MRI scan shows no detection

[mmv_811]

Hi, I'm hoping maybe someone can help point me in a direction.  When I was a young child I thought that constant headaches & pain were normal.  When I explained that to my mom at 7 years old she started taking me to doctors and eventually I was diagnosed with Chari Malformation (I was told Arnold Chari Malformation but I gather that it's the same) and sent home with a "goodbye, too bad it always hurts". My parents were not the most nurturing and weren't told to ever follow up so I just lived with constant terrible pain.  Now that I'm 37 and in a blinding amount of pain some days I started googling the condition to find out more & I decided to even bring it up to my family doctor who ordered an MRI.  Today, after 30 years of thinking I knew why I was in such pain, I got a call with the results of a simple "no detection". No specifics, just that it was negative.  Can this be possible?   I have headaches, constant pressure behind my eyes, severe pain and it's constant.  I can't remember a day when I wasn't in any pain.

[selmaS]

  To upload your MRI's you would have to upload them to your computer and transfer like any other picture to your profile page photo album section.

I was not able to upload to my computer....but some have taken pictures of the MRI and transferred them that way.....

[mmv_811]

In some of the posts it sounded like people had uploaded their MRI here somehow....is that possible?

[mmv_811]

Thank you both so much.  I pulled up the MRI images and all but one of the pictures is from above.  There only 1 side view and it not a detailed picture as far as it just shows the brain as a solid color doesn't seem right that there pictures all from above.

[KerriC1]

I saw dr menezes in Iowa city. He's not who did my surgery but he's who diagnosed CCI and that seems to be playing a major role with me right now. It's about a 5 and a half hour drive from where I live which is about the same as Chicago.

[selmaS]

KerriC1 has the info in her reply above.....most Chiari specialists will have forms they want you to complete and return along with copies of your MRI's...they may even request you have other testing done....which was the case with me....once I had all of them done I sent it to them for review, they then contacted me for an initial  visit and  to explain what they felt they could do for me.....

B4 you send off your only copy do make a copy for " just in case" circumstances.

[KerriC1]

Hi mmv. I live just south of St. Louis, and can tell you not many Drs there that understand chiari. I had to go out of state also.

The way it worked with me is you contact them first, they take some info and you send in your scans and reports. Once the NS reviewed it they will contact you to see if they can offer you any help. Good luck in your search!!

[mmv_811]

KerriC.  Since you live kinda of close, is there a dr you preferred?  I was thinking of going to Chicago

[mmv_811]

Hi selmaS.  I hope you're doing well.  I have a copy of my MRI scan.  Do I just contact the NS & ask if they'll look at it?

I'm so glad to hear that you got to a point of some relief!  

[selmaS]

  No worries...I know how you feel as I also came to this group for the same reasons....this month it is 8 yrs since my surgery.....and I had to go out of state as well....I would do it all over again to be able to feel like I do now....but it took time, so we all have to learn to be patient and be willing to research Drs and educate ourselves in order to have the best possible outcome.

[mmv_811]

Thank you so much!!  I probably would've just not told anyone & went on trying to ignore all of this pain.  I've read through some posts & it's so refreshing to see that other people that are describing things about me.  It also made me notice what an intricate part of the group you are.  You are truly wonderful for all you do.  I would've given up if I hadn't found this community

[selmaS]

  B4 you travel the Drs will have you take several tests, and send in all sorts  of forms of symptoms etc....they will let you know if they feel you have Chiari and can help b4 . That is how my Drs did it and how I understand most of the other Chiari specialists do it as well...they review your tests and all the info you give them ...so it is not just you going a long distance to find out.

ILLINOIS

Dr. Todd Alexander
Ste 210
1235 North Mulford Rd.
Rockford, IL 61107-0077
[phone]

Dr. Frim
Chicago, IL

Dr. Merle Diamond
Diamond Headache Clinic
Chicago, Illinois

IOWA

Dr Arnold Menzes
200 Hawkins Drive
Iowa City, IA 52242

Nothing for Kansas

OHIO

Dr. Lisa Lystad-Opthalmologist
Cleveland Clinic
9500 Euclid Ave
Cleveland OH 44195

Dr. John M. Tew, Jr.
Mayfield Clinic
Unv Medical Arts Bldg.
222 Piedmont Ave, Suite 3100
Cincinnati, OH 45219
[phone]

[mmv_811]

If the dr was positive that it wasn't just a misdiagnosis. That's my biggest fear. But if they were positive I'd probably travel anywhere

[mmv_811]

I'm very close to Illinois.  There's a possibility that the hospital destroyed the old MRI, unless I am still the case study).  I'm picking up the DVD for my current MRI tomorrow.  My concern about traveling far is what if I go somewhere & put in all of the effort but it's somehow gone or had been misdiagnosed.  I clearly remember the NS telling my it was 5cm so something showed it at one point, but without that MRI I feel like a crazy person insisting I have something so rare.  Is there a way the dr would look at the MRI before I traveled?   If they're positive I can travel far to get this fixed.  Kansas, Ohio, Illinois are the best.  Iowa & Arkansas & Indiana would be possible too.  

[selmaS]

  We do not have a listing for your state....sorry....is there anywhere else you might be able to travel to with your medical INS?

[mmv_811]

I live in St. Louis, MO.  Thank you again so much again.  I'd be lost without your help.  Its so comforting to read through some of these posts n see that I'm not alone.  I'm also noticing through education a lot of things I thought were wrong with me could be due to this.  I really hope I can find someone. I know the anatomy of what's wrong, but I had no idea how many other problems I have that  could be related

[selmaS]

Finding a true specialist is not easy so when the members here find a Dr they have been to, treated by and liked we post the name...it is not a referral or endorsement for those listed, it is only meant to be used to research the Drs...let me know the area you live in or can travel to and I will try to get you a list of names. be advised....many of us do have to travel out of our area to get to a Dr well informed and experienced.

[mmv_811]

Thank you so much!  I just had the MRI on Monday. Thanks for the tip to get a copy myself. I'll do that first thing. I was very disturbed when they told me.  It's such a weird story, but being diagnosed & using the MRI when it first came about that I was fascinated by it.  During a gifted program they let us select a career to shadow.  I did Diagnostic Raidiology at the same hospital I'd been diagnosed at.  When I shared that information with the radiologist I shadowed he told me that he thought I sounded familiar.  After a few computer clicks he was able to locate my file because I was on record as their case study. He pulled out my original images and showed me his job by using my MRI.  I had no clue I could request them myself!   Thank you so much for the advice.  

How do I find a Chiari specialist?  I've tried locating the NS that diagnosed me but I'm guessing he's retired or moved.  

[selmaS]

  Hi mmv and welcome to the Chiari forum.

To start Chiari Malformation and Arnold Chiari Malformation can be considered the same in that ALL Chiari Malformations were referred to as Arnold Chiari up until a few years ago and it now refers to a type of Chiari instead of ALL Chiari Malformations.....Type 2...most of us have type I

Did you get a copy of your MRI?...The current one and the older one you had done yrs ago?...If not request them from where they were done....not by the Dr....going forward ALWAYS request copies of testing and the reports....not ALL Drs are aware of what criteria dictates a DX of Chiari and  may over look or miss the DX....plus there are related conditions they miss altogether which can cause the same symptoms.

  Make sure you have more testing done....a CINE MRI to check for a CSF obstruction.....then educate yourself on ALL related conditions to help you determine the best Dr and course of action to proceed with.

You will want a true Chiari specialist....and we may be able to offer some Dr names for you to research.

Just remember you are not alone and many have had the same situation and not getting a DX until later in life....so we all have lived with pain far too long.