Mri ?

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Mri ?

Postby bekahe » Sat Sep 05, 2009 10:31 pm

I posted quite some time ago with questions about my 5 year old, Ruby and her recent syrinx finding. A lot of time has passed and we are still going nowhere:( My most recent question is this, and I will type from her MRI:
2-3 mm syrinx extending from T11 to L1 including the conus medullaris with no mass or abnormal cord enhancement. maximum dimensions of 4mm A thin plaque of epidural fat signal intensity immediately dorsal to the lower thoracic cord in the epidural space represents a small focus of presumed lipomatosis. This is seen on T1-weighted sequences both in sagittal and axial plane and is thin and plaque-like measuring 2x1x10 mm and is felt to be benign.

Also, on her clinical history page it says Syringomyelia and Syringobulbia patient.

My questions are these, among many others! If she had syringobulbia, would those findings be stated somewhere on the impression part of the brain mri? Are they calling her that because some of the symptoms they are looking for are motion disorder things and they are possibly brain stem related?

The lipomatosis is totally new to me. Does the report sound like that is a significant thing? I am confused on some of this because I wasn't informed of some of this, just reading my mri report that I had them fax to me and saw that. The mri cds were sent to I believe Dr Frim in Chicago along with a few other Drs I hadn't heard of.

The mri states normally placed cerebellar tonsils, etc.

As a recap to her symptoms, as it's been almost a year since we were last here, we discovered a syrinx while looking at a birthmark at base of spine and also low muscle tone, etc issues. She has some crazy sleep stuff going on that no one has been able to figure out, her hands posture really stiff and she moves around quite a bit. She has some orthopedic issues as well with an in-turned hip or something odd about how she walks. I'm in the dark about a lot of it as her normal ortho doc recently told us she was too advanced a case for him. And we thought the syrinx was the issue and it seems there is more going on. I am praying that whoever her MRI reports were sent to will have an answer for us. We live in small-town North Dakota and have nothing around us so travel for absolutely everything.
So basically I'm lost again and wondering if anyone knows anything about the lipomatosis or syringobulbia stuff. Thanks in advance, Bekah
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Joined: Sun Nov 09, 2008 10:53 pm
Location: North Dakota

Re: Mri ?

Postby jupes » Mon Sep 07, 2009 5:48 pm

Hi Bekahe!

I am no expert at interpreting MRI or reports but have heard about these types of conditions. Syringobulbia is a syrinx at the brain stem and would show up on a brain MRI and possibly a cervical spine MRI. This would cause different symptoms r/t brain stem involvement.

The lipomatosis and the location of the lower syrinx(T11 to S1 and conus) sounds like a possible tethered cord issues. A tethered cord could be the cause of the syrinx and some of the symptoms you mention.

Glad her MRI is being sent to some experts for review. Many times the experts pick up on issues that the local radiologists and others miss. Good luck and let us know what you find out. If you can travel, it is well worth it to have your childs care in experienced hands.

14 yr old DD with CM 0/SM and mild scoliosis.
"Trust in the Lord with all your heart and lean not on your own understanding" Proverbs 3:5
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Joined: Fri Jan 09, 2009 2:37 am

Re: Mri ?

Postby bekahe » Mon Sep 07, 2009 10:01 pm

The reports say her chord is not tethered, although her symptoms often point that way, including the big red birthmark at base of spine.

What is a lipomatosis? When the syrinx involves the conus is it sometime chord related?
Posts: 29
Joined: Sun Nov 09, 2008 10:53 pm
Location: North Dakota

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