Queen_Vic,
It is sad how many of us have had our pain and other symptoms blown off by inexperienced doctors. Most doctors know very little, if any, about Chiari. It’s sad, but true. That’s why it’s so important that we learn as much as we can. We need to be our own advocate. I’m glad that you finally found a doctor that listened.
Crystal
when the doc told me itwas the biggest shock of my life, so when i told people what was wrong and what they were going to do nearley everyone said WOW YOU HAVE A BRAIN AND EVERY STUPID THING YOU HAVE DONE YOU NOW HAVE AN EXCUSE OR 2 EXCUSES NOT JUST BECAUSE YOU ARE BLONDE. At first i laughed with them in private i was hurting that they all thought it was funny and did'nt understand. 13 year on I NOW LAUGH WITH THEM and i make jokes as well, like " i need that like a hole in the head" and i reply back with "O i have a hole in my head. I still have a hole in my scull that hs not compleaty closed so my party piece is you can feel my brain pulseing.
Before I was diagnosed one doctor said to me that i was feeling weird stinging pains because i was interpreting my bodies nervous signals wrongly-that doesn't even make any sense XD surely noone should feel nervous signals being transmitted in the first place,let alone interpret them!
Another said my pains might be a dental problem and so I got fitted with a mouth guard to wear at night which achieved nothing other than making me look kinda stupid.
And countless doctors said it was because im anxious,shy,stressed etc etc
Marcella- I find that humor helps me to deal with this. We have a lot to worry and stress about, so laughing can be a great release. I can see that you’re the same way;)
Becki- Hmmm…So, dizziness/vertigo can make you forget how to talk?! I had no idea…lol:) The things that people come up with sometimes baffles me.
Shygirl- Hmmm…So, we’re interpretting the signals wrong?! It MUST all be in our head! It makes me so mad when they say it’s all in our head and we must be doing something wrong. I hope you found a new doctor.
Crystal
I can’t even begin to describe the ridiculous things I’ve been told but th mist recent was by a Dr in the ER and she said “I mean it’s a Chiari. Take some Tylenol or Aleive if you feel pain”. That was the understatement of the year! Lol!!! When do I NOT feel pain? And Tylenol and Aleive to relieve significant pain? She might as well said “I mean it’s just a diet! Eat nothing but McDonalds and supersize the value meal for every meal of the day and you’ll be dropping weight like that!”. 
Where to begin.....I have had so many people say so many stupid things over the years.
Pre-Diagnosis..
My first doctor that I saw for about a year and a half was a regular MD Excersize Physiologist. He was frustrated that I was getting worse and accused me of being lazy, lying hypercondriac (standard fair after this but the first at the time) and then he fired me/quit being my doctor. The last thing he said to me was "Wendy,I can't help you unless you help yourself. You need to look deep within yourself and figure out why this persists and why your not getting better" I cried for days and it took me many months to find my next doctor.....
My next doctor was a primary care. I also saw her for about a year and a half and I was getting worse. She was also our family doctor. I was experiencing all the weird pressure symptoms associated with Chiari but I didn't have a diagnosis yet. I was relieved because she never accused me of being lazy, hypercondriac ect..and she listened and seemed to believe me and ordered tests and advice for some of my symptoms (but not a MRI) Anyway she got pregnant with her second child and decided to become a stay at home mom. My last appointment I was upset because I was going to have to find another doctor. She sat down with me and told me what she had apparently been holding back and now felt comfortable saying to me. She told me "I should find another hobby rather than visiting doctors and therapists for attention" and that "I should go on dates with my husband, like go out for pizza" Pizza with my husband??? What? I can laugh now but it was crushing at the time. The great thing was that I was diagnosed a few days before she left and I wrote her a note and told her so she finally knew I wasn't lying.
Post diagnosis/decompression...
I had "Fibromialgia on my left side only" I had a neurologist tell me very recently that "I didn't have Chiari anymore because I had the surgery" and that my symptoms "Sounded like Chiari symptoms but that was impossible because I was fixed" And this was after my Cine MRI that shows a complete block of CSF at C2 and a big egg size sack of fluid where my patch is.
