Re: Losing weight (Randee) and pain meds

October 3, 2011

Thanks so much, Michele! I remember that Ultram was discontinued from use

at the pain clinic at which I worked in Saint Louis when it was found to

have some addictive qualities though, believe me, if my girl gets to a point

that she needs narcotics, I will fly all over the country to get her

treatment! She also takes antidepressants which make prescribing certain meds

a

bit trickier I believe. It is a pleasure getting to know you Randee

In a message dated 10/2/2011 7:19:52 P.M. Central Daylight Time,

micheled723@... writes:

Wow Randee !!!!

I am in shock about the pain med problem. Ultram is a pain med that is

non narcotic and is used in the prison system due to drug addiction problems

there. We also give it to elderly patients that have not ever been on pain

meds before and can not tolerate much.

I know it takes time to find the right med that will give relief, it is

hard when we have so many different symptoms to try to help. I hope I you

will find the best med for your daughter. I am so upset to learn that in

different parts of this country patients are not getting the pain relief that

they deserve.

I wish you the best and I look forward to hearing from you.

Michele

________________________________

From: " _Randeejae@..._ (mailto:Randeejae@...) "

<_Randeejae@..._ (mailto:Randeejae@...) >

To: _tetheredspinalcord _

(mailto:tetheredspinalcord )

Sent: Sunday, October 2, 2011 1:45 PM

Subject: Re: Losing weight (Randy)

How interesting medicine is! I have never known an internist that gives

narcotics long term I don't think my daughter is needing that quite yet

but it is definitely difficult to get. I worked at a multi-disciplinary

pain center in Saint Louis in which the three part time psychiatrists

prescribed narcotics. It closed :/ The multi-disciplinary pain clinic I

worked

at in Kansas City did not prescribe narcotics. For the most part,other

places that call themselves Pain Clinics are often just steroid etc.

injections...as are the ones here in Columbia, MO (home of MU). It

certainly could

be that being a nurse gives the md's more confidence that you will not

abuse your medicines. Thanks for your prayers, Michele..and back at ya!

Randee

In a message dated 10/2/2011 1:18:22 P.M. Central Daylight Time,

_micheled723@..._ (mailto:micheled723@...) writes:

Hello Randee

I know how you feel my daughter is type 1 diabetic and I wish that I

could be the one with it instead of her. It is always so hard to watch

your

child suffer. I hope that you find a doctor who will give her a med to

help

with the pain. I am a nurse and I work in an office with 6 doctors all

internal med and I have never seen any of them not give pain med to help a

patient.

I do understand that age plays a role in it, afraid of addiction, but this

pain will follow us for the rest of our lives and it is not fair no matter

what the age not to give someone relief to have some quality of life.

I live in Pueblo Colorado and I can't believe how many people are having

trouble getting pain control.

Maybe because I am a nurse and I work (I have not worked since my last

surgery 1 year ago) in the field so it does give me an advantage.

I wish you the best, and I pray for your daughter. Living with a tethered

cord is not easy and knowing the outcome can be so scary. I have enjoyed

communicating with you and look forward to helping each other through this

time.

What area are you from? I ask because it seems like so many suffer with

getting pain control.

Please stay in touch.

________________________________

From: " __Randeejae@..._ (mailto:_Randeejae@...) _

(mailto:_Randeejae@..._ (mailto:Randeejae@...) ) "

<__Randeejae@..._ (mailto:_Randeejae@...) _

(mailto:_Randeejae@..._ (mailto:Randeejae@...) ) >

To: __tetheredspinalcord _

(mailto:_tetheredspinalcord ) _

(mailto:_tetheredspinalcord _

(mailto:tetheredspinalcord ) )

Sent: Sunday, October 2, 2011 10:04 AM

Subject: Re: Losing weight (Randy)

