Re: Update on Options for retethered cord

[Guest guest]

Yes, my dd is recovering very well. Thank you.  I would say she is near normal

with some tenderness at the surgical site but only if you touch it. Started

school Friday.  Got her a new classroom closer to the cafeteria and where most

things are going on.  Which will help.  She was not wanting to go to school as

it was too tiring for her to walk that far.  her classroom was way far away in

some modular classrooms.  Had to spend the 1st hr with her as she did not want

to go in. New kids and teacher. But, the good thing, I asked if it helped her to

be closer she said yes, so sounds like she will acclimate well again. 

 I think it is still too early to tell if she will regain some strength in her

legs or not but she thought her left leg seemed a little stronger once we got

home but now she can't tell.  there are times we think she is walking with less

of a waddle but then it is there. after seemingly tiny bit worse on her b & b the

1st week 2nd week no accidents then 2 days ago she pooped some in her pants when

she went to have bm. didn't quite make it.

I still am giving her the ditropan but am thinking of stopping it to see if the

surgery has helped yet.  She seems like she has not fallen as much.  So maybe

she is gaining some strength somewhere.  Wish it would be more obivous. lol.

Hopeful thinking.

Carol

________________________________

To: tetheredspinalcord

Sent: Sat, January 29, 2011 8:44:46 AM

Subject: Re: Update on Options for retethered cord

 

Hi Carol,

This group has really been incredibly helpful to us in allowing us to see a much

bigger picture of what's going on with our son. I feel so much more informed

and empowered. I thank everyone here simply for being here!

So your daughter had her surgery 2 weeks ago? She must be recovering quite a

bit by now. Will she go on to physically therapy soon? It will be wonderful if

she gains freer mobility and better b & b control!

You know, I realize we will have to adapt to changes due to all this, but like

you said, if a surgery can halt deterioration and ease a strain in progress,

then I think it is definitely worth the risk!

I look forward to keeping up with your daughters progress!

Holly

________________________________

To: tetheredspinalcord

Sent: Fri, January 28, 2011 6:25:03 PM

Subject: Re: Update on Options for retethered cord

Good for you! It took me getting a 2nd opinion too but before that she muscle

biopsy (and big ugle scar)that she probably wouldn't have gotten had the 1st one

would have thought she had tcs. He actually told me, she doesn't have tethered

cord!

The second one, agreed that with the emg and incontinence and bowel problems

that he called it fatty filum even though it was very small. The urologist

said it was not neurgenic bladder but he called it hyperactive/overactive

bladder and prescribed ditropan. This ditropan does help quite a bit.

Well, dd just had her tc release 2 weeks ago and the nsg said her filum was very

thick more than fat more like fibrous tissue. 2 1/2 to 3 mm. He said that she

did need the surgery and thinks her b & b will improve. He also thinks she

should be able to run some, which she cannot do at all she can't run, jump or

even walk well. she was falling more freguently and the pooping had just

started getting a little worse the last month before surgery.

In my opinion, most peds don't know anything about tcs, poor Adrain can't help

himself. He doesn't want to pee his pants.

If, you don't agree w/ this 2nd opinion doc then get a 3rd like mentioned here.

I am thankful to support groups, to encourage us and to give us the courage to

keep advocating for our children/family.

If, I had just gone along w/ the 1st nsg, she wouldn't have had the surgery done

and the thought that how much worse she could have gotten, upsets me. It is not

like we want our kids to go thru any kind of surgery. That is the last thing we

want but if it helps to prevent future problems.

Like as I said the last month prior to the surgery her symptoms did worsen. I

am so happy 2nd nsg decided to go ahead to do the tc release.

My dd was sort of in that gray area too.(Although, I didn't think so.) The mri

didn't show much, but when you put all the gray areas together, well.

Let us know how thing go.

carol

________________________________

To: tetheredspinalcord

Sent: Fri, January 28, 2011 2:26:27 PM

Subject: Re: Update on Options for retethered cord

Thanks to the good advice of you and others, we are getting a second opinion at

the Cincinnati Children's Hospital! We are feeling very hopeful about it!

The incontinence started to be a regular occurrence in the fall, and by regular

I mean very irregular but consistently happening. We apparently took him to see

the pediatrician for it on Oct. 1st. He wasn't very concerned because

wasn't bed wetting at night. However, he always wakes up in the morning and

immediately changes his pants, which is what he always does if he has a

leak,spasm, or whatever. Our doctor wanted him to try and hold it when he had

to go to the bathroom to strengthen his muscle tone. Well, I felt like turning

right back around to his office after trying that, because it wasn't even

possible for my son to do the exercise. But then he must have had a dry spell,

lol, which sometimes it is much worse than other times, and the holidays came up

and we were busy, but right after it turned the New Year, I just knew something

needed to be done. I knew we needed to consult with the NS. Like I've said

before, I think Dr. Pittman is a fine surgeon, but it would be nice to find

someone we feel a bit better about...

Thanks again!

________________________________

To: tetheredspinalcord

Sent: Fri, January 28, 2011 2:36:30 PM

Subject: Re: Update on Options for retethered cord

Hi Holly...As much of a cliche as it seems, it is true that often the best

help for clarifying one's options etc, is a second or third opinion. When

did the incontinence start? All NS look at this differently. My daughter

had two episodes (at night) plus increased pain in her legs and back and

he did a fourth surgery. Others are more cautious. I understand both ..

which doesn't help as it is all just too darn gray for my tastes!! Like

your plan a great deal ie clarifying that the decreased reflex is new. The

resident was an idiot .. all sorts of physicians make mistakes. We had a

urologist tell us my girl didn't have tethered cord because her arches were

normal..grrrrrrrrrr...Keep us posted. Randee

In a message dated 1/28/2011 12:32:53 P.M. Central Standard Time,

bluegrass.momma@... writes:

Hello group members,

My 8 year old son, , had his appt. with our NS this week concerning

the recent development and progression of his urinary incontinence. You

know, I thought I had a handle on things, I thought the timing was right for

this intervention, and I thought a surgery would be recommended and things

would go well. It still may go that way! But, the truth is, it may not. And

I was not prepared for that reality. But here we are.

