Re: looking into neurosurgeons

[Guest guest]

Hi Shauna,Was the MRI done of both your child's brain and spine? Some of us here have had to have 2 done for that reason- first the spine only, then both- to rule out other conditions, such as Chiari Malformation and tethered cord. We often suggest getting both at once, if possible. My son has a small syrinx cyst- a fluid filled cyst- in his spine that we will have to keep an eye on, to make sure it doesn't grow and cause later neurological problems. Many conditions can go along with scoliosis, but not always- it can be "just" the scoli- of course, that is certainly enough! When ours were done, they were also checking for, God forbid, brain tumors, which luckily were not found. It's usually a ruling out type of thing. Heidi, Bexon's Mommy, (3 years old, in 8th cast from

Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)From: Shauna <scolimail@...>infantile scoliosis treatment Sent: Wed, August 25, 2010 9:17:46 AMSubject: looking into neurosurgeons

Hello,

I am wanting to have a neurosurgeon review Kieran's scoliosis to ensure that no one has missed anything as of yet. It's been on the long list of things I want to do to ensure that we aren't missing anything as he does have a large curve for what appears to be virtually no reason. I think I have found the Canadian neurosurgeon I want to have review my son's condition with and I can get a referral. So what I need to do now is figure out exactly how to phrase why my son is being referred to this doctor. Any suggestions?? I was thinking possible tethered cord syndrome etc. I am not sure exactly how to have something like this phrased on a referral form. Our health system is a triage system and my family doctor will do the referral up however I ask. My reason for suspecting something to do with his spinal cord is his chiropractor prior to his being cast got great correction for his curve with her little manipulation pen. She used it around L5/S1 and I

could watch his curve jump from the high 70s to the 40s (he's actually been x-rayed at both (sitting at that time), his curve went up and down and then just kept going up, which is how it became progressive as it looked like it would correct for a while when he was younger.) He's had an MRI and apparently everything is fine, but better safe than sorry. Any other sage advice on this??

Shauna, mother of Kieran (2yrs old, 2nd cast), Kelsey and .

Vancouver Island, Canada

[Guest guest]

Hello Shauna, Are you looking at the neurosurgen at BCCH? We have not see them sisnce Thaddeus was in the NICU but I do know a bunch of people who have. He is a very good Dr. Hope you get the answers you are looking for. Mommy to Thaddeus Vancouver BCSent from my iPhoneOn Aug 25, 2010, at 9:17 AM, "Shauna" <scolimail@...> wrote:

Hello,

I am wanting to have a neurosurgeon review Kieran's scoliosis to ensure that no one has missed anything as of yet. It's been on the long list of things I want to do to ensure that we aren't missing anything as he does have a large curve for what appears to be virtually no reason. I think I have found the Canadian neurosurgeon I want to have review my son's condition with and I can get a referral. So what I need to do now is figure out exactly how to phrase why my son is being referred to this doctor. Any suggestions?? I was thinking possible tethered cord syndrome etc. I am not sure exactly how to have something like this phrased on a referral form. Our health system is a triage system and my family doctor will do the referral up however I ask. My reason for suspecting something to do with his spinal cord is his chiropractor prior to his being cast got great correction for his curve with her little manipulation pen. She used it around L5/S1 and I

could watch his curve jump from the high 70s to the 40s (he's actually been x-rayed at both (sitting at that time), his curve went up and down and then just kept going up, which is how it became progressive as it looked like it would correct for a while when he was younger.) He's had an MRI and apparently everything is fine, but better safe than sorry. Any other sage advice on this??

Shauna, mother of Kieran (2yrs old, 2nd cast), Kelsey and .

Vancouver Island, Canada

[Guest guest]

I think we will probably need another MRI as the one we have is missing some of

the sacrum and the coccyx, but I am sure we'll start with what we have. Thanks

for the info! I feel like I am in uncharted territory for us.

Shauna

>

> Hi Shauna,

>

> Was the MRI done of both your child's brain and spine? Some of us here have

had

> to have 2 done for that reason- first the spine only, then both- to rule out

> other conditions, such as Chiari Malformation and tethered cord. We often

> suggest getting both at once, if possible. My son has a small syrinx cyst- a

> fluid filled cyst- in his spine that we will have to keep an eye on, to make

> sure it doesn't grow and cause later neurological problems. Many conditions

can

> go along with scoliosis, but not always- it can be " just " the scoli- of

course,

> that is certainly enough! When ours were done, they were also checking for,

God

> forbid, brain tumors, which luckily were not found. It's usually a ruling out

> type of thing.

>

> Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners,

> currently down from 62 degrees to 20 in cast)

>

>

>

>

> ________________________________

> From: Shauna <scolimail@...>

> infantile scoliosis treatment

> Sent: Wed, August 25, 2010 9:17:46 AM

> Subject: looking into neurosurgeons

>

>

> Hello,

>

> I am wanting to have a neurosurgeon review Kieran's scoliosis to ensure that

no

> one has missed anything as of yet. It's been on the long list of things I

want

> to do to ensure that we aren't missing anything as he does have a large curve

> for what appears to be virtually no reason. I think I have found the Canadian

> neurosurgeon I want to have review my son's condition with and I can get a

> referral. So what I need to do now is figure out exactly how to phrase why my

> son is being referred to this doctor. Any suggestions?? I was thinking

> possible tethered cord syndrome etc. I am not sure exactly how to have

> something like this phrased on a referral form. Our health system is a triage

> system and my family doctor will do the referral up however I ask. My reason

for

> suspecting something to do with his spinal cord is his chiropractor prior to

his

> being cast got great correction for his curve with her little manipulation

pen.