Thanks, Michele,

I am a psychologist who has worked in a few different pain clinics. It is

indeed rare to find someone who will prescribe narcotics. We will

continue the search for the best forms of pain relief. It is my daughter,

21 yo,

not me with the tethered cord..I sure have prayed hard to have it put into

me!! :/

Randee

In a message dated 10/2/2011 9:49:02 A.M. Central Daylight Time,

__micheled723@..._ (mailto:_micheled723@...) _

(mailto:_micheled723@..._ (mailto:micheled723@...) ) writes:

Hello Randee

I am so confused as to why you can not get anything for pain besides

neurontin, I was never even given that as an option. That may help with

neuropathy, but not for the back pain. I see an internal med doctor and I

am

lucky because I am a nurse so I have more say in what works for me.

I do see this alot with people trying to explain to the doctors how they

feel, due to my position in my job, I have been able to get more people to

listen to me.

Lyrica from what I have seen at work is a very hard med to take, not many

people who can handle the side effects. Neurontin does cause weight gain.

I would hope that you can get in with an internal med doctor not family

practice and find one who will listen to you and try to help you get

relief.

I wish only the best for your daughter, as I do with all of us who are

suffering with this terrible problem, I would have her suggest a small

dose

of a time release pain med and try to get off the neurontin due to the

side

effects it is causing her. I know doctors are worried about younger people

becoming addicted to pain meds but in our condition what choice do we

have. Sometimes you can also find a pain doctor and that is just what he

does

but prescribe med to help people, they will make you sign a pain med

contract to insure that the patient is using her meds as prescribed. Don't

give

up hope and don't settle for what you are given if it is not helping or

causing more problems remember the doctors are working for us and are

there to

help. Please let me know how this goes for you.

________________________________

From: Jan Willem Weijers <___weijers.jw@..._

(mailto:__weijers.jw@...) _

(mailto:__weijers.jw@..._ (mailto:_weijers.jw@...) ) _

(mailto:__weijers.jw@..._ (mailto:_weijers.jw@...) _

(mailto:_weijers.jw@..._ (mailto:weijers.jw@...) ) ) >

To: ___tetheredspinalcord _

(mailto:__tetheredspinalcord ) _

(mailto:__tetheredspinalcord _

(mailto:_tetheredspinalcord ) ) _

(mailto:__tetheredspinalcord _

(mailto:_tetheredspinalcord ) _

(mailto:_tetheredspinalcord _

(mailto:tetheredspinalcord ) ) )

Sent: Sunday, October 2, 2011 8:22 AM

Subject: Losing weight (Randy)

Hi Randy,

That some i had to,

She need to change type off food smaller proportion.

What helped for me is do it realy slow.

3 days a week meat (so no fast-food anymore.)

a lot fruit and vegetables. Never eat to much in the begin.

Just take cup of tea in stead off limonade (like coke and 7up) ore other

bubble drink.

cordial is realy a good option, and a good drink for us is something like

strawberry.

And if possible try to exersise, by something like swimming ore if you

able

at least someting where you move you body.

That made Lyrica a much better medicin then Neurotin for me.

After 5 year i can't eat much more.

Forget pills and other ways becouse they help on short term. but then you

felt down.

This take many years but help you whole life.

Don't go to that weighing scale every week just once a month.

Good luck for you daughter Randy.

It helps me a lot. In 5 years i lost 30 pounds.

Kindly regards.

Jan Willem

-----Oorspronkelijk bericht-----

From: ___Randeejae@..._ (mailto:__Randeejae@...) _

(mailto:__Randeejae@..._ (mailto:_Randeejae@...) ) _

(mailto:__Randeejae@..._ (mailto:_Randeejae@...) _

(mailto:_Randeejae@..._ (mailto:Randeejae@...) ) )

Sent: Sunday, October 02, 2011 3:23 PM

To: ___tetheredspinalcord _

(mailto:__tetheredspinalcord ) _

(mailto:__tetheredspinalcord _

(mailto:_tetheredspinalcord ) ) _

(mailto:__tetheredspinalcord _

(mailto:_tetheredspinalcord ) _

(mailto:_tetheredspinalcord _

(mailto:tetheredspinalcord ) ) )