Our NS, who is Dr. Pittman at University of Kentucky, does not at all seem

eager to do surgery and down right bleak about it. I don't know, he did

say if we had gotten to him sooner he would have been more hopeful surgery

would help, but not much more! He says the MRI won't tell him much unless

there is a cyst, otherwise it will look tethered regardless.

He recommended trying the Ditropan his Urologist prescribed and advised us

to consider cathing. Honestly, I am not digging that! I mean, come on, I

can hardly get my son to routinely try peeing in the toilet, let alone get

him to cath himself on a schedule. Plus he could get infections! He has

never had an infection up to this point, he only was retaining a small amount

of urine at his urology exam. I just don't think it is that bad yet. Maybe I

made it seem worse than it is, I got so used to everybody just shrugging

it off. Pittman seemed awfully concerned about the social implications of it

all, which somewhat surprised me. is homeschooled, and ironically,

most of his accidents occur at home.

My plan was to look into some incontinence pants and keep an emergency

backpack on hand. As far as the Ditropan goes, well, it's hard to explain how

we feel about that, being it's a pretty radical point of view. It's just

how we are, we buy organic foods, use filtered water, clean with chemical

free products, and when we catch a cold, we certainly don't take medicine,

other than chicken soup, vitamins and rest. You get the picture there? Not to

say we wouldn't take the drug if necessary, it just would not be a decision

taken lightly.

Then there is this business about kidney failure. Could it be that this is

the bigger concern, rather than social embarrassment? I'm uninformed of

the risks at this time, other than knowing they exists. Perhaps some of you

may be able to help me understand better.

Further more, an exam by a resident indicated had a diminished

reflex in his left lower extremity. The resident down played it saying it had

probably been present since birth or since his surgery. Well, I double

checked with his pediatrician, and it has never been noted up to this point.

The resident also got rather snappy with me when I was relaying words from

the urologist, he cut me off proclaiming the urologist should know if his

bladder is neurogenic or not. Well, he never used those words, he simply

said the wall of his bladder was a bit thick, but no more so than it had been

in the past before these incontinent episodes.

Anyway, an MRI has been scheduled with follow up the same day on Feb.

16th. I'm going to hand carry the urology notes to our appt, and I'm going to

confirm the reflex deficit had never been noted by previous exams. Also, I

am going to outline a more accurate time line of the progression of 's

urological symptoms, and keep a current log to determine a concise

baseline to be reviewed.

I figure, I can at least help create a clearer picture of what is going on

with my son for the NS, which may be important for making recommendations.

It really helps me to sound it all out with you all. Thanks for listening

again! And again, any experience or insight is always welcomed!

Sincerely,

Holly

>

> Hello everyone,

>

> While I'm thankful this group exists, I am sorry you all have been

affected by a tethered spinal cord.

>

> My son was born with a tethered spinal cord, it was tethered to a fatty

lipoma. He had a detethering surgery when he was only 4 months old as a

preventative measure. Now I wonder if that was the right thing to do, and of

course, I feel guilt being this is a deformity which happens in utero.

>

> But, regardless, my now 8 year old son is having the problems they said

he may have as he grew. He is having significant urinary incontinence

issues. Some days he doesn't have any episodes at all, but then other day he

will have 10 of them! I think it is effected by his bowels to some degree. It

took a while for our pediatrician to become convinced he needed to refer

him back to the neurosurgeon, but now we have an upcoming appointment. I

think he is a good surgeon, but not real warm and fuzzy, and honestly, I dread

going back to see him. I was hoping he was out of our lives forever! Now

I'm hoping he can fix everything!

>

> I'm not a big fan of surgery. I'm suspicious surgery may have even

caused these complications! It's the great unknown right now, until we have our

appointment. I don't even know if surgery will be recommended. But I'm

scared for my son. I hear things like, " may loose the ability to walk, " " pain, "

" scoliosis, " " sexual dysfunction, " and " foot deformity. "

> It makes living with incontinence seem like a walk in the park! One of

his feet is pigeon toed already, we realized at a recent doctor visit.

Otherwise, he is so athletically built and capable, all except for this. It may

change his life so dramatically.

> I just don't know, but I'm hoping for the best!

>

> Anyway, if anyone has similar experiences or any insight, please do

share!

>

> Thanks for listening,

>

> Holly

>

[Guest guest]

Carol,

What a brave little girl, and so fortunate to have you by her side!

It may very well be too soon to tell the long term effects of surgery.

My husband had an injury in 99' rendering his sciatic nerve traumatized, and he

developed something called RSD or CRPS. These letters stand for words which

describe the problem, but all it meant for us was pain, pain, and more

pain, excruciating pain! And no assurance it would ever end...

Well, after many months it did get better, and now it is bearable. For so many

years he walked lopsided, with a grimace on his face. But after almost 12

years, ever so slowly, he has straightened up and there are some muscles now

where there were none for so long. And it does seem that he continues to

recover even now.

He was running marathons before his accident, and in PT, the naive therapists

thought he wasn't trying hard enough. But the truth was, he couldn't will his

foot to work, just as I couldn't pray the pain away. It just took time, a long

time, he also did Reiki, something called Rolfing, and lots of massage which he

thinks helped the most.

So, although I am no expert, from my experience, nerves do take time to heal.

I really hope and pray your daughter has the best recovery possible!

