Can Chiari be overlooked on multiple MRIs? Could this be CM??PLS HELP

[tnusokr14]

Could this be CM?? Pls bare with me as I explain...I was dgnsd w/a pituitary tumor in jan08. BC it is so "small" my NS is playing the watch & wait game. Honestly, i'm not worried at all about the pit tumor bc I know deep down that this is not the cause to all my health problems. Not to mention all but one of my labs came back great when I visited the Pituitary Center at Vandy in Nashville. Altho this finding was found accidentally, noone has given me any explanation as to why I was initially getting my brain MRI's in the first place! Go figure, right?

I was first sent to get a brain MRI to look for possible MS. I initially started this fight almost 2 yrs ago when I experienced a sharp tingling "bolt" go from the back of my neck to the tips of my fingers causing temp numbess. Luckily I was able to pull to the side of the road & wait 4it to "wear off" - I was driving a manual car! I have had a total of 4 brain MRIs and 1 on my neck all last year.  Im 25, work a demanding gov't job,a wife&mother to a 3 yr  boy. My life is VERY active& I always have been - i've been an athlete my entire life, even played college soccer 4yrs. I experienced a bad head injury my last (senior)college soccer game in Nov'04. I had a bad concussion & strained/pulled few things in my neck (I had received an elbow blow to the back/base of my head, behind my L ear). For as long as I can rem i've always had minor headaches, but after this injury they intensified. Adding to that, after my son was born (i had a very long and intense labor) - everything spiraled out of control & my headaches, dizziness, confusion etc became excruciating..

Ok i'm getting to the point...I stumbled across a show on DiscHlth Channel a few wks ago where this girl was dgnsd with Chiari after she began experiencing strange symptoms 2 yrs after she had her son. From her story, it felt as tho she was telling mine! it was crazy. i had never heard of CM until then, but i rem running to my purse to find pen/paper to make note. after I did a little research on CM it brought tears to my eyes bc it fits me almost to the tee. The ONLY thing I cannot find a fit for is ive had (4) flare ups this past yr w/UVEITIS. Once again, I have no answers for this as well. My headache clinic in N. AL dgnsd me w/ OCCIPITAL NEURALGIA last yr as well. I found on a couple sites about CM where it has happened that someone has been diagnosed with OccNeuralgia instead of CM… unsure if this is close to the truth or not tho. I have been healthy my entire life and I feel like NOT 1 DOCTOR is taking me seriously. They've always summed it up to "stress" or "just having a baby" (3.5 yrs ago?)- or even better, pushed me aside to another doctor for different tests and then never hear from them again....  

Here are some of the symptoms I have. I am not sure if all of these could be related to CM:
throbbing/sharp/intense/constant headaches in the back/base of my head
BURNING neck& shoulder pain/stiffness
confusion
memory loss (I have to use sticky notes or my cell to rem anything, even important things. I even forget where I just set my cell phone, or "did I turn that light on?" )
constant lump feeling in my throat (esp feel it when i swallow)
see spots (esp when driving at night) & blurry/double vision (ex: I have 2 comp screens in my office and more often then not if I look from one screen to the other I have to close my eyes real tight and make myself try to refocus bc everything is so blurry- same goes with the TV)
DIZZINESS
muscle weakness (I struggle with lifting my 3 yr old and use the elevator at work bc my legs are so heavy)
stiff/tingly fingers
random extreme knee pain (have never had knee problems thru out my athletic career)
frequent urination (esp at night)
no sex drive
weight loss
night sweats
shooting tingly pain on my jaw line (esp when it is touched and on my R side)
hair loss/dry skin/acne
struggle w/ my words being slurred or stuttered when I speak (I always joke about it) or I cant put my thoughts into words (guess this goes with confusion)....

Sadly, this is not all my symptoms… its alot of small things that add up to bigger things that many doctors just take with a grain of salt. I have no idea if some or all of these could be related. I really dont care, all I want is some answers...I have learned that even the smallest thing could be the missing "key" in diagnosis...but trust me, I am NOT a hypochondriac. If anything, I despise going to the doctor. =D

I guess my main question is: CAN CHIARI BE EASILY OVERLOOKED ON MRI's? EVEN MULTIPLE TIMES? EVEN BY A RADIOLOGIST, NEUROLOGIST & NS?  I have gotten copies of all but one of my MRI reports and none of them state anything regarding to Chiari (they do state something about my basal ganglion, sorry IDR)... each scan they were looking for something specific (2 were re-scans after the pit dgnsis bc the first films werent cut thin enough to see the tumor clearly & one of those was at Vandy. Another scan was 4mths ago for a follow up on my pit tum) I desperately need answers bc I am in struggle 24/7 and am in terrible pain on a daily basis.

Any tips for me? sorry for the long post and thanks for reading it this far.
Its very much appreciated.

[selmaS]

Hi and welcome to the chiari forum.

Most of us were told it is all in our heads....and guess what ...they r right...just not the way they implied!!

I was told to take prozac....as many other were...we get dismissed and told u don't have it...it is the drs opinion that u don't have chiari...I am sure it is visable on the MRI....they just do not feel it isi an issue.

