Re: Tethered cord+ fatty filum-PLEASE HELP

[Guest guest]

I'm not sure what exactly you're asking for help on, but I'll try.

I leaked urine a lot as a kid. I also walked like a duck because one leg was

shorter than the other due to an issue with musculature. I didn't tether until I

was 20 and had had a child, so those symptoms could be indicative of something

other than a tether. Does she have a spinal cord issue other than fatty filum?

For me, I have spina bifida and the lumbar/sacral area just happens to be where

the hole is and that just happens to be the area where the nerves that control

bladder continence are.  

Am I reading that you want to take your daughter elsewhere because the

neurosurgeon won't order an MRI before the appointment? I realize the drive is 3

hours, but can't you get an MRI closer to home and have the images sent to

wherever your daughter is seen? That way you won't have to drive three hours for

the appointment, then three hours for the MRI, and then (presumably) three hours

for a follow up appointment. 

Getting an MRI out of my insurance company is damn close to impossible, which

may be why the neurosurgeon won't pre-order one. It's hard enough to justify

once you've seen a patient and have good reason for it. I can't imagine a doctor

pulling it off before seeing the patient at all. That might be why they aren't

ordering one right now. I know for me, even with my history, it takes my docs

hours and hours of phone time. I doubt they would want to do that kind of work

if the doctor isn't absolutely certain.

I hope you get the answers you need to help your daughter. There isn't a day

that I deal with this that I am not thankful that I'm the one with the problem

and not one of my kids. It's a hard road to traverse, the balance between doing

enough and doing too much or not enough. I feel for you.

________________________________

To: tetheredspinalcord

Sent: Monday, February 27, 2012 2:29 PM

Subject: Tethered cord+ fatty filum-PLEASE HELP

 

Hi, My daughter is 4 years old now and had a MRI at 8 months old for

imperforated anus. At that time the MRI showed a minute fatty filum. She is

now leaking urine and has always been a toe walker. She had a vcug and renal

ultrasound last week. Normal results from that. We see the urologist for the

first time on Marc 5, so maybe she seen something. Maybe then she will order a

urodynamics test. Anyways, can that fatty filum get thicker or bigger or can

she become tethered since then?? We are seeing a neurosurgen on March 15. I

tried to have her order another MRI prior tho the appointment since it is a 3

hour drive. She said it would not change anything!!! I am so not sure about

that. Oh and at that MRI her conus was at normal level. Please help me, should

i try and go somewhere else???

Thanks,

[Guest guest]

Hi . Myself and my 6 yr old daughter both had a " normal " lying conus

(sitting right above L2). We have both had cord surgery with amazing results.

My daughter was mri'd at 2 years old b/c of abnormal gait, late walker and toe

walker, and she was weak in the legs, with a touch of spasticity. Her gait

looked similar to a child with cerebral palsy.

Her mri's showed a fatty filum and a chiari on the other end of the cord. She

was severely constipated, but did not have bladder issues. She used to cry as a

baby when we changed her diapers (when we lifted her legs to put the diaper

under her)and as she started talking, she would say, " Ow, ow, ow, " when we

changed her diapers. No one with a tethered cord likes to be pulled by the

legs. That was the first clue. We just didn't know it at the time.

Prior to cord surgery, she could not run, and could not even clear her feet from

the ground. She wore out the front of all of her shoes, b/c she dragged her

feet so bad. Every lumbar mri discussed how badly impacted she was with stool.

Urodynamics is a difficult test for such a young child. They are not able to

understand how to cooperate, in order to get accurate results.

A fatty filum can certainly be a clear indicator for tethered cord, when

symptoms match, however many neurosurgeons don't believe in tethered cord, when

the conus doesn't sit below L2.

Thankfully we had a neurosurgeon reach out to us and explained to me how

important it was to build a case and be an advocate for my daughter. No one

wanted to do cord surgery on her. No one wanted to do decompression on her

either for her Chiari, b/c she was very complicated. She has Ehlers Danlos also

and that put a spin on things too.

She wound up being detethered at 3 years old and on day 4 post op, she started

having effortless bowel movements and continues to every day since. She was

running in the yard one week post op. Her heel cords were no longer tight

either.

This diagnosis is very real. It is a shame that more neurosurgeons are not on

board with occult tethered cord. I was detethered last July and experienced

immediate relief of lower back pain, foot pain, tingling in feet, no more tight

heel cords,etc. I am a big advocate for tethered cord surgery, when one has a

clinical case with abnormal urodynamics, even when the conus does not sit below

L2.

My urodynamics test showed that my bladder was holding the equivalent of 8 cans

of soda, before I felt the smallest urge to urinate. I also learned that day

that it certainly was not normal to have to " push " to urinate. I have pushed my

whole life.

