Stress and psychological problems?

Hi I'm new here but I have been reading entries in this forum for a few months and truly believe it is the only reason I have had the energy to keep going to find help.  I would like to tell my story (I hope it isn't too long).

In 2008 it was briefly mentioned to me after an MRI to rule out MS that I also had a 9mm Chiari I malformation.  I was told by my MD that they cause no symptoms and that my problem couldn't be from that.  He also told me there was no need to send me to a neuro because they don't treat Chiari because they also don't really think they are symptomatic. I had been diagnosed in 2001 with Fibromyalgia but my symptoms kept worsening and I didn't know anyone else that had Fibro and were experiencing my problems.  I began having crashing headaches, became extremely sun sensitive, dizziness, balance problems, joint pain instead of muscle pain, neck pain and crunching noises, slurred or garbled speech, confusion, lack of concentration, hands and feet numb or extremely cold, plus mayn other problems.  I just felt sick all over, lost 35 lbs, broke out in a horrible rash for over a year. My doctor tested me for everything plus sent me to rheumatologists, neurologists, and immunologist.  I had another MRI in June of 2009 due to this crunching in my neck and feeling like my brain was boiling.  Again the only thing showed up was the Chiari I.  The MD said it was still 9mm and that wasn't causing my problems .He had recommended that I go to a well known specialty Clinic, telling me he didn't know what was wrong with me and I could find answers there.  My husband had accompanied me to this visit with MD because I was having weakness and dizziness and he was worried. After this visit my husband uncharacteristically turned to me and said he didn't want me to go back to my MD because he felt he was blowing me off and didn't believe me. I just gave up and again quit looking for answers for months.  I began having seizure like episodes due to a horrible pressure on the top of my head. I finally decided to go to the Clinic in January 2010 because my symptoms continue to worsen.  I went back to the MD to get records and talk to him about going to the Clinic. I discovered after picking up my records that the MD had written in my permanent medical records on my last visit to him that I had a conversion disorder. This devastated me!  After a lot of tears, I again rose from the pit and decided that it is either find answers for myself or live in this condition that continues to worsen.  I had been reading about Chiari malformations and then knew without a shadow of a doubt this had to be my problem.  The Clinic set my initial appointment up with an epiletologist to determine if this was also epilepsy.  The neuro said he flet these symptoms were from the Chiari, FINALLY!  They set me up for what I understood was going to be an epilepsy and Chiari evaluation that would keep me there for a week.  Instead it was an epilepsy only evaluation (video EEG) which they determined within 24 hrs that there wans't any seizure activity going on in my brain.  Good!  However, since a video EEG required you to remain totally in bed, only to get up with a nurses assistance to go to the bathroom, I felt it in no way was any indicator of my symptoms.  I was not given a neuro exam while standing or walking ( which is when my dizziness and balance issues are of course the worse).  After observing me and seeing the "spasms" I have, the neuro, who by his own admission is not a chiari specialist, determined my symptoms were not from the Chiari malformation, but from stressors and that I have a Conversion disorder. Another blow!  I am convinced his decision was influenced by my MD's records, but I am so humiliated and upset that they will not recognize Chiari malformation.  I am also very disappointed that this doctor is a neuro at the Clinic where I had put a lot of hope in finding help.  

To sum it all up (finally), I requested that I still be given another MRI since it had been almost a year and that this time it be a cine flow MRI which I had read it needs to be to determine whether or not there is a syrinx.  He agreed that was reasonable but again said the Chiari wasn't causing it.  He also agreede for me to see a neuro in the headache clinic the day after my MRI.  My MRI came back that within 10 months my Chiari had gone from 9mm to 11mm.  The neuro at the headache clinic said I had to see a neurosurgeon!  He did noat tell us about the cine flow even after asking him, he wanted the neurosurgeon to assess it and tell us his opinion.
Has anyone out there with Chiari ever been told you have a conversion disorder rather than doctors recognizing the Chiari does cause symptoms?????

[shanmomof3]

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

[cyberpyxi]

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

[*Stormy*]

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

[rod44]

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

[northernstarmn]

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

[northernstarmn]

oops sorry i meant to leave the TO: part open

it would be so nice if we could edit our posts..lol

[*Stormy*]

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!!

[bbisweary]

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?  

[rod44]

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  

[selmaS]

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"