nsg in Louisville, any experience?

[Guest guest]

Try Dr.Moriarty, a good friend of mine has had great experience with him

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nsg in Louisville, any experience?

I just wanted to ask if anyone else had personal experience with Dr.

Gump of Louisville Kentucky. We saw him today and he said our

15 yo does have TCS and he recommended surgery to release, while not

pushing it. He said he has never had a patient get an infection from

surgery, at least that is what I understood him to say. He said the

type of tether was probably a fatty filum. He also said he thinks that

our son's Scheuermann's kyphosis has been partly caused by the TCS and

that trying to treat the SK without first dealing with the TCS would not

be likely to be successful. He said he does about 200 surgeries a year,

that seems like plenty for him to be quite skillful.

Does anyone have any suggestions or feedback for me?

Thanks,

--

Jamison Griebenow, skookie@...

Blessed with husband Greg, Zachary c/s 8/95,

Helena Joy HBAC 8/00, and Beren Gustav HB 4/04

~~~~~~~

Learn more about recovery from a difficult birth here:

http://www.midwiferytoday.com/articles/healing_trauma.asp

You can't pray for what you want, but what you have instead

You can only offer up your heart and ask that you be led

~ Newcomer

[Guest guest]

Hi ,

When you first mentioned that your son had SK, I looked it up - have never heard

of it. I wish I had saved the paper I read, but it did say that one of the

causes " can " be an underlying defect (ie: a neural tube defect).

If this is your first nsg, I would get a second opinion if it were my child, but

it does make sense to first fix the cause (tether) and then the result (SK).

From what I've read, a fatty filum is one of the " easier " tethers (not that any

are easy).

Kathy

nsg in Louisville, any experience?

I just wanted to ask if anyone else had personal experience with Dr.

Gump of Louisville Kentucky. We saw him today and he said our

15 yo does have TCS and he recommended surgery to release, while not

pushing it. He said he has never had a patient get an infection from

surgery, at least that is what I understood him to say. He said the

type of tether was probably a fatty filum. He also said he thinks that

our son's Scheuermann's kyphosis has been partly caused by the TCS and

that trying to treat the SK without first dealing with the TCS would not

be likely to be successful. He said he does about 200 surgeries a year,

that seems like plenty for him to be quite skillful.

Does anyone have any suggestions or feedback for me?

Thanks,

--

Jamison Griebenow, skookie@...

Blessed with husband Greg, Zachary c/s 8/95,

Helena Joy HBAC 8/00, and Beren Gustav HB 4/04

~~~~~~~

Learn more about recovery from a difficult birth here:

http://www.midwiferytoday.com/articles/healing_trauma.asp

You can't pray for what you want, but what you have instead

You can only offer up your heart and ask that you be led

~ Newcomer

[Guest guest]

DK Moulton wrote:

> Hi ,

>

> When you first mentioned that your son had SK, I looked it up - have never

heard of it. I wish I had saved the paper I read, but it did say that one of

the causes " can " be an underlying defect (ie: a neural tube defect).

>

> If this is your first nsg, I would get a second opinion if it were my child,

but it does make sense to first fix the cause (tether) and then the result (SK).

From what I've read, a fatty filum is one of the " easier " tethers (not that any

are easy).

>

> Kathy

Thank you for your advice Kathy -- that's kind of the question now -- do

we get a second opinion?

While I'm at it I'll ask here -- are there any images of normal and

tethered spinal columns online in some kind of public domain so I can

see them and compare them to what I saw today on the MRI?

That would be totally helpful!

Thanks all,

--

Jamison Griebenow, skookie@...

