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Good Dr vs Stupid Quacks

What is the difference?

Prior to hearing the term Chiari Malformation, we go to the "doctor" and we place our faith in this person we have trusted our life with. They run experiment after experiment and test after test so that they can throw a pill at us and say there let us see if that will help. We accept it as it is believed that if this "Doctor" has attended medical school obviously they must understand these things better than we do. And they 'must' have our overall health welfare as their interest. Well, by the time we get that dx that makes so content while at a same time a bit uncomfortable we have learned why some "Doctors" are termed as Quacks. We develop a degree of distrust and learn to be more affirmative about our own medical care. This is a good thing, but it does make it more difficult to find new doctors when the need arises because of the distrust that has been earned by the medical community.

Yesterday was my first visit with a new PCP. I had told his staff that I wished to meet with this "Doctor" in order for me to determine if a change would be made. Sounds good as this doctor is about 15 mins drive instead of the almost 2 hours to the current PCP. The talk around the local hospital is that he is in favor of alternative meds, so for me that is a huge plus, his nurse on the phone was had not heard the term Chiari before but was very nice and asked if she could speak with the Doctor and call me back. She called back within about 2 hours and said that yes the "Doctor" was aware of the condition but she was not. She said the "Doctor" would want to know exactly what related conditions I suffered from and what meds I was taking for it and set-up an appointment the next day {for yesterday}. She assured me that yes they understood this was just a meeting I wanted no medical care at this time. So I'm thinking 'cool' this just may work out. 'WRONG' this guy has no idea what Chiari is and had no intention of trying to find out in order to serve a new patient. His mouth says yes but he just didn't seem to have an understanding so I asked a few more pointed tougher questions to see just what he did or didn't understand about Chiari. When I wasn't satisfied at all after a few mins things got more direct and I asked him "Can you explain to me exactly what you do know about Chiari?" His response " Well, I'm aware of the condition and it's related conditions." to which I responded "You have to understand, I've been through the ringer already. I'm looking for a PCP who will understand what's going on 'if' or when something happens and I need help. Your going to have to give a precise answer not a general answer if you want me as a patient." His response "Well Mr ***** you really don't have a lot of choice with me being a few mins away vs a 2 hour drive. And I have informed you to the best of my ability that we are aware of this condition and it's related problems." Now I'm irritated, not mad yet but irritated as he is skirting the issue. So I directly told him "Listen, no disrespect intended but I do have a choice that is why you are not my Doctor, we're just talking to discuss if 'I' want to make the choice to make a change. And frankly YOU have NOT answered my question; I asked you what exactly you understand about Chiari. You have only spoken in generalizations so if you want me as a patient I need that answer, if not that's fine I'll go now." This QuackerJack responded "Well Chiari is a sometimes genetic condition that is rarely anything more than an incidental finding. Although in very rare cases it can become symptomatic. When it becomes symptomatic it often causes severe pain, axiety and in most cases episodes of psychosis. Because of the psychosis many patients end up imagining symptoms that really are not present. And I'm not saying this is you but most Chiari patients are in need of physiatric care due to their delusional mental state."

I was floored, very angry and quite certian he would not put a bandaid on me if I was bleeding to death!!! But I stayed calm and responded "I do wish that folks who practice on others for a living would just be honest. Personally I respect an 'I really don't know, lets find the answer' much more than the god like folks that think they know everything." he started to speak but I didn't allow him too and asked that he let me finish since he was getting paid for this anyway "And just in case some other fool comes to you for medical care just know this 'You' do NOT understand Chiari at all. You do not have a clue what Chiari is or what the care of a Chiari Patient involves." I apploligized for wasting his time and got up to leave. He spoke up and told me that really he would not be caring for my Chiari anyway that would be up to a NS for which he could find me a good one. Told him I already have one and that frankly he couldn't understand how Chiari effects the patient which obviously he doesn't then how could he treat the patient at all because Chiari is or can be rather all encompassing. His face was quite red, mad I think, but this time I did not care! Normally I'll do anything to keep from leaving someone upset but ...... grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr  What a jerk!!!

Wolf out gotta go have a psychotic episode now!
Best Answer
620923 tn?1452915648
COMMUNITY LEADER
OMG WOLF!!!...I would have" clang clang Belview" over the head with my cane had it been me...I would have lost it.(reference from Miracle on 42nd Street)

I was hopping mad reading the account...it is all to familiar and sad......I happen to meet a few student PA's and they got some instruction on what chiari was...they at least heard of it, but didn't elaborate.

