Re: ISO pediatric nsg Louisville Kentucky area for 2nd opinion

[Guest guest]

Let me add, based on Jenn's advice, that someone experienced with TCS and with

Scheuermann's kyphosis or at least scoliosis, would be highly beneficial!

Thanks loads!

>

> Hi all,

>

> can anyone refer me to a pediatric nsg in the Louisville Kentucky area?

> I'm looking for someone to go to for a second opinion, and ideally,

> someone who is conservative as far as recommending TCS release surgery,

> ie who is not always going to recommend surgery necessarily.

>

> 15 yo ds diagnosed with TCS and we saw Dr. Gump of Gump and Moriarty on

> Wednesday afternoon. Were favorably impressed in general. He

> recommends TCS release surgery. He says Scheuermann's kyphosis likely

> caused by tension on cord, while allowing there are no guarantees of

> that. Currently this is the only symptom (if it is that) our son has.

> We are looking to get a second opinion before we dive into anything as

> invasive as this.

>

> We will travel in the area, so someone in Lexington, southern Indiana,

> Cincinnati, Indianapolis, etc, is within reach.

>

> Thanks for any replies.

>

>

> --

[Guest guest]

I assume scoliosis is common with TC. I know I had it as a kid, and now have a

curve again.

Subject: Re: ISO pediatric nsg Louisville Kentucky area for 2nd opinion

To: tetheredspinalcord

Date: Friday, April 1, 2011, 7:01 AM

 

Let me add, based on Jenn's advice, that someone experienced with TCS and

with Scheuermann's kyphosis or at least scoliosis, would be highly beneficial!

Thanks loads!

>

> Hi all,

>

> can anyone refer me to a pediatric nsg in the Louisville Kentucky area?

> I'm looking for someone to go to for a second opinion, and ideally,

> someone who is conservative as far as recommending TCS release surgery,

> ie who is not always going to recommend surgery necessarily.

>

> 15 yo ds diagnosed with TCS and we saw Dr. Gump of Gump and Moriarty on

> Wednesday afternoon. Were favorably impressed in general. He

> recommends TCS release surgery. He says Scheuermann's kyphosis likely

> caused by tension on cord, while allowing there are no guarantees of

> that. Currently this is the only symptom (if it is that) our son has.

> We are looking to get a second opinion before we dive into anything as

> invasive as this.

>

> We will travel in the area, so someone in Lexington, southern Indiana,

> Cincinnati, Indianapolis, etc, is within reach.

>

> Thanks for any replies.

>

>

> --

[Guest guest]

I thought the SK may be caused by the TC. How severe is the SK? (not that

if you give me a degree measurement, I would know how that ranks in

severity). But, given he has no other symptoms, another option to consider

is monitoring his SK very closely. If it continues to progress, then the

surgery sounds necessary (or if it is already pretty bad). I guess after my

experiences I'm a surgery-phobe. If he has no pain and no neuro deficits, I

would be hesitant to go in there and do something that could cause it. But

the SK, if it gets bad enough can cause it on its own (like scoliosis can)

and if its severe enough, straightening it back out has its own risks.

Just a thought. Sorry I can't recommend any MDs in that part of the US.

Jenn

>

>

> Hi all,

>

> can anyone refer me to a pediatric nsg in the Louisville Kentucky area?

> I'm looking for someone to go to for a second opinion, and ideally,

> someone who is conservative as far as recommending TCS release surgery,

> ie who is not always going to recommend surgery necessarily.

>

> 15 yo ds diagnosed with TCS and we saw Dr. Gump of Gump and Moriarty on

> Wednesday afternoon. Were favorably impressed in general. He

> recommends TCS release surgery. He says Scheuermann's kyphosis likely

> caused by tension on cord, while allowing there are no guarantees of

> that. Currently this is the only symptom (if it is that) our son has.

> We are looking to get a second opinion before we dive into anything as

> invasive as this.

>

> We will travel in the area, so someone in Lexington, southern Indiana,

> Cincinnati, Indianapolis, etc, is within reach.

>

> Thanks for any replies.