I was told to build a case for my daughter, and that is exactly what I did. The

surgery did so much for her, and I cannot imagine what would have played out

over time if she did not have the surgery at 3 years old. Prior, she used to

walk around the house complaining of very bad lower back pain and leg pain. She

also used to discuss a " ghost tickling her legs and feet " when she was 2. This

was tingling going on in her and that is how she described it.

We were told that a filum over 2mm in thickness can cause problems. A filum can

actually be thicker than what is seen on the mri. If you feel that your

daughter's symptoms are related to a possible tethered cord, and if you are not

taken seriously, please get her to a specialist who believes in and treats cases

of occult tethered cord.

~ Pam

>

> Hi, My daughter is 4 years old now and had a MRI at 8 months old for

imperforated anus. At that time the MRI showed a minute fatty filum. She is

now leaking urine and has always been a toe walker. She had a vcug and renal

ultrasound last week. Normal results from that. We see the urologist for the

first time on Marc 5, so maybe she seen something. Maybe then she will order a

urodynamics test. Anyways, can that fatty filum get thicker or bigger or can

she become tethered since then?? We are seeing a neurosurgen on March 15. I

tried to have her order another MRI prior tho the appointment since it is a 3

hour drive. She said it would not change anything!!! I am so not sure about

that. Oh and at that MRI her conus was at normal level. Please help me, should

i try and go somewhere else???

> Thanks,

>

[Guest guest]

,

I was diagnosed at age 28, turning 30 this year. It took them almost 3 years

since my fall to get diagnosed, and even when I did there were doubts.

I agree with Pam, you have to be an advocate, I think we have all had to push

for consideration.My initial MRI shows " nothing " , however when I had someone

else look they saw an issue and told me I needed a new one. It showed thickened

filum on the new MRI, BUT the neurosurgeon didn't like that it was an open MRI

so I had to have it redone. I almost went crazy

I had bladder issues all my life, and they really got bad after my fall, which

triggered pain. My doctor has since told me (and multiple others in PT etc) that

any sign of bladder issues should be a serious concern, period.

I say push for an MRI, if the neurosurgeon won't order it get your primary doc

to do so, at least you will have some kind of an idea of what you are looking at

prior to heading out there.

Has the neurosurgeon read the first MRI? Or just looked at the report? In my

case they were all staring at the report time and time again..

I hope things work out for your daughter, this can be a very hard thing to

navigate through, but please take heart that once you figure it out she will get

the care she needs.

Subject: Re: Tethered cord+ fatty filum-PLEASE HELP

To: tetheredspinalcord

Date: Tuesday, February 28, 2012, 8:07 AM

 

Hi . Myself and my 6 yr old daughter both had a " normal " lying conus

(sitting right above L2). We have both had cord surgery with amazing results.

My daughter was mri'd at 2 years old b/c of abnormal gait, late walker and toe

walker, and she was weak in the legs, with a touch of spasticity. Her gait

looked similar to a child with cerebral palsy.

Her mri's showed a fatty filum and a chiari on the other end of the cord. She

was severely constipated, but did not have bladder issues. She used to cry as a

baby when we changed her diapers (when we lifted her legs to put the diaper

under her)and as she started talking, she would say, " Ow, ow, ow, " when we

changed her diapers. No one with a tethered cord likes to be pulled by the

legs. That was the first clue. We just didn't know it at the time.

Prior to cord surgery, she could not run, and could not even clear her feet from

the ground. She wore out the front of all of her shoes, b/c she dragged her

feet so bad. Every lumbar mri discussed how badly impacted she was with stool.

Urodynamics is a difficult test for such a young child. They are not able to

understand how to cooperate, in order to get accurate results.

A fatty filum can certainly be a clear indicator for tethered cord, when

symptoms match, however many neurosurgeons don't believe in tethered cord, when

the conus doesn't sit below L2.

Thankfully we had a neurosurgeon reach out to us and explained to me how

important it was to build a case and be an advocate for my daughter. No one

wanted to do cord surgery on her. No one wanted to do decompression on her

either for her Chiari, b/c she was very complicated. She has Ehlers Danlos also

and that put a spin on things too.

She wound up being detethered at 3 years old and on day 4 post op, she started

having effortless bowel movements and continues to every day since. She was

running in the yard one week post op. Her heel cords were no longer tight

either.

This diagnosis is very real. It is a shame that more neurosurgeons are not on

board with occult tethered cord. I was detethered last July and experienced

immediate relief of lower back pain, foot pain, tingling in feet, no more tight

heel cords,etc. I am a big advocate for tethered cord surgery, when one has a

clinical case with abnormal urodynamics, even when the conus does not sit below

L2.