Subject: Re: Re: how many times

How lucky you are, Michele, that someone is willing to prescribe a narcotic

med for you. My daughter suffers with weight gain from neurontin (now on

Lyrica, but don't see how that would be any different) and at age 21 this

is very hard for her as it is, I would guess, about 40 pounds. She still

has

pain as well though she says that without the meds, she doesn't think she

would get out of bed in the morning. Randee

[Non-text portions of this message have been removed]

October 3, 2011

Randee,

Â

I did not know that about ultram we still use it here, my daughter works in a

hospital that houses inmates from prison and that is the only pain med the

doctors can use.

Â

I do understand how tricky meds are.........I however can not understand why so

much advice I have read from people on line that they have been told to wait to

have surgery, I have been online all evening researching tethered cords and I

have read if you have symptoms then have surgery right away, but I have heard

from some that they were told to wait.

Â

I am so confused..... do you wait or not?Â My NS has never wanted me to wait if

I was having symptoms but yet I read so many people are told to............

Â

If you ever need any help finding a doctor in my town I can help.Â My doctor

also who I worked for before my last surgery for 10 years can not believe how

much trouble people are having getting proper pain attention.

Â

take care

Michele

________________________________

To: tetheredspinalcord

Sent: Sunday, October 2, 2011 7:19 PM

Subject: Re: Losing weight (Randee) and pain meds

Â

Thanks so much, Michele! I remember that Ultram was discontinued from use

at the pain clinic at which I worked in Saint Louis when it was found to

have some addictive qualities though, believe me, if my girl gets to a point

that she needs narcotics, I will fly all over the country to get her

treatment! She also takes antidepressants which make prescribing certain meds a

bit trickier I believe. It is a pleasure getting to know you Randee

In a message dated 10/2/2011 7:19:52 P.M. Central Daylight Time,

micheled723@... writes:

Wow Randee !!!!

I am in shock about the pain med problem. Ultram is a pain med that is

non narcotic and is used in the prison system due to drug addiction problems

there. We also give it to elderly patients that have not ever been on pain

meds before and can not tolerate much.

I know it takes time to find the right med that will give relief, it is

hard when we have so many different symptoms to try to help. I hope I you

will find the best med for your daughter. I am so upset to learn that in

different parts of this country patients are not getting the pain relief that

they deserve.

I wish you the best and I look forward to hearing from you.

Michele

________________________________

From: " _Randeejae@..._ (mailto:Randeejae@...) "

<_Randeejae@..._ (mailto:Randeejae@...) >

To: _tetheredspinalcord _

(mailto:tetheredspinalcord )

Sent: Sunday, October 2, 2011 1:45 PM

Subject: Re: Losing weight (Randy)

How interesting medicine is! I have never known an internist that gives

narcotics long term I don't think my daughter is needing that quite yet

but it is definitely difficult to get. I worked at a multi-disciplinary

pain center in Saint Louis in which the three part time psychiatrists

prescribed narcotics. It closed :/ The multi-disciplinary pain clinic I

worked

at in Kansas City did not prescribe narcotics. For the most part,other

places that call themselves Pain Clinics are often just steroid etc.

injections...as are the ones here in Columbia, MO (home of MU). It

certainly could

be that being a nurse gives the md's more confidence that you will not

abuse your medicines. Thanks for your prayers, Michele..and back at ya!

Randee

In a message dated 10/2/2011 1:18:22 P.M. Central Daylight Time,

_micheled723@..._ (mailto:micheled723@...) writes:

Hello Randee

I know how you feel my daughter is type 1 diabetic and I wish that I

could be the one with it instead of her. It is always so hard to watch

your

child suffer. I hope that you find a doctor who will give her a med to

help

with the pain. I am a nurse and I work in an office with 6 doctors all

internal med and I have never seen any of them not give pain med to help a

patient.

