Not happy!

[cyberpyxi]

I am absolutely fuming, my friends. Fuming!
So I've done various MRIs, CINE, etc. We know I have chiari's, and though there is a small variation on the size of herniation, everything has been very consistent. I've got a doctor I'm comfortable with, and am working on meds right now until I see my Neurologist again in 2 weeks, when we discuss surgery again.
And I asked my PHP to script me a cervical spine MRI, to make sure I don't have syringomyalia. My PHP wrote the order, and I went to a new radiology company than I've been to before. That was my first mistake.
So I got my CS MRI, and had a aweful experience while I was there (it was freezing outside, and the heater was broke... they were 1.5 hours behind schedule), but the worst was the results I just got.
A week after my visit, I called in and asked my PHP for the results, and they said everything looks good. Yesterday, I was in the office and decided to go ahead and get a copy of my results for my file. Today, I read over them.

And it said that I have no Chiari's! It specifically says that my tonsils are not below my forum magnum! It has listed that the reason for my visit was to check for Chiari's, when it was supposed to say check for Syringomyalia, but whatever on that...

But it said I do NOT have Chiari's! When I verbalized my disbelief at what I was reading (while at work), my boss said Wow! That's great news!
But it's not. Not even close. I have my other scans. I've seen my Chiari's myself. My Neurologist and I have gone over my scans, I have the symptoms, the pains, the photographic evidence! But these people... uggg, I'm sure you understand my frustration.
So I call my doctor about it, no help. I call Tower Diagnosis, no help. Insurance company, no help. The best I got was from the doc saying that I need to get it reevaluated, there has been some recent "mis-readings" from Tower. But not only am I upset about them getting this so wrong, I'm afraid of what it's going to do to my insurance for future claims. Will they deny the surgery because I have one out of many results that say I haven't got ACM? Will I have to fight to prove otherwise? Will I have to pay out of pocket for another scan? My insurance company couldn't help... I asked them, and they said they were going to email me a link to answer my questions. Anyone want to guess what they sent me a link for? "What is Chiari's Malformation". Geezum Pete!
I'm sorry to vent like this, but I don't think anyone will understand my frustration like you guys will. Have any of you had something like this happen? What did it cause, if anything, with your insurance and doctors?
I feel silly being so upset about being given this diagnosis... I am not defined by my Chiari's, but I do feel explained by it, if that makes sense.
Ug, sorry again, for the length and whining. Sometimes, you just have to get it out.

[shanmomof3]

Hey cyberpyxi. I just wanted to let you know that i have NEVER been given the same result on an mri report. I had one report with 3.5mm Chiari, 2nd report said NO CHIARI!, 3rd report said mild tonsillar ectopia, and then 4 to 5mm herniation. It so happens that 4 different radiologists read those reports so there in my opinion is the biggest problem chiarians face is the differing opinions radiologists!!! Anyway dont worry about that one report because, in my case, it has not mattered to dr. Heffez or my insurance what those other reports said so you just dont worry about that one stupid report! (((HUGS))) Shannon

[*Stormy*]

Glad to hear you've still got the fight in you..... here to help anytime...

[cyberpyxi]

Thanks again, guys. I loved Selma's analagy... I have a 7mm herniation, and was really upset that they just didn't seem to see it, especially since I can see it myself when I review their MRI scan. I'm taking all of your advise, and just letting it be. I'm going to show the scans to the NS, and will continue asking my insurance to see if it will cause an issue with my surgery being covered down the line. If it is going to be a problem, then I will have to fight the results, otherwise, I know what's wrong with me, I KNOW I have chiari's, and how big the herniation is. I've had a CINE and know there is a blockage of CS Fluid, and that I have stenosis...
So I'm going to just let it go for now, and not stress over something that doesn't require me stressing over.

I love you guys. Thanks so much!

