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Curious question about your medical insurance
It seems that I have read so many stories (on this and other websites) in which people have sooooo many symptoms and go see different doctors and have all kinds of tests done and get told they are depressed or have some kind of mental illness or told they have a chiari but that it is a benign finding etc... etc... sound familiar right?
Well my story was VERY different. I went to an ARPN in a HA clinic she ordered an MRI, called me the next day and set me up w/ a NS who told me all about chiari's and what they are and what options I had etc... I had all (basically) my questions answered and that was that. (Cut to the present, 4 yrs later, and I'm finally deciding on surgery and with what NS cause my sxs are getting unbearable)
So my question is. I don't need a referral to see a specialist w/ my insurance. I never even talked to my PCP about my HAs or anything I called the neuro department and told them I wanted to see someone about constant HAs and the rest is history. I also went and found my own NS to see and found someone for a 2nd opinion. I did need a referral for the NS I saw that time but it wasn't for insurance purposes it was for that doctors office, but I just called my PCP (who I have never seen for this) and within a week the NS was calling to schedule my appt!
Wait, I still haven't asked a question have I? OK so I'm just wondering why people seem to have so much trouble getting diagnosed. Do PCP's not want to give out referrals? Do THAT MANY doctors REALLY not know what a chiari is? I mean I learned about them in MY school (diagnostic ultrasound)! You would think if they have time to teach us about it (and to my knowledge there is no test w/ U/S they do for chiari) they would teach it in med school!?! Did I really just get that lucky that the first person I was who wasn't even an MD, knew about it? Also, I live in a major metropolitan area w/ lots of major medical centers in the area. Do some of you see doctors in a more rural setting? I'm just totally curious about the state of medicine in this country (and Canada too carolyn ;) ). It sure doesn't seem like things are going too well out there!
Well my story was VERY different. I went to an ARPN in a HA clinic she ordered an MRI, called me the next day and set me up w/ a NS who told me all about chiari's and what they are and what options I had etc... I had all (basically) my questions answered and that was that. (Cut to the present, 4 yrs later, and I'm finally deciding on surgery and with what NS cause my sxs are getting unbearable)
So my question is. I don't need a referral to see a specialist w/ my insurance. I never even talked to my PCP about my HAs or anything I called the neuro department and told them I wanted to see someone about constant HAs and the rest is history. I also went and found my own NS to see and found someone for a 2nd opinion. I did need a referral for the NS I saw that time but it wasn't for insurance purposes it was for that doctors office, but I just called my PCP (who I have never seen for this) and within a week the NS was calling to schedule my appt!
Wait, I still haven't asked a question have I? OK so I'm just wondering why people seem to have so much trouble getting diagnosed. Do PCP's not want to give out referrals? Do THAT MANY doctors REALLY not know what a chiari is? I mean I learned about them in MY school (diagnostic ultrasound)! You would think if they have time to teach us about it (and to my knowledge there is no test w/ U/S they do for chiari) they would teach it in med school!?! Did I really just get that lucky that the first person I was who wasn't even an MD, knew about it? Also, I live in a major metropolitan area w/ lots of major medical centers in the area. Do some of you see doctors in a more rural setting? I'm just totally curious about the state of medicine in this country (and Canada too carolyn ;) ). It sure doesn't seem like things are going too well out there!
I think you just got very lucky!!! I had an NL, NS, Ortho, & OS all tell me CM is just a "thing" and are "asymptomatic".
COMMUNITY LEADER
I think the main reason for chiari being overlooked besides the fact that yrs ago it was a very brief chapter glazed over too quickly......
The main thing is...the symptoms cycle...so u can have HA's that come and go...then u have numbness....and then nothing for months and then HA's again.....and it may take time b4 one even considers going to the drs for this.....most symptoms are felt to be the result of something else and not as a collective......and in the meantime those of us that do go to the dr get the ...u have anxiety, stress...ect....and then we stop going to the dr for a while until it gets unbearable....u have medical schooling and knew/know more than most would...we wouldn't have had ne idea to go to a NS...so we fall into a vicious cycle trying to figure it all out......
Knowing this can not be as rare as most of the drs try to make us think......or that it can't possibly be the issue....just shows, that a good majority of drs r not trained as well as they could be.
Plus, u also have to understand, when I started going to drs for this, they did not have MRI's available for the average person..... technology has progressed and been invaluable in getting the dx sooner...but, like I said many of us have been mis dx'd with other issues prior, so the drs do not continue to look, plus many insurance comps will deny testing if a dx was made.....
I am so happy to hear that the training u had included this info and that can only mean that more and more drs will also get the info so noone else has to go thru the frustrating ordeal that so many of us have had to endure for a dx.
