Question about my son's MRI results *Update*

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Question about my son's MRI results *Update*

Postby lovemyblessings » Sun Jul 01, 2007 3:03 pm

Hi, everyone! I may have posted with some of you on other sites in the past, but for those who don't know, here's a little about me.

My son Keegan (he'll be 5 next Sunday) has ACM1. He had 4.3 mm herniation diagnosed in March 2006. His CINE flow showed normal flow, but based on his symptoms, the condensed version is that the NSG decided that he was probably having some obstruction in flow with activity, so he had a decompression 6/22/06. He was great for 5 months or so and then he started having headaches again. He had a repeat MRI which his NSG told me showed a successful decompression. So he decided to do a cisternogram which lead to him being diagnosed with pseudotumor cerebri (or communicating hydrocephalus - his NSG tells me that either name can be used) in February 2007. The cisternogram showed that his body wasn't reabsorbing the CSF properly, so he was given an LP shunt. He's had two revisions since then. However, he's having symptoms again. Instead of going straight to another shunt tap, the NSG wanted to do another MRI, which was done today.

Here's my question. While waiting for his MRI today, I got a copy of his previous MRIs. The MRI that the doctor told me showed a successful decompression in January says, "The craniocervical junction again demonstrates a 4.5-mm downward herniation of the cerebellar tonsils without change when compared with the prior study of 03/01/06." So, how can that show a successful decompression?

During the decompression the NSG told me that he removed a section of the skull, cut through the dura, put the cerebellar tonsils back where they belonged, shaved part of c1, and used a bovine patch.

His doctor is the chief of neurosurgery and has published papers on Chiari. With his associates, the perform a few hundred decompressions per year, I was told.

What do you think? I also managed to get the CD with today's images and I am not seeing anything different than the previous two as far as the cerebellum - not that I'm the doctor, but there's nothing glaringly different.

Thanks for listening,

~Dawn~
Mommy to John (7), Marah-Lynn (6), Keegan (5 next Sunday, ACM1 decompressed 6/2006 and PTC dx 2/2007 with 1 LP shunt and 2 revisions since then), Luke (3), Quintin (22 months) and Ruth (7.5 months)
Last edited by lovemyblessings on Mon Jul 02, 2007 5:30 pm, edited 1 time in total.
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Postby loren67 » Sun Jul 01, 2007 5:25 pm

i would get a second opinion/reading on the films you have. are you sure on the dates and that they are indeed two different mri's? if so, like isaid, i would have another doc read them somewhere else.
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Postby lovemyblessings » Sun Jul 01, 2007 6:27 pm

Yes, they are definitely two different MRIs. The second one references the first one.

The only person I know who will review MRIs is Dr. Frim and I feel bad using him for that when I know there is no way we could go to see him.

My basic question is, shouldn't a successful decompression result in NO herniation, or at least less of one?
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Postby youngwife » Sun Jul 01, 2007 7:33 pm

Hey, Dawn!

I just wanted to say HI! :D

I wish I could give you more ideas and help, but all that I can offer are my prayers! :wink: Which I will continue to lift up for you, Keegan, and the whole gang.

I know it must be so frustrating to have had the surgery done, and be wondering if it did what the neurosurgeon said it did!!! :x

I hope that Keegan has good days ahead so he can be a normal little five year old.
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Postby angie7 » Sun Jul 01, 2007 7:49 pm

Maybe, this is just a randem thought here so bear with me. Maybe the doc reading it says "successful decompression" meaning that they did successfully manage to open the space but there is another herniation??? It does sound although that his hernation is back :(
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
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Postby lovemyblessings » Sun Jul 01, 2007 10:45 pm

What confuses me is that the MRI in JANUARY lists the herniation in the report and that is the one his doctor tell me shows a successful decompression. I do not have the report, nor his neurosurgeons opinion on the MRI from today.
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Postby angie7 » Mon Jul 02, 2007 8:08 am

Have you asked the doctor about it? If not, I would, you could just call and ask what this means....
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
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Postby lovemyblessings » Mon Jul 02, 2007 10:10 am

I haven't called yet because it was Sunday. I'm going to calll later today.
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Postby angie7 » Mon Jul 02, 2007 12:06 pm

Good, hopefully they can explain it a bit better. Let us know what he says.
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
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Postby lovemyblessings » Mon Jul 02, 2007 5:23 pm

Well, I have some news. According to his neurosurgeon, the MRI from yesterday shows NO herniation. Which is good. It means the Chiari isn't the cause of his issues at this time.

The bad news, of course, is that he is still having: swooshing in his ears, tingling in his feet, seeing colors that aren't really there, headaches (sometimes), and stomachaches.

He did have a sleep study done recently that shows a diagnosis of "obstructive sleep apnea", but it doesn't really meet the official criteria. Regardless, his neurosurgeon won't do anything else until the OSA is addressed.
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Postby youngwife » Mon Jul 02, 2007 6:19 pm

:? That doesn't help Keegan!! Praying you get somewhere with the ENT!
Homeschooling mom to 6 wonderful blessings from the Lord. ~ "Let no corrupt communication proceed out of your mouth, but that which is good to the use of edifying, that it may minister grace unto the hearers." - Ephesians 4:29
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Postby angie7 » Mon Jul 02, 2007 7:58 pm

Glad to hear the herniation isnt back but sorry to hear that you are left with no answers again..
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
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