Can anyone help? please??

[Sweetheartsluv]

Hi Everyone,

I have Chiari One malformation and I am having surgery May 3rd. My surgeon ordered MRI's for my 3 almost 4 yr old because she had seizures when she was an infant and now she sometimes complains of head, neck and bk pain. I got the report back today and looked at it... I know you guys aren't Dr's and my Dr will review soon but in the meantime can anyone help me out?? Please? Here are the basics..

corpus callosum mildly thickened anteriorly.
cerebellar tonsils pointed in configuration and are minimally ectopic.
there is partial effacement of subarachnoid space at the level of the foramen magnum
there is a disorgananized appearance of the inferior aspect of the cerebellar hemispheres
there is a relative lack of subarachnoid space overlying the cerebral hemispheres and cerebellum.
there is a mild pointed configuration of the calvarium at the vertex anteriorly.

impression:
mild cerebellar tonsillar ectopia w/ a mildly pointed configuration of the cerebellar tonsils. disorganized appearance of the inferior aspect of the cerebellum.

now she had an mri of her brain 4/8/08 and none of this was in that mri and it was done at the same location..

help pls?

thanks,
Krista

[trebmal2]

Hi Krista. I'll be praying for you now and especially on May 3rd.  I'll be wearing my purple that day in support of you!  Think positive thoughts and know we're all pulling for you!! :)  

Not sure and don't want to try and comment on your daughter's MRI.  They shouldn't have given you the report without reviewing it with your doctor first.  Those impressions are sometimes scarier sounding than they really are.  I would call the doctor asap for that review so you can ease your mind.  You already have soooo much to think about.  Let us know what the outcome is and I'll be praying for her too.

XO Christine  

[selmaS]

Hi Krista,

We all know how desperate u must be feeling with ur impending surgery and now this report sitting in ur hands....it is not fair.....

And u r right we r not Drs, but it does not sound that bad as it does not refer to more studies, so there may not be over crowding seen...and the tonsils are pointed...that could indicate chiari as most with a pointed appearance are associated with chiari....

As for the seizure, it could be related...there have been a few kids on here that have had seizures as a symptom of their chiari......

As Christine noted, ur Dr may view this diff then the radiologist that wrote the report...so do not take too much stock in what is written, each NS will review the films, not the report.

U need to be in the right frame of mind for ur surgery....and if this is going to wait till after ur surgery and u can not let it go, let ur NS know....u have to relax for the best results.

  Please keep us posted on both of u and know we will pray for u and ur DD for the best possible outcomes.

  "selma"

[Sweetheartsluv]

Thanks so much for reading my post and the support. I'm very emotional right now. I was praying so hard Bella's MRI results would be normal. I reviewed the disc and it certainly looks like Chiari and the scariest part is it looks tighter then my head.

I know I shouldn't have looked but like I said I was praying for normal results and if they were normal I would be jumping for joy right now. Now I'm feeling awful I can't believe I gave this to my sweet beautiful baby girl. The pain and suffering I don't EVER want this for her! It's the worst feeling in the world and my fiance doesn't understand. I'm scared to death for her.

I'm nervous for surgery but, I'm feeling guilty because it's out of netwk w/ my insurance and I'm not sure what my bill will be in the end. Also, I will be out of wk and our bills will suffer and I won't be independent for sometime. I'm scared about all of this.. I'm not giving up on fighting my ins though I am still in appeals to try and get them to cover Dr. B at in netwk rates.. Hopefully they will approve it.

As far as finding out about Bella's results it's Dr. B who will be reviewing them when I see him for my operation- so I have to wait until May 3rd. So nervous.

Thanks for listening guys
xoxo
Krista

[selmaS]

Krista....listen to me, u did not give this to ur DD, u did not choose to give it to her, just as ur parents did not give u chiari, unfortunately it is the luck of the draw.

The positives- u can explain what is going on, and understand her like no other mom can....do not beat urself up over this....are u upset with ur parents?...No, and neither am I, they had no idea they were passing it on ne more then u did.....

To give is to do so with intent.

Keep in mind most kids bounce back from this much better then us older folks do...lol...and she may do better than u, u just never know....stay positive.

U know the rule of the road when sliding on ice toward a ditch....look in the direction u want to go, not the ditch, other wise u will end up in the ditch......

  "selma"

[trebmal2]

Krista,  selma is right, you'll be able to explain  everything to your daughter in a way one else can.  You'll know the words and the way in which you'll explain them to her.  Children are resilent and very strong.  They heal quicker than us.  

I know your anguishing over this and I totally understand, but this is not your fault!  I have a son who's had medical problems his whole life and I did the same thing you're doing.  I wanted to take all his pain away just like you.  I blamed myself for it.  It wasn't my fault.  Things just happen.  There wasn't anything else I couldn've done during my pregnancy and you couldn't have either.  Stay positive & strong and you'll both get through this.  Mommy/daughter power!!!

XO Christine    

[Sweetheartsluv]

Thanks guys,

I am really trying to take in what you both said. I called in today and kept my sweet girl home from school. I want to spend as much time with her as possible before my operation. Her birthday is May 29th she will be 4 years old. I am hoping I will be feeling well enough for a b day party. Not sure though... Have no clue what to expect. I have heard some people say they recover in a few wks and some say a yr. I'm hoping I am on the faster side but, I won't rush because I won't this to be a success specially now that I now Bella has it. It has to be a success! I am doing a Urodynamic Study 5/26 to rule out neurogenic bladder and if it does then Dr. B said it will confirm TCS and he will perform another surgery 2-3 months later to correct that. Has anyone had that operation or know anyone that has gone through that operation?

Thanks so MUCH for listening!!!
xoxo
Krista