Any advice would be really appreciated.

[Guest guest]

Hi everyone,

Ella and I have just retuned from a 2 week hospital stay. I have come home

feeling completely confused and thought a chat with some of you guys may clear

my head just a little. I apologise if this is too long, but thank you immensely

for listening!

Last time i mailed we were heading to the uS for a holiday to Disney land. I had

thought about seeking opinions about her with dr's then but just wanted to

dedicate this time to a real treat for the family. We were only there for a week

and we all just needed maybe to chill.

Sine last dec Ella has pain in her lower back and or legs in varying degrees

every day. She is only able to walk short distances because the pain becomes too

much. She very reluctantly uses her wheel chair if she absolutely needs

to. Lately she has this weird thing happen where the pain becomes so unbearable

that she can't put her foot on the ground.If she sits down this can improve

pretty quickly. 

She had another MRI about 6 months ago that the specialists said indicated that

she has not re-tethered. The only diagnosis they have come up with is

Dysfunction of the lower Spinal cord for reasons unknown. She had nerve

conduction studies around the time of the last MRI and they showed some problem

with the nerve roots. We have been told that all investigations that can be

done have been and it is now about managing the pain in her everyday life. She

already takes 600 mg Neurontin, 25my Endep and 5 mg Vesicare.

A big part of this hospital visit involved Physiotherapy ( I know this is not

what it is called in  America.)The therapists were cocerned that her exercise

endurance had remarkably decreased and were concerned at preventing any muscle

waisting - which I can totally understand. So, we undertook a 2 week onslaught

of an equivalent to " Boot camp " !! OK I may be exaggerating a little but it was

certainly close.She was pushed way way past the first time she complained it was

hurting was expected to walk up 4 levels of stairs ( Stairs are a big prob for

her) and was asked to do a 15 min walk each day.God love her she solidered

on through the pain but had very little reserves left for just getting around

during the rest of the day and  couldnt get to sleep at night as the pain in her

became so bad.

As Ella could complete most of the tasks required the physios concluded that

Ella was pulling on Mums heart strings and that this was a big part of our

problem. I felt so angry and frustrated for my little girl who gives so much and

misses out on many things that she would love to do. When I picked her up from

the hospital school they asked me if Ella had a problem with her school as she

had not required her wheelchair at any time while she was there. Let me say that

this school takes place in 2 rooms and required hardly any walking and no

endurance whatsoever!

I spoke to her neurologist of my concerns and he felt very sorry that we had

been treated like this and I left wishing we had not asked for help and

just dealt with this for Ella and the best ways we know how.I have  many

questions for you all but  i guess a big one is . Can building up muscle

strength decrease nerve pain even though it exaccerbates symptoms? Ella was

constantly reminded that the extreme pain she was getting is not dangerous. That

is good to know but how far past the pain do you push yourselves? Isn't pacing

oneself more sensible? She has also been discouraged from using her wheelchair

at all. We hardly use it but found we were avoiding so many situations such as

shopping, going to museums etc that a therapist actually recommended we get one

for these occasions. It has taken years to get her to even use it in these

times, she hates it so much and now i feel this has all been undermined.

Are there lots of you guys out there who put up with judgements being made due

to the sometimes invisible nature of your condition?( Don't get me wrong I am in

no way wishing it was more visible) Sorry, just frustrated!!!

Regards,

Lani  

[Guest guest]

Hi Lani - am so sorry your daughter is having such a difficult time. The

experience that she had at the hospital with physio sounds awful. I can't give

you advice on a child, but as an adult I can give my experience with

physio/exercise. I do find the less I do the less I can do physically, so it is

important to maintain as good a fitness level as possible - however - I do not

agree with the pain your daughter was put through. I have hurt myself so many

times doing rehab exercises over the years. If I push myself and do to much it

does NOT make me better!!!! It will just make me worse. I do find if my core

muscles are strong I have less back pain, and if I exercise my legs with

resistance (I do pilates on the reformer) my leg strength is noticeably better.

I have had a wonderful physiotherapist the last 4 years who has helped me become

much more functional but we did it at a very SLOW pace. For me now, I do what

doesn't hurt me so much that I suffer a set-back. I can do short walks (eg 15

min), can do pilates and swim. I am wondering about swimming therapy for your

daughter? Swimming is my saving grace -- I can swim for 1/2 hour with little

pain -- it is non-weight bearing and I can keep my low back relatively stable -

it's the only way I can get some cardio. I used to be able to cycle for hours

when I was younger when I couldn't walk very far. Can she ride a bike of some

sort? Just some ideas.

