Aa
disapointing :(
had my dr apt w/ the ns today. he had seen my scans before I even made an appointment and said he would like to do the cine study. Well today he decided I didn't need the study. he said the chiari was 5mm but minimal. He said I had lost the curve in my neck and I must be stressed and have poor posture. (so basically I am making this up in my head?) This was after the nurse wrote that I an unsteady gait and a diminished gag reflex. he repeated the tests and made her change her notes! he also got mad that I couldn't stop my tongue from twitching (that was wierd).
It is so dissapointing when I thought I was getting somewhere... :( I would not have even gone to see him in the first place except that he said he would do the cine mri. so now what? how do i fix my neck?
It is so dissapointing when I thought I was getting somewhere... :( I would not have even gone to see him in the first place except that he said he would do the cine mri. so now what? how do i fix my neck?
Too long to go into, but a quick note:
God helps those, who help themselves...
Also, and I can show it based on Scientific standards, Science proves God exists.
They will never admit it, but scientists continue to prove themselves wrong and the existence of God, based on their methods of proof and verification.
Side note: God, or a Diety of some form, for those who believe differently.
God helps those, who help themselves...
Also, and I can show it based on Scientific standards, Science proves God exists.
They will never admit it, but scientists continue to prove themselves wrong and the existence of God, based on their methods of proof and verification.
Side note: God, or a Diety of some form, for those who believe differently.
Matt 7:7-8 "Ask and it will be given to you, seek, and you will find; knock, and it will be opened to you. (8) For everyone who asks receives, and he who seeks finds, and to him who knocks it will be opened." :):):)
BUT there is one stipultation to the above....you gotta have an intimate relationship with God before you can hear what He is telling you. Hmmmm
John 8:47 "He who is of God hears God's words; therefore you do not hear, because you are not of God."
Now let me explain what this verse means: "of God" here means "belong to; to have a relationship with." So those who have accepted Christ as their Savior, study the bible, spend time in prayer, is "of God" and those who have not are not "of God". Those are the people that only pray when they are "in a fox hole" and blame when things dont go their way if you know what I mean.
In the OT God spoke to His people through the prophets; in the NT He spoke through Christ; He now speaks through the Holy Spirit. He does so through His word (bible), our prayers, and other believers. With an intimate relationship with God, you will come to recognize His voice.
I am doing a bible study called "Experiencing God" and, go figure, today's lesson title is "God Speaks to His People". And the above is what I learned today. :):) What is so cool, is God KNEW we would have this discussion and already put into motion His plan for us to know how to hear Him!
So this is how I encourage others: "You have nothing to lose and everything to gain by accepting Christ, developing a relationship with Him, fully trusting Him, and complete faith that He will honor His word. See, God cannot lie, He does not change, so when He says "ask and it will be given" He means it. Your faith may be tested through the amount of time He takes, but He is always right so you gotta grab hold, and hold on.
At first I was really mad that an MRI I had in 11/07 showed Chiari, but doctors dismissed it. Then God brough to my attention that had I been told I needed to pursue this then, I would not have gone for a routine mammogram in January b/c I wouldnt have thought about it. That routine mammo saved my life. If I hadnt gone then, my cancer would have spread quickly and I would have been in a really bad way. So I turned around and said "Praise GOD I didnt know that Chiari was anything 2 years ago!" LOL
BUT there is one stipultation to the above....you gotta have an intimate relationship with God before you can hear what He is telling you. Hmmmm
John 8:47 "He who is of God hears God's words; therefore you do not hear, because you are not of God."
Now let me explain what this verse means: "of God" here means "belong to; to have a relationship with." So those who have accepted Christ as their Savior, study the bible, spend time in prayer, is "of God" and those who have not are not "of God". Those are the people that only pray when they are "in a fox hole" and blame when things dont go their way if you know what I mean.
In the OT God spoke to His people through the prophets; in the NT He spoke through Christ; He now speaks through the Holy Spirit. He does so through His word (bible), our prayers, and other believers. With an intimate relationship with God, you will come to recognize His voice.
I am doing a bible study called "Experiencing God" and, go figure, today's lesson title is "God Speaks to His People". And the above is what I learned today. :):) What is so cool, is God KNEW we would have this discussion and already put into motion His plan for us to know how to hear Him!
So this is how I encourage others: "You have nothing to lose and everything to gain by accepting Christ, developing a relationship with Him, fully trusting Him, and complete faith that He will honor His word. See, God cannot lie, He does not change, so when He says "ask and it will be given" He means it. Your faith may be tested through the amount of time He takes, but He is always right so you gotta grab hold, and hold on.
At first I was really mad that an MRI I had in 11/07 showed Chiari, but doctors dismissed it. Then God brough to my attention that had I been told I needed to pursue this then, I would not have gone for a routine mammogram in January b/c I wouldnt have thought about it. That routine mammo saved my life. If I hadnt gone then, my cancer would have spread quickly and I would have been in a really bad way. So I turned around and said "Praise GOD I didnt know that Chiari was anything 2 years ago!" LOL
I so completely echoe what survivor has said...
I am from a religious background and I have also know that God was there to help me but I have also always felt that it was up to me to help myself as well.
I did the same thing night after night praying that He would help me, just anything...a sign of what to do or where to go...I understood that He wouldn't just heal me or have a flashing sign saying what it was I had..but I knew if I had faith that He would point me in the right direction...and He did!!