I do understand that age plays a role in it, afraid of addiction, but this

pain will follow us for the rest of our lives and it is not fair no matter

what the age not to give someone relief to have some quality of life.

I live in Pueblo Colorado and I can't believe how many people are having

trouble getting pain control.

Maybe because I am a nurse and I work (I have not worked since my last

surgery 1 year ago) in the field so it does give me an advantage.

I wish you the best, and I pray for your daughter. Living with a tethered

cord is not easy and knowing the outcome can be so scary. I have enjoyed

communicating with you and look forward to helping each other through this

time.

What area are you from? I ask because it seems like so many suffer with

getting pain control.

Please stay in touch.

________________________________

From: " __Randeejae@..._ (mailto:_Randeejae@...) _

(mailto:_Randeejae@..._ (mailto:Randeejae@...) ) "

<__Randeejae@..._ (mailto:_Randeejae@...) _

(mailto:_Randeejae@..._ (mailto:Randeejae@...) ) >

To: __tetheredspinalcord _

(mailto:_tetheredspinalcord ) _

(mailto:_tetheredspinalcord _

(mailto:tetheredspinalcord ) )

Sent: Sunday, October 2, 2011 10:04 AM

Subject: Re: Losing weight (Randy)

Thanks, Michele,

I am a psychologist who has worked in a few different pain clinics. It is

indeed rare to find someone who will prescribe narcotics. We will

continue the search for the best forms of pain relief. It is my daughter,

21 yo,

not me with the tethered cord..I sure have prayed hard to have it put into

me!! :/

Randee

In a message dated 10/2/2011 9:49:02 A.M. Central Daylight Time,

__micheled723@..._ (mailto:_micheled723@...) _

(mailto:_micheled723@..._ (mailto:micheled723@...) ) writes:

Hello Randee

I am so confused as to why you can not get anything for pain besides

neurontin, I was never even given that as an option. That may help with

neuropathy, but not for the back pain. I see an internal med doctor and I

am

lucky because I am a nurse so I have more say in what works for me.

I do see this alot with people trying to explain to the doctors how they

feel, due to my position in my job, I have been able to get more people to

listen to me.

Lyrica from what I have seen at work is a very hard med to take, not many

people who can handle the side effects. Neurontin does cause weight gain.

I would hope that you can get in with an internal med doctor not family

practice and find one who will listen to you and try to help you get

relief.

I wish only the best for your daughter, as I do with all of us who are

suffering with this terrible problem, I would have her suggest a small

dose

of a time release pain med and try to get off the neurontin due to the

side

effects it is causing her. I know doctors are worried about younger people

becoming addicted to pain meds but in our condition what choice do we

have. Sometimes you can also find a pain doctor and that is just what he

does

but prescribe med to help people, they will make you sign a pain med

contract to insure that the patient is using her meds as prescribed. Don't

give

up hope and don't settle for what you are given if it is not helping or

causing more problems remember the doctors are working for us and are

there to

help. Please let me know how this goes for you.

________________________________

From: Jan Willem Weijers <___weijers.jw@..._

(mailto:__weijers.jw@...) _

(mailto:__weijers.jw@..._ (mailto:_weijers.jw@...) ) _

(mailto:__weijers.jw@..._ (mailto:_weijers.jw@...) _

(mailto:_weijers.jw@..._ (mailto:weijers.jw@...) ) ) >

To: ___tetheredspinalcord _

(mailto:__tetheredspinalcord ) _

(mailto:__tetheredspinalcord _

(mailto:_tetheredspinalcord ) ) _

(mailto:__tetheredspinalcord _

(mailto:_tetheredspinalcord ) _

(mailto:_tetheredspinalcord _

(mailto:tetheredspinalcord ) ) )

Sent: Sunday, October 2, 2011 8:22 AM

Subject: Losing weight (Randy)

Hi Randy,

That some i had to,

She need to change type off food smaller proportion.

