Re: nsg in Louisville, any experience?

[Guest guest]

Hello,

You could definitely get another opinion without seeing a nsg, I would not

recommend for the initial surgery though. There are intricacies within the

major deficits that are seen with a tethered spinal cord. To have a nsg

evaluate all possible problems that your son may/may not have, it would be best

if evaluated in person.

The nsg that did all of my untetherings never asked before the initial

untethering if I had x or y symptoms/problems as a child. If he had, I'm sure

it would have given him food for thought as it did the second opinion nsg I saw

before the second untethering. As I've mentioned before, the second opinion nsg

asked about specific issues that I may had as a child. I was so surprised that

medical problems I had as a child were from the tether. Like many members have

said, I just thought they were either normal or that they were unrelated to each

other. I also have a Chiari malformation and I thought everyone had a throbbing

pain in the back of their head (so severe that I have to grab my head when they

start) when they strained. It was amazing to me to be asked about certain

conditions/medical problems that I could have had as a child and did - and they

were related to this condition.

I answered yes to many of his questions and he said he was sorry because given

the problems I had as a child - but stopped when I reached full height (and then

many more appeared after the birth of our fourth child and a fall down our

cellar stairs) that he would not have recommended an initial untethering (pain

was not a complaint before my initial untethering). Now, I was stuck

(literally). I was experiencing more decline and pain; the damage was done - I

was untethered and my nervous system could not heal correctly.

My situation is *very* different than your son's. I was older, I have a

different type of tether, and had many more areas of decline. However,

hindsight is everything ...

To make sure the second opinion nsg is experienced and good - start with your

family doctor but call the doctor they refer you to and ask how much experience.

You don't want to waste your time or money. If you are near some of the

well-known nsgs then I would definitely start with one of them for a second

opinion (the only one I can think of is Frim and there's one in Boston - can't

think of his name though).

If you hear an opposing opinion, make sure to ask why and honestly, if it were

an opposing opinion, I would get a third opinion before deciding. It sounds

like you have time on your side and you truly want to make the most informed

decision you can. I am neither pro or against surgery - it's an extremely

individual decision based on symptoms and nature of the tether along with other

factors.

Yes, I was hoping that the nsg would recommend someone else to you (outside of

his practice). My nsg sent me to an amazing and heavily experienced nsg in

Boston before the second surgery as stated above. It's a testament to his

concern and ability to say, I need someone more experienced to give advice. A

month ago I had foot surgery, but had two opinions under my belt along with

other visits with orthos over the years to base my decision. I will never have

another surgery that is non-emergent without having second/third opinions.

Hang in there - this is complex and you are at the bottom of the learning curve

still. You'll be shocked at how much you will learn about the nervous system

and how your lexicon increases with each specialist visit and research paper you

read!

Kathy

Re: nsg in Louisville, any experience?

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]

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.

>

> Hello,

>

> You could definitely get another opinion without seeing a nsg, I would not

recommend for the initial surgery though. There are intricacies within the

major deficits that are seen with a tethered spinal cord. To have a nsg

evaluate all possible problems that your son may/may not have, it would be best

if evaluated in person.

>

> The nsg that did all of my untetherings never asked before the initial

untethering if I had x or y symptoms/problems as a child. If he had, I'm sure

it would have given him food for thought as it did the second opinion nsg I saw

before the second untethering. As I've mentioned before, the second opinion nsg

asked about specific issues that I may had as a child. I was so surprised that

medical problems I had as a child were from the tether. Like many members have

said, I just thought they were either normal or that they were unrelated to each

other. I also have a Chiari malformation and I thought everyone had a throbbing

pain in the back of their head (so severe that I have to grab my head when they

start) when they strained. It was amazing to me to be asked about certain

conditions/medical problems that I could have had as a child and did - and they

were related to this condition.