Sincerely,

Holly

________________________________

To: tetheredspinalcord

Sent: Sat, January 29, 2011 8:09:07 PM

Subject: Re: Update on Options for retethered cord

Yes, my dd is recovering very well. Thank you. I would say she is near normal

with some tenderness at the surgical site but only if you touch it. Started

school Friday. Got her a new classroom closer to the cafeteria and where most

things are going on. Which will help. She was not wanting to go to school as

it was too tiring for her to walk that far. her classroom was way far away in

some modular classrooms. Had to spend the 1st hr with her as she did not want

to go in. New kids and teacher. But, the good thing, I asked if it helped her to

be closer she said yes, so sounds like she will acclimate well again.

I think it is still too early to tell if she will regain some strength in her

legs or not but she thought her left leg seemed a little stronger once we got

home but now she can't tell. there are times we think she is walking with less

of a waddle but then it is there. after seemingly tiny bit worse on her b & b the

1st week 2nd week no accidents then 2 days ago she pooped some in her pants when

she went to have bm. didn't quite make it.

I still am giving her the ditropan but am thinking of stopping it to see if the

surgery has helped yet. She seems like she has not fallen as much. So maybe

she is gaining some strength somewhere. Wish it would be more obivous. lol.

Hopeful thinking.

Carol

________________________________

To: tetheredspinalcord

Sent: Sat, January 29, 2011 8:44:46 AM

Subject: Re: Update on Options for retethered cord

Hi Carol,

This group has really been incredibly helpful to us in allowing us to see a much

bigger picture of what's going on with our son. I feel so much more informed

and empowered. I thank everyone here simply for being here!

So your daughter had her surgery 2 weeks ago? She must be recovering quite a

bit by now. Will she go on to physically therapy soon? It will be wonderful if

she gains freer mobility and better b & b control!

You know, I realize we will have to adapt to changes due to all this, but like

you said, if a surgery can halt deterioration and ease a strain in progress,

then I think it is definitely worth the risk!

I look forward to keeping up with your daughters progress!

Holly

________________________________

To: tetheredspinalcord

Sent: Fri, January 28, 2011 6:25:03 PM

Subject: Re: Update on Options for retethered cord

Good for you! It took me getting a 2nd opinion too but before that she muscle

biopsy (and big ugle scar)that she probably wouldn't have gotten had the 1st one

would have thought she had tcs. He actually told me, she doesn't have tethered

cord!

The second one, agreed that with the emg and incontinence and bowel problems

that he called it fatty filum even though it was very small. The urologist

said it was not neurgenic bladder but he called it hyperactive/overactive

bladder and prescribed ditropan. This ditropan does help quite a bit.

Well, dd just had her tc release 2 weeks ago and the nsg said her filum was very

thick more than fat more like fibrous tissue. 2 1/2 to 3 mm. He said that she

did need the surgery and thinks her b & b will improve. He also thinks she

should be able to run some, which she cannot do at all she can't run, jump or

even walk well. she was falling more freguently and the pooping had just

started getting a little worse the last month before surgery.

In my opinion, most peds don't know anything about tcs, poor Adrain can't help

himself. He doesn't want to pee his pants.

If, you don't agree w/ this 2nd opinion doc then get a 3rd like mentioned here.

I am thankful to support groups, to encourage us and to give us the courage to

keep advocating for our children/family.

If, I had just gone along w/ the 1st nsg, she wouldn't have had the surgery done

and the thought that how much worse she could have gotten, upsets me. It is not

like we want our kids to go thru any kind of surgery. That is the last thing we

want but if it helps to prevent future problems.

Like as I said the last month prior to the surgery her symptoms did worsen. I

am so happy 2nd nsg decided to go ahead to do the tc release.

My dd was sort of in that gray area too.(Although, I didn't think so.) The mri

didn't show much, but when you put all the gray areas together, well.

Let us know how thing go.

carol

________________________________

To: tetheredspinalcord

Sent: Fri, January 28, 2011 2:26:27 PM

Subject: Re: Update on Options for retethered cord

Thanks to the good advice of you and others, we are getting a second opinion at

the Cincinnati Children's Hospital! We are feeling very hopeful about it!

The incontinence started to be a regular occurrence in the fall, and by regular

I mean very irregular but consistently happening. We apparently took him to see

the pediatrician for it on Oct. 1st. He wasn't very concerned because

wasn't bed wetting at night. However, he always wakes up in the morning and

immediately changes his pants, which is what he always does if he has a

leak,spasm, or whatever. Our doctor wanted him to try and hold it when he had

to go to the bathroom to strengthen his muscle tone. Well, I felt like turning

right back around to his office after trying that, because it wasn't even

possible for my son to do the exercise. But then he must have had a dry spell,

lol, which sometimes it is much worse than other times, and the holidays came up

and we were busy, but right after it turned the New Year, I just knew something

needed to be done. I knew we needed to consult with the NS. Like I've said

before, I think Dr. Pittman is a fine surgeon, but it would be nice to find

someone we feel a bit better about...

Thanks again!

________________________________

To: tetheredspinalcord

Sent: Fri, January 28, 2011 2:36:30 PM

Subject: Re: Update on Options for retethered cord

Hi Holly...As much of a cliche as it seems, it is true that often the best

help for clarifying one's options etc, is a second or third opinion. When

did the incontinence start? All NS look at this differently. My daughter

had two episodes (at night) plus increased pain in her legs and back and

he did a fourth surgery. Others are more cautious. I understand both ..

which doesn't help as it is all just too darn gray for my tastes!! Like

your plan a great deal ie clarifying that the decreased reflex is new. The

resident was an idiot .. all sorts of physicians make mistakes. We had a

urologist tell us my girl didn't have tethered cord because her arches were

normal..grrrrrrrrrr...Keep us posted. Randee

In a message dated 1/28/2011 12:32:53 P.M. Central Standard Time,

bluegrass.momma@... writes:

Hello group members,

My 8 year old son, , had his appt. with our NS this week concerning

the recent development and progression of his urinary incontinence. You

know, I thought I had a handle on things, I thought the timing was right for

this intervention, and I thought a surgery would be recommended and things

would go well. It still may go that way! But, the truth is, it may not. And

I was not prepared for that reality. But here we are.