My Dh happened to meet my NS through his business at the EXACT same time I started to go downhill!! I even remember joking that it was good b/c maybe I'd need a NS. Then, at the last minute we decided to go to this fair in our town and who do we meet there, this NS with his family! So my DH and him strike up a conversation and then he SEES how I am walking and says to my DH that if I had trouble getting to the bottom of it to give him a call. So my DH keeps working there for that week and keeps updating him about the headaches ect...but being timid me I decided that it is better to follow through with my NL..not wanting to step on toes or anything. So I do for the next few months...and get NOWHERE!! Frustrated and depressed once again I pray for God to help me and then withing a day or two, this NS calls up my DH to see how I am doing and if I'd made progress and that he wants to help!! At this point I had enough of my NL so I took him up on the offer...and well we all know the rest, he dx the Chiari and did the surgery.
So, I am not normally a preaching kind of person...but no one can convince me that it was anything different than an act of God!!
So Jen, keep praying...but also look out for the signs that He is helping you and have faith! We have to take what He gives us and do the most with it...I don't read the bible often but there is one phrase I remember and I don't think this is a direct quote or anything but .....if you need help, before God can open the door, you have to knock first!
As for the timidness, I was right there with you, I was extremely intimidated by my NL and it did me absolutely no good. So I got the idea to write down all my symptoms in a letter and I dropped them off at his office requesting that he see me. It worked for him to call me in but unfortunately it didn't get me far. However, the NS was very happy to have the list too. Selma has a good suggestion, take someone to the visits with you. I did and it helped me feel confident, also it was very helpful b/c all the information would swirl around in my head so I wouldn't remember anything but my mom came and she would write it all down!!
Take care and keep your chin up, we are all here for you:)
Carolyn
I am from a religious background and I have also know that God was there to help me but I have also always felt that it was up to me to help myself as well.
I did the same thing night after night praying that He would help me, just anything...a sign of what to do or where to go...I understood that He wouldn't just heal me or have a flashing sign saying what it was I had..but I knew if I had faith that He would point me in the right direction...and He did!!
My Dh happened to meet my NS through his business at the EXACT same time I started to go downhill!! I even remember joking that it was good b/c maybe I'd need a NS. Then, at the last minute we decided to go to this fair in our town and who do we meet there, this NS with his family! So my DH and him strike up a conversation and then he SEES how I am walking and says to my DH that if I had trouble getting to the bottom of it to give him a call. So my DH keeps working there for that week and keeps updating him about the headaches ect...but being timid me I decided that it is better to follow through with my NL..not wanting to step on toes or anything. So I do for the next few months...and get NOWHERE!! Frustrated and depressed once again I pray for God to help me and then withing a day or two, this NS calls up my DH to see how I am doing and if I'd made progress and that he wants to help!! At this point I had enough of my NL so I took him up on the offer...and well we all know the rest, he dx the Chiari and did the surgery.
So, I am not normally a preaching kind of person...but no one can convince me that it was anything different than an act of God!!
So Jen, keep praying...but also look out for the signs that He is helping you and have faith! We have to take what He gives us and do the most with it...I don't read the bible often but there is one phrase I remember and I don't think this is a direct quote or anything but .....if you need help, before God can open the door, you have to knock first!
As for the timidness, I was right there with you, I was extremely intimidated by my NL and it did me absolutely no good. So I got the idea to write down all my symptoms in a letter and I dropped them off at his office requesting that he see me. It worked for him to call me in but unfortunately it didn't get me far. However, the NS was very happy to have the list too. Selma has a good suggestion, take someone to the visits with you. I did and it helped me feel confident, also it was very helpful b/c all the information would swirl around in my head so I wouldn't remember anything but my mom came and she would write it all down!!
Take care and keep your chin up, we are all here for you:)
Carolyn
COMMUNITY LEADER
I have to agree...to know what and y u have to ask...u have to be ur own advocate with this or ne other condition. If by nature this is difficult for u...take someone along that will either give u the confidence to ask ?'s or ask for u.
"selma"
"selma"
One thing I know for sure, it is not God's will for any of us to be sick, in pain, hurting. If you truly trust in Him, and earnestly ask Him for healing, He will honor your prayer.
John 16:23-24 "And in that day you will ask Me nothing. Most assuredly I say to you, whatever you ask the Father in My name He will give you. (24) Until now you have asked nothing in My name. Ask and you will receive, that your joy may be full."
For years I have always prayed for healing for others, but never for myself. I would think "Oh, God won't heal me, this is medical, He wont heal this" Now, I have no idea WHY I would think that way ESPECIALLY since He, Himself alone, showed my doctors I had cancer! I didnt know I had cancer, but He knew.
Anyway, back last fall, I began to fervently pray for Him to heal me of my pain. I would say "Lord, I don't care how You do it, who You use to do it, or when You do it, just PLEASE do it." See God uses PEOPLE to do His work and that includes doctors. :)
It was a TOTAL "God thing" that I found out that ChM was more than just a "thing". Just like with cancer, He used someone to tell me about this condition. And I have all the peace and confidence that His plan is in action to do just as I have asked. I just had to ASK!
Proverbs 3:5-6 "Trust in the Lord with all your heart, and lean not on your own understanding; (6) In all your ways acknowledge Him, and He shall direct your paths."
Ask Him, then be patient as He does His thing!
Amen :)
John 16:23-24 "And in that day you will ask Me nothing. Most assuredly I say to you, whatever you ask the Father in My name He will give you. (24) Until now you have asked nothing in My name. Ask and you will receive, that your joy may be full."
For years I have always prayed for healing for others, but never for myself. I would think "Oh, God won't heal me, this is medical, He wont heal this" Now, I have no idea WHY I would think that way ESPECIALLY since He, Himself alone, showed my doctors I had cancer! I didnt know I had cancer, but He knew.