My friend's DD is graduating nursing school and never heard of it, but, wants to research it with some NS drs she knows....so we have to hope and pray the younger generation of Drs and Nurses will get beyond the antiquated info being dished out in med schools.


What u did....the interview....is exactly how we have to find our drs......

I am sure it may take a little bit of time to cool down after that encounter.

Well done : )

"selma:"
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1179332 tn?1297478990
HI Wolf,

I am really sorry to hear that you had such an awful experience and once again had to face a wall of ingnorance...it's so frustrating!!

I completely emphathize with you..I know the feeling of getting your hopes up that a new dr will help you and understand what you are going through..only to be let down again when you realize they are ANOTHER uneducated dr when it comes to Chiari!!

I can't believe the psychosis part!! What a total idiot!

Keep looking..there are good drs out there..but they are a rare find!!

Take care and keep your chin up :)

Carolyn

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Avatar universal
Wolf, you can say all you want anytime, as it is all true. We spent 5 years trying to get our older son dx'd with tethered spinal cord. So we have fought the fight and continue to fight the fight. Sometimes it is so exhausting and as a mom I feel like now with 2 kids with health issues, I am running out of steam in the fight department. But when I feel weak, my wonderful hubby seems fully charged and ready to take over.
IDK I just wish that there was more docs that understood, and knew more about CHiari.
When in Chicago, The doc asked us if we wanted our son to be part of a study done on the memory issues that Chiari pt's have, well we jumped at the chance, as I think it is a step in the right direction, but it also proves that they don't know alot about it, but that some are willing to learn. So maybe there is hope in the future.
And, again Wolf always happy to read your posts. Barb :)
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1274661 tn?1301868321
It really is a shame how many awful doctors are out there and so sad that people like us are out there trying to find someone to help and understand us. When I was younger I seen many doctors for the awful headaches I was having and eneded up going to a pain clinic. The doctor there who did no testing at all told me I needed to have injections in my head and that I could die from these headaches, Thankfully I had enough sense to realize that something didn't seems right and as much pain as I was in I didn't want injections in my head. Years later I just happened to be flipping around on the tv and started watching a crime show about a pain doctor who had been injecting his patients with highly addictive drugs, charging them a fortune for them and getting them addicted so they would have to come back. Turns out it was him!!! He was sent to prison for killing several of his patients with overdose. Scary world out there...
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620923 tn?1452915648
COMMUNITY LEADER
Wolf u always make me laugh...not at what u say, but how u say it...lol....thanks : D
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Avatar universal
Thanks Barb

But you know.... Life teaches us all lessons. Mine lesson with Doctors was learned early in life. I remind them, "your just another human being and I know you'll make mistakes" some appreciate it some seem to take offense. Somewhere in the mix I like to 'kindly' which I personally think is key, kindly, remind them that I'm their customer.

All too often we go see a doctor and because he is educated in some school 'he has to know better than we do' what we feel like. Well as a mom let me ask you a question. Let's suppose your husband went through the classes with you prior to the birth of your child. Maybe he even took every available class to help him understand how you felt while giving birth. Would all of his schooling allow him to really 'know' how you felt emotionally and physically during that process? Of course not because he didn't feel it, he didn't endure it. And that is where the idea of a fix all doctor is flawed. Even more so with some of these weird conditions like chiari that imperfection has led us to endure.

IMHO- We have to be proactive in our care, no doubt about it. IMO though that involves not only doing our own research. Rather it also must include being willing to fire any doctor with just cause. If they are not willing to communicate but rather want to preach than they belong behind a pulpit not in a doctors office. A doctor that wants to act superior to his patient is akin to a minister who doesn't have the time to listen to those he is attempting to teach. How can he teach without knowing what ails that person? He can't. A doctor who distrusts or one who won't listen to his patient.... nah... there is plenty of blacktop out there we can move on down it and find another. It is also my firm opinion that a doctor who discounts the use of alternative treatments such as educated use of herbs, minerals, and vits... well he is just a pill pusher not my doctor.

Ok, sorry, I'll shut up now. Perhaps one day soon I'll add to my journal entries and tell some of the stories that have made me feel so strongly about the choice of doctors. To me it's just like choosing your preference between WalMart, Meijers or Target. Or Lowe's vs. Home Depot or Menards... you must be a good customer or you are not going to get good medical care.