Dee

To: tetheredspinalcord ; LMC-TCS

From: ishmyer95@...

Date: Fri, 26 Mar 2010 03:52:51 -0700

Subject: Any advice would be really appreciated.

Hi everyone,

Ella and I have just retuned from a 2 week hospital stay. I have come home

feeling completely confused and thought a chat with some of you guys may clear

my head just a little. I apologise if this is too long, but thank you immensely

for listening!

Last time i mailed we were heading to the uS for a holiday to Disney land. I had

thought about seeking opinions about her with dr's then but just wanted to

dedicate this time to a real treat for the family. We were only there for a week

and we all just needed maybe to chill.

Sine last dec Ella has pain in her lower back and or legs in varying degrees

every day. She is only able to walk short distances because the pain becomes too

much. She very reluctantly uses her wheel chair if she absolutely needs to.

Lately she has this weird thing happen where the pain becomes so unbearable that

she can't put her foot on the ground.If she sits down this can improve pretty

quickly.

She had another MRI about 6 months ago that the specialists said indicated that

she has not re-tethered. The only diagnosis they have come up with is

Dysfunction of the lower Spinal cord for reasons unknown. She had nerve

conduction studies around the time of the last MRI and they showed some problem

with the nerve roots. We have been told that all investigations that can be done

have been and it is now about managing the pain in her everyday life. She

already takes 600 mg Neurontin, 25my Endep and 5 mg Vesicare.

A big part of this hospital visit involved Physiotherapy ( I know this is not

what it is called in America.)The therapists were cocerned that her exercise

endurance had remarkably decreased and were concerned at preventing any muscle

waisting - which I can totally understand. So, we undertook a 2 week onslaught

of an equivalent to " Boot camp " !! OK I may be exaggerating a little but it was

certainly close.She was pushed way way past the first time she complained it was

hurting was expected to walk up 4 levels of stairs ( Stairs are a big prob for

her) and was asked to do a 15 min walk each day.God love her she solidered on

through the pain but had very little reserves left for just getting around

during the rest of the day and couldnt get to sleep at night as the pain in her

became so bad.

As Ella could complete most of the tasks required the physios concluded that

Ella was pulling on Mums heart strings and that this was a big part of our

problem. I felt so angry and frustrated for my little girl who gives so much and

misses out on many things that she would love to do. When I picked her up from

the hospital school they asked me if Ella had a problem with her school as she

had not required her wheelchair at any time while she was there. Let me say that

this school takes place in 2 rooms and required hardly any walking and no

endurance whatsoever!

I spoke to her neurologist of my concerns and he felt very sorry that we had

been treated like this and I left wishing we had not asked for help and just

dealt with this for Ella and the best ways we know how.I have many questions

for you all but i guess a big one is . Can building up muscle strength decrease

nerve pain even though it exaccerbates symptoms? Ella was constantly reminded

that the extreme pain she was getting is not dangerous. That is good to know but

how far past the pain do you push yourselves? Isn't pacing oneself more

sensible? She has also been discouraged from using her wheelchair at all. We

hardly use it but found we were avoiding so many situations such as shopping,

going to museums etc that a therapist actually recommended we get one for these

occasions. It has taken years to get her to even use it in these times, she

hates it so much and now i feel this has all been undermined.

Are there lots of you guys out there who put up with judgements being made due

to the sometimes invisible nature of your condition?( Don't get me wrong I am in

no way wishing it was more visible) Sorry, just frustrated!!!

Regards,

Lani

[Guest guest]

Hi Lani - am so sorry your daughter is having such a difficult time. The

experience that she had at the hospital with physio sounds awful. I can't give

you advice on a child, but as an adult I can give my experience with

physio/exercise. I do find the less I do the less I can do physically, so it is

important to maintain as good a fitness level as possible - however - I do not

agree with the pain your daughter was put through. I have hurt myself so many

times doing rehab exercises over the years. If I push myself and do to much it

does NOT make me better!!!! It will just make me worse. I do find if my core

muscles are strong I have less back pain, and if I exercise my legs with

resistance (I do pilates on the reformer) my leg strength is noticeably better.