>

>

> --

> 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]

Jenn, thanks for the reply. It's close to 70% I believe. I hear you on not

wanting to go in, and possibly cause what you're trying to avoid. that's what's

making this decision difficult. We have a follow up Xray to see if the curve

has gotten worse, in May, since the original SK diagnosis in February. That

will help us see if it's slowing down or getting worse, and will help our son

decide how willing he is to use a brace. Thus, if it is getting worse, it

pretty much will decide it for us, I think. The other thing however, if that

it's pretty much impossible to say for *sure* that it is the TCS causing the SK.

Seems likely, but could be not.

Again thanks.

>

> >

> >

> > Hi all,

> >

> > can anyone refer me to a pediatric nsg in the Louisville Kentucky area?

> > I'm looking for someone to go to for a second opinion, and ideally,

> > someone who is conservative as far as recommending TCS release surgery,

> > ie who is not always going to recommend surgery necessarily.

> >

> > 15 yo ds diagnosed with TCS and we saw Dr. Gump of Gump and Moriarty on

> > Wednesday afternoon. Were favorably impressed in general. He

> > recommends TCS release surgery. He says Scheuermann's kyphosis likely

> > caused by tension on cord, while allowing there are no guarantees of

> > that. Currently this is the only symptom (if it is that) our son has.

> > We are looking to get a second opinion before we dive into anything as

> > invasive as this.

> >

> > We will travel in the area, so someone in Lexington, southern Indiana,

> > Cincinnati, Indianapolis, etc, is within reach.

> >

> > Thanks for any replies.

> >

> >

> > --

> > 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]

OK, all, sounds like nobody has a specific referral for me.

In that case, can anyone suggest to me how I can find a referral? where can I

start asking, that is not just looking in the yellow pages? ;-P Would like to

start from someone with personal experience.

Thanks so much.

>

> Hi all,

>

> can anyone refer me to a pediatric nsg in the Louisville Kentucky area?

> I'm looking for someone to go to for a second opinion, and ideally,

> someone who is conservative as far as recommending TCS release surgery,

> ie who is not always going to recommend surgery necessarily.

>

> 15 yo ds diagnosed with TCS and we saw Dr. Gump of Gump and Moriarty on

> Wednesday afternoon. Were favorably impressed in general. He

> recommends TCS release surgery. He says Scheuermann's kyphosis likely

> caused by tension on cord, while allowing there are no guarantees of

> that. Currently this is the only symptom (if it is that) our son has.

> We are looking to get a second opinion before we dive into anything as

> invasive as this.

>

> We will travel in the area, so someone in Lexington, southern Indiana,

> Cincinnati, Indianapolis, etc, is within reach.

>

[Guest guest]

Hi ,

We go to Cincinnati Children's Hospital. We saw Dr. Maugans for a second

opinion and we were happy with our care there. He answered all of our questions

and was very thorough in his exam and baseline acquisition, also now we are

seeing a Urologist at the same hospital which is helpful as far as communication

goes between the different disciplines concerning the whole picture of what is

going on with our son.

Hope this helps!

Holly

________________________________

To: tetheredspinalcord

Sent: Mon, April 11, 2011 8:11:39 PM

Subject: Re: ISO pediatric nsg Louisville Kentucky area for 2nd opinion

OK, all, sounds like nobody has a specific referral for me.

In that case, can anyone suggest to me how I can find a referral? where can I

start asking, that is not just looking in the yellow pages? ;-P Would like to

start from someone with personal experience.

Thanks so much.

>

> Hi all,

>

> can anyone refer me to a pediatric nsg in the Louisville Kentucky area?

> I'm looking for someone to go to for a second opinion, and ideally,

> someone who is conservative as far as recommending TCS release surgery,

> ie who is not always going to recommend surgery necessarily.

>

> 15 yo ds diagnosed with TCS and we saw Dr. Gump of Gump and Moriarty on

> Wednesday afternoon. Were favorably impressed in general. He

> recommends TCS release surgery. He says Scheuermann's kyphosis likely

> caused by tension on cord, while allowing there are no guarantees of

> that. Currently this is the only symptom (if it is that) our son has.