> She used it around L5/S1 and I could watch his curve jump from the high 70s to

> the 40s (he's actually been x-rayed at both (sitting at that time), his curve

> went up and down and then just kept going up, which is how it became

progressive

> as it looked like it would correct for a while when he was younger.) He's had

> an MRI and apparently everything is fine, but better safe than sorry. Any

other

> sage advice on this??

>

> Shauna, mother of Kieran (2yrs old, 2nd cast), Kelsey and .

> Vancouver Island, Canada

>

[Guest guest]

If you would be interested in emailing the name of the doctor we would

definitely find it useful info! No one seems to see the need for Kieran to see

a neurosurgeon, as he appears to be super healthy and happy in all medical

interviews (and generally he is exactly that, especially since he got his cast

-- his quality of life went up a billion percent. No kidding.) We've had a lot

of resistance to him seeing specialists or getting MRIs in British Columbia. I

hand picked the specialist he is seeing based on what I researched on the

internet and had the family doctor do the referral. His orthos office is closed

until Monday and I didn't know what kind of resistance I might meet from him.

His first ortho was such a hinderance to us doing anything except wait and see

(eventually he did brace Kieran (poorly.)) I am hoping I have sent us to the

" right " neurosurgeon, as in someone who will help and is nice etc, but please do

email the doctor Thaddeus saw if you feel comfortable doing so.

What a long journey having a child who needs some extra care sends a family on!

My goodness my son's health makes me emotional! I can never find the words for

what he has and does go through. I know I am in one of the places where others

have a basis of understanding, but it still makes it tough. Thanks for the

reply, and I am glad that there is a neurosurgeon in BC is nice and a positive

experience. I hope Kieran will be meeting one like that too.

Shauna

>

> Hello,

>

> I am wanting to have a neurosurgeon review Kieran's scoliosis to ensure that

no one has missed anything as of yet. It's been on the long list of things I

want to do to ensure that we aren't missing anything as he does have a large

curve for what appears to be virtually no reason. I think I have found the

Canadian neurosurgeon I want to have review my son's condition with and I can

get a referral. So what I need to do now is figure out exactly how to phrase why

my son is being referred to this doctor. Any suggestions?? I was thinking

possible tethered cord syndrome etc. I am not sure exactly how to have something

like this phrased on a referral form. Our health system is a triage system and

my family doctor will do the referral up however I ask. My reason for suspecting

something to do with his spinal cord is his chiropractor prior to his being cast

got great correction for his curve with her little manipulation pen. She used it

around L5/S1 and I could

> watch his curve jump from the high 70s to the 40s (he's actually been x-rayed

at both (sitting at that time), his curve went up and down and then just kept

going up, which is how it became progressive as it looked like it would correct

for a while when he was younger.) He's had an MRI and apparently everything is

fine, but better safe than sorry. Any other sage advice on this??

>

> Shauna, mother of Kieran (2yrs old, 2nd cast), Kelsey and .

> Vancouver Island, Canada

>

[Guest guest]

Shauna I'll get all the info and email u private Sent from my iPhoneOn Aug 25, 2010, at 6:50 PM, "Shauna" <scolimail@...> wrote:

If you would be interested in emailing the name of the doctor we would definitely find it useful info! No one seems to see the need for Kieran to see a neurosurgeon, as he appears to be super healthy and happy in all medical interviews (and generally he is exactly that, especially since he got his cast -- his quality of life went up a billion percent. No kidding.) We've had a lot of resistance to him seeing specialists or getting MRIs in British Columbia. I hand picked the specialist he is seeing based on what I researched on the internet and had the family doctor do the referral. His orthos office is closed until Monday and I didn't know what kind of resistance I might meet from him. His first ortho was such a hinderance to us doing anything except wait and see (eventually he did brace Kieran (poorly.)) I am hoping I have sent us to the "right" neurosurgeon, as in someone who will help and is nice etc, but please do email the doctor

Thaddeus saw if you feel comfortable doing so.

What a long journey having a child who needs some extra care sends a family on! My goodness my son's health makes me emotional! I can never find the words for what he has and does go through. I know I am in one of the places where others have a basis of understanding, but it still makes it tough. Thanks for the reply, and I am glad that there is a neurosurgeon in BC is nice and a positive experience. I hope Kieran will be meeting one like that too.

Shauna

>

> Hello,

>

> I am wanting to have a neurosurgeon review Kieran's scoliosis to ensure that no one has missed anything as of yet. It's been on the long list of things I want to do to ensure that we aren't missing anything as he does have a large curve for what appears to be virtually no reason. I think I have found the Canadian neurosurgeon I want to have review my son's condition with and I can get a referral. So what I need to do now is figure out exactly how to phrase why my son is being referred to this doctor. Any suggestions?? I was thinking possible tethered cord syndrome etc. I am not sure exactly how to have something like this phrased on a referral form. Our health system is a triage system and my family doctor will do the referral up however I ask. My reason for suspecting something to do with his spinal cord is his chiropractor prior to his being cast got great correction for his curve with her little manipulation pen. She used it around L5/S1 and I

could

> watch his curve jump from the high 70s to the 40s (he's actually been x-rayed at both (sitting at that time), his curve went up and down and then just kept going up, which is how it became progressive as it looked like it would correct for a while when he was younger.) He's had an MRI and apparently everything is fine, but better safe than sorry. Any other sage advice on this??

>

> Shauna, mother of Kieran (2yrs old, 2nd cast), Kelsey and .

> Vancouver Island, Canada

>