Blessed with husband Greg, Zachary c/s 8/95,

Helena Joy HBAC 8/00, and Beren Gustav HB 4/04

~~~~~~~

Learn more about recovery from a difficult birth here:

http://www.midwiferytoday.com/articles/healing_trauma.asp

You can't pray for what you want, but what you have instead

You can only offer up your heart and ask that you be led

~ Newcomer

[Guest guest]

Do a search at Google for tethered spinal cord or fatty filum and put images at

the end or just click images after you do the search.

I cannot recommend enough to you that you should get a second opinion. I would

say this even if the surgery was for bursitis - but especially when you are

considering a surgery on your child's spinal cord. I wish to God I had gotten a

second opinion - in my mind though there was a defect, I was told that it could

be corrected so I went ahead. I had no idea that there was another option or

what the risks were (in my case - I have Lipomeningocele and was diagnosed with

the birth defect at the age of 36).

Again, please, it won't take a lot of effort to get another opinion - just make

sure you have a good nsg for the second opinion. If your nsg is good, he will

recommend someone outside of his practice.

Kathy

Re: nsg in Louisville, any experience?

DK Moulton wrote:

> Hi ,

>

> When you first mentioned that your son had SK, I looked it up - have never

heard of it. I wish I had saved the paper I read, but it did say that one of the

causes " can " be an underlying defect (ie: a neural tube defect).

>

> If this is your first nsg, I would get a second opinion if it were my child,

but it does make sense to first fix the cause (tether) and then the result (SK).

From what I've read, a fatty filum is one of the " easier " tethers (not that any

are easy).

>

> Kathy

Thank you for your advice Kathy -- that's kind of the question now -- do

we get a second opinion?

While I'm at it I'll ask here -- are there any images of normal and

tethered spinal columns online in some kind of public domain so I can

see them and compare them to what I saw today on the MRI?

That would be totally helpful!

Thanks all,

--

Jamison Griebenow, skookie@...

Blessed with husband Greg, Zachary c/s 8/95,

Helena Joy HBAC 8/00, and Beren Gustav HB 4/04

~~~~~~~

Learn more about recovery from a difficult birth here:

http://www.midwiferytoday.com/articles/healing_trauma.asp

You can't pray for what you want, but what you have instead

You can only offer up your heart and ask that you be led

~ Newcomer

[Guest guest]

My NS would did not want to correct/treat my spondylolisthesis until my cord had

been dethered for two reasons -- one being he hoped maybe the TC surgery would

relieve my symptoms and not warrant a fusion, and second that when a fusion is

done if the cord had not been detethered it could have put more pull on my

spinal cord and caused more damage. So, although I am not familiar with " SK " ,

it does seem to be an indication for considering surgery if it has been possibly

caused by the TC. This makes sense to me.

I think a spinal leak is more of a risk than infection with this surgery,

although there is always the risk. Glad to hear your son has a thickened filum

as it is the simplest of TC surgeries to treat. That is the type of surgery I

had as an adult.

Dee

To: tetheredspinalcord

From: skookie@...

Date: Wed, 30 Mar 2011 20:51:54 -0400

Subject: nsg in Louisville, any experience?

I just wanted to ask if anyone else had personal experience with Dr.

Gump of Louisville Kentucky. We saw him today and he said our

15 yo does have TCS and he recommended surgery to release, while not

pushing it. He said he has never had a patient get an infection from

surgery, at least that is what I understood him to say. He said the

type of tether was probably a fatty filum. He also said he thinks that

our son's Scheuermann's kyphosis has been partly caused by the TCS and

that trying to treat the SK without first dealing with the TCS would not

be likely to be successful. He said he does about 200 surgeries a year,

that seems like plenty for him to be quite skillful.

Does anyone have any suggestions or feedback for me?

Thanks,

--

Jamison Griebenow, skookie@...

