5 months post surgery with issues

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

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5 months post surgery with issues

Postby memom » Mon Dec 21, 2009 6:24 pm

Hi Everyone

I have been waiting, hoping that I would not have to post anything related to post surgery problems but...

My daughter was decompressed July/09 and everything seemed good. NS removed c-1 but did not open dura. Said he saw good flow with interoperative ultrasound - no need to open dura. Well, some things are better and some are not. The headaches are gone and the double vision/peripheral vision loss has been resolved. She no longer has "drop attacks" but we are have alot of new issues. She has numerous complaints - ankles hurting, feet numbness, leg weakness, eye sensitivity, ear sensitivity, cannot focus some days. At times the leg pain is so bad she cannot walk and has to use wheelchair. Other days she is completly fine. Lately, she has complained about arm weakness, this is new for her. She has trouble with fine motor skills such as writing and anything which requires picking up small objects. Other issues include chest pain, rapid heart beat and shortness of breath. She has stomach aches everyday now. We have to force her to eat and drink.

On several occassions the pain will start in one leg, then jump to the other leg, then jump to her arms then her chest then her legs, it flashes all around her body for about 2 hours then settles in her leg behind her knee (pain scale 10). It takes about 3 days to recover from one of these "events". It seems like her body is attacking her. She is very depressed after this and she is totally scared of pain now!!!!

NL says that there is not enough flow - could be positional, NS says there is plenty of flow. Don't know what to think...


We saw a ped. cardiologist today who basically told me I was wasting his time, she has a perfect heart (think God!) and that many kids have chest pain and rapid heart beat/ shortness of breath - it is not a big deal! He treated me like a crazy person (I really wanted to smack him!!!!)

NL also wants to perform nerve conduction test. We tried with out sedation last week, she could not do it - too painful. We have to do it under sedation another time. Another MRI in different positions is scheduled.

NS said to see Rheumatologist - blood work has been sent - we are waiting to hear what he finds. NS thinks it maybe connective tissue disorder of some sort or "neurogenic pain". Meanwhile, I am going nuts trying to figure this all out. It seems like half the people I talk too understand and the other half think I am crazy!

Has anyone had similar experiences? Any help would be appreciated.
Mother of a beautiful 9 year old girl with CM 1.5, SM T 5-8 and Hypermobility. Decompressed 7/09.
memom
 
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Re: 5 months post surgery with issues

Postby lcolangelo » Mon Dec 21, 2009 8:26 pm

So sorry to hear your daughter is having problems again. We're going throught he same things with my 3 year old-- he was decompressed in August-- and 2 months later began having problems again. Did another MRI with flow study and found that he doesn't have any CSF flow. Did they do an MRI with flow study? Our surgeon said the same thing-- flow during operation looked ok-- so they didn't open the dura-- now we're right back there anyway-- surgery is in February. Who is your surgeon? I'm praying that all is ok with your daughter-- keep us posted.
lcolangelo
 
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Re: 5 months post surgery with issues

Postby memom » Mon Dec 21, 2009 11:04 pm

Sorry to hear about your son too!

Yes, followup MRi with flow study was done last month, everything looked good. Dr. Keating in Washington D.C. is the NS. He keeps saying this is neurogenic pain. Had a second opinion last week by another NS and he also said flow looks good. He ordered a positional MRI - we are waiting to hear when it will be scheduled. He thinks this may be a blockage related to position or cranial settling. He does not think opening the dura will benefit her.

I will keep your son in my thoughts...
Mother of a beautiful 9 year old girl with CM 1.5, SM T 5-8 and Hypermobility. Decompressed 7/09.
memom
 
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Re: 5 months post surgery with issues

Postby storto321 » Wed Dec 30, 2009 5:35 pm

hello nice to meet you,i'm sorry your daughter has so much trouble. i have had 2 surgeries this year i am 6months post op. i don't have any kids,but i have cm1. so ithink the symptoms are from the chiari. i still have some of the same symptoms.my neurologist wants to do a nerve conduction on me in jan.take care..christine :P
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