having every symptom in the book and after 3 times to the hospital I insisted on the MRI because I just knew there was more to it. Luckily for me it was a perfect scan with just this little incidental finding of chiari with no medical significance!!!!!! I hope you feel my sarcasm. The approach I am now taking is if any radiologist puts any type of impression other than a physical one I want to speak with them I am having that removed from my report. And yes you can do that. These people have not spoken to you to know your symptoms to know if something is significant or not. As a matter of fact they don't even know why you are there or how many times you have been there. So this is again - especially in the days of electronic medical records that will follow you for the rest of your life - have those stupid u informed opinions removed and or changed to even may be of some significance because let's face it does the radiologist who sit in his little dark room having very little human interaction really know anything about you other than what he sees on a picture? This is even more important when you go to drs with no relation to chiari - say a cardiologist for a racing heart. They may treat you with a medicine that helps a "normal" person but for someone with chiari it could make symptoms worse. You (you know the idiot in the room without a hundred letters and degrees behind your name) can show them that report and they will point out that wonderful impression given by their esteemed colleague see here it doesnt have any real significance. If that weren't there they would just have to acknowledge that yes you do have chiari but we don't know what effects it is causing. So the advice I am moving forward with and I hope you all consider it as well. Let them interpret the picture but if you see any type of an opinion that disregards its significance you speak to the radiologist and have that removed from your record because just like posting a naked picture on the Internet it will follow you for life and it will impact how you are treated by some in the know.
Wow! You are all fired up..lol. You are very right about this!!! I was lucky enough to even have a radiologist mention the finding. If it wouldn't have been mentioned, I would have gone without a diagnosis and surgery. My NL didn't think it was a problem, but as soon as the NS saw it, she realized it was a BIG problem. I was told that a lot of radiologists don't even know what Chiari is and don't seem to find it an issue. Who gives them the right to say if it is or is not an issue. Well done Beeba!!! Well done!
LOVED this!!! I can SOOOOOOOOOOO relate!!!!
thank you for bringing this subject up - i think we can all agree radiologists need more training on chiari - i had a car accident in june of 88, had a MRI done shortly after, of course every is normal - between then and 2001 i had 2 more MRI's done, everything is normal - luckily my physiatrist read the latest and he was excited beause he studied it breifly in school but in sevearl years of pratice i was the first he had seen, i will always be grateful to him, even tho i can't remember his name, lol
Beeba,
I was in the ER last year because I tripped & fell into a stream & hit a culvert (and drown my phone : ). The Radiologist came into my room after the CAT Scan and actually asked me ........."What my head was supposed to look like".....I am still shocked on this one. Granted I was in Abingdon, Va. where I grew up and they have a population of about 5000. I looked at him like he had ten heads & then told him I had no idea. I could explain to him what I had done & where I had titanium screens, but I can't read Cat Scans. I didn't know what was normal .... Here they actually have Neurological Radiologists read my studies and My NS insists on having the actual films not discs. He prefers to read them himself he has been a NS long before a lot of dr's were born.
TZ.
You are so right!!! I hope you feel better after getting that out! :)
It took me almost 7yrs, countless Dr.'s, Neurologist's, and god knows how much time and money (co-pays etc.) to finally find a Dr. and facility that has taken me seriously and is recognizing my condition. You feel the same as I always have: "Why they heck would I put MYSELF and MY HUSBAND AND KIDS through all this were my symptoms not real and quality of life not being effected? I have nothing better to do than be insulted & treated like a hypochondriac?"
The Dr yesterday at the Mayfield clinic told me that the size of the herniation really means nothing it comes down to the CSF fluid flowing correctly, as you all know, there are just too many uneducated physcians in this field and add to that the insurance B.S and jumping through hoops to be able to get to the right person.....Dang now I'm getting fired up.
Love having you all here to vent!!!
I keep running into these doctors who say Chiari isn't causing my symptoms. :( Due to insurance issues I can't find a specialist to see me. I really want to try Mayfield Clinic since it is so close but they will not accept my insurance. I'm considering paying out of pocket for a consultation but I don't even know what good it would do. :(
You can pay out of pocket and see the Dr. at Mayfield. Then get him to send in a request for Prior Authorization to your insurance co. on the grounds that he is a CM Specialist. I worked in Ins for years before I became ill. I had a HMO and wasn't supposed to go out of the state. They paid the total cost of all my procedures & it had nothing to do with me working for BC & BS. It was because CM is a Rare Disorder and my Dr. was a CM Specialist in Pittsburgh (I Live in Va. ). I think I did pay one copay.
Anglyn said:
I keep running into these doctors who say Chiari isn't causing my symptoms. :( Due to insurance issues I can't find a specialist to see me. I really want to try Mayfield Clinic since it is so close but they will not accept my insurance. I'm considering paying out of pocket for a consultation but I don't even know what good it would do. :(
That is so insulting when a physcian says that to you....what in the name of God would be causing the symptoms? It's like "Do you want me to connect the dots for you?". I understand 100%. It's so deflating and discouranging, a thousand times I've wanted to say "F" it but then you have a really bad day, maybe a couple of days or a week and somehow you find the strength to start all over again with a new physcian.
NO ONE should be denied care!!! You are in my prayers.
Anglyn said:
I keep running into these doctors who say Chiari isn't causing my symptoms. :( Due to insurance issues I can't find a specialist to see me. I really want to try Mayfield Clinic since it is so close but they will not accept my insurance. I'm considering paying out of pocket for a consultation but I don't even know what good it would do. :(
I know! I even tried to argue that I came in with a list of symptoms, based on those you ordered an MRI. Is it really a coincidence that the MRI shows a condition that I had no way to know about that just happens to encompass all those symptoms??? Yet this isn't what is causing the problems? Really???
Why is it ok to do this to Chiari patients?? Think if doctors did this with all illnesses how bad off the world would be! I'm sure if someone came in with all the symptoms of cancer and had a scan which showed a tumor that they would remove the tumor. Not tell the patient that yes they have cancer but it's not what is causing their cancer symptoms.
Heather-Ohio said:
That is so insulting when a physcian says that to you....what in the name of God would be causing the symptoms? It's like "Do you want me to connect the dots for you?". I understand 100%. It's so deflating and discouranging, a thousand times I've wanted to say "F" it but then you have a really bad day, maybe a couple of days or a week and somehow you find the strength to start all over again with a new physcian.
NO ONE should be denied care!!! You are in my prayers.
Anglyn said:I keep running into these doctors who say Chiari isn't causing my symptoms. :( Due to insurance issues I can't find a specialist to see me. I really want to try Mayfield Clinic since it is so close but they will not accept my insurance. I'm considering paying out of pocket for a consultation but I don't even know what good it would do. :(