Anyway, back last fall, I began to fervently pray for Him to heal me of my pain. I would say "Lord, I don't care how You do it, who You use to do it, or when You do it, just PLEASE do it." See God uses PEOPLE to do His work and that includes doctors. :)
It was a TOTAL "God thing" that I found out that ChM was more than just a "thing". Just like with cancer, He used someone to tell me about this condition. And I have all the peace and confidence that His plan is in action to do just as I have asked. I just had to ASK!
Proverbs 3:5-6 "Trust in the Lord with all your heart, and lean not on your own understanding; (6) In all your ways acknowledge Him, and He shall direct your paths."
Ask Him, then be patient as He does His thing!
Amen :)
Thanks everyone for your comments and support. I have just been laying back and asking, okay what am I supposed to learn from these experiences. I have also been having some strange dreams or night terrors so I think Someone may be trying to teach me something, (either that or it is the drug withdrawal :) )
I probably am too timid with the dr., not asking them to explain themselves. Also judging my symptoms as to whether or not I should pursue anything further. and Lastly I think part of my lesson is to recognize that God is in control and is the Ultimate Physician :) too often I try to be in control of everything and have to know what is going on and why and just like I sometimes tell me kids when they ask why - "just because"
I probably am too timid with the dr., not asking them to explain themselves. Also judging my symptoms as to whether or not I should pursue anything further. and Lastly I think part of my lesson is to recognize that God is in control and is the Ultimate Physician :) too often I try to be in control of everything and have to know what is going on and why and just like I sometimes tell me kids when they ask why - "just because"
Here is the problem. Too many doctors are too busy and so if your symptoms do not coincide with their textbooks, then they are too busy to think outside of the box.
On the other hand, so many women will convince themselves they have symptoms that they do not have. Yes men too, but women are more likely to do this. YES I am a female, and I still know this is the truth. As a breast cancer survivor, I cannot tell you how many times I would read posts from ladies who "had to take a xanax and lay in the bed with a cold rag" because they were told they needed to have their mammogram repeated in 3 months! I swear one lady was already shopping for WIGS, just because her doctor told her this!!!
It is difficult to balance both sides. Doctors hear all day long "this hurts, that happens" etc and patients here "nah, it doesnt mean anything". Sometimes the more we pursue, the less respect we receive and other times, when we dont want to be bothered, doctors order test, after test, after test. So go figure.
Sometimes we have symptoms that dont develop until we read about them online, other times we had they symptoms but UNTIL we read about them on the internet had no idea it was a symptom of something.
We can be our best advocates but we can be our worst enemies.
On the other hand, so many women will convince themselves they have symptoms that they do not have. Yes men too, but women are more likely to do this. YES I am a female, and I still know this is the truth. As a breast cancer survivor, I cannot tell you how many times I would read posts from ladies who "had to take a xanax and lay in the bed with a cold rag" because they were told they needed to have their mammogram repeated in 3 months! I swear one lady was already shopping for WIGS, just because her doctor told her this!!!
It is difficult to balance both sides. Doctors hear all day long "this hurts, that happens" etc and patients here "nah, it doesnt mean anything". Sometimes the more we pursue, the less respect we receive and other times, when we dont want to be bothered, doctors order test, after test, after test. So go figure.
Sometimes we have symptoms that dont develop until we read about them online, other times we had they symptoms but UNTIL we read about them on the internet had no idea it was a symptom of something.
We can be our best advocates but we can be our worst enemies.
COMMUNITY LEADER
HI Jen...sounds like u had one of those appointments we all dislike so much.....and I am sorry I was MIA and not able to reply sooner.
I know u got a lot of great advice and I hope u find a true chiari dr to really look at ur issues...a CINE will give the dr more insight to what is going on,. as to wether or not ur chiari is minimal can not be said until u know if u have overcrowding or a CSF blockage...a minimal herniation mayb, but not a minimal chiari issue.
Good luck and keep us posted : )
"selma"
I know u got a lot of great advice and I hope u find a true chiari dr to really look at ur issues...a CINE will give the dr more insight to what is going on,. as to wether or not ur chiari is minimal can not be said until u know if u have overcrowding or a CSF blockage...a minimal herniation mayb, but not a minimal chiari issue.
Good luck and keep us posted : )
"selma"
Maybe because the road is so long for help with Chiari that we get so frustrated and easily annoyed. I just wanted to say that I think EdwardPB makes lots of important points, maybe not ones that some people want to hear but none the less lots of important reminders! The board here provides a great service and answers lots of questions and most importantly gives friendship and reminders to keep looking for a real Chiari expert.
It is a great reminder that we can all eventually find a hack that will make a hole in our heads but is that what you really want?? Do you want the surgery even if everyone believes it will not help you??? This is where there is SOME personal responsibility... find MANY opinions and use you brain not your pain scale to make your choices!! No one is saying the pain is not real, it just may not be the Chiari at times!
Regardless of how many here have true Chiari with symptoms, anyone reading all the posts also knows that there are plenty here that are NOT suffering from Chiari! It is unavoidable. It is not a bad thing, it is a place to learn and there will be a huge spectrum of people and ailments! We all also know that Chiari resembles so many other things that it can get very complicated as to where the symptoms are coming from.
On top of an already confusing problem, then there are lifestyle choices that compound things! Add in drinking, smoking, drugs, lack of exercise, diet choices and the mental way that you approach your situation... so many things to consider!!
Just like this board the doctors are seeing people all over the spectrum and I do believe that whether it is right or wrong the Doctors have to make choices about who and what they are dealing with, this makes finding doctors with the most experience so important! Then perhaps they will be dealing with the facts... and sadly there are not even many facts to go on with Chiari!!!
I think it is good to have a reminder that you don't always know what is causing your pain and to remember that surgery is not going to necessarily cure everything! A reminder that you do need to be in charge of your choices and how many opinions you get and YES the medical community makes mistakes, they are HUMAN!!! Is it frustrating, YES!!! No one says it is not frustrating but as in life we still need to make the most of what we have and ultimately realize we have to be in control of our choices!
