concerning call from the doctor...

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

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concerning call from the doctor...

Postby Nancy74 » Thu Mar 25, 2010 3:07 pm

My daughter Hannah had surgery in Sept for Chiari Malformation. She just had her 6 month MRI and I received a call from the doctor saying he was very concerned because her brain has slipped even further into the space that was made to relieve the compression. Has anyone had to deal with this and what was done for your child? As of now we will keep getting MRI's to watch what is happening
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Re: concerning call from the doctor...

Postby lcolangelo » Thu Mar 25, 2010 7:19 pm

I have heard of this-- is it called brain sag? I've heard that sometimes when they remove too much bone for a decompression-- this can happen. They sometimes have to build a "shelf" -- Not that this is the case with your daughter-- who is your neurosurgeon? I would def. make sure to get an opinion from a chiari specialist. We see Dr. Menezes in Iowa-- that is where I met a mom whose son had a similar experiance-- they were there to see Dr. Menezes for a second opinion and so that he could repair it. I'll keep you in our thoughts-- let us know what you find out.
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Re: concerning call from the doctor...

Postby Nancy74 » Thu Mar 25, 2010 8:51 pm

We live in Alberta, Canada and our neurosurgeon is a Dr Jeffery Pugh. He seems to know what he is doing and we are happy with him. I am not aware of any specialists anywhere in our area, but all this is fairly new to me. Hannah had surgery on Sept 2 and turned 2 yrs old on Sept 26. The only way she can verbalize how she feels is by saying " broken head " I will have to look into other specialists and see what I can find out.
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Re: concerning call from the doctor...

Postby tnajk » Tue Mar 30, 2010 11:28 pm

I've heard this happens frequently with Doctors who perform the decompression surgery and aren't CM experts. (Not saying your doctor wasn't or that it cannot happen to one of them!) Like the previous poster said, the Doctor makes too much room and the brain slumps causing a whole new set of issues. I hope that this is not the case or if it is, that you can get through it easily!! If I were you, I'd take my daughter to another Doctor (A doctor that specializes in CM) for a 2nd opinion. Hang in there.
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