What helped for me is do it realy slow.

3 days a week meat (so no fast-food anymore.)

a lot fruit and vegetables. Never eat to much in the begin.

Just take cup of tea in stead off limonade (like coke and 7up) ore other

bubble drink.

cordial is realy a good option, and a good drink for us is something like

strawberry.

And if possible try to exersise, by something like swimming ore if you

able

at least someting where you move you body.

That made Lyrica a much better medicin then Neurotin for me.

After 5 year i can't eat much more.

Forget pills and other ways becouse they help on short term. but then you

felt down.

This take many years but help you whole life.

Don't go to that weighing scale every week just once a month.

Good luck for you daughter Randy.

It helps me a lot. In 5 years i lost 30 pounds.

Kindly regards.

Jan Willem

-----Oorspronkelijk bericht-----

From: ___Randeejae@..._ (mailto:__Randeejae@...) _

(mailto:__Randeejae@..._ (mailto:_Randeejae@...) ) _

(mailto:__Randeejae@..._ (mailto:_Randeejae@...) _

(mailto:_Randeejae@..._ (mailto:Randeejae@...) ) )

Sent: Sunday, October 02, 2011 3:23 PM

To: ___tetheredspinalcord _

(mailto:__tetheredspinalcord ) _

(mailto:__tetheredspinalcord _

(mailto:_tetheredspinalcord ) ) _

(mailto:__tetheredspinalcord _

(mailto:_tetheredspinalcord ) _

(mailto:_tetheredspinalcord _

(mailto:tetheredspinalcord ) ) )

Subject: Re: Re: how many times

How lucky you are, Michele, that someone is willing to prescribe a narcotic

med for you. My daughter suffers with weight gain from neurontin (now on

Lyrica, but don't see how that would be any different) and at age 21 this

is very hard for her as it is, I would guess, about 40 pounds. She still

has

pain as well though she says that without the meds, she doesn't think she

would get out of bed in the morning. Randee

October 3, 2011

Hi Michele,

My heart hurts for you as I know how difficult a decision this would be.

I think the first surgery is clearly indicated in the literature as the way

to go for infants and young children. It seems a bit hazier to me for

adults. With multiple surgeries, so I have been told, the " risk benefit "

ratio shifts is the way our last neurosurgeon explained it. He did however

want to proceed with the last surgery (#4) when my daughter had a couple of

episodes of urinary incontinence and increasing problems with constipation.

It didn't help the pain except for 4 months or so but it did help the

weakness and numbness and there have been no further episodes to my knowledge

of

urinary incontinence but the constipation has continued to slowly become

more of an issue. Your NSG wants to operate and you trust him..or was there

a problem with him doing this surgery for some reason. The other option

is to get an opinion from a couple of other well known folks in the field

though you would have to travel .. some will consult via mail. Please feel

free to use my personal email as well which is _randeejae@..._

(mailto:randeejae@...) ... I believe Dr. Fuchs, at Duke, will consult

via

mail. He is extremely well thought of and responded to an email I sent some

years ago that he would be glad to see though we didn't follow up on

that. Dr. Frim in Chicago is also mentioned repeatedly as an expert and

there are two California MDs whose names come up again and again though their

names escape me. Randee

In a message dated 10/2/2011 10:10:01 P.M. Central Daylight Time,

micheled723@... writes:

Randee,

I did not know that about ultram we still use it here, my daughter works

in a hospital that houses inmates from prison and that is the only pain med

the doctors can use.

I do understand how tricky meds are.........I however can not understand

why so much advice I have read from people on line that they have been told

to wait to have surgery, I have been online all evening researching

tethered cords and I have read if you have symptoms then have surgery right

away,

but I have heard from some that they were told to wait.

I am so confused..... do you wait or not? My NS has never wanted me to

wait if I was having symptoms but yet I read so many people are told

to............