Until someone figures out what Chiari really does to people there will lots of ideas and some of it will be useful and some useless!!!
It is a great reminder that we can all eventually find a hack that will make a hole in our heads but is that what you really want?? Do you want the surgery even if everyone believes it will not help you??? This is where there is SOME personal responsibility... find MANY opinions and use you brain not your pain scale to make your choices!! No one is saying the pain is not real, it just may not be the Chiari at times!
Regardless of how many here have true Chiari with symptoms, anyone reading all the posts also knows that there are plenty here that are NOT suffering from Chiari! It is unavoidable. It is not a bad thing, it is a place to learn and there will be a huge spectrum of people and ailments! We all also know that Chiari resembles so many other things that it can get very complicated as to where the symptoms are coming from.
On top of an already confusing problem, then there are lifestyle choices that compound things! Add in drinking, smoking, drugs, lack of exercise, diet choices and the mental way that you approach your situation... so many things to consider!!
Just like this board the doctors are seeing people all over the spectrum and I do believe that whether it is right or wrong the Doctors have to make choices about who and what they are dealing with, this makes finding doctors with the most experience so important! Then perhaps they will be dealing with the facts... and sadly there are not even many facts to go on with Chiari!!!
I think it is good to have a reminder that you don't always know what is causing your pain and to remember that surgery is not going to necessarily cure everything! A reminder that you do need to be in charge of your choices and how many opinions you get and YES the medical community makes mistakes, they are HUMAN!!! Is it frustrating, YES!!! No one says it is not frustrating but as in life we still need to make the most of what we have and ultimately realize we have to be in control of our choices!
Until someone figures out what Chiari really does to people there will lots of ideas and some of it will be useful and some useless!!!
Hey, don't apologize to me.... I know I need a slap upside the head on a regular basis.
(of course too many traumas upside the head has a lot to do with my abrupt personality....)
Yes I am new to Chiari, but not new to the medical field, and most people's misconceptions of it. Also, most Doctors misconceptions to their abilities and knowledge...
Further more, (and I had a misconception about how well I thought I made that obvious) I have been talking in regards to, how things apply to our bodies and health in general.
(of course too many traumas upside the head has a lot to do with my abrupt personality....)
Yes I am new to Chiari, but not new to the medical field, and most people's misconceptions of it. Also, most Doctors misconceptions to their abilities and knowledge...
Further more, (and I had a misconception about how well I thought I made that obvious) I have been talking in regards to, how things apply to our bodies and health in general.
Just want to say...very well put by all. I really can't add much to it b/c it has been said so well by all of you :)
Shannon is so right, we see so many people going through this everyday and it is wrong that it has to be this way. That's why we have to all pull together and do our best to get the word out there that Chiari is a real disease and should be treated as one!
Instead of anger of what happened in my situation (and others) I have decided it is better to put that energy towards making a difference even if it's one person at a time.
And yes, we DO have to be our own advocates!
Take care everyone!
Carolyn
Shannon is so right, we see so many people going through this everyday and it is wrong that it has to be this way. That's why we have to all pull together and do our best to get the word out there that Chiari is a real disease and should be treated as one!
Instead of anger of what happened in my situation (and others) I have decided it is better to put that energy towards making a difference even if it's one person at a time.
And yes, we DO have to be our own advocates!
Take care everyone!
Carolyn
All I can say my friend is :-)
You came accross very well that time. And you are most correct, we must advocate otherwise this is one ailment amoung many that will continue to get dismissed. Hey my brother, I too am sorry if I came accross too strong. At this point though I belive all is well and your point can be well seen by all.
Hang in there,
Wolf
You came accross very well that time. And you are most correct, we must advocate otherwise this is one ailment amoung many that will continue to get dismissed. Hey my brother, I too am sorry if I came accross too strong. At this point though I belive all is well and your point can be well seen by all.
Hang in there,
Wolf
Edward, i truly believe you mean well and i kinda see where your coming from. I saw in another post that you said you were new to chiari and i think that may be the difference. You have to understand most of us have been dealing with this stuff for years and been from dr to dr! I am so happy (and a little envious) when i hear about someone that got a dx quickly and found a dr that understands chiari on the first "try". That is NOT the norm! I have been to countless drs and everytime i had my list of questions and symptoms in hand. I have been told it was an insignificant finding, that i was depressed, maybe its miagraines, fibro, and chronic fatigue, which all were basically BS. I have asked questions and been told to quit askin because i was not the dr! I had one dr ask me if i thought i knew more than he, the neurologist did (this was after he told me he saw the herniation but didnt think that was my problem and was only gonna treat me for miagraines which I DONT have) so i looked at him and said, when it comes to chiari apparently I do and walked out of his office! What i'm tryin to say is that myself, wolf, selma, carolyn, ray, and many others have been dismissed by so many drs and we see so many people here on a weekly if not daily basis that are going through the same things! And its just not worth fighting if you are gonna get nowhere with that dr. That is why we STRESS over and over to see a TRUE chiari specialist! The one thing i totally agree with you on is that we have to be our on advocates! I know You're trying to help, i think it just came out wrong lol just try to understand where we are coming from. Blessings ~ Shannon
Jenbes
I did not intend criticism. I intended to provide help.
Scientists are not as smart as you think. Specialists are not as all knowing as you would like.
I also said "most" problems are the patients fault. And the reason for that, is the attitude you are displaying here.
People should go in KNOWING that their Doctor has a lot of limitations, even in their specialty.
I am NOT justifying any doctors actions or attitudes. I am pointing out, that people need to take responsibility for themselves.