Blessed with husband Greg, Zachary c/s 8/95,

Helena Joy HBAC 8/00, and Beren Gustav HB 4/04

~~~~~~~

Learn more about recovery from a difficult birth here:

http://www.midwiferytoday.com/articles/healing_trauma.asp

You can't pray for what you want, but what you have instead

You can only offer up your heart and ask that you be led

~ Newcomer

[Guest guest]

Kathy, again thanks.

I am of your mind on the second opinion, esp. since I just read an article

online this a.m. by a pediatric neurosurgeon that addresses various situations,

and in my son's case, would NOT do surgery.

My husband is much more medically minded than I and not as inclined to, even

though we know all about unnecessary surgeries since I had an unneeded cesarean

myself. And this is obviously in many ways even more serious.

You wrote below " just make sure you have a good nsg for the second opinion. If

your nsg is good, he will recommend someone outside of his practice. " I'm

unclear what you meant, did you mean that we should ask the nsg we saw yesterday

for a referral to another nsg? We asked him about that and he said ask our

family doc for a referral, so I was just going to look about myself and see what

I came up with. But please clarify.

I think I saw someone saying that some ped nsg will give a second opinion even

without meeting you, ie they can review your MRI and records and tell you what

they think without your having to travel. did I dream that?

Thanks!

> > Hi ,

> >

> > When you first mentioned that your son had SK, I looked it up - have never

heard of it. I wish I had saved the paper I read, but it did say that one of the

causes " can " be an underlying defect (ie: a neural tube defect).

> >

> > If this is your first nsg, I would get a second opinion if it were my

child, but it does make sense to first fix the cause (tether) and then the

result (SK). From what I've read, a fatty filum is one of the " easier " tethers

(not that any are easy).

> >

> > Kathy

[Guest guest]

Wish I was still busy with our kids - they're all grown now. Daughters are 30,

29, and soon to be 28 and a 24 year old son (and two g-babies).

Kathy

Re: nsg in Louisville, any experience?

Kathy, thank you for taking the time to reply and provide advice and ideas. I

am sure you are a busy person with 4 kids and I truly appreciate it. Bless you.

>

[Guest guest]

,

Frim is in Chicago and Fuchs is @ Duke in NC. They will review your son's

films free of charge (I believe they still do this). You would just need to

contact them (typically their RN) and ask what you need to do).

Jenn

>

>

> Hi Jenn, thanks for your reply.

>

> Where are Drs. Frim and Fuchs?

>

> And when you all talk about getting a second opinion thru someone reviewing

> his MRI films that you don't see personally, how does that work? does

> insurance cover that or do you pay cash for their time?

>

> Thanks for explaining. Have never done anything like that before.

>

>

>

[Guest guest]

Oh I see, grown. Yes, that does help give me some perspective, as mine are 15,

10, and 7 and I'm right in the middle of homeschooling 3. I now understand what

they meant when they talked about the older they get the harder it is, when you

have babies you don't know how it could be harder. It is less sleep deprived,

but harder.... definitely OT, sorry.

>

> Wish I was still busy with our kids - they're all grown now. Daughters are

30, 29, and soon to be 28 and a 24 year old son (and two g-babies).

>

> Kathy

>

> Re: nsg in Louisville, any experience?

>

>

>

> Kathy, thank you for taking the time to reply and provide advice and ideas.

I am sure you are a busy person with 4 kids and I truly appreciate it. Bless

you.

>

>

[Guest guest]

Not good news for me, ! I have four boys ages 8,6,3, and 1. We homeschool

too. While I'm looking forward to getting more sleep once the little ones get

older, I hope things don't get harder with my big guys! BTW, I noticed Dr.

Crone is the chief over the neurosurgery department at Cinci. He would be a

good pick for a surgeon if you end up going that route.

Take care,

Holly

________________________________

To: tetheredspinalcord

Sent: Tue, April 12, 2011 9:36:00 PM

Subject: Re: nsg in Louisville, any experience?

Oh I see, grown. Yes, that does help give me some perspective, as mine are 15,

10, and 7 and I'm right in the middle of homeschooling 3. I now understand what

they meant when they talked about the older they get the harder it is, when you

have babies you don't know how it could be harder. It is less sleep deprived,

but harder.... definitely OT, sorry.

>

> Wish I was still busy with our kids - they're all grown now. Daughters are

30,

>29, and soon to be 28 and a 24 year old son (and two g-babies).

>

>

> Kathy

>

> Re: nsg in Louisville, any experience?

>

>

>

> Kathy, thank you for taking the time to reply and provide advice and ideas.

I

>am sure you are a busy person with 4 kids and I truly appreciate it. Bless you.

>

>