Shutting up now, sorry if you've read this far....
Wolf
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Avatar universal
WOW!
Just can't believe that these docs still don't have a clue. The family PA that missed our DS dx said " well you know that most of these cases aren't even discovered until death and an autopsy is done." Every time she opens her mouth I want to put my foot in it!!!!!
She dismisses all of DS's symptoms, even before the Chiari dx, except now we know what is causing it. I want to tell her, no need to be defensive dear just because you missed his dx on his MRI, lets just work together and make sure he is getting the proper care.  We have since switched to the DR. in the same practice and she seems a bit more receptive to what we have to say. Although Dr. Frim dismissed some of DS's symptoms too, and he is suppose to be a Chiari specialist. So who knows!!!!!!!
What a battle we all have to fight, and what a D*** shame!!!!
Good for you Wolf, we all need to be this way as again like we have discussed before, we are paying the bill.
Barb :)
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1314344 tn?1274843421
I am also shocked at what doctors think you will believe.  When my neurologist saw the chiari and spinal cord tube, he referred me to an Ivy League neurosurgeon, and a large clinic associated with the medical school.  You assume that if someone is a doctor, then they have had the proper training and would know things.  Not true!!  The picture of the cerebellum going way down, clearly visible as a continuation of brain tissue, in both saggital & axial views - he said was just a funny picture of spinal fluid.  And mine is longer on the right side than on the left - so what would that mean: I DON'T have any spinal fluid on the left side?  He's not using logic.  The picture of the 4-5 inch distinct & separate syrinx - he called a "pulsation artifact" and explained that the brain beats like a heart, and maybe it was a picture of when the fluid was beating in my cord, blah, blah; [even though it's not just in one picture, it's in every film slice in that area, saggital & axial].  Does he think I was born yesterday?  I'm not going to believe everything he says, just because he is a doctor.  And doctors whine & cry that patients don't trust them - probably because of patients experiencing stuff like this!  It's their own fault.
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620923 tn?1452915648
COMMUNITY LEADER
Sorry not yet, my Contact was out of the area for a few days...I will try her again....

Glad u found u can ride this bike and balance isn't an issue...I think I will give it a try...DH will have to fill the tires with air and grease up the chain....not sure if he will...he is way to over protective and doesn't even let me go to NY to stay with DD bcuz she had the sniffles.....and it is allergies : )

"selma"
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Avatar universal
LOL is right! I'd kind of decided not to get one as the rides I took where just too harsh. But my son called around as he wanted this bike. It has a very different suspension on the rear and well he convienced me to try it. I rode it accross the parking lot and was sold. I didn't feel one bump just smooth. Have to a little looking though as it has disc brakes on the front and they are not assembled correctly. So we'll do a little tinkering tommorow. If it turns out I can't safely used this one he wants it. Otherwise he said he wants to order the same model in for himself. He has a very nice road bike but wants this one for offroad rides.

Me I"m just hoping to get some 'safe' exercise from it. If I start having these weird head pains riding it we'll then he'll have his bike, don't need to fall. Thus far think we're ok there though. Balance I thought would be a problem but so far we're good there. Not going too fast, just easy riding and doing ok. Hope it stays that way.

BTW-still gathering my thoughts in an outline but will start putting them together for our Dear Quacker House in the next few days. Did we get any #s that I can use? Or if not that's ok too.

Wolf
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620923 tn?1452915648
COMMUNITY LEADER
lol...Same here...u can see when I had flare ups bcuz that is when I went to a dr....and it was a diff dr every so often as I tried to find one that would take time to find out what was really wrong.

I am so glad u found a bike!!!...I hope u find one for ur DS as well : D

"selma"
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Avatar universal
Yeap, that's pretty much my opinion and has been for years. Thus I rarely go to a doctor although this past year... hate to even think about this last year.

Funny you would ask, I just picked up a bike today. It has a bit of a different suspension on it. I don't have it setup yet but took it for a short go and am pleasantly surprised at this point. Very smooth ride. My son said it's more of a free ride or competition suspension but all I care is that my head doesn't bounce all over creation. We'll set it up tommrow and give it a spin if the rain holds off. No my son didn't buy one, he found this one and we agreed to purchase one and see if I liked it, if so we'll go back and he'll buy one. Otherwise this one is his.

Wolf
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620923 tn?1452915648
COMMUNITY LEADER
Hi Wolf...r u still debating on getting ur self a bike?

