Chiari I Malformation

[Birdie7329]

Theres a strong hx of Chiari in my family. My son has some early symptoms Chiarians get, but the radiologist says thers no chiari present. I see a small brain bulge. Anyone willing to review the MRI and give an opinion on me being over the top worried or suggest I seek a second opinion??

[Birdie7329]

Thank you. I will compare the pics soon.

You both have eased my worry some. Thank you very much.

[Birdie7329]

Yes, very frustrating. I never want our family to go through that again and lose another... I want to have all the facts and risks and have time to decide the path and have a trustworthy doctor(s).

[The_beat_goes_on]

I'm so sorry to hear about the issues your niece and family went through ...

The picture I posted is here:

http://www.medhelp.org/user_photos/show/463849?personal_page_id=3008045

[selmaS]

  Wow, poor thing went thru so much, I am so sorry...thanks for sharing that as u never know if it could help someone else.

It is also frustrating as this should never have happened as I am sure u know and feel that already....

[Birdie7329]

My niece passed from a multitude of complications. It started with meningitis and then a few hospital mistakes (ex:giving her meds she was KNOWN to be allergic to, leaving guide wires in causing infection). Pneumonia. Dialysis for bad blood. Clots. For 3 months, it was one step forward, 2 back. Ultimately, we believe she was drowned by her feeding tube contents. It was turned up way higher than it should have been, releasing too much nutrient for her body to digest. She had gastroparesis. There aren't enough nurses cross trained to care for people with multiple system issues.

[selmaS]

  Oh my goodness I am so sorry to hear that.

Many with Chiari do have GI issues, so that is not uncommon.....a CINE MRI is done to see if there is a CSF obstruction.....other testing should also be done when a child is involved...sleep apnea , syringomyelia, ICP, POTS, ehlers-danlos,

May I ask, ur niece that passed, do u know from what complications she passed?

I really feel we need to rule out ALL related conditions b4 surgery is considered bcuz it can affect how we heal and feel post op.....the other is to make sure u have a true Chiari specialist as that is key...I can not stress these things enuff.

[Birdie7329]

I do have the MRI disc. Could I see yours so I know what I am looking at?
The report says that everything is normal. We also had a belly ultrasound as that is where his biggest problem is. My one niece also started with belly issues and for years went undiagnosed. One day she got a migraine that would not go away and was hospitalized. She eventually was diagnosed and had decompression surgery and died 3 months later from complications. So, yea, I am pretty worried...

Thank you for welcoming me.

[Birdie7329]

No, that was not ordered.

[The_beat_goes_on]

I agree with Selma ... it does not look like the cerebral tonsils are herniated.  Do you have the MRI disc?  The easiest view for me to spot my chiari was in a coronal slice from my MRIS .... I just uploaded a picture from mine, if you want to look.  

What does the report say?  I'm sorry to hear he's having issues and I hope you to the bottom of it soon!

[selmaS]

  Hi and welcome to the Chiari forum.

I am not a medical professional, but it does not look like the cerebral tonsils are the issue to me...but something I am not familiar with could be there.....just not sure what.

Did ur DS have a CINE MRI to see if he has a CSF obstruction?