Re: Doctors not Listening

[Guest guest]

Hi there

Sorry to hear about your daughter not feeling well. How old is she?

You are doing a great job as a Mom to be paying attention to all of this.

To be honest, I would be concerned too. Is the surgeon that you saw last week

the same one that did her surgery? Do you have access to the person that did her

surgery or the docs that saw her before/after surgery? They might have a better

understanding of what she's been like over the years.

What does her neurologist say?

I would see some or all of these:

-Pediatrician

-Urologist

-Neurologist

-Neurosurgeon

Maybe start by the pediatrician if you aren't getting much response from the

surgeon b/c the pediatrician might be able to help you find good specialists to

see and he/she can call and bug for an earlier appt whereas if you call some of

the specialists on your own the wait might be longer

Swallowing and eating difficulty seems unusual for tethered cord, maybe they

should get MRIs further up if they haven't been done before (I.e. head and

neck).

Best wishes!!

A

Doctors not Listening

Hello All,

My daughter had tethered spinal cord and had surgery

to De-tether one year ago. Following the surgery she

showed improvement in her ability to move, and seemed

to have no negative side effects.

However, since July she has started to show the

following symptoms:

1. occasionally losing bladder and bowel control,

2. her left foot has begun to twist and drag a bit

when she walks,

3. when she squats she will make herself " knockneed "

and cannot bend smoothly from the hip,

4. she cannot alternate feet walking down the stairs,

she will support her leg with her hand walking up the

stairs (she will hold the railing with one hand, and

put her hand one her knee as she walks up the stairs)

she has also always had difficulty swallowing and

eating, she seems to have a high pain tolerance and

does not sweat very well, and overheats easily. Do I

have reason to be concerned? I took her to a

neurosurgeon last week and the doctor completely

dismissed my concerns because my daughter also has a

seizure disorder and cannot communicate very well.

Should I try another doctor? Push for an MRI? Ask for

a urinedymanics? Or am I just overreacting?

__________________________________________________

[Guest guest]

Hi ,

I haven't written in awhile as I'm trying to get back to a " normal " life. I

had detethering surgery April of this year. I'm doing remarkably better but

still have some issues.

I would definitely be concerned and I would get second, third opinions. I

suffered unnecessarily for over 1 1/2 year because I kept being told that

nothing was wrong. I had surgery for Chiari Malformation and after that no one

wanted to know if there were any lingering problems.

I don't want to sound alarmist but I think it's important to get more help.

You know your daughter better than anyone. I don't think you are overreacting.

Push for the help you need and keep seeking out that help until you get some

answers.

Take care,

Wyoming

Decompressed (Chiari) May 02

Detethered (TSC) April 06

Not perfect but getting better!

Ferland wrote:

Hello All,

My daughter had tethered spinal cord and had surgery

to De-tether one year ago. Following the surgery she

showed improvement in her ability to move, and seemed

to have no negative side effects.

However, since July she has started to show the

following symptoms:

1. occasionally losing bladder and bowel control,

2. her left foot has begun to twist and drag a bit

when she walks,

3. when she squats she will make herself " knockneed "

and cannot bend smoothly from the hip,

4. she cannot alternate feet walking down the stairs,

she will support her leg with her hand walking up the

stairs (she will hold the railing with one hand, and

put her hand one her knee as she walks up the stairs)

she has also always had difficulty swallowing and

eating, she seems to have a high pain tolerance and

does not sweat very well, and overheats easily. Do I

have reason to be concerned? I took her to a

neurosurgeon last week and the doctor completely

dismissed my concerns because my daughter also has a

seizure disorder and cannot communicate very well.

Should I try another doctor? Push for an MRI? Ask for

a urinedymanics? Or am I just overreacting?

__________________________________________________

[Guest guest]

Sumchyk was found muttering these words:

Hi ,

What kind of issues are you still dealing with? I am curious because I was

dethered in March of '06 and I recently tried to eliminate some of the meds

I was on with very poor results. I was quite disappointed that 'normal'

for me may include a whole host of medication.

I have started dragging my right foot but on the upside my B & B seems to be

resolving. Go figure.

M.

> Hi ,

>

> I haven't written in awhile as I'm trying to get back to a " normal " life. I

had detethering surgery April of this year. I'm doing remarkably better but

still have some issues.

>

> I would definitely be concerned and I would get second, third opinions. I

suffered unnecessarily for over 1 1/2 year because I kept being told that

nothing was wrong. I had surgery for Chiari Malformation and after that no one

wanted to know if there were any lingering problems.