I saw a NS who told me the same thing...U do not have this....ur problem is the stinosis and DDD....well I am having the decompression surgery next week and was told by specialists that my chiari is severe becuz of the overcrowding and block of CSF flow......

U need to get to a chiari specialist and then go from there.

I hope u continue to post ur questions and concerns and share ur chiari experiences with us!!!

"selma"

[shanra]

I'm new here...after reading your story I had to join in on this. I do have CM...I was diagnosed over a year and a half ago but it seems that nobody understands or can relate to me. My PCP didn't even know that my neurologist had found this and diagnosed me...I guess I forgot to tell him. Maybe its because he thinks I'm a hypochondriac and never listens to anything I say!!! I think my neurologist is clueless as well but he keeps seeing me for the money...especially since he sees me for 2 minutes and says I'll see you again in a month or two. Doctors for the most part are quacks...I'm just stating the facts about the docs around here, at least the ones I see. It becomes VERY discouraging to say the least!!! I can relate to every one of your symptoms...a few of them I knew were caused by the CM but most I have been told were caused by depression or anxiety, bi-polor disorder, ADD; You name it...I've been diagnosed. I hate it for you not knowing whats going on, I hate it for myself that I have allowed everyone in my life to blame it on Mental Disorders, especially since I've tried to educate my friends and my family about CM and DDD but they just don't get it. I have felt so alone lately...I have been staying up for hours upon hours reading and searching for something, really anything to reassure me that I'm not crazy and I'm not alone. I relate too with being a mom and struggling...I just had a baby in FEB...she's almost 4 months old and I feel like I'm 87!!! I also had an incident on March 14 where I don't remember much of anything...My mom woke me up at 9:30am I was lying on the kitchen floor...the last thing I do remember is being on the computer around 1:30am...Then just black!!! I had fallen somehow...I only know that because my knee looked like someone had hit me with a ball-bat, I had a knot on my forehead with a bruise, a knot on the back of my head...Kinda STRANGE but it's happened before so my husband and the rest of my family didn't seem at all concerned, They just left me to take care of the baby...No Doctor...Nothing!!! I wasn't myself, at all!!! I"m still not right...the last 5 or 6 weeks has been a blur but I can't convince anyone that it's abnormal to blackout, hit your head, not remember what has happened, to have knots and bruises on your body and HEAD (along with CM and DDD which they do know about but refuse to understand). I eventually drove myself to the doctor 2 weeks after hitting my head...since I was still feeling weird...and I got the same treatment there. I'm a crazy hypochondriac so I must be making this up or maybe my DOC thinks its ok for people to loose consciousness and feel strange for weeks after blacking out, bruising their head, so on and on and on it goes!!! I do hope that you figure out whats going on with you!!!  I will continue to pray and hope that one day my family and friends wake up and become concerned enough to learn signs and symptoms to watch out for in me. I really have gone on and on and probably around in circles but I'm just really relieved to know now that there are other people in the world that unfortunately, feel like I do.  Before I got off on my story I was trying to tell you that YES, CM CAN BE OVER LOOKED ON MRI. I know this because my PCP ordered an MRI of my c-spine w/o contrast and my CM did not show up. Really funny because the PCP only ordered the MRI after I tried talking with him about CM and he was like, "who told you that you have this condition?" Then the results come back and he says "the only thing wrong with you is DDD"  Thats another story that would keep me here for days...Right now I'm waiting for the PCP to get all of my records from my neurologist just so he can believe me, Remember I'm a hypochondriac!!!  Just know that you're not alone either, I know that now and the road ahead seems a little brighter. I really had given up on doctors...I know now that I just need to find the right Doc who will be smart enough to understand and relate, most importantly one that will listen and believe me!!!  You're right, You are too young to be like this and so am I...It has to get better...It has to!!!  GOOD LUCK with your journey to finding a diagnosis. Please keep posting as you find out more, afterall, your story is the one that touched me enough to share a little of my own!!!  I will keep you in my thoughts and prayers!!!  

[tnusokr14]

Thank you for the information. I will def look into getting in to see Dr Strickland. Baptist Hospital is where they treated me following my initial head injury. My follow up MRI at Baptist did pick up something, but I was young and stupid and didn't pay attention at the time. And now for the life of me, cannot remember what my doctor mentioned to me in his office. I know it wasn't anything serious at the time, but I remember him mentioning that someone needs to "keep an eye on this". This was in 2004, and now i'm trying to track down my files and the name of the doctor.

As for my previous MRI's - all of them (minus the one at vandy) were done at the same place, same radiologist. And only one of them(my very first one)-  was a scan in which they weren't looking for something in particular- my pit tumor (even the one at vandy was for this reason). BTW, i'm in the clear w/ my pit tumor now...nothin to worry about they say.