Do you know why many doctors leave your room, then come back 15 minutes later?
It's because they are going to look something up. (yes, see other patients too)
So, don't expect the doctor to have every answer, or make a good decision.
Ask them what their intentions are. Ask them why they made their decisions. Tell them why you feel something is relevant to a certain issue.
A Neuro Surgeon who got a "C-" is still a Neuro Surgeon.
Refusing to admit they don't know something is not a strong case.
How many of you know many types of table salt there is? Many of you probably think you know what salt is, and whether someone should use it or not.
You have some salt on your table and probably don't think twice about putting it in food you serve to others.
Is your salt iodized or non-iodized? Most people think iodine is bad, but the body needs it. Salt is a great place to get it. But, some people need to avoid iodine.
Iodine or not, do you know when you need more salt? Do you know when you have too much salt?
You're not refusing to admit you don't know much about salt. You just don't know that you don't know.
Maybe I come across poorly. I have never succeeded in correcting that character flaw.
But don't discount the message.
Take charge of your life, and health. Don't let the Doctor (or anybody else) run it for you.
I did not intend criticism. I intended to provide help.
Scientists are not as smart as you think. Specialists are not as all knowing as you would like.
I also said "most" problems are the patients fault. And the reason for that, is the attitude you are displaying here.
People should go in KNOWING that their Doctor has a lot of limitations, even in their specialty.
I am NOT justifying any doctors actions or attitudes. I am pointing out, that people need to take responsibility for themselves.
Do you know why many doctors leave your room, then come back 15 minutes later?
It's because they are going to look something up. (yes, see other patients too)
So, don't expect the doctor to have every answer, or make a good decision.
Ask them what their intentions are. Ask them why they made their decisions. Tell them why you feel something is relevant to a certain issue.
A Neuro Surgeon who got a "C-" is still a Neuro Surgeon.
Refusing to admit they don't know something is not a strong case.
How many of you know many types of table salt there is? Many of you probably think you know what salt is, and whether someone should use it or not.
You have some salt on your table and probably don't think twice about putting it in food you serve to others.
Is your salt iodized or non-iodized? Most people think iodine is bad, but the body needs it. Salt is a great place to get it. But, some people need to avoid iodine.
Iodine or not, do you know when you need more salt? Do you know when you have too much salt?
You're not refusing to admit you don't know much about salt. You just don't know that you don't know.
Maybe I come across poorly. I have never succeeded in correcting that character flaw.
But don't discount the message.
Take charge of your life, and health. Don't let the Doctor (or anybody else) run it for you.
Hello again jenbes! I was just reading back through this thread and am a little uncertain. Did you find the help you where seeking? If not, or if so, and you wish to PM me please feel free to do so at anytime. I don't always check emails every day but do quite often.
EdwardPD- Perhaps you're just not feeling so well yourself. Perhaps that is what is behind some of these comments. You know every science major, which is what a doctor is a scientist, one of the first lessons is to learn to look at 'all' the facts before speaking or writing your papers. Anything less is just not science. To make some of the broad statements such as you have here serve no useful purpose. This is a forum intended to 'support' folks and help them to make educated choices with their life. Frankly anyone who has dealt with this or other similar problems for a number of years or even a lifetime; well they learn to spot a bad doctor a mile away. Sigmund Freud's studies of the unconscious mind have shown us that when a human, any human, is subjected to the same treatment for any given process repeatedly this will produce a significant and exact result. This is true of many who have dealt with Chiari for a long period of time. The same is true of bullies when they get away with it for a number of times it becomes part of them, a part of their given Psychological self.
An example of this is found in the area where I live. There is a young man approximately 100 miles from here where my PCPs office is located. After my decompression I met him. He had his decompression done by someone I would deem a hack. And guess what; this Doctor is 'not' someone who deals with Chiari on a regular basis. And as such is not up on the latest research nor does he seem to understand the purpose of the decompression surgery. Rather he was, in this man’s mind, the last option to get help and hopefully go back to work. His symptoms where very severe some headaches that would drop him to the ground in pain. Now thanks to this 'doctor' who seen a buck walking his way this young man's life is forever to be adversely affected by this hack job. Is it this young man’s fault that his PCP and 3 other specialists, who have those fancy degrees on the wall, insisted that this man could help him and perhaps save his life? NO, it is not! He and his wife who is an RN talked and seen every medical professional they knew. Then after 'believing they were adequately educated agreed to the surgery. Because they where misguided by the medical community who pretended to know what was going on this young man will never work and his symptoms are in fact worse than before. Is that his fault? NO it is not! He did the best he knew and did use trained professionals to guide his choices.
The problem 'does' in this case lay with many doctors. They have the degrees we don't and the facts are that the ones who understand this condition are far and few between. There are an increasing number who claim to deal with it, this is true. But how many understand it? One Doctor, who is in this field, estimated there to be some 80% of the NS in practice who don't recognize Chiari as any more than an incidental finding.
The symptoms for many are very real. The lack of qualified Doctors is also very real. A doctor not being qualified and refusing to admit they don't know what is wrong is NOT in any way the patients fault. It is the fault of well trained doctors who don't understand this particular issue being too proud to admit to the patient "I’m sorry but we'll need to get another opinion in order to get the cause of this" Rather most just through some pills at the patient and say to let them know if this helps or not. This is nothing short of pushing drugs in an effort to dx the cause. Many of these drugs tend to only make things worse for some folks. Really no wonder as the root word for pharmacy is pharmakon meaning magic potion.
Bottom line, people here are looking for help not criticism. If they, or I, am going overboard that is why we have a moderator here.
