How does waiting to the age of 72 that it was found while looking for crystals in my inner ear. Never showed up untill the MRI with dye was done. Everyone now believes me. It took a long time.
I am sorry you had to go through this kind of disrespectful treatment,unfortunately to many here on this site knows what youāve been facing.We are very strong because we get through in spite of the tough knocks from the educated med.community.My journey was long too but if we persevere someday maybe the right NS will come along,ā¦ it has to be a specialist! I wish you a better road ahead,my decompression was a God send,my life is finally changed Iām 61 yrs.old but feel thereās a lot of good days ahead.That is my wish for everyone of you,never give up.
Lynn, Iām so glad you are feeling so much better, it gives me hope!
Lynn Messer said:
I cannot tell you the times I've gone away from offices crying,and God forbid they see you cry.They will then say you are just depressed,my answer to that is I'm not depressed I am devastated!! My chiari has gone on for 27yrs.+ and I have to fight my bitterness toward those Dr.s.I try to understand their lack of knowledge about this illness,if only they would be more understanding toward hurting people.The
mental anguish is as bad as the sickness,in my opinion there's not as many hypochondriacs as the medical community thinks,they just don't know about the less known conditions like this one.In my case there has been at least 20 docs.and so many tests and even surgeries that has cost me suffering and money,those are the easy things.I've dealt with the pain of being alone and that is worse than all these things.God has been my source of strength and He will always be,all we can do to is try to help each other.I will pray for all of you and will speak out every chance I get,to get the word out about the chiari and related illnesses.Thanks to these supportive friends that I have found on this site,sure wish I had found them long ago.Dr.Rosner in N.C.has given me hope for a better future,he is wonderful in the chiari field,my decompression is a year out and symptoms are much better.The key to help is a specialist in the chiari field.
Hello,
You are NOT being over sensitive at all!!! This is a typical response from uneducated doctors or doctors that simply don't believe that Chiaris actually cause all these problems. I was told numerous times that it was anxiety, being over weight and in menopause. It took 6 years for an accurate diagnosis for me and I had to go out of state to a Chiari Center in Wisconsin. Hang in there and continue to seek support from people in this group. It helps a ton.
I already feel a lot better after everybodys responses, this is the first time I've ever spoken to anybody else that has a chiari or SM, I can't even begin to describe how nice it is to speak to people who know what you're going through!
ventcrew said:
Hello,
You are NOT being over sensitive at all!!! This is a typical response from uneducated doctors or doctors that simply don't believe that Chiaris actually cause all these problems. I was told numerous times that it was anxiety, being over weight and in menopause. It took 6 years for an accurate diagnosis for me and I had to go out of state to a Chiari Center in Wisconsin. Hang in there and continue to seek support from people in this group. It helps a ton.
You story is almost EXACTLY what my life has been, both before and even after diagnosis. Even though it has now been about 7 years since diagnosis and multiple surgeries later, I still find myself feeling defensive not only with Dr's but also friends/family sometimes. Having the online Chiari family is how I am able to keep my sanity.
I'm also going through all of this. I'm 42 I was diagnosed April 15, 2011. I just had a Neurologist PhD tell me that my Chiari 6 mm Hernia is not severe enough to cause my symptoms and that I should just loose weight and I will feel better. It was all I could do not to break down crying again as I did in may last years visit with a different Doctor. Beyond Frustrated! Obese and crazy!
Here in Australia we had a well known comedian (Spike Milligan) who has on his gravestone the words"See I told you I was sick".I hope it does not ever have to get to this stage before we are taken more seriously ,when we first seek help,by the medical profession.
Haha I was thinking of getting that tattooed beside my scar! ;) I know exactly what you mean though, it feels like we're ignored until we've complained so much that they have decided that there is something phschological instead of physical wrong! I hope that one day doctors will realise that just because they don't fully understand something it doesn't mean that it doesn't exist!
putty said:
Here in Australia we had a well known comedian (Spike Milligan) who has on his gravestone the words"See I told you I was sick".I hope it does not ever have to get to this stage before we are taken more seriously ,when we first seek help,by the medical profession.
I hope you find a doctor that isn't so dismissive and hurtful, I've found that any weight I put on is caused by either comfort eating (due to being told there's nothing wrong or that it's my mind) or not being able to do much due to the pain but they never seem to factor pain into whatever opinion they've formed!
