Hi bb and welcome to the forum! Most of us have been told for years that it was depression or "all in our heads" which it is but not the way they mean lol I was also told it might be fibro, which its not. What you have to understand is that most drs (even NL and NS) are using material about chiari from a 20 year old book. For pcp's it was about a paragraph long and that is all they know about it! Thats why it is SO important to go to a Chiari Specialist! Please feel free to ask questions, i know i'm forgetting something lol but i'm sure one of the others will answer too. Blessings ~ Shannon
You are not crazy, making it up, and you do not have hysteria! Honey, I don't know what state you are in, but find a Chiari's Specialist right now! We have a thread that lists specialists in most states... My doc also said "I don't know what this is" talking about my radiologist's mention of Chiaris "but it's not what is causing your problems". He was good, though, and let me have a few other types of MRIs to see what else we could see (looking for syringomyalia). He then sent me to a Neurologist, who admitted he wasn't really familiar with Chiari's, but said he's willing to research and learn. On my last visit with him, he got his God complex back up and said Chiari was not causing my problems. He, too, indicated stress as my only problem.
Then I found a real doctor/Neurosurgeon. He's very knowledgeable about ACM, has had many patients with ACM, and scheduled me for the surgery, calling my other doctors a very nice word for jackasses (can't recall him nice word, but I remember I giggled when he said it, knowing what he meant to say). His partner NS has over 30 years of ACM experience...
Point is, many doctors will tell you many things... and if you don't like the way they're handling you, find a new doc!
Most of us here have been told it's all in our head (lol), and have been misdiagnosed for years before finding that one good doctor that knows ACM, the signs, and how to treat us... emotionally as well as physically.
Good luck to you, and let us know what we can do to help!
Ambyr
Hello and Welcome, I am so glad you found us!
As I read your story I was so amazed...I could have basically been reading my own!! I went through almost EXACTLY what you have!!
I went to my PCP for several years complaining that things were not right...and I kept being pushed away again and again. It's funny my husband said exactly the same thing yours did. All of a sudden my symptoms snowballed really quickly and started to affect my gait...that is the only time I got some notice. I finally got sent to a NL and had an MRI, the chiari was ingnored by the radiologist and the NL so I had no idea that I even had it..the NL screwed me around for months as I kept getting worse and worse and then set me back to my PCP with a suggestion that it was "stress disorder". My PCP then agreed with that. Thankfully by that time I had met a NS through my husbands business and I had told my DR that I wanted to be referred to him. The NS had mentioned that Chiari to me at the first visit, then 3 days later he called me again and wanted to talk to me surgery. So I said to my dr..how can you think it is stress disorder when I have a NS calling me in to discuss surgery?? She didn't have an answer to that so I basically told her that I was done with her for now and that I was going to pursue the path that my NS is suggesting. STILL, my NL would not admit that this could be causing my symptoms...so I fired him..lol. Anyhow, before this becomes a ramble on...I had the surgery and immediately saw some improvements. After getting the dx and looking at the symptoms..I was amazed..it explained everything I had gone through!
I wouldn't wish that feeling of being told that it is psychological on my worst enemy...the shame, frustrationg and fear was almost too much to bear!! I am soooo glad that you are finally seeing some light at the end of this long, dark tunnel...Ambyr is right you need to get a Chiari specialist and you need to do it quickly!!!
Good luck, I wish you all the best, please let us know how the NS appt goes.
PS..my NS said that I was one of the LUCKY ones...most people even end up going for psychological assessment and everything before they finally get dx..he said the average time frame is 6 years!!!
Carolyn
Hi and welcome, as Shannon, Ambyr & Carolyn have said we all have had the "it's all in your head" DX. I can identify with your frustration, I was DX and treated for an inner ear problem for a few years before I got my DX of CM & a Syrinx.
You should get a NS with experience of CM. You should have a full spinal MRI with/without contrast to rule out a Syrinx or other CM related conditions, A CINI MRI to check the flow of CSF as CM can obstruct this.