Our NS, who is Dr. Pittman at University of Kentucky, does not at all seem

eager to do surgery and down right bleak about it. I don't know, he did

say if we had gotten to him sooner he would have been more hopeful surgery

would help, but not much more! He says the MRI won't tell him much unless

there is a cyst, otherwise it will look tethered regardless.

He recommended trying the Ditropan his Urologist prescribed and advised us

to consider cathing. Honestly, I am not digging that! I mean, come on, I

can hardly get my son to routinely try peeing in the toilet, let alone get

him to cath himself on a schedule. Plus he could get infections! He has

never had an infection up to this point, he only was retaining a small amount

of urine at his urology exam. I just don't think it is that bad yet. Maybe I

made it seem worse than it is, I got so used to everybody just shrugging

it off. Pittman seemed awfully concerned about the social implications of it

all, which somewhat surprised me. is homeschooled, and ironically,

most of his accidents occur at home.

My plan was to look into some incontinence pants and keep an emergency

backpack on hand. As far as the Ditropan goes, well, it's hard to explain how

we feel about that, being it's a pretty radical point of view. It's just

how we are, we buy organic foods, use filtered water, clean with chemical

free products, and when we catch a cold, we certainly don't take medicine,

other than chicken soup, vitamins and rest. You get the picture there? Not to

say we wouldn't take the drug if necessary, it just would not be a decision

taken lightly.

Then there is this business about kidney failure. Could it be that this is

the bigger concern, rather than social embarrassment? I'm uninformed of

the risks at this time, other than knowing they exists. Perhaps some of you

may be able to help me understand better.

Further more, an exam by a resident indicated had a diminished

reflex in his left lower extremity. The resident down played it saying it had

probably been present since birth or since his surgery. Well, I double

checked with his pediatrician, and it has never been noted up to this point.

The resident also got rather snappy with me when I was relaying words from

the urologist, he cut me off proclaiming the urologist should know if his

bladder is neurogenic or not. Well, he never used those words, he simply

said the wall of his bladder was a bit thick, but no more so than it had been

in the past before these incontinent episodes.

Anyway, an MRI has been scheduled with follow up the same day on Feb.

16th. I'm going to hand carry the urology notes to our appt, and I'm going to

confirm the reflex deficit had never been noted by previous exams. Also, I

am going to outline a more accurate time line of the progression of 's

urological symptoms, and keep a current log to determine a concise

baseline to be reviewed.

I figure, I can at least help create a clearer picture of what is going on

with my son for the NS, which may be important for making recommendations.

It really helps me to sound it all out with you all. Thanks for listening

again! And again, any experience or insight is always welcomed!

Sincerely,

Holly

>

> Hello everyone,

>

> While I'm thankful this group exists, I am sorry you all have been

affected by a tethered spinal cord.

>

> My son was born with a tethered spinal cord, it was tethered to a fatty

lipoma. He had a detethering surgery when he was only 4 months old as a

preventative measure. Now I wonder if that was the right thing to do, and of

course, I feel guilt being this is a deformity which happens in utero.

>

> But, regardless, my now 8 year old son is having the problems they said

he may have as he grew. He is having significant urinary incontinence

issues. Some days he doesn't have any episodes at all, but then other day he

will have 10 of them! I think it is effected by his bowels to some degree. It

took a while for our pediatrician to become convinced he needed to refer

him back to the neurosurgeon, but now we have an upcoming appointment. I

think he is a good surgeon, but not real warm and fuzzy, and honestly, I dread

going back to see him. I was hoping he was out of our lives forever! Now

I'm hoping he can fix everything!

>

> I'm not a big fan of surgery. I'm suspicious surgery may have even

caused these complications! It's the great unknown right now, until we have our

appointment. I don't even know if surgery will be recommended. But I'm

scared for my son. I hear things like, " may loose the ability to walk, " " pain, "

" scoliosis, " " sexual dysfunction, " and " foot deformity. "

> It makes living with incontinence seem like a walk in the park! One of

his feet is pigeon toed already, we realized at a recent doctor visit.

Otherwise, he is so athletically built and capable, all except for this. It may

change his life so dramatically.

> I just don't know, but I'm hoping for the best!

>

> Anyway, if anyone has similar experiences or any insight, please do

share!

>

> Thanks for listening,

>

> Holly

>

[Guest guest]

Wow, that your husbands nerves are continues to recover after all these years.

And thanks for the encouragement.  My daughter gets some personalized PE at

school, called adaptive pe, well, that person mentioned that my daughters gait,

energy and speed (as she said it)has improved. she saw her for the 1st time

Tuesday since surgery.

Will try and keep you all posted on her progress good and bad.

carol

________________________________

To: tetheredspinalcord

Sent: Sun, January 30, 2011 7:16:26 AM

Subject: Re: Update on Options for retethered cord

 

Carol,

What a brave little girl, and so fortunate to have you by her side!

It may very well be too soon to tell the long term effects of surgery.

My husband had an injury in 99' rendering his sciatic nerve traumatized, and he

developed something called RSD or CRPS. These letters stand for words which

describe the problem, but all it meant for us was pain, pain, and more

pain, excruciating pain! And no assurance it would ever end...

Well, after many months it did get better, and now it is bearable. For so many

years he walked lopsided, with a grimace on his face. But after almost 12

years, ever so slowly, he has straightened up and there are some muscles now

where there were none for so long. And it does seem that he continues to

recover even now.