Wendy Lee Mendenhall Quilter said:
I'm also going through all of this. I'm 42 I was diagnosed April 15, 2011. I just had a Neurologist PhD tell me that my Chiari 6 mm Hernia is not severe enough to cause my symptoms and that I should just loose weight and I will feel better. It was all I could do not to break down crying again as I did in may last years visit with a different Doctor. Beyond Frustrated! Obese and crazy!
Before I was diagnosed, or even referred to a neurologist or for an MRIā¦I was told by a GP to get out of his office and stop wasting his time. He also suggested I give up my job and start taking anti depressants as I was obviously suffering with depression. This was all said to me whilst wagging his finger in my face like I was a misbehaving toddler. Needless to say I quickly found an alternative GP surgery!!! I was then reffered, scanned and diagnosed within a few weeks. Oh how id love to see him now and show him my scar!!! 
Donāt let people who donāt understand get you down, were all in this together
All the best
Laura
Xx
I too have had a similar experience with a couple of doctors......my self esteem was about as low as it could go,all I had was a diagnoses of connective tissue disorder,as if that wasn`t enough.One doctor,who I have been told ,has a "God complex"said"there is glad,sad and bad and this guy is the latter"....yeah me...",bad."...I still havn`t recovered from that one.Doctors are sworn to do no harm,so figure that one out.I am ,or rather have been, a professional musician for a lot of my life and I remember writing lyrics to a song that began"There`s a time bomb ticking over and it`s getting set to go off in my head"....even back then (twenty years ago) I knew something major was wrong with me.I am six weeks out from my MRI and diagnoses (6mm herniation ) but I knew that before hand ,after reading about CMS ,that this was the culprit....so if I could work that out, then why couldn`t the string of doctors I have seen over the years....many years.I see my NS again in a few weeks to see if surgery is an option,I hope I get the right answers this time....
The bad thing about it all is that all these Stories are common among chiari patients.I too have been through so many Dr.s,about 20 or more over a span of 27 yrs.It has been so hard to deal with the reg. med. Community.It seems they think they canāt be wrong but we chiarians are crazy Iāve begged and Cried.The last NS I seen was at Wake Forest in NC and I left there crying as if I had lost a family member.I wish there were a way to get the chiari specialists together with the NSs who dx this illness all wrong.We know it is not all about how much herniation is present,thatās the problem with their diagnosing.I am a yr. out from surgery and things are so much improved for me,thereās a few other things to address but Iām not complaining.It is verysad that so many are suffering while many reg. NSs refuse to learn from the Dr.s who know what to do.I say we just have to keep our heads up and keep trying to get the word out about the chiari illness,and help others to find answers too.
I finally got to see the wonderful Dr that has gotten so much praise here in Colorado. Maybe heās right. Maybe I need a cine MRI to fully evaluate my case. ( took hours out of my days to supply him with all medical records and MRIs cine included). He could have taken the time to actually read the records before giving me his precious fifteen minutes to tell me all of my symptoms are not chiari related. He referred me to dr for symptoms that I do not have. And told me my weight is whatās the possible cause. Oooooooā¦ As I have had these symptoms since I was at 100 lbs and less. But he is the mighty Oz and has someone else to get to. Shoe shoe out you go! I stopped him, and explained that his website specifically described their follow through with resources for Chiari patients. He stopped and said what can I do for you? You donāt need surgery, Iām a surgeon. I told him I was hoping he could give me referrals for pain, dentist, acupuncture. SOMETHING. He said he liked his dentist real well would I like his number? I could go on and on. I wanted to walk out and demand not to be charged for such poor service, andā¦no one was there. Had to track down someone to let us out the door. Had to go back later to pick up scans because she couldnāt do it.
This site reminds me to fight. To live, and to love. And try to keep the frustration level to a dull roar.
So for those of you who think this guy in Denver is the best ? Maybe on his best day he is. But not last Friday. He made me feel just like all of you have felt.
And my journey marches forward. Just slowly.
Soup, Iām so sorry you had such a bum appointment. That can really take the wind out of a persons sails. But you have the right mantra - moving forward. Youāll find the right NS who will validate you.