I think the '70's and '80's were big on handing out prozac....not sure except it is a band aid and admission that the dr does not have a clue...plus I feel they do this with many other conditions as well....in reading other forums u can see it doesn't matter what u have the drs r all the same.....clueless : D


"selma"
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Avatar universal
Never really thought about it till now selma...

Almost ten years ago they where trying imetrex {sp?} and a bunch of other stuff for my headaches as nothing really worked. Finally they went through a gammet of anti-depressant meds with me. When they got to Prozac it sent me off my rocker, that pill and my body just didn't agree. Threw out the pills and crawled back into my "I'll take care of myself" mode. And frankly I did take better care of myself than they did until about two years ago. Yeah, sounds like there are a lot of 'good' doctors out there who don't have a clue about Chiari. Makes you wonder about all these other things they claim to know about.

Like lil sis says... and they think we're crazy! I'm going to start calling Medicare for every charge from one of these quacks that doesn't know what they are doing. May not do any good but perhaps it will.

Oh well, off to help my son he's looking for a bicycle.

Wolf
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1268921 tn?1288919056
WHOA!!!!!!!!!!!!!!!!
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620923 tn?1452915648
COMMUNITY LEADER
I know I told this story b4, but in '76 I was in a MVA...suffered from really bad HA's...sent to a shrink....I saw him 3 times...the first time he told me...u do not have a brain tumor (I have no idea how he would know this I hadn't had a MRI) said I wasn't going to die, and what did I want to do when I graduated High school.....on the 3rd visit...he said the same things....and when he asked about what I wanted to do upon graduating....I stood and said, well I know I will not be wasting my time sitting here listening to u.....I walked out.
The best part is, I told them I was in an accident and where the HA's originated...no MRI, no xrays and they called me nuts......or that it was anxiety....blah

Yrs later another dr rx'd  prozac for me.....they all think we r nuts.

"selma"
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Avatar universal
Wolf, You must have seen the same doctors I have seen for the last 2 years to write this story? OMG, this is exactly what has been happening to me.  This even happened to me at the Cleveland Clinic in the epilepsy center, which I don't have, and only wasted my time and money.  I will never forget that freak, who is supposed to be a neurologist, telling me that Chiari wouldn't cause these symptoms and that I have a psychological problem - with that smirk on his face!  I have never been so humiliated.  That center of Cleveland Clinic needs to shut down, they treat you like your in a mental hospital or prison or something!
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Avatar universal
Not to worry Shannon! He disgusted me because of the god complex mostly. But when he threw in the psychosis thing and questioned a couple other things I got a little bent out of shape.

Mostly posted this episode in my life in hopes that it would convey to others not to just openly 'trust' that someone is a good doctor just because their plaque on the wall says 'I is smart'. Doctors are simply human beings they make mistakes and all too often Doctors allow themselves to fall into the trap of feeling that if they don't the answers you won't trust them. It reminds me of the saying an old engineer used to say to the engineers who worked under him. When someone would get a stupid attitude like this quacker jack box doctor he'd tell us "Don't worry about it. You can't expect a fool to know what he just doesn't know."

Life goes on, the grass roots are still below our feet and we are still breathing!

Wolf
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Avatar universal
NO!!! This guy was a complete Quack and obviously has no idea what the reality of Chiari really is all about. He just wanted me to pay him my Dr fees. No wonder he's settled in a small town, he's a Quack big time. Donald Duck has more brains in the end of broken off toenail.

If you look at a few of the Chiari websites you'll find that some of these quacks do send Chiari patients in for that type of care. But it is because they don't believe your symptoms are real, not because this is a real symptom at all.
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1159737 tn?1286517257
Wait what- Chiari causes psychosis? Did I miss that somewhere? is it even a remote possiblity for this guy to pick up on that amidst all the other issues?
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1041839 tn?1278681846
Oh dear! Wolf, I'm SO sorry you had to deal with yet another Quack! But the way you have with words has me LOL! I love the idea of a dr interview though, that is awesome! I do believe i will be doing that in my search for a NL. My pcp has admitted he is not knowledgable about chiari, but he is VERY willing to learn! And has learned quite a bit in the past few months. We (my pcp and I) have a running 'joke' about his homework. Everytime i go see him i take him something new about chiari and related conditions i have printed from the internet, and he always asks "Is this my homework?" lolI am very fortunate to have him! I'm not so surei will be as lucky with a NL! Keep searching and if all else fails we could just round up all the Quacks and let you Mr. Wolf chase them into to woods! LOL Blessings my friend ~ Shannon
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