He was running marathons before his accident, and in PT, the naive therapists

thought he wasn't trying hard enough. But the truth was, he couldn't will his

foot to work, just as I couldn't pray the pain away. It just took time, a long

time, he also did Reiki, something called Rolfing, and lots of massage which he

thinks helped the most.

So, although I am no expert, from my experience, nerves do take time to heal.

I really hope and pray your daughter has the best recovery possible!

Sincerely,

Holly

________________________________

To: tetheredspinalcord

Sent: Sat, January 29, 2011 8:09:07 PM

Subject: Re: Update on Options for retethered cord

Yes, my dd is recovering very well. Thank you. I would say she is near normal

with some tenderness at the surgical site but only if you touch it. Started

school Friday. Got her a new classroom closer to the cafeteria and where most

things are going on. Which will help. She was not wanting to go to school as

it was too tiring for her to walk that far. her classroom was way far away in

some modular classrooms. Had to spend the 1st hr with her as she did not want

to go in. New kids and teacher. But, the good thing, I asked if it helped her to

be closer she said yes, so sounds like she will acclimate well again.

I think it is still too early to tell if she will regain some strength in her

legs or not but she thought her left leg seemed a little stronger once we got

home but now she can't tell. there are times we think she is walking with less

of a waddle but then it is there. after seemingly tiny bit worse on her b & b the

1st week 2nd week no accidents then 2 days ago she pooped some in her pants when

she went to have bm. didn't quite make it.

I still am giving her the ditropan but am thinking of stopping it to see if the

surgery has helped yet. She seems like she has not fallen as much. So maybe

she is gaining some strength somewhere. Wish it would be more obivous. lol.

Hopeful thinking.

Carol

________________________________

To: tetheredspinalcord

Sent: Sat, January 29, 2011 8:44:46 AM

Subject: Re: Update on Options for retethered cord

Hi Carol,

This group has really been incredibly helpful to us in allowing us to see a much

bigger picture of what's going on with our son. I feel so much more informed

and empowered. I thank everyone here simply for being here!

So your daughter had her surgery 2 weeks ago? She must be recovering quite a

bit by now. Will she go on to physically therapy soon? It will be wonderful if

she gains freer mobility and better b & b control!

You know, I realize we will have to adapt to changes due to all this, but like

you said, if a surgery can halt deterioration and ease a strain in progress,

then I think it is definitely worth the risk!

I look forward to keeping up with your daughters progress!

Holly

________________________________

To: tetheredspinalcord

Sent: Fri, January 28, 2011 6:25:03 PM

Subject: Re: Update on Options for retethered cord

Good for you! It took me getting a 2nd opinion too but before that she muscle

biopsy (and big ugle scar)that she probably wouldn't have gotten had the 1st one

would have thought she had tcs. He actually told me, she doesn't have tethered

cord!

The second one, agreed that with the emg and incontinence and bowel problems

that he called it fatty filum even though it was very small. The urologist

said it was not neurgenic bladder but he called it hyperactive/overactive

bladder and prescribed ditropan. This ditropan does help quite a bit.

Well, dd just had her tc release 2 weeks ago and the nsg said her filum was very

thick more than fat more like fibrous tissue. 2 1/2 to 3 mm. He said that she

did need the surgery and thinks her b & b will improve. He also thinks she

should be able to run some, which she cannot do at all she can't run, jump or

even walk well. she was falling more freguently and the pooping had just

started getting a little worse the last month before surgery.

In my opinion, most peds don't know anything about tcs, poor Adrain can't help

himself. He doesn't want to pee his pants.

If, you don't agree w/ this 2nd opinion doc then get a 3rd like mentioned here.

I am thankful to support groups, to encourage us and to give us the courage to

keep advocating for our children/family.

If, I had just gone along w/ the 1st nsg, she wouldn't have had the surgery done

and the thought that how much worse she could have gotten, upsets me. It is not

like we want our kids to go thru any kind of surgery. That is the last thing we

want but if it helps to prevent future problems.

Like as I said the last month prior to the surgery her symptoms did worsen. I

am so happy 2nd nsg decided to go ahead to do the tc release.

My dd was sort of in that gray area too.(Although, I didn't think so.) The mri

didn't show much, but when you put all the gray areas together, well.

Let us know how thing go.

carol

________________________________

To: tetheredspinalcord

Sent: Fri, January 28, 2011 2:26:27 PM

Subject: Re: Update on Options for retethered cord

Thanks to the good advice of you and others, we are getting a second opinion at

the Cincinnati Children's Hospital! We are feeling very hopeful about it!

The incontinence started to be a regular occurrence in the fall, and by regular

I mean very irregular but consistently happening. We apparently took him to see

the pediatrician for it on Oct. 1st. He wasn't very concerned because

wasn't bed wetting at night. However, he always wakes up in the morning and

immediately changes his pants, which is what he always does if he has a

leak,spasm, or whatever. Our doctor wanted him to try and hold it when he had

to go to the bathroom to strengthen his muscle tone. Well, I felt like turning

right back around to his office after trying that, because it wasn't even

possible for my son to do the exercise. But then he must have had a dry spell,

lol, which sometimes it is much worse than other times, and the holidays came up

and we were busy, but right after it turned the New Year, I just knew something

needed to be done. I knew we needed to consult with the NS. Like I've said

before, I think Dr. Pittman is a fine surgeon, but it would be nice to find

someone we feel a bit better about...

Thanks again!

