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Re: 2nd opinions

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If I remember correctly, you said she is 13. At her age, she probably knows the

difference between pain and loudness. If you told us this before, I'm sorry for

not remembering, but was she born deaf with no hearing and just recently

implanted?

If the audiologist has this under control now, that is good news. Just know

that she should not have pain and if the pain comes back and her current CI team

cannot find the source, it would not hurt to get a second opinion.

Alice

From:

Thanks for your advice. We do feel very loyal to our audi. It would

be very hard to go somewhere else. She really gives 110% AND... my

daughter trusts her so much. Our audi is still making ground with the

mappings, slowly but surely, working around the twitching and the

pain. Each time we go, we make a little bit of progress. Does anyone

have any experience with confusing the sensation of loudness with pain?

Or loudness causing pain? I know I have read of elderly people being

low in a particular vitamin/mineral that causes them to have pain and

get headaches when there is much noise around. Particularly if they

usually have a very quiet environment. Thanks for all your advice.

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  • 6 years later...

My opinion is that you are probably fine. From what I understand from my son's

chiari is that even when people are symptomatic they don't always do surgery.

If it is small and no symptoms then they would absolutely not consider surgery.

It also is not life threatening or really dangerous if untreated even with

symptoms. I'm sure someone who's child has a more severe chiari might know more

about this. If you are uncomfortable though go far the second opinion. I do

think that your peace of mind is worth something.

Jenn

Mommy to Cole & Max

>

>

> Hi

> My daughters brain/spinal MRI was reviewed by the radiologist that preformed

the MRI and the cheif of neurosurgey at Detroit Childrens Hospital. The report

found no evidence of a tether or anything wrong with her vertabre. However they

found a small chiari 1 malformation. Which led us to the nuerosurgen. He read

the MRI and said there was no sign of a tether and the chiari was small and he

expected no symptoms to arise from it.

> She hasn't had any of the classic signs for chiari. She see's him right now

every 3 months for checkups.

> I guess I'm wondering if I've just settled for what he said and didn't get a

offical second opinion.

> He's suppose to be great and so is the hospital. We do like him and feel like

we trust his wisdom.

> I read about everyone getting second opinions on things. Guess I'm wondering

if I'm doing the right thing.

> However, the day after our first apt with him, he was going in for clinical

meeting? I guess that's what you call it? Where all the drs talk and disscus

things, patients ect. Anyway he told us that he was going to show the other

nuerosurgens there, her MRI and see what they thought. When he got back with us

the prognosis was still the same.

> I thought that was kinda great, isn't that like more than 2 opinions?

> Am I just being peranoid?

>

> Mama to Kaitlyn 15ms

> 50* down to under 10* in 1st cast

>

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My opinion is that you are probably fine. From what I understand from my son's

chiari is that even when people are symptomatic they don't always do surgery.

If it is small and no symptoms then they would absolutely not consider surgery.

It also is not life threatening or really dangerous if untreated even with

symptoms. I'm sure someone who's child has a more severe chiari might know more

about this. If you are uncomfortable though go far the second opinion. I do

think that your peace of mind is worth something.

Jenn

Mommy to Cole & Max

>

>

> Hi

> My daughters brain/spinal MRI was reviewed by the radiologist that preformed

the MRI and the cheif of neurosurgey at Detroit Childrens Hospital. The report

found no evidence of a tether or anything wrong with her vertabre. However they

found a small chiari 1 malformation. Which led us to the nuerosurgen. He read

the MRI and said there was no sign of a tether and the chiari was small and he

expected no symptoms to arise from it.

> She hasn't had any of the classic signs for chiari. She see's him right now

every 3 months for checkups.

> I guess I'm wondering if I've just settled for what he said and didn't get a

offical second opinion.

> He's suppose to be great and so is the hospital. We do like him and feel like

we trust his wisdom.

> I read about everyone getting second opinions on things. Guess I'm wondering

if I'm doing the right thing.

> However, the day after our first apt with him, he was going in for clinical

meeting? I guess that's what you call it? Where all the drs talk and disscus

things, patients ect. Anyway he told us that he was going to show the other

nuerosurgens there, her MRI and see what they thought. When he got back with us

the prognosis was still the same.

> I thought that was kinda great, isn't that like more than 2 opinions?

> Am I just being peranoid?

>

> Mama to Kaitlyn 15ms

> 50* down to under 10* in 1st cast

>

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,

Being paranoid is part of this package! LOL Trust your gut.... If you trust this doc and his team regarding the chiari, then you are good to go. If there is a nagging doubt inside of you that says something doesn't sound quite right, then go get that second opinion. I think you already know, but just want the reassurance. For Noelle's scoli, I got 4 and 5 opinions, but with other diagnosis regarding her other issues, I was comfortable with just one great doc. Good luck! - Noelle's mommy, 3 1/2 years oldRochester NYCasted 8 times for 1 1/2 years9 months in braceRegressed and currently in cast 9reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III

From: <ohana_is_love@...>Subject: 2nd opinions"infantile scoliosis treatment " <infantile scoliosis treatment >Date: Friday, October 15, 2010, 12:56 AM

HiMy daughters brain/spinal MRI was reviewed by the radiologist that preformed the MRI and the cheif of neurosurgey at Detroit Childrens Hospital. The report found no evidence of a tether or anything wrong with her vertabre. However they found a small chiari 1 malformation. Which led us to the nuerosurgen. He read the MRI and said there was no sign of a tether and the chiari was small and he expected no symptoms to arise from it.She hasn't had any of the classic signs for chiari. She see's him right now every 3 months for checkups. I guess I'm wondering if I've just settled for what he said and didn't get a offical second opinion.He's suppose to be great and so is the hospital. We do like him and feel like we trust his wisdom.I read about everyone getting second opinions on things. Guess I'm wondering if I'm doing the right thing. However, the day after our first apt with him, he was going in for clinical meeting? I guess

that's what you call it? Where all the drs talk and disscus things, patients ect. Anyway he told us that he was going to show the other nuerosurgens there, her MRI and see what they thought. When he got back with us the prognosis was still the same.I thought that was kinda great, isn't that like more than 2 opinions?Am I just being peranoid?Mama to Kaitlyn 15ms50* down to under 10* in 1st cast

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