[mikeysmom1995]

Yea, what they all said is so true. I am fighting the same battle with my son. I have sent off his two conflicting MRI scans to a true specialist in Chicago, and still waiting for the results. Keep fighting, and find that true specialist that does not just look at the size, but rather takes all of your symptoms into account as well.
Hope you find someone to help soon.
Barb

[ChiariWolf]

Vent away my new friend! The medical community 'is' our best and worst friend. The screwups with Chiari treatment and dx are absolutely unbeliveable!

Just, please, remember to take a few deep breaths as another problem many of us have is that when we forget those deep breaths then we loose control and well those stupid symptoms [ u know, the ones we imagine :-\ ] well they tend to make us pay.

Yeah, I really do feel for you. Maybe one day we'll all get together and devise a jerk-destruct button that forces radiologists and Drs to do their research before this world full of 'incidental findings' pushes the button on them. :-) Belive it or not... after a while reading the vents of others such as your own, even though you feel for the person having the problems that caused the vent, well they tend to have a calming form of validation in them as we deal with our own trials. So please, don't feel bad, better use this outlet than your family or close friends who really won't understand even though they may want to, they just can't.

Wolf

[selmaS]

it's best to vent here where someone will understand and u don't have to worry that who u r talking to is not really listening.....


And MH is here to give us this outlet........so vent away : )

"selma"

[cyberpyxi]

Thank you Selma and CMoeller...
Selma, I love the pear analogy. That absolutely makes sense. And yes, it does make me feel validated. Before, I just thought there was something wrong with me mentally, because I couldn't shake my "hypochondriac" like problems. I was the only one that really knew there was something wrong, everyone else just thought I was tired, and needed more sleep. Oh, you're okay... just try to get a little more rest. And all the while, I was in all that pain, no one could see but it was there.

CMoeller... I can absolutely understand your being upset about that. I recall right before my ACM diagnosis, they thought I had a thyroid problem. When I was told I didn't, I was almost frozen... I had worked it up in my mind that it fit some of my problems, and that was good enough (some explanation is better than thinking I'm crazy). But after the initial shock (and learning curve) of the Chiari's dx, I felt like a huge weight had been lifted. And when I found MedHelp, and people like me here...

You guys make me feel strong! I don't know you from Adam, as my mom used to say... but you give me the strength that no one else can! And while I hate posting a whine session... I am so glad you are here to push me past it. Thanks guys!

[selmaS]

Hi... take a deep breathe and relax.....u said u used a different facility...In doing that the magnification could be diff for one...and if the slices r set up diff that can make it appear smaller or they may not see it at all, but this can happen and if u r with drs not that familiar they would not know to have the same machine do all the MRI's.

I understand y u r so upset..to have chiari  finally dx'd we r validated, not making it up, there is a reason we feel like we do.....and it is important, so to take it away is a slap in the face.

Imagine an upside down pear.....if u cut it in half and  then in quarters...so if u look at the middle 1/2 section u have a lg herniation...however if u look at the outer 1/4 slice it could appear smaller or non existent.

[*Stormy*]

That is just too crazy, I can't understand it other than to say that you had someone that just doesn't know what to look for. I wonder if it is one of those things where they will only say it's Chiari if it is below my a certain measurement? Some DR's are in that old way of thinking even though it's been proven that the size doesn't necessarily matter.  

I understand how you feel...when I was first scanned it was for MS as that's what everyone thought I had b/c of my legs. When they told me that it came out normal (the chiari was ignored) everyone thought I should be happy but I wasn't. How can you be happy when  you are having all this craziness and you thought you would have an explaination and then it's been taken away? For me knowing was better than not b/c I was 100% sure that something was wrong.

Take heart, fight the battle! From all the symptoms you have listed on this forum, it has got to be it. I sending strength your way :)

[cyberpyxi]

and I'd like to add, when I got home, I looked over my CD of slides from this MRI, and I could see the ACM! I have no idea how they could miss it, when they are looking specifically for it. It would be one thing for them to miss it if I didn't have it on the order paper... but for them to be looking for it and not see it is too much!