________________________________

To: tetheredspinalcord

Sent: Fri, January 28, 2011 2:36:30 PM

Subject: Re: Update on Options for retethered cord

Hi Holly...As much of a cliche as it seems, it is true that often the best

help for clarifying one's options etc, is a second or third opinion. When

did the incontinence start? All NS look at this differently. My daughter

had two episodes (at night) plus increased pain in her legs and back and

he did a fourth surgery. Others are more cautious. I understand both ..

which doesn't help as it is all just too darn gray for my tastes!! Like

your plan a great deal ie clarifying that the decreased reflex is new. The

resident was an idiot .. all sorts of physicians make mistakes. We had a

urologist tell us my girl didn't have tethered cord because her arches were

normal..grrrrrrrrrr...Keep us posted. Randee

In a message dated 1/28/2011 12:32:53 P.M. Central Standard Time,

bluegrass.momma@... writes:

Hello group members,

My 8 year old son, , had his appt. with our NS this week concerning

the recent development and progression of his urinary incontinence. You

know, I thought I had a handle on things, I thought the timing was right for

this intervention, and I thought a surgery would be recommended and things

would go well. It still may go that way! But, the truth is, it may not. And

I was not prepared for that reality. But here we are.

Our NS, who is Dr. Pittman at University of Kentucky, does not at all seem

eager to do surgery and down right bleak about it. I don't know, he did

say if we had gotten to him sooner he would have been more hopeful surgery

would help, but not much more! He says the MRI won't tell him much unless

there is a cyst, otherwise it will look tethered regardless.

He recommended trying the Ditropan his Urologist prescribed and advised us

to consider cathing. Honestly, I am not digging that! I mean, come on, I

can hardly get my son to routinely try peeing in the toilet, let alone get

him to cath himself on a schedule. Plus he could get infections! He has

never had an infection up to this point, he only was retaining a small amount

of urine at his urology exam. I just don't think it is that bad yet. Maybe I

made it seem worse than it is, I got so used to everybody just shrugging

it off. Pittman seemed awfully concerned about the social implications of it

all, which somewhat surprised me. is homeschooled, and ironically,

most of his accidents occur at home.

My plan was to look into some incontinence pants and keep an emergency

backpack on hand. As far as the Ditropan goes, well, it's hard to explain how

we feel about that, being it's a pretty radical point of view. It's just

how we are, we buy organic foods, use filtered water, clean with chemical

free products, and when we catch a cold, we certainly don't take medicine,

other than chicken soup, vitamins and rest. You get the picture there? Not to

say we wouldn't take the drug if necessary, it just would not be a decision

taken lightly.

Then there is this business about kidney failure. Could it be that this is

the bigger concern, rather than social embarrassment? I'm uninformed of

the risks at this time, other than knowing they exists. Perhaps some of you

may be able to help me understand better.

Further more, an exam by a resident indicated had a diminished

reflex in his left lower extremity. The resident down played it saying it had

probably been present since birth or since his surgery. Well, I double

checked with his pediatrician, and it has never been noted up to this point.

The resident also got rather snappy with me when I was relaying words from

the urologist, he cut me off proclaiming the urologist should know if his

bladder is neurogenic or not. Well, he never used those words, he simply

said the wall of his bladder was a bit thick, but no more so than it had been

in the past before these incontinent episodes.

Anyway, an MRI has been scheduled with follow up the same day on Feb.

16th. I'm going to hand carry the urology notes to our appt, and I'm going to

confirm the reflex deficit had never been noted by previous exams. Also, I

am going to outline a more accurate time line of the progression of 's

urological symptoms, and keep a current log to determine a concise

baseline to be reviewed.

I figure, I can at least help create a clearer picture of what is going on

with my son for the NS, which may be important for making recommendations.

It really helps me to sound it all out with you all. Thanks for listening

again! And again, any experience or insight is always welcomed!

Sincerely,

Holly

>

> Hello everyone,

>

> While I'm thankful this group exists, I am sorry you all have been

affected by a tethered spinal cord.

>

> My son was born with a tethered spinal cord, it was tethered to a fatty

lipoma. He had a detethering surgery when he was only 4 months old as a

preventative measure. Now I wonder if that was the right thing to do, and of

course, I feel guilt being this is a deformity which happens in utero.

>

> But, regardless, my now 8 year old son is having the problems they said

he may have as he grew. He is having significant urinary incontinence

issues. Some days he doesn't have any episodes at all, but then other day he

will have 10 of them! I think it is effected by his bowels to some degree. It

took a while for our pediatrician to become convinced he needed to refer

him back to the neurosurgeon, but now we have an upcoming appointment. I

think he is a good surgeon, but not real warm and fuzzy, and honestly, I dread

going back to see him. I was hoping he was out of our lives forever! Now

I'm hoping he can fix everything!

>

> I'm not a big fan of surgery. I'm suspicious surgery may have even

caused these complications! It's the great unknown right now, until we have our

appointment. I don't even know if surgery will be recommended. But I'm

scared for my son. I hear things like, " may loose the ability to walk, " " pain, "

" scoliosis, " " sexual dysfunction, " and " foot deformity. "

> It makes living with incontinence seem like a walk in the park! One of

his feet is pigeon toed already, we realized at a recent doctor visit.

Otherwise, he is so athletically built and capable, all except for this. It may

change his life so dramatically.

> I just don't know, but I'm hoping for the best!

>

> Anyway, if anyone has similar experiences or any insight, please do

share!

>

> Thanks for listening,

>

> Holly

>

[Guest guest]

Yes, that is wonderful news!

Thank you for keeping us posted!

________________________________

To: tetheredspinalcord

Sent: Fri, February 4, 2011 11:46:06 AM

Subject: Re: Update on Options for retethered cord

Wonderful News!

Subject: Re: Update on Options for retethered cord

To: tetheredspinalcord

Date: Thursday, February 3, 2011, 4:36 PM

Wow, that your husbands nerves are continues to recover after all these years.

And thanks for the encouragement. My daughter gets some personalized PE at

school, called adaptive pe, well, that person mentioned that my daughters gait,

energy and speed (as she said it)has improved. she saw her for the 1st time

Tuesday since surgery.