Sincerely,
Wolf
EdwardPD- Perhaps you're just not feeling so well yourself. Perhaps that is what is behind some of these comments. You know every science major, which is what a doctor is a scientist, one of the first lessons is to learn to look at 'all' the facts before speaking or writing your papers. Anything less is just not science. To make some of the broad statements such as you have here serve no useful purpose. This is a forum intended to 'support' folks and help them to make educated choices with their life. Frankly anyone who has dealt with this or other similar problems for a number of years or even a lifetime; well they learn to spot a bad doctor a mile away. Sigmund Freud's studies of the unconscious mind have shown us that when a human, any human, is subjected to the same treatment for any given process repeatedly this will produce a significant and exact result. This is true of many who have dealt with Chiari for a long period of time. The same is true of bullies when they get away with it for a number of times it becomes part of them, a part of their given Psychological self.
An example of this is found in the area where I live. There is a young man approximately 100 miles from here where my PCPs office is located. After my decompression I met him. He had his decompression done by someone I would deem a hack. And guess what; this Doctor is 'not' someone who deals with Chiari on a regular basis. And as such is not up on the latest research nor does he seem to understand the purpose of the decompression surgery. Rather he was, in this man’s mind, the last option to get help and hopefully go back to work. His symptoms where very severe some headaches that would drop him to the ground in pain. Now thanks to this 'doctor' who seen a buck walking his way this young man's life is forever to be adversely affected by this hack job. Is it this young man’s fault that his PCP and 3 other specialists, who have those fancy degrees on the wall, insisted that this man could help him and perhaps save his life? NO, it is not! He and his wife who is an RN talked and seen every medical professional they knew. Then after 'believing they were adequately educated agreed to the surgery. Because they where misguided by the medical community who pretended to know what was going on this young man will never work and his symptoms are in fact worse than before. Is that his fault? NO it is not! He did the best he knew and did use trained professionals to guide his choices.
The problem 'does' in this case lay with many doctors. They have the degrees we don't and the facts are that the ones who understand this condition are far and few between. There are an increasing number who claim to deal with it, this is true. But how many understand it? One Doctor, who is in this field, estimated there to be some 80% of the NS in practice who don't recognize Chiari as any more than an incidental finding.
The symptoms for many are very real. The lack of qualified Doctors is also very real. A doctor not being qualified and refusing to admit they don't know what is wrong is NOT in any way the patients fault. It is the fault of well trained doctors who don't understand this particular issue being too proud to admit to the patient "I’m sorry but we'll need to get another opinion in order to get the cause of this" Rather most just through some pills at the patient and say to let them know if this helps or not. This is nothing short of pushing drugs in an effort to dx the cause. Many of these drugs tend to only make things worse for some folks. Really no wonder as the root word for pharmacy is pharmakon meaning magic potion.
Bottom line, people here are looking for help not criticism. If they, or I, am going overboard that is why we have a moderator here.
Sincerely,
Wolf
I was going along with a lot of what you were saying. I feel that a lot of people who post on these sites are desperate for answers and help. We were fortunate to find a dr who diagnosed my husband (we had no prior knowledge of a brain problem, thought he had a back issue). That dr referred my husband to a neurologist, who he saw 3 days later who then sent us to a neurosurgeon that week, who preformed surgery two weeks later. It was a quick whirlwind!! No waiting, suffering..so my heart aches for these people who suffer daily. So you can see why they may be a bit bias!
However when you say it is the patients fault..i think that is just a shame. A specialist should be just that...special in what they do! It shouldnt just be a general knowledge of a subject, they should know the ends ands outs of their field. If it werent for a back dr being informed of a Chiari malfromation, then my husbands weird pains that he always chalked up to being some aggrivation may have gone un attended to and done some real damage.
However when you say it is the patients fault..i think that is just a shame. A specialist should be just that...special in what they do! It shouldnt just be a general knowledge of a subject, they should know the ends ands outs of their field. If it werent for a back dr being informed of a Chiari malfromation, then my husbands weird pains that he always chalked up to being some aggrivation may have gone un attended to and done some real damage.
I just wanted to add what I wrote on another post to this one as well. I never had the opportunity to get a Chiari specialist where I live but from my experience this is what I would recommend when trying to find a dr who will help you.
In Canada, there are no actual Chiari specialists but I did find an excellent NS who was openminded and informed. What to look for in a dr:
-one that gives you lots of time to discuss your symptoms (my 1st visit was an hour)
-one that doesn't push aside any of your concerns and validates how you feel
-one that wants and is willing to do all the testing
-one that will answer all your questions and explain everything to you
-one that is willing to research further if they are not 100% sure (my NS went out and got a 2nd opinion for me from another NS who had had a Chiari case)
-one who actually CARES!!! about their patients
If you are not getting that from your NS then I would keep moving on until you find one that will :)
Carolyn
In Canada, there are no actual Chiari specialists but I did find an excellent NS who was openminded and informed. What to look for in a dr:
-one that gives you lots of time to discuss your symptoms (my 1st visit was an hour)
-one that doesn't push aside any of your concerns and validates how you feel
-one that wants and is willing to do all the testing
-one that will answer all your questions and explain everything to you
-one that is willing to research further if they are not 100% sure (my NS went out and got a 2nd opinion for me from another NS who had had a Chiari case)
-one who actually CARES!!! about their patients
If you are not getting that from your NS then I would keep moving on until you find one that will :)
Carolyn
Keep in mind, in my comments, I do not intend to imply Chiari is not the problem. Nor do I wish to minimize anyone's issues.
However, most problems with Doctors are the patients fault.
Get as mad as you want, but it's the truth. Doctors see a lot of people, and they can't know what each one is thinking, or what they might perceive.
It is up to the patient to ASK questions, and tell the DR. how you feel.