>

> I answered yes to many of his questions and he said he was sorry because given

the problems I had as a child - but stopped when I reached full height (and then

many more appeared after the birth of our fourth child and a fall down our

cellar stairs) that he would not have recommended an initial untethering (pain

was not a complaint before my initial untethering). Now, I was stuck

(literally). I was experiencing more decline and pain; the damage was done - I

was untethered and my nervous system could not heal correctly.

>

> My situation is *very* different than your son's. I was older, I have a

different type of tether, and had many more areas of decline. However,

hindsight is everything ...

>

> To make sure the second opinion nsg is experienced and good - start with your

family doctor but call the doctor they refer you to and ask how much experience.

You don't want to waste your time or money. If you are near some of the

well-known nsgs then I would definitely start with one of them for a second

opinion (the only one I can think of is Frim and there's one in Boston - can't

think of his name though).

>

> If you hear an opposing opinion, make sure to ask why and honestly, if it were

an opposing opinion, I would get a third opinion before deciding. It sounds

like you have time on your side and you truly want to make the most informed

decision you can. I am neither pro or against surgery - it's an extremely

individual decision based on symptoms and nature of the tether along with other

factors.

>

> Yes, I was hoping that the nsg would recommend someone else to you (outside of

his practice). My nsg sent me to an amazing and heavily experienced nsg in

Boston before the second surgery as stated above. It's a testament to his

concern and ability to say, I need someone more experienced to give advice. A

month ago I had foot surgery, but had two opinions under my belt along with

other visits with orthos over the years to base my decision. I will never have

another surgery that is non-emergent without having second/third opinions.

>

> Hang in there - this is complex and you are at the bottom of the learning

curve still. You'll be shocked at how much you will learn about the nervous

system and how your lexicon increases with each specialist visit and research

paper you read!

>

> Kathy

>

>

> Re: nsg in Louisville, any experience?

>

>

>

[Guest guest]

,

Not much more for me to say b/c Kathy said it all.

The only area that makes me think that surgery may be necessary is his SK.

This is similar to what Dee said about her spondy and TC. I didn't know what

it was and when I looked it up, they said it was in a similar/same family as

scoliosis. And TC is a definite cause of scoliosis. When the cord is tight

in someone still growing, if it is stretched as far as it can, then when the

body continues to grow and the spinal column get longer, it cannot grow

vertically (b/c the cord is stretched to the max) so as additional length is

added to the spinal column, it starts to twist (sideways in scoliosis and I

presume front to back with SK). The best way I can think to describe the

effect is think of making a necklace. You have a piece of string and as you

add beads to it, once you have filled it up, if you try to put more on, the

beads will move to the side. I'm sure there's a better visual example, but

can't think of one right now. If this is indeed the case, then surgery to

correct the SK would not work until his cord was untethered. And if his TC

is the cause of his SK, then it will continue to get worse if he continues

to get taller.

I would definitely make sure your second opinion has ample experience

dealing with TC; possibly even TC and SK (might be harder to find). I think

SK is probably more rare than scoliosis, and scoliosis is a much more common

side effect of untreated TC, so if you can't find one experienced with TC +

SK, then look for one experienced with TC and scoliosis.

Dr. Frim should be able to provide an opinion based on his films and

records. I would also recommend Dr. Fuchs - very exp with TC.

Jenn

>

>

> Hello,

>

> You could definitely get another opinion without seeing a nsg, I would not

> recommend for the initial surgery though. There are intricacies within the

> major deficits that are seen with a tethered spinal cord. To have a nsg

> evaluate all possible problems that your son may/may not have, it would be

> best if evaluated in person.