Jenn
soup said:
I finally got to see the wonderful Dr that has gotten so much praise here in Colorado. Maybe he's right. Maybe I need a cine MRI to fully evaluate my case. ( took hours out of my days to supply him with all medical records and MRIs cine included). He could have taken the time to actually read the records before giving me his precious fifteen minutes to tell me all of my symptoms are not chiari related. He referred me to dr for symptoms that I do not have. And told me my weight is what's the possible cause. Ooooooo........ As I have had these symptoms since I was at 100 lbs and less. But he is the mighty Oz and has someone else to get to. Shoe shoe out you go! I stopped him, and explained that his website specifically described their follow through with resources for Chiari patients. He stopped and said what can I do for you? You don't need surgery, I'm a surgeon. I told him I was hoping he could give me referrals for pain, dentist, acupuncture. SOMETHING. He said he liked his dentist real well would I like his number? I could go on and on. I wanted to walk out and demand not to be charged for such poor service, and.....no one was there. Had to track down someone to let us out the door. Had to go back later to pick up scans because she couldn't do it.
This site reminds me to fight. To live, and to love. And try to keep the frustration level to a dull roar.
So for those of you who think this guy in Denver is the best ? Maybe on his best day he is. But not last Friday. He made me feel just like all of you have felt.
And my journey marches forward. Just slowly. :)
I am so, so sorry to hear this appointment went badly. With so much riding on what that one doctor says, it is awful to be dismissed like that. Shame on him for suggesting your suffering has anything to do with weight. Shame on doctors for suggesting that because you don't fit some image that they have in their minds, you don't deserve to be heard and given care or that you don't know your body better than they ever could. This makes me so angry. I cannot imagine what that might have been like for you to hear.
Good for you for picking up and moving on. It is easy to say, pay no attention to the man behind the curtain but I know it is much, much harder to do. Take good care of yourself and make sure you acknowledge your right to be upset. You went on the journey you were sent on and came to him expecting results. Even Dorothy's righteous indignation would be stirred by this. (I love a good metaphor). Keep moving forward, he's not the only wizard and he has no right to treat you like this at all.I don't care how great he is on a good day.
I hope you have some good people around you to bolster you back up. Keep on traveling. The answer is there.
soup said:
I finally got to see the wonderful Dr that has gotten so much praise here in Colorado. Maybe he's right. Maybe I need a cine MRI to fully evaluate my case. ( took hours out of my days to supply him with all medical records and MRIs cine included). He could have taken the time to actually read the records before giving me his precious fifteen minutes to tell me all of my symptoms are not chiari related. He referred me to dr for symptoms that I do not have. And told me my weight is what's the possible cause. Ooooooo........ As I have had these symptoms since I was at 100 lbs and less. But he is the mighty Oz and has someone else to get to. Shoe shoe out you go! I stopped him, and explained that his website specifically described their follow through with resources for Chiari patients. He stopped and said what can I do for you? You don't need surgery, I'm a surgeon. I told him I was hoping he could give me referrals for pain, dentist, acupuncture. SOMETHING. He said he liked his dentist real well would I like his number? I could go on and on. I wanted to walk out and demand not to be charged for such poor service, and.....no one was there. Had to track down someone to let us out the door. Had to go back later to pick up scans because she couldn't do it.
This site reminds me to fight. To live, and to love. And try to keep the frustration level to a dull roar.
So for those of you who think this guy in Denver is the best ? Maybe on his best day he is. But not last Friday. He made me feel just like all of you have felt.
And my journey marches forward. Just slowly. :)
I love you guys! Thanks, I needed that. XXOO!
Iāve never felt both so incredibly relieved (due to people experiencing the same horrible treatment) and so frustrated, I canāt understand how so many people with such similar symptoms and experiences are STILL ignored, i mean, Iām no doctor but surely the fact that so many people are saying the same thing and begging to be taken seriously warrants some kind of research or some questions to be asked, I canāt understand how this is still not taken seriouslyā¦ These past few years have stolen my quality of life, so many people have dropped away because they have gotten bored with āI canāt go I can barely moveā or āI canāt drink Iām on medicationā I never for a minute thought that my accident would result in this even nearly three years later, Iām a shadow of what I used to be and every time I get the the dismissive treatment by the doctors a little more hope is extinguished, every doctor says different things and always speak in that medical jargon designed to remind you that youāre not quite as bright as they are. Iām sorry for my rant but things are tough lately with so many things being said and so many doctors telling me opposite thingsā¦ The other day after paying 150 euro I was told in a dismissive tone that ādoctors differ and patients sufferā Which, to be quite frank, was something I could have told him but at the end of the appointment I was DELIGHTED when the patronising sweetheart doc told me āwell at least youāre looking well!!ā End rant 
sorry again X
Hang in there Oof!
You have no idea how often your response has popped into my head the last few days when I really needed it :) Thank you Xx
jcdemar said:
Hang in there Oof!