Most doctors that I have dealt with to date dont understand CM, for me knowledge is power, understanding my illness has helped me to decide what is the best way to move forward so I would say learn as much as you can about CM so you can make an informed decision on your treatment, you will then know that it is not all in your mind and you are not crazy.
Ray
yep the run around seems pretty typical, too many know far less then they should..
hang in there i hope your NS apt goes well, and you finally get someone who says "this is classic chiari" and who actually knows what they are talking about..Have you thought about seeing a specializing NS?
Carolyn- 6yrs WOW Iam so glad it didnt take 6 yrs for me...thats just awful...I couldnt imagine going through what i was for 6 yrs.(I know so many do, but man just the though of that makes me angry!) My PCP flipped me to an ENT who Flipped me to an NS who said yes you have chiari,but call me when you can no longer breathe,& or swallow,then flipped me back to ENT who flipped me off to a Neurologist- who didnt believe at first all the issues were chiari related but later admitted (but wouldnt committ) it just might be, told me he was comfortable with me getting a 2nd opinion-which is when I found a NS specializing in Chiari
take care
oops sorry i meant to leave the TO: part open
it would be so nice if we could edit our posts..lol
Yeah I know..6 years...I was feeling pretty lucky just getting the run around for 9 months..isn't that stupid?? Makes me so angry too. Another woman that I heard about where I live was actually sent to EMI (a mental institute here) to be evaluated. I don't know what I would have done if that was me!! I spent most of this struggle trying to convince myself that I wasn't crazy and the other half wondering why the heck no one could figure it out when I could barely walk anymore!! Like I said..I wouldn't wish that feeling on anyone!! I think too in Canada (and it looks like Ireland too) there is a big problem with awareness...as in..there isn't any!!
Thank you all for the welcome and comments. I read these posts to my husband and it certainly made us both feel better about things. I am trying to get with a Chiari Specialist NS I read about in Cincinnati at the Mayfield Clinic. His name is Dr. Tew does anyone know him?
I am looking into finding an NS in the UK or Europe. We have only a handful of NS in the Country and finding one with experience here is slim. I also have problems getting a copy of my Medical Records witch is making the whole thing unbelievable frustrating....
Ray
Hi....I know I posted to this b4, seems it didn't register...but I have heard of Dr Tew...he has a good rep in the chiari circles.....but always research all drs to find the right dr for u.
I was never told about the conversion issues, but have heard others that were told that.....
Good luck with Dr Tew !!
"selma"
Hi BB. I truly feel for you. I gave recently been diagnosed with a "borderline" chiari malformation. I'm lucky that I have a wonderful doctor who had taken the time to thoroughly research this condition herself. Her explanation of the "symptoms" were a breath of fresh air as they were a vindication of over 40 years of scoffing and doubt over my "supposed symptoms". As a chill with crushing headaches and other "phantom" symptoms, my mother was told by a so called "specialist" that I should see a psychiatrist because it was all on my head. (How ironic that he was, in a way, right! The chiari IS in my head!) Anither do called specialist told my mother I was lying and I should get a good spanking! Can you believe it? Anyway, I've been told that my headaches, numbness in my leg and aching shoulders and back ARE symptoms of my BORDERLINE chiari. I can only sympathise with you, dear BBISWEARY, because I know the symptoms of a borderline case are hard to bear sometimes. Yours sound more than borderline. You hang in there and know that it's NOT in your head and the symptoms are real! I'll be praying for you BB! Take care!
Hi and welcome to the Chiari forum.
Since this is an older thread the member u addressed ur reply to may not longer be active on the forum. U can try to send them a private message that generate a e-mail informing them someone is trying to make contact.....
As for borderline Chiari....sorry I do not like that term...u have it or u do not...how it is affecting u is a different story.
May I ask what other testing have u had?...Did u have a CINE MRI?
Too many Drs may know something about Chiari, but not enuff, u need a true Chiari specialist to get one with experience to help guide u....see out list in the Health Pages.