My current physical therapists was horrified when I told her some of this stuff when I first started seeing her. She a brilliant and compassionate woman and she said....
"Wendy when they couldn't make your pain/symptoms go away they just wanted you to go away and they would say what ever it took to make that happen" It was a lightbulb moment for me.
SoonToBeRN- I wish it was that easy! It is JUST Chiari after all…lol. If it was them or one of their loved ones going through this, I bet they wouldn’t say it’s JUST Chiari.
Wendyanne- Wow…What jerks! This is a “hobby”…seriously?! I’ve gone out for pizza and it has never helped my pain or other symptoms…that’s joke! The surgery is a treatment for Chiari…NOT a cure. That NL obviously has no idea what he’s talking about. I’m glad that you found such a good Physical Therapist:) She is absolutely right…when some doctors don’t know how to fix or help us, they do want to just get rid of us…they will say some pretty mean things to accomplish this.
Thank you both for sharing your stories:)
NL last week on the phone (i put in an emergency call b/c my headache was soooo awful, this guy was a fill in for my doc whom was on vacation...
NL: "sounds of typical migraines" Me: "no, been there, that's not JUST it." NL: "o well then, sounds typical of 'rebound' headaches..." Me: "really? 1 excedrin to try to take the edge off and an advil allergy is going to put a grown woman into the distress of rebound headaches, are you kidding me?!" NL: " Well, sounds typical of a chiari-headache, and your other symptoms also, but I don't think that's what this is..." ME: "Nevermind doc, I'll be interviewing all of my doc's in the future thanks to you!" End of call.
Hi,
I was just reading this and can absolutely relate... my NS told me on 3/14/12 that same thing. I asked about CINE from these posts and he said," I can see the CSF on your MRI, I can guarantee these things are not from Chiari, although they all seem to match up. Maybe you have carpel tunnel or something like that. Good luck." He repeated himself a couple times when I added questions to the end of the visit. After the 3repetitive mumble, I said, "you know if you docs would realize that MOST people w/ Chiari ARE symptomatic maybe we could get some recognition and HELP!!! you all just tell us it's not related! There has to be a reason this is less diagnosed than MS.The statistics are more than DOUBLE!!! Have any of you or your associates visited one of the sights and read any of the posts?! There are thousands of people who are on there begging to be acknowledged and helped. " then I left the office crying and having my mom trying to reassure me that I'm not crazy and these things are not just in my head. I thank God for her.
Thanks for the story! Glad we can relate.
Kathleen
Diane John Jr Oliver said:
Lori, thanks for replying! Yes I saw Dr Menesez, he is our specialist here in Iowa, I kinda felt like he wasn't up to date on the research but I'm not a ns so I didn't argue. I knew Chiari could get worse but I didn't know tht bout the cine MRI? He said I had plenty of fluid in my brain so he could not help me. I have looked at everyone else's symptoms and what I don't know I ask but I don't understand why everyone is trying to find something else wrong with me, my symptoms fit Chiari to a t. If they can't fix it, fine, but stop making me feel insane, you know what I mean? I'm sure u do! Well thank u again, always so much help on here, I seriously feel better as a person since I've joined this group!
Katcap,
It amazes me how often I hear this…“Your pain/symptoms sound like Chiari, but that can’t be what it is.” So…It’s more likely to be something else, even though the symptoms don’t sound right for that?! It drives me bonkers! I hope you don’t ever have to deal with that NL again…He obviously has no idea what he’s talking about.
Crystal
When all your symptoms are neurological, and your brain is the main switch for all your neurological functions....and your brain is in your spine....yet no one wants to connect the dots. That really bothers me. Really, really bothers me. Or they try to make you feel like you are crazy. Arrrggghhh!