Will try and keep you all posted on her progress good and bad.

carol

________________________________

To: tetheredspinalcord

Sent: Sun, January 30, 2011 7:16:26 AM

Subject: Re: Update on Options for retethered cord

Carol,

What a brave little girl, and so fortunate to have you by her side!

It may very well be too soon to tell the long term effects of surgery.

My husband had an injury in 99' rendering his sciatic nerve traumatized, and he

developed something called RSD or CRPS. These letters stand for words which

describe the problem, but all it meant for us was pain, pain, and more

pain, excruciating pain! And no assurance it would ever end...

Well, after many months it did get better, and now it is bearable. For so many

years he walked lopsided, with a grimace on his face. But after almost 12

years, ever so slowly, he has straightened up and there are some muscles now

where there were none for so long. And it does seem that he continues to

recover even now.

He was running marathons before his accident, and in PT, the naive therapists

thought he wasn't trying hard enough. But the truth was, he couldn't will his

foot to work, just as I couldn't pray the pain away. It just took time, a long

time, he also did Reiki, something called Rolfing, and lots of massage which he

thinks helped the most.

So, although I am no expert, from my experience, nerves do take time to heal.

I really hope and pray your daughter has the best recovery possible!

Sincerely,

Holly

________________________________

To: tetheredspinalcord

Sent: Sat, January 29, 2011 8:09:07 PM

Subject: Re: Update on Options for retethered cord

Yes, my dd is recovering very well. Thank you. I would say she is near normal

with some tenderness at the surgical site but only if you touch it. Started

school Friday. Got her a new classroom closer to the cafeteria and where most

things are going on. Which will help. She was not wanting to go to school as

it was too tiring for her to walk that far. her classroom was way far away in

some modular classrooms. Had to spend the 1st hr with her as she did not want

to go in. New kids and teacher. But, the good thing, I asked if it helped her to

be closer she said yes, so sounds like she will acclimate well again.

I think it is still too early to tell if she will regain some strength in her

legs or not but she thought her left leg seemed a little stronger once we got

home but now she can't tell. there are times we think she is walking with less

of a waddle but then it is there. after seemingly tiny bit worse on her b & b the

1st week 2nd week no accidents then 2 days ago she pooped some in her pants when

she went to have bm. didn't quite make it.

I still am giving her the ditropan but am thinking of stopping it to see if the

surgery has helped yet. She seems like she has not fallen as much. So maybe

she is gaining some strength somewhere. Wish it would be more obivous. lol.

Hopeful thinking.

Carol

________________________________

To: tetheredspinalcord

Sent: Sat, January 29, 2011 8:44:46 AM

Subject: Re: Update on Options for retethered cord

Hi Carol,

This group has really been incredibly helpful to us in allowing us to see a much

bigger picture of what's going on with our son. I feel so much more informed

and empowered. I thank everyone here simply for being here!

So your daughter had her surgery 2 weeks ago? She must be recovering quite a

bit by now. Will she go on to physically therapy soon? It will be wonderful if

she gains freer mobility and better b & b control!

You know, I realize we will have to adapt to changes due to all this, but like

you said, if a surgery can halt deterioration and ease a strain in progress,

then I think it is definitely worth the risk!

I look forward to keeping up with your daughters progress!

Holly

________________________________

To: tetheredspinalcord

Sent: Fri, January 28, 2011 6:25:03 PM

Subject: Re: Update on Options for retethered cord

Good for you! It took me getting a 2nd opinion too but before that she muscle

biopsy (and big ugle scar)that she probably wouldn't have gotten had the 1st one

would have thought she had tcs. He actually told me, she doesn't have tethered

cord!

The second one, agreed that with the emg and incontinence and bowel problems

that he called it fatty filum even though it was very small. The urologist

said it was not neurgenic bladder but he called it hyperactive/overactive

bladder and prescribed ditropan. This ditropan does help quite a bit.

Well, dd just had her tc release 2 weeks ago and the nsg said her filum was very

thick more than fat more like fibrous tissue. 2 1/2 to 3 mm. He said that she

did need the surgery and thinks her b & b will improve. He also thinks she

should be able to run some, which she cannot do at all she can't run, jump or

even walk well. she was falling more freguently and the pooping had just

started getting a little worse the last month before surgery.

In my opinion, most peds don't know anything about tcs, poor Adrain can't help

himself. He doesn't want to pee his pants.

If, you don't agree w/ this 2nd opinion doc then get a 3rd like mentioned here.

I am thankful to support groups, to encourage us and to give us the courage to

keep advocating for our children/family.

If, I had just gone along w/ the 1st nsg, she wouldn't have had the surgery done

and the thought that how much worse she could have gotten, upsets me. It is not

like we want our kids to go thru any kind of surgery. That is the last thing we

want but if it helps to prevent future problems.

Like as I said the last month prior to the surgery her symptoms did worsen. I

am so happy 2nd nsg decided to go ahead to do the tc release.

My dd was sort of in that gray area too.(Although, I didn't think so.) The mri

didn't show much, but when you put all the gray areas together, well.

Let us know how thing go.

carol

________________________________

To: tetheredspinalcord

Sent: Fri, January 28, 2011 2:26:27 PM

Subject: Re: Update on Options for retethered cord

Thanks to the good advice of you and others, we are getting a second opinion at

the Cincinnati Children's Hospital! We are feeling very hopeful about it!

The incontinence started to be a regular occurrence in the fall, and by regular

I mean very irregular but consistently happening. We apparently took him to see

the pediatrician for it on Oct. 1st. He wasn't very concerned because

wasn't bed wetting at night. However, he always wakes up in the morning and

immediately changes his pants, which is what he always does if he has a

leak,spasm, or whatever. Our doctor wanted him to try and hold it when he had

to go to the bathroom to strengthen his muscle tone. Well, I felt like turning

right back around to his office after trying that, because it wasn't even

possible for my son to do the exercise. But then he must have had a dry spell,

lol, which sometimes it is much worse than other times, and the holidays came up

and we were busy, but right after it turned the New Year, I just knew something

needed to be done. I knew we needed to consult with the NS. Like I've said

before, I think Dr. Pittman is a fine surgeon, but it would be nice to find

someone we feel a bit better about...