ASK the DR. why he is doing something, or why not. ASK the DR. what his intentions are.
If you don't agree with him, TELL him. ASK him why he feel differently. TELL him (or her) why you feel something is relevant.
Patients also need to know about Doctors limitations and that they are people too. How often do you get defensive, in order to protect yourself from admitting a weakness?
An Orthopedic surgeon might be great at shoulders, but lousy at knees. The other one might be the opposite. As far as a patient goes, he's (or she's) an Orthopedic Surgeon and knows everything about all the bones and joints.
Go in educated. Not just about what you think is wrong. But, go with an educated open mind. Know several things that can cause fatigue, or finger tingling, or ear pain, etc...
Know what lifestyle activities can cause them, or contribute.
Then, you can say: No, I don't put a cotton bud in my ear, so I couldn't have shoved wax against the ear drum.
Yes, I did have a cigarette 15 minutes ago, so I have to admit, that could be why my blood pressure is up right now.
If you have unanswered questions, it's because you didn't get the answers to them.
There is a difference between not understanding an answer, or not clarifying an answer, than not being answered.
I will say: If you have unanswered questions, because you DID ask and the Doctor would not answer, then the Doctor is not professional enough to be your (meaning anyone's) Doctor.
However, most problems with Doctors are the patients fault.
Get as mad as you want, but it's the truth. Doctors see a lot of people, and they can't know what each one is thinking, or what they might perceive.
It is up to the patient to ASK questions, and tell the DR. how you feel.
ASK the DR. why he is doing something, or why not. ASK the DR. what his intentions are.
If you don't agree with him, TELL him. ASK him why he feel differently. TELL him (or her) why you feel something is relevant.
Patients also need to know about Doctors limitations and that they are people too. How often do you get defensive, in order to protect yourself from admitting a weakness?
An Orthopedic surgeon might be great at shoulders, but lousy at knees. The other one might be the opposite. As far as a patient goes, he's (or she's) an Orthopedic Surgeon and knows everything about all the bones and joints.
Go in educated. Not just about what you think is wrong. But, go with an educated open mind. Know several things that can cause fatigue, or finger tingling, or ear pain, etc...
Know what lifestyle activities can cause them, or contribute.
Then, you can say: No, I don't put a cotton bud in my ear, so I couldn't have shoved wax against the ear drum.
Yes, I did have a cigarette 15 minutes ago, so I have to admit, that could be why my blood pressure is up right now.
If you have unanswered questions, it's because you didn't get the answers to them.
There is a difference between not understanding an answer, or not clarifying an answer, than not being answered.
I will say: If you have unanswered questions, because you DID ask and the Doctor would not answer, then the Doctor is not professional enough to be your (meaning anyone's) Doctor.
I'm sorry you had to go through that, but unfortunately most of us have BTDT(been there done that) I dont know if that dr was a chiari specialist or not, but by him saying 5mm is minimal and not wanting to go ahead with the CINE, then i would have to guess that he is not a chiari specialist! JMO! Size of herniation is not as important as csf flow. For example: my herniation is 3mm on left and 4mm on right, BUT my csf is 80% blocked! Oh, and btw i have NO gag reflex either. Personally, i think you should get to a true chiari specialist that looks at the whole picture and then you will most likely get some answers. Blessings ~ Shannon
Well... some in the medical profession still feel there is much room for interpritation of the symptoms of Chiari, reason being these 'trained professionals' don't understand Chiari as a whole. i.e. what is and isn't a symptom of the Malformation
Because of this there are still many Doctors out there who are cautious about admitting they know anything for fear of being proven wrong. Bottom line stays the same though. You are their employer. Do you wish to pay an employee who can't or won't do their job? Or worse yet, do you wish to pay an employee who not only won't do their job but wishes for you to pay them yet anothers days wage in order to compensate them for their previous error? To each his own, but it the 'doctor' can't meet my needs during the first visit there will not be a second. If that doctor has me leaving with questions for which he had an opportunity to answer and didn't do so... well it best be due to the fact that he needed to do more research in order to answer, that is acceptable. If it is because he is blowing me off, as some do, there is no way that doctor will receive compensation for me coming back again in order for him to explain the first visit!
Reasonableness, of course we owe that much respect to the doctor [our employee]. We shall not be his/her victim though anymore than you would hire a stranger to fuel up your car only for them wash the windsheild and tell you there is enough fuel in the tank to get you home. NO excuse for being a victim.
Wolf
Because of this there are still many Doctors out there who are cautious about admitting they know anything for fear of being proven wrong. Bottom line stays the same though. You are their employer. Do you wish to pay an employee who can't or won't do their job? Or worse yet, do you wish to pay an employee who not only won't do their job but wishes for you to pay them yet anothers days wage in order to compensate them for their previous error? To each his own, but it the 'doctor' can't meet my needs during the first visit there will not be a second. If that doctor has me leaving with questions for which he had an opportunity to answer and didn't do so... well it best be due to the fact that he needed to do more research in order to answer, that is acceptable. If it is because he is blowing me off, as some do, there is no way that doctor will receive compensation for me coming back again in order for him to explain the first visit!
Reasonableness, of course we owe that much respect to the doctor [our employee]. We shall not be his/her victim though anymore than you would hire a stranger to fuel up your car only for them wash the windsheild and tell you there is enough fuel in the tank to get you home. NO excuse for being a victim.
Wolf
Let me clarify a bit of my post.
It was a long winded way of saying, don't jump to conclusions, be open minded about all possibilities.
Also, at the end, notice I said "FIRST" step.
Carolyn's comment is the second step. After your questions are answered, you should be able to see what your Doctors view and plans are. If they don't lead towards a logical resolution, then a second opinion is always an excellent choice.