If you ever need any help finding a doctor in my town I can help. My

doctor also who I worked for before my last surgery for 10 years can not

believe how much trouble people are having getting proper pain attention.

take care

Michele

________________________________

From: " _Randeejae@..._ (mailto:Randeejae@...) "

<_Randeejae@..._ (mailto:Randeejae@...) >

To: _tetheredspinalcord _

(mailto:tetheredspinalcord )

Sent: Sunday, October 2, 2011 7:19 PM

Subject: Re: Losing weight (Randee) and pain meds

Thanks so much, Michele! I remember that Ultram was discontinued from use

at the pain clinic at which I worked in Saint Louis when it was found to

have some addictive qualities though, believe me, if my girl gets to a

point

that she needs narcotics, I will fly all over the country to get her

treatment! She also takes antidepressants which make prescribing certain

meds a

bit trickier I believe. It is a pleasure getting to know you Randee

In a message dated 10/2/2011 7:19:52 P.M. Central Daylight Time,

_micheled723@..._ (mailto:micheled723@...) writes:

Wow Randee !!!!

I am in shock about the pain med problem. Ultram is a pain med that is

non narcotic and is used in the prison system due to drug addiction

problems

there. We also give it to elderly patients that have not ever been on pain

meds before and can not tolerate much.

I know it takes time to find the right med that will give relief, it is

hard when we have so many different symptoms to try to help. I hope I you

will find the best med for your daughter. I am so upset to learn that in

different parts of this country patients are not getting the pain relief

that

they deserve.

I wish you the best and I look forward to hearing from you.

Michele

________________________________

From: " __Randeejae@..._ (mailto:_Randeejae@...) _

(mailto:_Randeejae@..._ (mailto:Randeejae@...) ) "

<__Randeejae@..._ (mailto:_Randeejae@...) _

(mailto:_Randeejae@..._ (mailto:Randeejae@...) ) >

To: __tetheredspinalcord _

(mailto:_tetheredspinalcord ) _

(mailto:_tetheredspinalcord _

(mailto:tetheredspinalcord ) )

Sent: Sunday, October 2, 2011 1:45 PM

Subject: Re: Losing weight (Randy)

How interesting medicine is! I have never known an internist that gives

narcotics long term I don't think my daughter is needing that quite yet

but it is definitely difficult to get. I worked at a multi-disciplinary

pain center in Saint Louis in which the three part time psychiatrists

prescribed narcotics. It closed :/ The multi-disciplinary pain clinic I

worked

at in Kansas City did not prescribe narcotics. For the most part,other

places that call themselves Pain Clinics are often just steroid etc.

injections...as are the ones here in Columbia, MO (home of MU). It

certainly could

be that being a nurse gives the md's more confidence that you will not

abuse your medicines. Thanks for your prayers, Michele..and back at ya!

Randee

In a message dated 10/2/2011 1:18:22 P.M. Central Daylight Time,

__micheled723@..._ (mailto:_micheled723@...) _

(mailto:_micheled723@..._ (mailto:micheled723@...) ) writes:

Hello Randee

I know how you feel my daughter is type 1 diabetic and I wish that I

could be the one with it instead of her. It is always so hard to watch

your

child suffer. I hope that you find a doctor who will give her a med to

help

with the pain. I am a nurse and I work in an office with 6 doctors all

internal med and I have never seen any of them not give pain med to help a

patient.

I do understand that age plays a role in it, afraid of addiction, but this

pain will follow us for the rest of our lives and it is not fair no matter

what the age not to give someone relief to have some quality of life.

I live in Pueblo Colorado and I can't believe how many people are having

trouble getting pain control.

Maybe because I am a nurse and I work (I have not worked since my last

surgery 1 year ago) in the field so it does give me an advantage.