Thanks again!

________________________________

To: tetheredspinalcord

Sent: Fri, January 28, 2011 2:36:30 PM

Subject: Re: Update on Options for retethered cord

Hi Holly...As much of a cliche as it seems, it is true that often the best

help for clarifying one's options etc, is a second or third opinion. When

did the incontinence start? All NS look at this differently. My daughter

had two episodes (at night) plus increased pain in her legs and back and

he did a fourth surgery. Others are more cautious. I understand both ..

which doesn't help as it is all just too darn gray for my tastes!! Like

your plan a great deal ie clarifying that the decreased reflex is new. The

resident was an idiot .. all sorts of physicians make mistakes. We had a

urologist tell us my girl didn't have tethered cord because her arches were

normal..grrrrrrrrrr...Keep us posted. Randee

In a message dated 1/28/2011 12:32:53 P.M. Central Standard Time,

bluegrass.momma@... writes:

Hello group members,

My 8 year old son, , had his appt. with our NS this week concerning

the recent development and progression of his urinary incontinence. You

know, I thought I had a handle on things, I thought the timing was right for

this intervention, and I thought a surgery would be recommended and things

would go well. It still may go that way! But, the truth is, it may not. And

I was not prepared for that reality. But here we are.

Our NS, who is Dr. Pittman at University of Kentucky, does not at all seem

eager to do surgery and down right bleak about it. I don't know, he did

say if we had gotten to him sooner he would have been more hopeful surgery

would help, but not much more! He says the MRI won't tell him much unless

there is a cyst, otherwise it will look tethered regardless.

He recommended trying the Ditropan his Urologist prescribed and advised us

to consider cathing. Honestly, I am not digging that! I mean, come on, I

can hardly get my son to routinely try peeing in the toilet, let alone get

him to cath himself on a schedule. Plus he could get infections! He has

never had an infection up to this point, he only was retaining a small amount

of urine at his urology exam. I just don't think it is that bad yet. Maybe I

made it seem worse than it is, I got so used to everybody just shrugging

it off. Pittman seemed awfully concerned about the social implications of it

all, which somewhat surprised me. is homeschooled, and ironically,

most of his accidents occur at home.

My plan was to look into some incontinence pants and keep an emergency

backpack on hand. As far as the Ditropan goes, well, it's hard to explain how

we feel about that, being it's a pretty radical point of view. It's just

how we are, we buy organic foods, use filtered water, clean with chemical

free products, and when we catch a cold, we certainly don't take medicine,

other than chicken soup, vitamins and rest. You get the picture there? Not to

say we wouldn't take the drug if necessary, it just would not be a decision

taken lightly.

Then there is this business about kidney failure. Could it be that this is

the bigger concern, rather than social embarrassment? I'm uninformed of

the risks at this time, other than knowing they exists. Perhaps some of you

may be able to help me understand better.

Further more, an exam by a resident indicated had a diminished

reflex in his left lower extremity. The resident down played it saying it had

probably been present since birth or since his surgery. Well, I double

checked with his pediatrician, and it has never been noted up to this point.

The resident also got rather snappy with me when I was relaying words from

the urologist, he cut me off proclaiming the urologist should know if his

bladder is neurogenic or not. Well, he never used those words, he simply

said the wall of his bladder was a bit thick, but no more so than it had been

in the past before these incontinent episodes.

Anyway, an MRI has been scheduled with follow up the same day on Feb.

16th. I'm going to hand carry the urology notes to our appt, and I'm going to

confirm the reflex deficit had never been noted by previous exams. Also, I

am going to outline a more accurate time line of the progression of 's

urological symptoms, and keep a current log to determine a concise

baseline to be reviewed.

I figure, I can at least help create a clearer picture of what is going on

with my son for the NS, which may be important for making recommendations.

It really helps me to sound it all out with you all. Thanks for listening

again! And again, any experience or insight is always welcomed!

Sincerely,

Holly

>

> Hello everyone,

>

> While I'm thankful this group exists, I am sorry you all have been

affected by a tethered spinal cord.

>

> My son was born with a tethered spinal cord, it was tethered to a fatty

lipoma. He had a detethering surgery when he was only 4 months old as a

preventative measure. Now I wonder if that was the right thing to do, and of

course, I feel guilt being this is a deformity which happens in utero.

>

> But, regardless, my now 8 year old son is having the problems they said

he may have as he grew. He is having significant urinary incontinence

issues. Some days he doesn't have any episodes at all, but then other day he

will have 10 of them! I think it is effected by his bowels to some degree. It

took a while for our pediatrician to become convinced he needed to refer

him back to the neurosurgeon, but now we have an upcoming appointment. I

think he is a good surgeon, but not real warm and fuzzy, and honestly, I dread

going back to see him. I was hoping he was out of our lives forever! Now

I'm hoping he can fix everything!

>

> I'm not a big fan of surgery. I'm suspicious surgery may have even

caused these complications! It's the great unknown right now, until we have our

appointment. I don't even know if surgery will be recommended. But I'm

scared for my son. I hear things like, " may loose the ability to walk, " " pain, "

" scoliosis, " " sexual dysfunction, " and " foot deformity. "

> It makes living with incontinence seem like a walk in the park! One of

his feet is pigeon toed already, we realized at a recent doctor visit.

Otherwise, he is so athletically built and capable, all except for this. It may

change his life so dramatically.

> I just don't know, but I'm hoping for the best!

>

> Anyway, if anyone has similar experiences or any insight, please do

share!

>

> Thanks for listening,

>

> Holly

>