Re: Got my MRI report today

[Guest guest]

Hi Sharon...

I've never heard of a split spinal cord before. Do they actually do

surgery on it?

--

>

> Hi, all.

>

> I called the local hospital again today regarding picking up the

> radiologist's report for the MRI I had in December for Dr. Rand. I

wanted

> to find out if it would require less walking if I went in through

the back

> door. To my surprise the woman who answered the phone was the

mother of my

> " semi-adopted kid " , a 16-year-old neighbor who volunteers with me at

the

> local animal shelter, etc. She kindly offered to get me the whole

CD of the

> MRI and radiologist's report, and to bring it home to me when she

got off

> work. Yay! no walking.

>

> So......., I've read the report, and there was a surprise there. I

> apparently do have a tethered spinal cord, but it's also split

> (diastematomyelia) at the T9 level, something I didn't expect. At

first I

> was very pleased to finally have the information about what's going on

> inside me. Then it occured to me that that T9 split could be really

tough

> to get at. Of course it's within my fusion, so I suspect it would

be tough

> to access it by a posterior approach, and he might not like the

additional

> complication of accessing it anteriorly. When I saw him he talked

rather

> positively about de-tethering surgery, but he might not have thought it

> likely that it would be tethered as high as T9

>

> The radiologist also found some narrowing of the spinal canal at L2-L3.

> There could be other spina bifida-related anomalies, but the rod

obscured

> anything additional.

>

> I plan to call Dr. Rand's office tomorrow, but I'm getting a little

worried.

> It's been more than 4 weeks since he received the films, and I'm

starting to

> wonder if... No, I don't want to think it.

>

> I'll let you all know how that phone call goes.

>

> Sharon

>

[Guest guest]

, Honey, that wasn't exactly what I was hoping to hear from you!

I'm completely freaked out, and terrified that when I call Priscilla she'll

treat me to her famous bum's rush.

It's not that I really expected you to know about split spinal cord, since

your interest is scoliosis. Yes, they do operate on split spinal cords, and

people have gotten relief. I Googled it as well as " diastematomyelia " , and

found a few brief extracts including one about an elderly woman who

underwent surgery to de-tether a split spinal cord. Unfortunately the

abstract didn't include the location of the split, and I'm not about to pay

$30 to find out the full article doesn't say either.

The thing I'm freaked about is that the split is located at T9, within my

fused segment. I have a cousin with Marfan's who has a lot of pain and bone

spurring in her upper thorasic, and nobody wants to touch her, saying the

anterior approach is too risky. I know I need skills like Rand's to handle

the flatback aspect of my condition, but I also know he's enough in demand

that he doesn't have to touch anyone who needs anterior thorasic surgery.

By simply ignoring me until I go away, he cuts his chances of failure. Not

that I know he's doing that, but I saw what a model of efficiency Priscilla

is; the idea that she misplaced my MRI is hard for me to entertain.

This is the sort of condition that is usually treated in young children with

spina bifida, but when I was a young child they didn't have the neural

imaging or neurosurgery skills to handle this stuff, plus I had no

neurological symptoms at the time. They were generally tickled to see how

active I was and the main concern was keeping the scoliosis under control.

So......., I won't know anything more until I actually make the phone call.

I totally hate doing this while I'm sitting alone in my kitchen. Anybody

want to come sit with me while I call?

Sharon

[ ] Re: Got my MRI report today

> Hi Sharon...

>

> I've never heard of a split spinal cord before. Do they actually do

> surgery on it?

>

> --

>

>

>>

>> Hi, all.

>>

>> I called the local hospital again today regarding picking up the

>> radiologist's report for the MRI I had in December for Dr. Rand. I

> wanted

>> to find out if it would require less walking if I went in through

> the back

>> door. To my surprise the woman who answered the phone was the

> mother of my

>> " semi-adopted kid " , a 16-year-old neighbor who volunteers with me at

> the

>> local animal shelter, etc. She kindly offered to get me the whole

> CD of the

>> MRI and radiologist's report, and to bring it home to me when she

> got off

>> work. Yay! no walking.

>>

>> So......., I've read the report, and there was a surprise there. I

>> apparently do have a tethered spinal cord, but it's also split

>> (diastematomyelia) at the T9 level, something I didn't expect. At

> first I

>> was very pleased to finally have the information about what's going on

>> inside me. Then it occured to me that that T9 split could be really

> tough

>> to get at. Of course it's within my fusion, so I suspect it would

> be tough

>> to access it by a posterior approach, and he might not like the

> additional

>> complication of accessing it anteriorly. When I saw him he talked

> rather

>> positively about de-tethering surgery, but he might not have thought it

>> likely that it would be tethered as high as T9

>>

>> The radiologist also found some narrowing of the spinal canal at L2-L3.

>> There could be other spina bifida-related anomalies, but the rod

> obscured

>> anything additional.

>>

>> I plan to call Dr. Rand's office tomorrow, but I'm getting a little

> worried.