I have had a wonderful physiotherapist the last 4 years who has helped me become

much more functional but we did it at a very SLOW pace. For me now, I do what

doesn't hurt me so much that I suffer a set-back. I can do short walks (eg 15

min), can do pilates and swim. I am wondering about swimming therapy for your

daughter? Swimming is my saving grace -- I can swim for 1/2 hour with little

pain -- it is non-weight bearing and I can keep my low back relatively stable -

it's the only way I can get some cardio. I used to be able to cycle for hours

when I was younger when I couldn't walk very far. Can she ride a bike of some

sort? Just some ideas.

Dee

To: tetheredspinalcord ; LMC-TCS

From: ishmyer95@...

Date: Fri, 26 Mar 2010 03:52:51 -0700

Subject: Any advice would be really appreciated.

Hi everyone,

Ella and I have just retuned from a 2 week hospital stay. I have come home

feeling completely confused and thought a chat with some of you guys may clear

my head just a little. I apologise if this is too long, but thank you immensely

for listening!

Last time i mailed we were heading to the uS for a holiday to Disney land. I had

thought about seeking opinions about her with dr's then but just wanted to

dedicate this time to a real treat for the family. We were only there for a week

and we all just needed maybe to chill.

Sine last dec Ella has pain in her lower back and or legs in varying degrees

every day. She is only able to walk short distances because the pain becomes too

much. She very reluctantly uses her wheel chair if she absolutely needs to.

Lately she has this weird thing happen where the pain becomes so unbearable that

she can't put her foot on the ground.If she sits down this can improve pretty

quickly.

She had another MRI about 6 months ago that the specialists said indicated that

she has not re-tethered. The only diagnosis they have come up with is

Dysfunction of the lower Spinal cord for reasons unknown. She had nerve

conduction studies around the time of the last MRI and they showed some problem

with the nerve roots. We have been told that all investigations that can be done

have been and it is now about managing the pain in her everyday life. She

already takes 600 mg Neurontin, 25my Endep and 5 mg Vesicare.

A big part of this hospital visit involved Physiotherapy ( I know this is not

what it is called in America.)The therapists were cocerned that her exercise

endurance had remarkably decreased and were concerned at preventing any muscle

waisting - which I can totally understand. So, we undertook a 2 week onslaught

of an equivalent to " Boot camp " !! OK I may be exaggerating a little but it was

certainly close.She was pushed way way past the first time she complained it was

hurting was expected to walk up 4 levels of stairs ( Stairs are a big prob for

her) and was asked to do a 15 min walk each day.God love her she solidered on

through the pain but had very little reserves left for just getting around

during the rest of the day and couldnt get to sleep at night as the pain in her

became so bad.

As Ella could complete most of the tasks required the physios concluded that

Ella was pulling on Mums heart strings and that this was a big part of our

problem. I felt so angry and frustrated for my little girl who gives so much and

misses out on many things that she would love to do. When I picked her up from

the hospital school they asked me if Ella had a problem with her school as she

had not required her wheelchair at any time while she was there. Let me say that

this school takes place in 2 rooms and required hardly any walking and no

endurance whatsoever!

I spoke to her neurologist of my concerns and he felt very sorry that we had

been treated like this and I left wishing we had not asked for help and just

dealt with this for Ella and the best ways we know how.I have many questions

for you all but i guess a big one is . Can building up muscle strength decrease

nerve pain even though it exaccerbates symptoms? Ella was constantly reminded

that the extreme pain she was getting is not dangerous. That is good to know but

how far past the pain do you push yourselves? Isn't pacing oneself more

sensible? She has also been discouraged from using her wheelchair at all. We

hardly use it but found we were avoiding so many situations such as shopping,

going to museums etc that a therapist actually recommended we get one for these

occasions. It has taken years to get her to even use it in these times, she

hates it so much and now i feel this has all been undermined.

Are there lots of you guys out there who put up with judgements being made due

to the sometimes invisible nature of your condition?( Don't get me wrong I am in

no way wishing it was more visible) Sorry, just frustrated!!!

Regards,

Lani

[Guest guest]

Hi Lani - am so sorry your daughter is having such a difficult time. The

experience that she had at the hospital with physio sounds awful. I can't give

you advice on a child, but as an adult I can give my experience with

physio/exercise. I do find the less I do the less I can do physically, so it is

important to maintain as good a fitness level as possible - however - I do not

agree with the pain your daughter was put through. I have hurt myself so many

times doing rehab exercises over the years. If I push myself and do to much it

does NOT make me better!!!! It will just make me worse. I do find if my core

muscles are strong I have less back pain, and if I exercise my legs with

resistance (I do pilates on the reformer) my leg strength is noticeably better.