My urodynamics test showed that my bladder was holding the equivalent of 8 cans

of soda, before I felt the smallest urge to urinate. I also learned that day

that it certainly was not normal to have to " push " to urinate. I have pushed my

whole life.

I was told to build a case for my daughter, and that is exactly what I did. The

surgery did so much for her, and I cannot imagine what would have played out

over time if she did not have the surgery at 3 years old. Prior, she used to

walk around the house complaining of very bad lower back pain and leg pain. She

also used to discuss a " ghost tickling her legs and feet " when she was 2. This

was tingling going on in her and that is how she described it.

We were told that a filum over 2mm in thickness can cause problems. A filum can

actually be thicker than what is seen on the mri. If you feel that your

daughter's symptoms are related to a possible tethered cord, and if you are not

taken seriously, please get her to a specialist who believes in and treats cases

of occult tethered cord.

~ Pam

>

> Hi, My daughter is 4 years old now and had a MRI at 8 months old for

imperforated anus. At that time the MRI showed a minute fatty filum. She is

now leaking urine and has always been a toe walker. She had a vcug and renal

ultrasound last week. Normal results from that. We see the urologist for the

first time on Marc 5, so maybe she seen something. Maybe then she will order a

urodynamics test. Anyways, can that fatty filum get thicker or bigger or can

she become tethered since then?? We are seeing a neurosurgen on March 15. I

tried to have her order another MRI prior tho the appointment since it is a 3

hour drive. She said it would not change anything!!! I am so not sure about

that. Oh and at that MRI her conus was at normal level. Please help me, should

i try and go somewhere else???

> Thanks,

>

[Guest guest]

Hi ,  We are going to another neurosurgeon who agrees to do another MRI.

 Not sure on the date yet.  I will keep you posted.

Thanks,

Subject: Re: Tethered cord+ fatty filum-PLEASE HELP

To: tetheredspinalcord

Date: Tuesday, February 28, 2012, 8:07 AM

 

Hi . Myself and my 6 yr old daughter both had a " normal " lying conus

(sitting right above L2). We have both had cord surgery with amazing results.

My daughter was mri'd at 2 years old b/c of abnormal gait, late walker and toe

walker, and she was weak in the legs, with a touch of spasticity. Her gait

looked similar to a child with cerebral palsy.

Her mri's showed a fatty filum and a chiari on the other end of the cord. She

was severely constipated, but did not have bladder issues. She used to cry as a

baby when we changed her diapers (when we lifted her legs to put the diaper

under her)and as she started talking, she would say, " Ow, ow, ow, " when we

changed her diapers. No one with a tethered cord likes to be pulled by the

legs. That was the first clue. We just didn't know it at the time.

Prior to cord surgery, she could not run, and could not even clear her feet from

the ground. She wore out the front of all of her shoes, b/c she dragged her

feet so bad. Every lumbar mri discussed how badly impacted she was with stool.

Urodynamics is a difficult test for such a young child. They are not able to

understand how to cooperate, in order to get accurate results.

A fatty filum can certainly be a clear indicator for tethered cord, when

symptoms match, however many neurosurgeons don't believe in tethered cord, when

the conus doesn't sit below L2.

Thankfully we had a neurosurgeon reach out to us and explained to me how

important it was to build a case and be an advocate for my daughter. No one

wanted to do cord surgery on her. No one wanted to do decompression on her

either for her Chiari, b/c she was very complicated. She has Ehlers Danlos also

and that put a spin on things too.

She wound up being detethered at 3 years old and on day 4 post op, she started

having effortless bowel movements and continues to every day since. She was

running in the yard one week post op. Her heel cords were no longer tight

either.

This diagnosis is very real. It is a shame that more neurosurgeons are not on

board with occult tethered cord. I was detethered last July and experienced

immediate relief of lower back pain, foot pain, tingling in feet, no more tight

heel cords,etc. I am a big advocate for tethered cord surgery, when one has a

clinical case with abnormal urodynamics, even when the conus does not sit below

L2.

My urodynamics test showed that my bladder was holding the equivalent of 8 cans

of soda, before I felt the smallest urge to urinate. I also learned that day

that it certainly was not normal to have to " push " to urinate. I have pushed my

whole life.

I was told to build a case for my daughter, and that is exactly what I did. The

surgery did so much for her, and I cannot imagine what would have played out

over time if she did not have the surgery at 3 years old. Prior, she used to

walk around the house complaining of very bad lower back pain and leg pain. She

also used to discuss a " ghost tickling her legs and feet " when she was 2. This

was tingling going on in her and that is how she described it.

We were told that a filum over 2mm in thickness can cause problems. A filum can

actually be thicker than what is seen on the mri. If you feel that your

daughter's symptoms are related to a possible tethered cord, and if you are not

taken seriously, please get her to a specialist who believes in and treats cases

of occult tethered cord.