>> It's been more than 4 weeks since he received the films, and I'm

> starting to

>> wonder if... No, I don't want to think it.

>>

>> I'll let you all know how that phone call goes.

>>

>> Sharon

>>

>

>

>

>

>

>

>

> scoliosis veterans * flatback sufferers * revision candidates

>

[Guest guest]

Hi Sharon...

I can only imagine how stressful this is, but the sooner you find out,

the less the unknown can add to that stress. Let us know as soon as

you hear anything from Dr. Rand. I'm wondering if you need a

neurosurgeon for something like this.

Regards,

>

> , Honey, that wasn't exactly what I was hoping to hear from you!

>

> I'm completely freaked out, and terrified that when I call Priscilla

she'll

> treat me to her famous bum's rush.

>

> It's not that I really expected you to know about split spinal cord,

since

> your interest is scoliosis. Yes, they do operate on split spinal

cords, and

> people have gotten relief. I Googled it as well as

" diastematomyelia " , and

> found a few brief extracts including one about an elderly woman who

> underwent surgery to de-tether a split spinal cord. Unfortunately the

> abstract didn't include the location of the split, and I'm not about

to pay

> $30 to find out the full article doesn't say either.

>

> The thing I'm freaked about is that the split is located at T9,

within my

> fused segment. I have a cousin with Marfan's who has a lot of pain

and bone

> spurring in her upper thorasic, and nobody wants to touch her,

saying the

> anterior approach is too risky. I know I need skills like Rand's to

handle

> the flatback aspect of my condition, but I also know he's enough in

demand

> that he doesn't have to touch anyone who needs anterior thorasic

surgery.

> By simply ignoring me until I go away, he cuts his chances of

failure. Not

> that I know he's doing that, but I saw what a model of efficiency

Priscilla

> is; the idea that she misplaced my MRI is hard for me to entertain.

>

> This is the sort of condition that is usually treated in young

children with

> spina bifida, but when I was a young child they didn't have the neural

> imaging or neurosurgery skills to handle this stuff, plus I had no

> neurological symptoms at the time. They were generally tickled to

see how

> active I was and the main concern was keeping the scoliosis under

control.

>

> So......., I won't know anything more until I actually make the

phone call.

> I totally hate doing this while I'm sitting alone in my kitchen.

Anybody

> want to come sit with me while I call?

>

> Sharon

[Guest guest]

Sharon,

I am home thinking of you, so imagine that I am there with you. 's right I think; the fear of the unknown adds to stress. So make the call! I really am there beside you.

Bonnie

[ ] Re: Got my MRI report today> Hi Sharon...>> I've never heard of a split spinal cord before. Do they actually do> surgery on it?>> -->> >>>> Hi, all.>>>> I called the local hospital again today regarding picking up the>> radiologist's report for the MRI I had in December for Dr. Rand. I> wanted>> to find out if it would require less walking if I went in through> the back>> door. To my surprise the woman who answered the phone was the> mother of my>> "semi-adopted kid", a 16-year-old neighbor who volunteers with me at> the>> local animal shelter, etc. She kindly offered to get me the whole> CD of the>> MRI and radiologist's report, and to bring it home to me when she> got off>> work. Yay! no walking.>>>> So......., I've read the report, and there was a surprise there. I>> apparently do have a tethered spinal cord, but it's also split>> (diastematomyelia) at the T9 level, something I didn't expect. At> first I>> was very pleased to finally have the information about what's going on>> inside me. Then it occured to me that that T9 split could be really> tough>> to get at. Of course it's within my fusion, so I suspect it would> be tough>> to access it by a posterior approach, and he might not like the> additional>> complication of accessing it anteriorly. When I saw him he talked> rather>> positively about de-tethering surgery, but he might not have thought it>> likely that it would be tethered as high as T9>>>> The radiologist also found some narrowing of the spinal canal at L2-L3.>> There could be other spina bifida-related anomalies, but the rod> obscured>> anything additional.>>>> I plan to call Dr. Rand's office tomorrow, but I'm getting a little> worried.>> It's been more than 4 weeks since he received the films, and I'm> starting to>> wonder if... No, I don't want to think it.>>>> I'll let you all know how that phone call goes.>>>> Sharon>>>>>>>>>> scoliosis veterans * flatback sufferers * revision candidates>

[Guest guest]

Thanks, .

Yes, I was thinking I might need a neurosurgeon. Dr. Rand was actually

talking about sending me to one as part of the pre-surgical fact-finding.

There's at least one neurosurgeon in the Boston Spine Group. But now Ann

has just told us that he's leaving the group.

You're right. I won't know more until I call.

Here goes.

Sharon

[ ] Re: Got my MRI report today

> Hi Sharon...

>

> I can only imagine how stressful this is, but the sooner you find out,

> the less the unknown can add to that stress. Let us know as soon as

> you hear anything from Dr. Rand. I'm wondering if you need a

> neurosurgeon for something like this.

>

> Regards,

>

>

>

>>

>> , Honey, that wasn't exactly what I was hoping to hear from you!