> We are looking to get a second opinion before we dive into anything as

> invasive as this.

>

> We will travel in the area, so someone in Lexington, southern Indiana,

> Cincinnati, Indianapolis, etc, is within reach.

>

[Guest guest]

Do you have a local children's hospital? They way I found my pedi NSG, is

that our CHOA (children's healthcare of ATL) has a referral line. I called

them and asked who they would refer a parent of a child with SB/TC to. They

gave me the name, happened to be the chief of pedi NSG. I called his office

and asked if they saw adults. They said no, but then let me leave a voice

mail for his RN. I talked to his RN - she talked to him - turns out he would

see adults if their cases were complex enough. Ultimately, he took my case.

That is my suggestion.

Jenn

>

>

> OK, all, sounds like nobody has a specific referral for me.

>

> In that case, can anyone suggest to me how I can find a referral? where can

> I start asking, that is not just looking in the yellow pages? ;-P Would like

> to start from someone with personal experience.

>

> Thanks so much.

>

>

>

>

> >

> > Hi all,

> >

> > can anyone refer me to a pediatric nsg in the Louisville Kentucky area?

> > I'm looking for someone to go to for a second opinion, and ideally,

> > someone who is conservative as far as recommending TCS release surgery,

> > ie who is not always going to recommend surgery necessarily.

> >

> > 15 yo ds diagnosed with TCS and we saw Dr. Gump of Gump and Moriarty on

> > Wednesday afternoon. Were favorably impressed in general. He

> > recommends TCS release surgery. He says Scheuermann's kyphosis likely

> > caused by tension on cord, while allowing there are no guarantees of

> > that. Currently this is the only symptom (if it is that) our son has.

> > We are looking to get a second opinion before we dive into anything as

> > invasive as this.

> >

> > We will travel in the area, so someone in Lexington, southern Indiana,

> > Cincinnati, Indianapolis, etc, is within reach.

> >

>

>

>

[Guest guest]

My 3 year old son also had his surgery done at Cincinnati Childrens Hospital a

few months ago. We see Dr. Crone in Neurosurgery. He did a fantastic job and my

son recovered very quickly. Feel free to PM me if you want any more info.

Beth

________________________________

To: tetheredspinalcord

Sent: Mon, April 11, 2011 8:47:43 PM

Subject: Re: Re: ISO pediatric nsg Louisville Kentucky area for 2nd

opinion

 

Hi ,

We go to Cincinnati Children's Hospital. We saw Dr. Maugans for a second

opinion and we were happy with our care there. He answered all of our questions

and was very thorough in his exam and baseline acquisition, also now we are

seeing a Urologist at the same hospital which is helpful as far as communication

goes between the different disciplines concerning the whole picture of what is

going on with our son.

Hope this helps!

Holly

________________________________

To: tetheredspinalcord

Sent: Mon, April 11, 2011 8:11:39 PM

Subject: Re: ISO pediatric nsg Louisville Kentucky area for 2nd opinion

OK, all, sounds like nobody has a specific referral for me.

In that case, can anyone suggest to me how I can find a referral? where can I

start asking, that is not just looking in the yellow pages? ;-P Would like to

start from someone with personal experience.

Thanks so much.

>

> Hi all,

>

> can anyone refer me to a pediatric nsg in the Louisville Kentucky area?

> I'm looking for someone to go to for a second opinion, and ideally,

> someone who is conservative as far as recommending TCS release surgery,

> ie who is not always going to recommend surgery necessarily.

>

> 15 yo ds diagnosed with TCS and we saw Dr. Gump of Gump and Moriarty on

> Wednesday afternoon. Were favorably impressed in general. He

> recommends TCS release surgery. He says Scheuermann's kyphosis likely

> caused by tension on cord, while allowing there are no guarantees of

> that. Currently this is the only symptom (if it is that) our son has.

> We are looking to get a second opinion before we dive into anything as

> invasive as this.

>

> We will travel in the area, so someone in Lexington, southern Indiana,

> Cincinnati, Indianapolis, etc, is within reach.

>