~ Pam

>

> Hi, My daughter is 4 years old now and had a MRI at 8 months old for

imperforated anus. At that time the MRI showed a minute fatty filum. She is

now leaking urine and has always been a toe walker. She had a vcug and renal

ultrasound last week. Normal results from that. We see the urologist for the

first time on Marc 5, so maybe she seen something. Maybe then she will order a

urodynamics test. Anyways, can that fatty filum get thicker or bigger or can

she become tethered since then?? We are seeing a neurosurgen on March 15. I

tried to have her order another MRI prior tho the appointment since it is a 3

hour drive. She said it would not change anything!!! I am so not sure about

that. Oh and at that MRI her conus was at normal level. Please help me, should

i try and go somewhere else???

> Thanks,

>

[Guest guest]

Hi Pam,

Wondering if you learned you had TC before or after your daughter was diagnosed

and who did your surgery? So glad you and your daughter are doing well.

Thanks,

> >

> > Hi, My daughter is 4 years old now and had a MRI at 8 months old for

imperforated anus. At that time the MRI showed a minute fatty filum. She is

now leaking urine and has always been a toe walker. She had a vcug and renal

ultrasound last week. Normal results from that. We see the urologist for the

first time on Marc 5, so maybe she seen something. Maybe then she will order a

urodynamics test. Anyways, can that fatty filum get thicker or bigger or can

she become tethered since then?? We are seeing a neurosurgen on March 15. I

tried to have her order another MRI prior tho the appointment since it is a 3

hour drive. She said it would not change anything!!! I am so not sure about

that. Oh and at that MRI her conus was at normal level. Please help me, should

i try and go somewhere else???

> > Thanks,

> >

>

[Guest guest]

Hi . I had no idea what my symptoms were related to my whole life, until

my daughter was diagnosed, and then it was a eureka type of moment.

Dr. Fraser did my cord surgery.

Happy to answer questions.

Thanks,

Pam

> > >

> > > Hi, My daughter is 4 years old now and had a MRI at 8 months old for

imperforated anus. At that time the MRI showed a minute fatty filum. She is

now leaking urine and has always been a toe walker. She had a vcug and renal

ultrasound last week. Normal results from that. We see the urologist for the

first time on Marc 5, so maybe she seen something. Maybe then she will order a

urodynamics test. Anyways, can that fatty filum get thicker or bigger or can

she become tethered since then?? We are seeing a neurosurgen on March 15. I

tried to have her order another MRI prior tho the appointment since it is a 3

hour drive. She said it would not change anything!!! I am so not sure about

that. Oh and at that MRI her conus was at normal level. Please help me, should

i try and go somewhere else???

> > > Thanks,

> > >

> >

>

[Guest guest]

Thanks Pam. Does Dr. Hendersen do open or scope surgery? How long since your

surgery? Were all you symptoms relieved?

> > > >

> > > > Hi, My daughter is 4 years old now and had a MRI at 8 months old for

imperforated anus. At that time the MRI showed a minute fatty filum. She is

now leaking urine and has always been a toe walker. She had a vcug and renal

ultrasound last week. Normal results from that. We see the urologist for the

first time on Marc 5, so maybe she seen something. Maybe then she will order a

urodynamics test. Anyways, can that fatty filum get thicker or bigger or can

she become tethered since then?? We are seeing a neurosurgen on March 15. I

tried to have her order another MRI prior tho the appointment since it is a 3

hour drive. She said it would not change anything!!! I am so not sure about

that. Oh and at that MRI her conus was at normal level. Please help me, should

i try and go somewhere else???

> > > > Thanks,

> > > >

> > >

> >

>

[Guest guest]

He does open surgery. I had surgery in July of 2011. Yes, all symptoms were

relieved very quickly, except still having to " push " to urinate at times.

I noticed that when I was on Diamox for a few months, that my urine flowed

normally and that I did not have to push to urinate, so it really makes me

wonder what the mechanism behind all of that is.

~ Pam

> > > > >

> > > > > Hi, My daughter is 4 years old now and had a MRI at 8 months old for

imperforated anus. At that time the MRI showed a minute fatty filum. She is

now leaking urine and has always been a toe walker. She had a vcug and renal

ultrasound last week. Normal results from that. We see the urologist for the

first time on Marc 5, so maybe she seen something. Maybe then she will order a

urodynamics test. Anyways, can that fatty filum get thicker or bigger or can

she become tethered since then?? We are seeing a neurosurgen on March 15. I

tried to have her order another MRI prior tho the appointment since it is a 3

hour drive. She said it would not change anything!!! I am so not sure about

that. Oh and at that MRI her conus was at normal level. Please help me, should

i try and go somewhere else???

> > > > > Thanks,

> > > > >

> > > >

> > >

> >

>