how do you know which MRI is correct???????

[mikeysmom1995]

HI all,

We got DS's second MRI results today and we got different results than the first. First MRI with contrast stated 8mm herniation. Second MRI says that there is only low lying cerebellar tonsil 4mm from level of foremen magnum without obvious evidence of Chiari 1 malformation. Also stated that he has normal flow of CSF, which is such good news. But what now ?  Which MRI do we go by. OMG!!!!!!!!!!!!!!!   I know that anything below 5mm is not concidered Chiari, but he has numerous symptoms of it. Have not heard from the Doc yet, waiting on  a call. Just so confused, and not sure what to do. Any light on this would be so appreciated.
Selma, how are you feeling?

Barb :)

[mikeysmom1995]

Thank you Sheri and Shannon,
I think it might be good also for him to see a peds doc. Is dr Frimm a Chiari Specialist? At this point I just want someone to review his 2 conflicting MRI's and give us some direction on what to do. I am happy he has no blockage, but what now.
Shannon, I hope you get some answers from Dr. Heffez,and thanks for the info on who to talk to at his office.
Also, Sheri, how is your son? I have been thinking about you and your son, and have been watching for a post on how he is feeling after not feeling well.
Appreciate your help, and let me know how your boy is doing.
You are all so wonderful, and I appreciate all of you so much.


Barb :)

[sherimom]

Hi - just a thought for you - in addition to Dr. Heffez there is also Dr. Frimm in Chicago. The only reason I mention it is because I believe he is associated more with a pediatric system.  My son had his surgery by Dr. Heffez about a year ago.  It went well, but there have been times when I wondered if (even though he is 16) if it wouldn't be helpful to see someone who specializes with children. Just something to think about.....good luck!
Chicago is about an hour and a half south of Milwaukee.
Sherimom

[shanmomof3]

Ur welcome barb. I would call tomorrow and see if dr. Heffez would at least look at the films I mean your son will be 15 this year right? Make sure you talk to Renea! As for me ... I'm hoping to see dr. Heffez! My records got lost in the mail (long story) so i'm resending everything this week with fingers crossed!!! I'm sorry your having to go through this! I know how hard it is to wait and i also know how hard it is to watch your child suffer and feel like there is nothing you can do! I hope you both get some answers and relief soon! You're both in my prayers! -- Shannon

[mikeysmom1995]

Hi Shannon,

Thanks so much for the info. This is all so frustrating. I was on Dr. Heffez sight, and he only sees patients 15 and over, and our Mikey is only 14. I am going to call his office tomorrow to see if he will at least review his films.  So what did you do about the difference in opinions? Did you see another doc? It seems that some docs know what they know and don't want to hear anything else. I want to be concentrating on caring for my son, not dealing with all of this cr**  
I just spoke to a mom that sees the same NS as we do and she said that he is not real good about you getting a second opinion. Oh well, I guess I can't worry about offending him at this point, I just want to get to the bottom of this.
Just got off the phone with the NS and he says that because the new scan is below the 5mm standard that he does not meet the criteria fo Chiari. I said why is your scan right and the other wrong, and he replied that he has more faith in the one he had done. Oh my, here we go.  
Thanks Shannon, I really appreciate all of your help

[shanmomof3]

Hi barb! I was gonna say the same thing as selma about the slices and also there is a disagreement on where to measure from. I have been told my herniation is anywhere from 2mm to 5mm to there isn't one depending on who is reading it. So keep pushing! I was gonna suggest Dr. Heffez because he tries his best to look at your films and get back to you within the week! His assistant Renea is wonderful and very helpful. Just my thoughts. -- Shannon

[selmaS]

Barb, this happens to all of us...and I really think it is a shame that we feel like this after going to see them...we paid them and many times they act like we r charity cases and r getting nothing for their time.....

Deff send the MRI's to a true chairi specialist to see what u can find out...and whenever u r disappointed by the medical professional.(said very lightly) re read Dr Oro's poem at the top of the forum.

"selma"

[mikeysmom1995]

Hi Selma,

Thanks for the quick response, and you always calm me down when I am freaking out over something. Thank you so much. I don't have a true Chiari specialist yet, but I think that I am going to call to Dr. Heffez office and see if I can send Mikey's MRI's to be reviewed.  I just feel like I am fighting everyone, and his symptoms have been going on for so long, and I finally felt like we were on the right path, now I feel like we are right back where we started.
I am so sorry to hear that you are not feeling so well right now.  It breaks my heart to hear that you are suffering so. I will pray that you will get some relief.
Again, thanks for your support, it is appreciated more than you know.

Barb :)

[selmaS]

HI Barb,

I have no idea if u have a chiari dr in place yet, but it sounds like it was the slice taken for the second MRI that it appears smaller.....was it taken at the same place?

Imagine an upside down pear......if u draw lines in it to slice it from top to bottom the out side slice will be smaller.....but if u get a slice from the middle it is bigger.....herniations do not shrink on their own and a good chiari dr will go by the largest herniation.

The radiologist may be from the school of chiari is congential and is asymptomatic....blah blah blah....so get both MRI's to a true chiari specialist...they read them and measure them  themself.

And u can still have chiari symptoms if the herniation is below 5mm.....mine after surgery is 2 mm and my dr said I will begin to feel some chiari symptoms from it until I get my TC release done.....

Right now Barb I am not that good....constant pressure HA's and I have so much PND that I am constantly choking....and that does not help the HA's....thanks for asking : )

"selma"