I kno i prob seem like a hypocondriac, but swear Im not. I just tired of dealing with all this and the longer I put off the tests, the more symptoms show up. And after looking a little at CM I saw that some of the symptoms I was experiencing could (for the first time) actually be related. As so many doctors have told me most of my symptoms do NOT go hand in hand (which they may not..who knows!). If its not one thing, its another for me. I struggle daily and I'm WAY to young (& used to be healthy) to be dealing with stuff like this.  The issue in hand for me is if I TRULY felt that my doctors did everything in their power to REALLY find out what was wrong, then I wouldn't be pressing this... but in reality these doctors were lazy and flat out didn't care. They pushed me off on other doctors & then wasn't their problem anymore. Eventually I hit a dead end and thats when i just dropped the doctor visits all together (6 mths ago)... during that 6 mths is when i came across CM. I've learned I have to be my own advocate. Not onlly for myself but for my son. BC I cant do most things with him that 99% of mothers my age can do. And its slowly catching up to me.

thanks again guys for all the information...
take care everyone.

[Shane99]

DDD is Degenerative Disc Disease. Fairly common among Chiari patients. As is Syringomyelia.

Your symptoms do sound like Chiari. It is possible to miss it on MRI's, but that many times seems unlikely. However, I'd recommend you having a Chiari Specialist Neurologist look at it.

If Nashville is your closest big town, see about getting your PCP to refer you to Dr. Gary Stickland at Baptist. He's my neurologist and he knows what to look for. If he finds anything, I recommend Dr. Carl Hampf as the neurosurgeon.

[tnusokr14]

I do not have very long to reply to your msg, but I will later on. I just wanted to note that I have had almost every hormone test that is possible due to my PitTumor. They tested my adrenal glands, thyroids, FSH, LH, cortisol, T3 & T4, ACTH... cant rem what else. My ACTH came back a little on the high side but after a more intense test it came back in the normal range. All of the testing was done at Vanderbilt.

What do you mean by DDD?

Thanks for taking the time to reply to my post. i'll be back on later to explain a little more. thanks again!


Danika

[chadry]

There a re a few things I wanted to suggest on your condition.
I am not sure if i read if you had a cervical MRI done because of the injury you had before. You could have issues with your discs or nerves in that area. They will really mess you up with all different kinds of things happening. I can relate to that with the DDD i have in my neck.
Also you may think about getting your hormones checked to see if they are all OK. I am saying that because of the night sweats. You go through so many different stages before menopause. Even though you are young you start to have changes. You would be surprised what that can cause. Forgetfulness and cofusion also. there is a good author out there about that and I believe her last name is nothrup. She has been on ophra a few times. I got one of her books and was so surprised when I seen what women experience. I kept thinking I have that and I have that and I would have never believed it was from hormones.
I hope you find that answers you are looking for and feel better.It is so hard to try and function when you are not right and feel horrible all the time. I have like I said DDD in my neck and low back and everyday I am not sure how I will feel when I wake up. I always feel so many different things going on. Everyone on here can relate to what you are going through trying to get a real diagnosis.
Take care
Chadry

[selmaS]

Yes, call the location of ur study and request both the MRI on disk and the report.Call ahead so they can get it ready.

I can relate to putting off going to drs...I did it for 2 yrs prior to my dx.....nad now it has been over a yr since my dx and I am going to drs and they can drive u nutz.....

Let this forum be ur support, that is why we r here.....

U r right...u have to be ur own advocate to get the right drs and treatment.

I would not say the radiologist misses a chiari dx.....it is more some only report on a condition that they were to look for....or consider it an incidential finding.Without the report it is diff to speculate.If u r going by what ur dr says, it could very well be on the report and the dr just feels it is not relevant.

I live in a relativly larger city and there r no drs here either.....depending on where u live, we may have a dr on the thread for chiari specialists...please do research on ne dr u choose to visit.


I hope I answered all ur questions...if not ask again

"selma"

[tnusokr14]

thank you for your reply. How do I get a copy of my most current MRI? do I go to the MRI place that I had it done at? Or do I go through to my NS. I received a copy to take to me to vandy, but dont rem how I got it...it has been about 6 mths since I last saw my NS. I was way too frustrated with all my doctors, tests, misdiagnosis' and run arounds that I have put off any and all dr's apps the last 5 mths... probably not the smartest idea, but I do not have a great support system and it truly was getting me depressed...

I am trying my best to stay optimistic from here on out and i've come to the realization that its up to me to fight for the answers until I get them.

Even if CM is not noted on my MRI reports, should I still see if I can find a C specialist to look at them?  Thats what I mean by, is it common that the radiologist misses chiari? Not to belittle anyone, but I live in a small town in North AL, so I am sure CM is not very common around here...

[selmaS]

HI and welcome to the chiari forum.

I am not sure when ur last MRI was, or what the intent findings were. Some radiologists report only on what they r looking for and then some will report chiari as an incidential finding. It could appear as low lying tonsils.

If u do not have the report, request it......if ur MRI was over a yr ago, u may want to have another one done, but make sure u get the copy of ur last one as well as the report.

Since I am not a dr, I can only guess that even tho the symptoms point to chiari, u will need the MRI to show it.

Maybe u can have a discussion with ur dr and ask that he rule it out.

I hope u keep us posted on what u find out.

"selma"