not great news

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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not great news

Postby lcolangelo » Tue Dec 08, 2009 9:05 am

Well-- after reviewing our MRIs-- the neurosurgeon feels that my 3 year old-- who just had a decompression in August-- needs to have surgery again. He began having headaches again about 2 months after surgery-- and the MRI shows complete blockage of CSF flow-- and tonsils still herniated to C2. They did not do an intradural procedure last time-- (guess they should have) so they will be doing on this time. Surgery is Feb. 8-- please keep us in your prayers!
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Joined: Fri Mar 21, 2008 1:50 pm

Re: not great news

Postby lttutrow » Tue Dec 08, 2009 11:18 am

I am so sorry!!! I can't imagine how hard it is having to go back in again so soon on such a little one, you'll be in my prayers.
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Joined: Fri May 02, 2008 10:16 pm

Re: not great news

Postby Janice » Wed Dec 09, 2009 2:14 pm

You, and your children, are in my thoughts and prayers. Are they seeing an expert NS? Have all underlying/related conditions been ruled out, for both children, especially Tethered Cord Syndrome? Have second, or even third, opinions been provided? Both your children are so young and I'm saddened to hear of their ongoing troubles. I'll keep praying for them.

I am so very sorry your little one has to go through this surgery again. I do pray this surgery provides optimum relief with no need for additional decompression surgery.

Take care,
GOD Bless!

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4 (Copy & Paste link into your browser)
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Joined: Wed May 30, 2007 6:44 pm
Location: Escondido, California

Re: not great news

Postby jmarie1210 » Wed Dec 09, 2009 4:03 pm

Hi Lisa,

My name is Julie and I'm new to the board. I'm sorry that your little one is not feeling well and has to go through that again. Your in our thoughts and prayers...
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Joined: Mon Dec 07, 2009 6:52 pm

Re: not great news

Postby lcolangelo » Thu Dec 10, 2009 8:49 am

Yes-- when my daughter was first diagnosed-- 8 years ago-- we got many opinions from all over the country-- they all reccomended Dr. Menezes in Iowa-- he is actually on the ASAP medical advisory board. He is wonderful and we really trust him. My daughter has needed 4 decompressions-- she is quite rare-- even Dr. Menezes who has seen thousands of chiari patients from all over the world has not seen this much. Her body keeps regrowing bone over her decompression sight. My son has had only one decompression-- but it was only 2 months ago. They did not do an intradural procedure-- the doctor thought he had given him enough room-- but that wasn't the case. We're just beside ourselves that we have to put him through this again-- especially so soon. Neither child has TCS-- but my daughter had a basilar invaginiation==she needed an anterior and posterior approach along with a fusion-- what a nightmare! My little guy isn't quite as complicated-- but has a 25 mm chiari and indentation of the medulla-- it did not improve after his first decompression, so we are all praying. Thanks so much for your prayers and thoughts.
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Joined: Fri Mar 21, 2008 1:50 pm

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