I have had a wonderful physiotherapist the last 4 years who has helped me become

much more functional but we did it at a very SLOW pace. For me now, I do what

doesn't hurt me so much that I suffer a set-back. I can do short walks (eg 15

min), can do pilates and swim. I am wondering about swimming therapy for your

daughter? Swimming is my saving grace -- I can swim for 1/2 hour with little

pain -- it is non-weight bearing and I can keep my low back relatively stable -

it's the only way I can get some cardio. I used to be able to cycle for hours

when I was younger when I couldn't walk very far. Can she ride a bike of some

sort? Just some ideas.

Dee

To: tetheredspinalcord ; LMC-TCS

From: ishmyer95@...

Date: Fri, 26 Mar 2010 03:52:51 -0700

Subject: Any advice would be really appreciated.

Hi everyone,

Ella and I have just retuned from a 2 week hospital stay. I have come home

feeling completely confused and thought a chat with some of you guys may clear

my head just a little. I apologise if this is too long, but thank you immensely

for listening!

Last time i mailed we were heading to the uS for a holiday to Disney land. I had

thought about seeking opinions about her with dr's then but just wanted to

dedicate this time to a real treat for the family. We were only there for a week

and we all just needed maybe to chill.

Sine last dec Ella has pain in her lower back and or legs in varying degrees

every day. She is only able to walk short distances because the pain becomes too

much. She very reluctantly uses her wheel chair if she absolutely needs to.

Lately she has this weird thing happen where the pain becomes so unbearable that

she can't put her foot on the ground.If she sits down this can improve pretty

quickly.

She had another MRI about 6 months ago that the specialists said indicated that

she has not re-tethered. The only diagnosis they have come up with is

Dysfunction of the lower Spinal cord for reasons unknown. She had nerve

conduction studies around the time of the last MRI and they showed some problem

with the nerve roots. We have been told that all investigations that can be done

have been and it is now about managing the pain in her everyday life. She

already takes 600 mg Neurontin, 25my Endep and 5 mg Vesicare.

A big part of this hospital visit involved Physiotherapy ( I know this is not

what it is called in America.)The therapists were cocerned that her exercise

endurance had remarkably decreased and were concerned at preventing any muscle

waisting - which I can totally understand. So, we undertook a 2 week onslaught

of an equivalent to " Boot camp " !! OK I may be exaggerating a little but it was

certainly close.She was pushed way way past the first time she complained it was

hurting was expected to walk up 4 levels of stairs ( Stairs are a big prob for

her) and was asked to do a 15 min walk each day.God love her she solidered on

through the pain but had very little reserves left for just getting around

during the rest of the day and couldnt get to sleep at night as the pain in her

became so bad.

As Ella could complete most of the tasks required the physios concluded that

Ella was pulling on Mums heart strings and that this was a big part of our

problem. I felt so angry and frustrated for my little girl who gives so much and

misses out on many things that she would love to do. When I picked her up from

the hospital school they asked me if Ella had a problem with her school as she

had not required her wheelchair at any time while she was there. Let me say that

this school takes place in 2 rooms and required hardly any walking and no

endurance whatsoever!

I spoke to her neurologist of my concerns and he felt very sorry that we had

been treated like this and I left wishing we had not asked for help and just

dealt with this for Ella and the best ways we know how.I have many questions

for you all but i guess a big one is . Can building up muscle strength decrease

nerve pain even though it exaccerbates symptoms? Ella was constantly reminded

that the extreme pain she was getting is not dangerous. That is good to know but

how far past the pain do you push yourselves? Isn't pacing oneself more

sensible? She has also been discouraged from using her wheelchair at all. We

hardly use it but found we were avoiding so many situations such as shopping,

going to museums etc that a therapist actually recommended we get one for these

occasions. It has taken years to get her to even use it in these times, she

hates it so much and now i feel this has all been undermined.

Are there lots of you guys out there who put up with judgements being made due

to the sometimes invisible nature of your condition?( Don't get me wrong I am in

no way wishing it was more visible) Sorry, just frustrated!!!

Regards,

Lani