It was a long winded way of saying, don't jump to conclusions, be open minded about all possibilities.
Also, at the end, notice I said "FIRST" step.
Carolyn's comment is the second step. After your questions are answered, you should be able to see what your Doctors view and plans are. If they don't lead towards a logical resolution, then a second opinion is always an excellent choice.
I agree that it is difficult at times not to contribute all our symptoms to Chiari when some of them may be other things. However, most of it is because there is not enough known about it for us to compare to, I have had so many weird and scary things going on in my life for the past 2 years and no one could give me an explanation. When I finally got dx I saw the list of symptoms (on medical sites) and I could not believe my eyes!!
Could the curve in your neck be related to Chiari? Possible not, but the only reason I have heard on why Chiari goes from being asymptomatic to symptomatic is b/c of cervical changes in the spine. So it definitely could be making it worse.
What bothers me is that your NS is deciding not to go forward with you just b/c of the herniation size. All of the other stuff apart (and some of it sounds a little weird to me) that is a good reason to get another opinion. This has been said over and over but it is not the size of the herniation but how it is affecting you and what damage it is causing!! A CINE MRI would be the perfect way to find that out so I am confused on why it isn't getting done.
Just a comment on the gag reflex...I have none at all and my NS tried everything to stimulate one..so if that is the case with you too, I was told by my NS and it is stated in my reports that this is a hallmark sign of CM1.
I do agree with Edward though, it isn't good to jump to conclusions as we usually end up getting more upset than we have to. I WOULD however, ask him those questions and if you are not satisfied with the answers, get another opinion!!
Carolyn
Could the curve in your neck be related to Chiari? Possible not, but the only reason I have heard on why Chiari goes from being asymptomatic to symptomatic is b/c of cervical changes in the spine. So it definitely could be making it worse.
What bothers me is that your NS is deciding not to go forward with you just b/c of the herniation size. All of the other stuff apart (and some of it sounds a little weird to me) that is a good reason to get another opinion. This has been said over and over but it is not the size of the herniation but how it is affecting you and what damage it is causing!! A CINE MRI would be the perfect way to find that out so I am confused on why it isn't getting done.
Just a comment on the gag reflex...I have none at all and my NS tried everything to stimulate one..so if that is the case with you too, I was told by my NS and it is stated in my reports that this is a hallmark sign of CM1.
I do agree with Edward though, it isn't good to jump to conclusions as we usually end up getting more upset than we have to. I WOULD however, ask him those questions and if you are not satisfied with the answers, get another opinion!!
Carolyn
Don't jump to conclusions. A nurses notes are not patient notes. The Dr. is the approving authority, and any exam finding is subject to interpretation.
He may not be having her change her notes. he may be having her correct her exam to meet his interpretation of the results.
I am seeing a lot of trying to associate every symptom, with Chiari, on this forum.
There is a big difference between being a symptom of an illness, or injury, and a symptom being exacerbated by a specific illness or injury.
One thing being lost, is the need to identify all personal habits/actions/environments, that cause unrelated symptoms or increased symptoms.
The c-spine curvature would more likely be a result of an arthritis. This would exacerbate Chiari and vice versa.
Gag reflex can be altered by placement of tool to test. Temperature of tool, surface type, temperature of mouth, recent drink, recent cigarette, how much water you've drank, etc...
I am not saying your Doctor was correct, in anything he said, or did. I am not saying anything you experience is not Chiari related.
I am just saying, don't jump to conclusions. Especially ones about misconceptions on medical documentation legalities.
Also, about what (or why) your DR. was basing his decisions on.
First step:
Talk to the DR. Find out why he decided against the tests.
Ask him why he felt the exam results were different from what the nurse interpreted. Find out what his intentions are, to relieve your problems, if he does not wish to go in the same direction you were intending.
He may not be having her change her notes. he may be having her correct her exam to meet his interpretation of the results.
I am seeing a lot of trying to associate every symptom, with Chiari, on this forum.
There is a big difference between being a symptom of an illness, or injury, and a symptom being exacerbated by a specific illness or injury.
One thing being lost, is the need to identify all personal habits/actions/environments, that cause unrelated symptoms or increased symptoms.
The c-spine curvature would more likely be a result of an arthritis. This would exacerbate Chiari and vice versa.
Gag reflex can be altered by placement of tool to test. Temperature of tool, surface type, temperature of mouth, recent drink, recent cigarette, how much water you've drank, etc...
I am not saying your Doctor was correct, in anything he said, or did. I am not saying anything you experience is not Chiari related.
I am just saying, don't jump to conclusions. Especially ones about misconceptions on medical documentation legalities.
Also, about what (or why) your DR. was basing his decisions on.
First step:
Talk to the DR. Find out why he decided against the tests.
Ask him why he felt the exam results were different from what the nurse interpreted. Find out what his intentions are, to relieve your problems, if he does not wish to go in the same direction you were intending.
I would like to say that I'm shocked but unfortunatley I'm not. I don't know what contry you are in but I have had similar problems in England. The doc's make you think that you are going mad and that you are making everything up. What I am shocked about is him making the nurse change her notes that is discusting and you must take this up with the authorities that is just not right and is fraud!!!!
I wish that I could do something to help but I'm the same the docs here just keep blaming migraine and giving me meds that don't work - I've been at this for 21/2 years now.
Please keep us informed on how you are getting on and remember you know your body better thank anyone and if there is something wrong please fight them all the way until they do something.
God blessxxxxx
I wish that I could do something to help but I'm the same the docs here just keep blaming migraine and giving me meds that don't work - I've been at this for 21/2 years now.
Please keep us informed on how you are getting on and remember you know your body better thank anyone and if there is something wrong please fight them all the way until they do something.
God blessxxxxx
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