>

> I don't want to sound alarmist but I think it's important to get more help.

You know your daughter better than anyone. I don't think you are overreacting.

Push for the help you need and keep seeking out that help until you get some

answers.

>

> Take care,

>

> Wyoming

> Decompressed (Chiari) May 02

> Detethered (TSC) April 06

>

> Not perfect but getting better!

>

> Ferland wrote:

>

>

> Hello All,

>

> My daughter had tethered spinal cord and had surgery

> to De-tether one year ago. Following the surgery she

> showed improvement in her ability to move, and seemed

> to have no negative side effects.

>

> However, since July she has started to show the

> following symptoms:

>

> 1. occasionally losing bladder and bowel control,

> 2. her left foot has begun to twist and drag a bit

> when she walks,

> 3. when she squats she will make herself " knockneed "

> and cannot bend smoothly from the hip,

> 4. she cannot alternate feet walking down the stairs,

> she will support her leg with her hand walking up the

> stairs (she will hold the railing with one hand, and

> put her hand one her knee as she walks up the stairs)

>

> she has also always had difficulty swallowing and

> eating, she seems to have a high pain tolerance and

> does not sweat very well, and overheats easily. Do I

> have reason to be concerned? I took her to a

> neurosurgeon last week and the doctor completely

> dismissed my concerns because my daughter also has a

> seizure disorder and cannot communicate very well.

> Should I try another doctor? Push for an MRI? Ask for

> a urinedymanics? Or am I just overreacting?

>

>

>

[Guest guest]

Hi ,

I would follow your instincts. It is not unreasonable to get another opinion

(or two or three).

Best wishes,

, 's mom

Doctors not Listening

Hello All,

My daughter had tethered spinal cord and had surgery

to De-tether one year ago. Following the surgery she

showed improvement in her ability to move, and seemed

to have no negative side effects.

However, since July she has started to show the

following symptoms:

1. occasionally losing bladder and bowel control,

2. her left foot has begun to twist and drag a bit

when she walks,

3. when she squats she will make herself " knockneed "

and cannot bend smoothly from the hip,

4. she cannot alternate feet walking down the stairs,

she will support her leg with her hand walking up the

stairs (she will hold the railing with one hand, and

put her hand one her knee as she walks up the stairs)

she has also always had difficulty swallowing and

eating, she seems to have a high pain tolerance and

does not sweat very well, and overheats easily. Do I

have reason to be concerned? I took her to a

neurosurgeon last week and the doctor completely

dismissed my concerns because my daughter also has a

seizure disorder and cannot communicate very well.

Should I try another doctor? Push for an MRI? Ask for

a urinedymanics? Or am I just overreacting?

__________________________________________________

[Guest guest]

Well, we go for an MRI and urinedymanics this week,

but we went for a feeding assessment last week and she

tripped and fell and bruised her front teeth!! (the

irony is KILLING ME - she can hardly eat or speak in

the first place, and now she's hurt her mouth!!) now i

am on pins and needles to see if they suffered any

damage. but she's been so trippy and unstable, it was

just a matter of time. i can't wait to get to the

bottom of this!

Mel

--- Hays wrote:

> Hi ,

>

> I would follow your instincts. It is not

> unreasonable to get another opinion (or two or

> three).

>

> Best wishes,

> , 's mom

>

> Doctors not Listening

>

>

>

>

> Hello All,

>

> My daughter had tethered spinal cord and had

> surgery

> to De-tether one year ago. Following the surgery

> she

> showed improvement in her ability to move, and

> seemed

> to have no negative side effects.

>

> However, since July she has started to show the

> following symptoms:

>

> 1. occasionally losing bladder and bowel control,

> 2. her left foot has begun to twist and drag a bit

> when she walks,

> 3. when she squats she will make herself

> " knockneed "

> and cannot bend smoothly from the hip,

> 4. she cannot alternate feet walking down the

> stairs,

> she will support her leg with her hand walking up

> the

> stairs (she will hold the railing with one hand,

> and

> put her hand one her knee as she walks up the

> stairs)

>

> she has also always had difficulty swallowing and

> eating, she seems to have a high pain tolerance

> and

> does not sweat very well, and overheats easily. Do

> I

> have reason to be concerned? I took her to a

> neurosurgeon last week and the doctor completely

> dismissed my concerns because my daughter also has

> a

> seizure disorder and cannot communicate very well.

> Should I try another doctor? Push for an MRI? Ask

> for

> a urinedymanics? Or am I just overreacting?

>

>

>

> __________________________________________________

>