"It's all in Your Head" tells the story of just that.....doctors who don't want to listen, believe, or treat, and what can go wrong....including developing a Chiari Malformation.
crystal, its my sense of humour that keeps going, i have to say reading all these replys i am so glad my n-s knows what he is talking about he is fantastic. I did'nt have to go through what some of these poor people have gone through. But if i had gone through the national health then that would have been a different story. When i was young i used to ask my mum if she had double vision like i did, no. She was always telling me to walk straight i now know there was never a chance of that with scolliosis.lol. But now i have deggenerative disc disease, so doing all the athletics, swimming and gynastics are all comeing to haunt me at 52, my doc tells me i am young to have that.
Crystal said:
Marcella- I find that humor helps me to deal with this. We have a lot to worry and stress about, so laughing can be a great release. I can see that you're the same way;)
Becki- Hmmm...So, dizziness/vertigo can make you forget how to talk?! I had no idea...lol:) The things that people come up with sometimes baffles me.
Shygirl- Hmmm...So, we're interpretting the signals wrong?! It MUST all be in our head! It makes me so mad when they say it's all in our head and we must be doing something wrong. I hope you found a new doctor.
Crystal
An ENT told me I needed to see a psychiatrist & suggested an Inpatient stay might be needed.(My NS wrote the ENT a letter explaining CM & Geniculate Neuralgia ) That there was nothing wrong with me. The strangest thing that has ever happened to me was.....I went to see an 80 year old Chiropractor that went into a trance and "Channeled" dead surgeons that supposedly did psychic surgery on me. In all reality he did a cranial sacrial (SP) and I almost died......I had no idea what he was going to do, I wasn't even diagnosed yet. My daughter was in the room with me and she was about to die laughing.. He was playing american indian chants.....very different .....indeed !!!!
It's hard enough when friends and family don't understand or believe...but when your doctor doesn't??
Read my story, "It's all in Your Head," and is now available on Amazon, through Barnes and Noble and through other stores where you can get books. It tells my story of what I went through after being diagnosed with a rare brain cyst and doctors not only not believing and listening to me, but doing nothing to treat me. After I finally received treatment, brain surgery then a scond to get a shunt, yet another doctor did not believe or listen to me. His lack of care, treatment etc., caused even more horrific medical problems and conditions....all of these, I still live with.
You can read my story....read about my battle to get treatment, then to regain some sort of life, in my book, It's all in Your Head, which is now available through Barnes and Noble, Amazon, and anywhere you buy books. This is a link to Amazon....http://www.amazon.com/Its-Your-Head-Maria-McCutchen/dp/1613460716/ref=sr_1_1?s=books&ie=UTF8&qid=1333194116&sr=1-1
Get it for yourself ore anyone you know who needs encouragment. It doesn't matter if it's not a brain issue they live with....my story will touch anyone.
sorry I answered twice.....
TracyZ said:
An ENT told me I needed to see a psychiatrist & suggested an Inpatient stay might be needed.(My NS wrote the ENT a letter explaining CM & Geniculate Neuralgia ) That there was nothing wrong with me. The strangest thing that has ever happened to me was.....I went to see an 80 year old Chiropractor that went into a trance and "Channeled" dead surgeons that supposedly did psychic surgery on me. In all reality he did a cranial sacrial (SP) and I almost died......I had no idea what he was going to do, I wasn't even diagnosed yet. My daughter was in the room with me and she was about to die laughing.. He was playing american indian chants.....very different .....indeed !!!!
I was referred to a NL because of trigeminal neuralgia, migraines, and dizziness. My migraines use to come and go and one day they came and stayed for over two months straight. The NL reviewed my MRI and drew a cartoon picture of the Chiari and said it wasn't symptomatic? He then wanted to put me on Topamax for the migraines. I asked him what part of my symptoms were not symptomatic?
TracyZ- He channeled dead surgeons…seriously?! And…you’re the one that needs to be locked up?! Wow…I think that just may be the craziest thing I’ve heard yet!
Twitch- All of your symptoms are caused by high or low blood sugar?! That makes sense…NOT! I hope you have a better NL now.
Mbrantl- Exactly! If we’re not symptomatic, then why do we have all these symptoms?! I hope you found a better NL.