"selma"
The main thing is...the symptoms cycle...so u can have HA's that come and go...then u have numbness....and then nothing for months and then HA's again.....and it may take time b4 one even considers going to the drs for this.....most symptoms are felt to be the result of something else and not as a collective......and in the meantime those of us that do go to the dr get the ...u have anxiety, stress...ect....and then we stop going to the dr for a while until it gets unbearable....u have medical schooling and knew/know more than most would...we wouldn't have had ne idea to go to a NS...so we fall into a vicious cycle trying to figure it all out......
Knowing this can not be as rare as most of the drs try to make us think......or that it can't possibly be the issue....just shows, that a good majority of drs r not trained as well as they could be.
Plus, u also have to understand, when I started going to drs for this, they did not have MRI's available for the average person..... technology has progressed and been invaluable in getting the dx sooner...but, like I said many of us have been mis dx'd with other issues prior, so the drs do not continue to look, plus many insurance comps will deny testing if a dx was made.....
I am so happy to hear that the training u had included this info and that can only mean that more and more drs will also get the info so noone else has to go thru the frustrating ordeal that so many of us have had to endure for a dx.
"selma"
Yes, I'm happy you got a quick diagnosis too. I wouldn't wish what I and others have been through on anyone or any creature! I currently don't even have a PCP because I fired mine after reading his notes in my records. The NS's in my area require a referral, so you are at the mercy of your PCP. I don't even feel I can find a new PCP until I have the NS report to PROVE CM is causing my symptoms. Once these lunk head DRs put Stress disorders and psychological disorders in your medical records, no other DRs want to accept you as a new patient.
Yes, luck is the word...but I am so glad that you did get lucky..someone deserves to!!
As for Canada...don't get me even started about the health care system. MY NL sent an urgent request for an MRI b/c they thought I had MS...I couldn't walk properly and was having a long list of problems...and STILL my MRI was scheduled for 9 months down the road. It was insane..and I tried to fight but that was the earliest they could get me in. So I had to pay out of pocket to the tune of $1750 which was not covered by anyone for a private scan. Then, I am told it is normal by the radiologist and my NL. So I go on looking for answers and getting worse for another 6 months. By pure luck only, my Dh meets this NS in his line of work and brings it up to him...then we see him at a local fair and he sees how I am walking. My Dh was doing work for him at the time and so he offered if I wasn't getting anywhere that he would see me in his clinic. So I get the referral and do just that, I bring my own MRI pics (which are of lower quality) and he sees the Chiair right away. Then to confirm, he checks to see if I have a gag reflex...and I have NONE!! My NS couldn't believe that no one had checked that..even my NL!!! So he sends me home and consults with another NS who had had a patient like me and they are both in absolute agreement that this is my problem. I get a call back to come in 3 days later to talk about surgery....at the same time my NL is sending my dr a diagnosis of stress disorder!!! My NS even spoke to my NL about it and he still wouldn't agree that Chiari is my problem, he still maintains that it is asymptomatic!! Why the radiologist didn't catch it, I have no idea either. But I think that it comes down to training and ignorance!! Truthfully, I googled my NS when surgery came up and I know that he worked in the States for awhile so I think that is why he knew so much about it. Plus he did his residency back in Ontario in a very well know neurological institure. But your run of the mill NL out here in BC...you might as well forget any help from them!!
As for awareness, I can't find any fundraisers, walks or any support groups for Canada and trust me I've tried. I know that someone has to start one but I am still so knee deep in my own issues that I just don't feel that I have the strength yet. But when I do...watch out!! Sorry I seemed to vent a little...but it makes me so mad!
Carolyn
As for Canada...don't get me even started about the health care system. MY NL sent an urgent request for an MRI b/c they thought I had MS...I couldn't walk properly and was having a long list of problems...and STILL my MRI was scheduled for 9 months down the road. It was insane..and I tried to fight but that was the earliest they could get me in. So I had to pay out of pocket to the tune of $1750 which was not covered by anyone for a private scan. Then, I am told it is normal by the radiologist and my NL. So I go on looking for answers and getting worse for another 6 months. By pure luck only, my Dh meets this NS in his line of work and brings it up to him...then we see him at a local fair and he sees how I am walking. My Dh was doing work for him at the time and so he offered if I wasn't getting anywhere that he would see me in his clinic. So I get the referral and do just that, I bring my own MRI pics (which are of lower quality) and he sees the Chiair right away. Then to confirm, he checks to see if I have a gag reflex...and I have NONE!! My NS couldn't believe that no one had checked that..even my NL!!! So he sends me home and consults with another NS who had had a patient like me and they are both in absolute agreement that this is my problem. I get a call back to come in 3 days later to talk about surgery....at the same time my NL is sending my dr a diagnosis of stress disorder!!! My NS even spoke to my NL about it and he still wouldn't agree that Chiari is my problem, he still maintains that it is asymptomatic!! Why the radiologist didn't catch it, I have no idea either. But I think that it comes down to training and ignorance!! Truthfully, I googled my NS when surgery came up and I know that he worked in the States for awhile so I think that is why he knew so much about it. Plus he did his residency back in Ontario in a very well know neurological institure. But your run of the mill NL out here in BC...you might as well forget any help from them!!