>

> The nsg that did all of my untetherings never asked before the initial

> untethering if I had x or y symptoms/problems as a child. If he had, I'm

> sure it would have given him food for thought as it did the second opinion

> nsg I saw before the second untethering. As I've mentioned before, the

> second opinion nsg asked about specific issues that I may had as a child. I

> was so surprised that medical problems I had as a child were from the

> tether. Like many members have said, I just thought they were either normal

> or that they were unrelated to each other. I also have a Chiari malformation

> and I thought everyone had a throbbing pain in the back of their head (so

> severe that I have to grab my head when they start) when they strained. It

> was amazing to me to be asked about certain conditions/medical problems that

> I could have had as a child and did - and they were related to this

> condition.

>

> I answered yes to many of his questions and he said he was sorry because

> given the problems I had as a child - but stopped when I reached full height

> (and then many more appeared after the birth of our fourth child and a fall

> down our cellar stairs) that he would not have recommended an initial

> untethering (pain was not a complaint before my initial untethering). Now, I

> was stuck (literally). I was experiencing more decline and pain; the damage

> was done - I was untethered and my nervous system could not heal correctly.

>

> My situation is *very* different than your son's. I was older, I have a

> different type of tether, and had many more areas of decline. However,

> hindsight is everything ...

>

> To make sure the second opinion nsg is experienced and good - start with

> your family doctor but call the doctor they refer you to and ask how much

> experience. You don't want to waste your time or money. If you are near some

> of the well-known nsgs then I would definitely start with one of them for a

> second opinion (the only one I can think of is Frim and there's one in

> Boston - can't think of his name though).

>

> If you hear an opposing opinion, make sure to ask why and honestly, if it

> were an opposing opinion, I would get a third opinion before deciding. It

> sounds like you have time on your side and you truly want to make the most

> informed decision you can. I am neither pro or against surgery - it's an

> extremely individual decision based on symptoms and nature of the tether

> along with other factors.

>

> Yes, I was hoping that the nsg would recommend someone else to you (outside

> of his practice). My nsg sent me to an amazing and heavily experienced nsg

> in Boston before the second surgery as stated above. It's a testament to his

> concern and ability to say, I need someone more experienced to give advice.

> A month ago I had foot surgery, but had two opinions under my belt along

> with other visits with orthos over the years to base my decision. I will

> never have another surgery that is non-emergent without having second/third

> opinions.

>

> Hang in there - this is complex and you are at the bottom of the learning

> curve still. You'll be shocked at how much you will learn about the nervous

> system and how your lexicon increases with each specialist visit and

> research paper you read!

>

> Kathy

>

>

> Re: nsg in Louisville, any experience?

>

> 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!

>

>

>

[Guest guest]

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.

>

> ,

>

> Not much more for me to say b/c Kathy said it all.

>

> The only area that makes me think that surgery may be necessary is his SK.

> This is similar to what Dee said about her spondy and TC. I didn't know what

> it was and when I looked it up, they said it was in a similar/same family as

> scoliosis. And TC is a definite cause of scoliosis. When the cord is tight

> in someone still growing, if it is stretched as far as it can, then when the

> body continues to grow and the spinal column get longer, it cannot grow

> vertically (b/c the cord is stretched to the max) so as additional length is

> added to the spinal column, it starts to twist (sideways in scoliosis and I

> presume front to back with SK). The best way I can think to describe the

> effect is think of making a necklace. You have a piece of string and as you

> add beads to it, once you have filled it up, if you try to put more on, the

> beads will move to the side. I'm sure there's a better visual example, but

> can't think of one right now. If this is indeed the case, then surgery to

> correct the SK would not work until his cord was untethered. And if his TC

> is the cause of his SK, then it will continue to get worse if he continues

> to get taller.

>

> I would definitely make sure your second opinion has ample experience

> dealing with TC; possibly even TC and SK (might be harder to find). I think

> SK is probably more rare than scoliosis, and scoliosis is a much more common

> side effect of untreated TC, so if you can't find one experienced with TC +

> SK, then look for one experienced with TC and scoliosis.

>

> Dr. Frim should be able to provide an opinion based on his films and

> records. I would also recommend Dr. Fuchs - very exp with TC.

>

> Jenn

>