I'm new and scared....

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

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I'm new and scared....

Postby maryoros » Wed Aug 05, 2009 9:05 am

My neice was diagnosed last week w/ CM 1. She is 3 years old and the distention of the "tonsils" is 2 cm (yes...that's centimeters...not mm's).
My sister is due in 5 weeks with their fourth child and is overwhelmed by this diagnosis. We are meeting with the NS next week to schedule PFD surgery.
Can anyone give me any information on what to expect post-op? How long is the hospital say? What about the pain....is it managed well? Is there physical therapy involved afterwards? I'm sure we will obtain some of this info. @ our appt. but we are terrified and I was hoping to hear from parents first hand on what to expect. This seems like such a caring forum---thank you for your time and input.
maryoros
 
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Re: I'm new and scared....

Postby SamuelsMom » Wed Aug 05, 2009 10:17 pm

Hello and welcome. You are in the right place to find answers and support. Be sure to read the information on the site to learn as much as possible. I'm curious as to what led to your niece's diagnosis and if she has any pain or symptoms. I don't believe chiari alone means decompression surgery. Be sure your niece is seeing an experienced NS, as you read others post you will see it is very important. You can post your area and others will chime in on expert NS in your area. My advice educate yourself, seek an expert NS and ask lots of questions on this forum.
Lastly, I know how hard it is to learn such scary news. As someone on the forum wrote to me cm can be life altering, it is not life threatening---so I hold on to that as I continue to search for answers for my son.
I hope this helps. There are so many more people on this forum that are a wealth of information. Again, welcome.
SamuelsMom
 
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Re: I'm new and scared....

Postby lttutrow » Wed Aug 05, 2009 10:27 pm

Hi,
My children were older, 10 and 12, when they had surgery, so I'm not sure if things would be the same as far as recovery. Mine were in the hospital for three or four days afterwards, we were told to expect between three to five days. The pain was well managed, but I would talk with the Dr. ahead of time to ask how pain is going to be managed. Mine came home with oral meds to take for pain, but really didn't need that beyond the first few days at home. My son also has Syringomyelia, and he did need some physical therapy afterwards to work to increase his arm/hand strength, but my daughter did not.
Which nsg. is she seeing?
lttutrow
 
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Re: I'm new and scared....

Postby jupes » Thu Aug 06, 2009 12:42 am

Hello and welcome!
Ditto to the previous posts! This ASAP site has great educational articles and a couple of online videos that deal with chiari/SM in children.
Tell your sister I will keep her and the littles ones in my prayers. Hope the pregnancy is going well! She is so blessed to have you for support and to be a health advocate for your niece! Let us know if you have anymore questions and I hope the NS s\he is seeing has CM experience!
(((HUGS}}}
Julie
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
jupes
 
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Re: I'm new and scared....

Postby maryoros » Mon Aug 10, 2009 10:26 am

Thank you for all of the information and kind words sent our way. We have been in contact with Dr. Frim's office out of the University of Chicago. He seems to be an expert in CM and a compassionate Dr. from what I have read. Any further insight would be appreicated. Amelia was dx by a ped. NS in Rkfd Il and referred to Chicago. She had a MRI and EEG which is what led to her CM dx and epilepsy dx. (she had been experiencing seizures at night which is why she was seen by NS. He believes the seizures are not related to the CM but we will discuss that w/ Dr. Frim at our consultation). Ever since she could talk Amelia used to always tell us that "her stick hurt". We assumed that she meant her throat...we now know she was talking about her neck. When she was 2, she was dx with labrynthitus (she has severe vertigo and balance problems to the point of vomiting) and again...another misdiagnosis masking CM symptoms. She falls ALL the time,even while just walking, has chronic headaches (she tells us that her brain burns and sometimes her neck feels itchy or like a bug is biting it), and severe gastrointestional problems. (she's pretty underweight for being 3 1/2). Dr. Frim requested a full spine MRI prior to consultation so we have that scheduled for next week.
I am continuing to do as much research as I can on this affliction. I appreciate the support & resources available in this forum.
Thanks again,
Mary (Amelia's Aunt)
maryoros
 
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Re: I'm new and scared....

Postby SamuelsMom » Mon Aug 10, 2009 9:18 pm

Dr. Frim is an expert. I'm glad to hear your niece will be seeing him. Amelia sounds like a bright little girl! Keep us posted.
SamuelsMom
 
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Re: I'm new and scared....

Postby kellbell » Thu Sep 10, 2009 10:11 am

Hello,

Please update on your niece's condition. Hope all is well.
kellbell
 
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