As for awareness, I can't find any fundraisers, walks or any support groups for Canada and trust me I've tried. I know that someone has to start one but I am still so knee deep in my own issues that I just don't feel that I have the strength yet. But when I do...watch out!! Sorry I seemed to vent a little...but it makes me so mad!
Carolyn
This kind of thing is extremely upsetting to me! CM isn't THAT rare. (1 out of every approx. 1,000 births according to the CSFinfo.org website. plus not to mention that I have a friend w/ it and another friend of mine's b-friend has had the surgery for it!) I just don't understand why doctors don't know about it! I mean I understand why PCP's would be totally familiar with it, same with ER doctors, but they should still at least know what it is, and know how to test for it! Being in a diagnostic imaging field I know about and how to look for things that are rare. The lab I work in is quite big. We do over 10,000 echocardiograms every year and there are thing that I have seen maybe two or three times in the 6 years I've been there, but I can guarantee that they wouldn't be missed by any of us, or the MD that read the studies. I'm not trying to say that I work in a place that is just so great, and that we're better than another lab, but just the opposite. I mean that is why we go to school for this. that is why we have internships.
I have mixed feelings about it. While it's quite obvious I get so upset about this kind of thing, and I feel doctors should be held more accountable for their continuing education, I also just want to do whatever I can to educate the general population as well as the medical field. But what?? Its not like I have money to just donate. And if I did, to who? How can we help?? I really feel like this is an injustice and there has to be something we can do to help those people out there who are suffering and have no answers from their doctors.
I'm sorry for this rant. I just feel strongly about education. Any thoughts?
I have mixed feelings about it. While it's quite obvious I get so upset about this kind of thing, and I feel doctors should be held more accountable for their continuing education, I also just want to do whatever I can to educate the general population as well as the medical field. But what?? Its not like I have money to just donate. And if I did, to who? How can we help?? I really feel like this is an injustice and there has to be something we can do to help those people out there who are suffering and have no answers from their doctors.
I'm sorry for this rant. I just feel strongly about education. Any thoughts?
I think you got extremely lucky! My daughter was treated first in urgent care - they x-rayed for sinus infection, treated for HA with iv fluids, anti-nausea, and anti-inflamatory - ended with injection of demeral. We were in the ER two days later - they looked for tumor via CT scan, meningitis via lumbar puncture(took 3 tries) ended with IV narcotics, an RX for narcotics and anti-nausea meds and follow up rcmd with PCP. Back in ER two days later - FINALLY an MRI - and the ACM1 is noted as possible need for follow up with neurosurgeon if symptoms persist. Both PCP's feel it is incidental, but send MRI to pediatric neurosurgeon - who requests an appointment with us - and here we are today.....treating for migraine, and monitoring ACM1 with a full spinal axis study to be done w/in three months, PT starting as soon as approved by insurance, and an opthamology exam to be scheduled.
Count those blessing Stephanie!!!! You must have one heck of an HMO.
Count those blessing Stephanie!!!! You must have one heck of an HMO.
You got Extremely lucky!!! I do live in a rural area but went to bigger cities to see NL and NS (Memphis, TN - Jackson, MS - Birmingham, AL) I was even told by one NL "well, i see it but i dont think that is your problem so i'm gonna treat you for miagraines" I'm lucky enough that my pcp is willing to learn and listens to me! I brought him stuff from the internet and he basically asked me who i wanted to go about the chiari, and has helped me every step of the way! Anyway, yes you are a lucky one, count your blessings my dear! Shannon
I'm in Tampa, so not rural... My PHP graduated med school 20 years ago. He said that he doesn't remember ever hearing about ACM. My Neurologist said they covered it for about an hour in his schooling... actually, my eye doc and my PT therapist were the first two medical people I saw that had any knowledge of it at all!
Because it isn't common (or so we know currently), and so many doctors have been out of school for so long, it's not something that they are familiar with.
It's wonderful to hear that you found such good care early on. And I love hearing that D.U. courses include ACM!
Ambyr
Because it isn't common (or so we know currently), and so many doctors have been out of school for so long, it's not something that they are familiar with.
It's wonderful to hear that you found such good care early on. And I love hearing that D.U. courses include ACM!
Ambyr
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