>>

>> I'm completely freaked out, and terrified that when I call Priscilla

> she'll

>> treat me to her famous bum's rush.

>>

>> It's not that I really expected you to know about split spinal cord,

> since

>> your interest is scoliosis. Yes, they do operate on split spinal

> cords, and

>> people have gotten relief. I Googled it as well as

> " diastematomyelia " , and

>> found a few brief extracts including one about an elderly woman who

>> underwent surgery to de-tether a split spinal cord. Unfortunately the

>> abstract didn't include the location of the split, and I'm not about

> to pay

>> $30 to find out the full article doesn't say either.

>>

>> The thing I'm freaked about is that the split is located at T9,

> within my

>> fused segment. I have a cousin with Marfan's who has a lot of pain

> and bone

>> spurring in her upper thorasic, and nobody wants to touch her,

> saying the

>> anterior approach is too risky. I know I need skills like Rand's to

> handle

>> the flatback aspect of my condition, but I also know he's enough in

> demand

>> that he doesn't have to touch anyone who needs anterior thorasic

> surgery.

>> By simply ignoring me until I go away, he cuts his chances of

> failure. Not

>> that I know he's doing that, but I saw what a model of efficiency

> Priscilla

>> is; the idea that she misplaced my MRI is hard for me to entertain.

>>

>> This is the sort of condition that is usually treated in young

> children with

>> spina bifida, but when I was a young child they didn't have the neural

>> imaging or neurosurgery skills to handle this stuff, plus I had no

>> neurological symptoms at the time. They were generally tickled to

> see how

>> active I was and the main concern was keeping the scoliosis under

> control.

>>

>> So......., I won't know anything more until I actually make the

> phone call.

>> I totally hate doing this while I'm sitting alone in my kitchen.

> Anybody

>> want to come sit with me while I call?

>>

>> Sharon

>

>

>

>

>

>

> scoliosis veterans * flatback sufferers * revision candidates

>

[Guest guest]

Pips, a member of my site, has a blog here: http://warpedwoman.blogspot.com/ about her recent surgery - it was only a matter of weeks ago. She has diastematomyelia and would probably be very happy to correspond with you. Admittedly it may complicate matters that you have already had surgery in that area, but I would guess that a lot depends on whether anything actually needs to be done in that area - did the report specify that it's actually tethered there too?

Sorry you've had such a shock ( fingers crossed it's just another thing to notch up on the list but without it affecting what needs to be done.

titch-- " The older I grow the more I distrust the familiar doctrine that age brings wisdom. " - H. L. Mencken

[Guest guest]

Sharon, I think it for administrative issues that he is moving. As long

as the neurosurgeons are around I am sure they can work

collaboratively. In fact during my last surgery, I had a dural tear and

Rand grabbed the neurosurgeon (woodard) out of the next OR to stitch me

up..........and I didn't even get a bill from him!! Are you coming to

the dinner? Please say yes. Ann

[Guest guest]

Also...if you want me to ever come sit with you at home or in any of

the waiting rooms. Just let me know.

[Guest guest]

Hi, Titch.

Thanks so much for the encouragement, and for telling me about your acquaintance with diastematomyelia.

The report doesn't specify that it is tethered at the split, but I did read of a case where it was the cause of tethering. Does it always cause tethering? I don't know.

I'll make sure you all know as soon as I do.

Sharon

Re: [ ] Re: Got my MRI report today

Pips, a member of my site, has a blog here: http://warpedwoman.blogspot.com/ about her recent surgery - it was only a matter of weeks ago. She has diastematomyelia and would probably be very happy to correspond with you. Admittedly it may complicate matters that you have already had surgery in that area, but I would guess that a lot depends on whether anything actually needs to be done in that area - did the report specify that it's actually tethered there too?

Sorry you've had such a shock ( fingers crossed it's just another thing to notch up on the list but without it affecting what needs to be done.

titch-- "The older I grow the more I distrust the familiar doctrine that age brings wisdom." - H. L. Mencken

[Guest guest]

>Please let us all know what happens when you call her.....I hate to

hear that she is negative to folks. It is not necessary, we are in

bad shape as it is, we don't need the folks who we depend on being

alll nasty with us!!!ly, it pisses me off. I know that sounds

mean , it does, if we can't depend on them, goodness..what is this

world coming too!!!Have some empathy for us bad back folks!!, PA

> Thanks so much, Ann! Can you come RIGHT NOW?!!!

>

> Just kidding. You have to work, I'm an hour away, and I need to

call

> Priscilla right now.

>

> I would think he could always get a neurosurgeon to collaborate

with him, as

> you said.

>

> I'll let you know what I find out.

>

> Sharon

>

> [ ] Re: Got my MRI report today

>

>

> > Also...if you want me to ever come sit with you at home or in any

of

> > the waiting rooms. Just let me know.

> >

> >

> >

> >

> >

> >

> > scoliosis veterans * flatback sufferers * revision candidates

> >