I wish you the best, and I pray for your daughter. Living with a tethered

cord is not easy and knowing the outcome can be so scary. I have enjoyed

communicating with you and look forward to helping each other through this

time.

What area are you from? I ask because it seems like so many suffer with

getting pain control.

Please stay in touch.

________________________________

From: " ___Randeejae@..._ (mailto:__Randeejae@...) _

(mailto:__Randeejae@..._ (mailto:_Randeejae@...) ) _

(mailto:__Randeejae@..._ (mailto:_Randeejae@...) _

(mailto:_Randeejae@..._ (mailto:Randeejae@...) ) ) "

<___Randeejae@..._ (mailto:__Randeejae@...) _

(mailto:__Randeejae@..._ (mailto:_Randeejae@...) ) _

(mailto:__Randeejae@..._ (mailto:_Randeejae@...) _

(mailto:_Randeejae@..._ (mailto:Randeejae@...) ) ) >

To: ___tetheredspinalcord _

(mailto:__tetheredspinalcord ) _

(mailto:__tetheredspinalcord _

(mailto:_tetheredspinalcord ) ) _

(mailto:__tetheredspinalcord _

(mailto:_tetheredspinalcord ) _

(mailto:_tetheredspinalcord _

(mailto:tetheredspinalcord ) ) )

Sent: Sunday, October 2, 2011 10:04 AM

Subject: Re: Losing weight (Randy)

Thanks, Michele,

I am a psychologist who has worked in a few different pain clinics. It is

indeed rare to find someone who will prescribe narcotics. We will

continue the search for the best forms of pain relief. It is my daughter,

21 yo,

not me with the tethered cord..I sure have prayed hard to have it put into

me!! :/

Randee

In a message dated 10/2/2011 9:49:02 A.M. Central Daylight Time,

___micheled723@..._ (mailto:__micheled723@...) _

(mailto:__micheled723@..._ (mailto:_micheled723@...) ) _

(mailto:__micheled723@..._ (mailto:_micheled723@...) _

(mailto:_micheled723@..._ (mailto:micheled723@...) ) ) writes:

Hello Randee

I am so confused as to why you can not get anything for pain besides

neurontin, I was never even given that as an option. That may help with

neuropathy, but not for the back pain. I see an internal med doctor and I

am

lucky because I am a nurse so I have more say in what works for me.

I do see this alot with people trying to explain to the doctors how they

feel, due to my position in my job, I have been able to get more people to

listen to me.

Lyrica from what I have seen at work is a very hard med to take, not many

people who can handle the side effects. Neurontin does cause weight gain.

I would hope that you can get in with an internal med doctor not family

practice and find one who will listen to you and try to help you get

relief.

I wish only the best for your daughter, as I do with all of us who are

suffering with this terrible problem, I would have her suggest a small

dose

of a time release pain med and try to get off the neurontin due to the

side

effects it is causing her. I know doctors are worried about younger people

becoming addicted to pain meds but in our condition what choice do we

have. Sometimes you can also find a pain doctor and that is just what he

does

but prescribe med to help people, they will make you sign a pain med

contract to insure that the patient is using her meds as prescribed. Don't

give

up hope and don't settle for what you are given if it is not helping or

causing more problems remember the doctors are working for us and are

there to

help. Please let me know how this goes for you.

________________________________

From: Jan Willem Weijers <____weijers.jw@..._

(mailto:___weijers.jw@...) _

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To: ____tetheredspinalcord _

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(mailto:__tetheredspinalcord ) ) _

(mailto:___tetheredspinalcord _

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Sent: Sunday, October 2, 2011 8:22 AM

Subject: Losing weight (Randy)

Hi Randy,

That some i had to,

She need to change type off food smaller proportion.

What helped for me is do it realy slow.

3 days a week meat (so no fast-food anymore.)

a lot fruit and vegetables. Never eat to much in the begin.

Just take cup of tea in stead off limonade (like coke and 7up) ore other

bubble drink.

cordial is realy a good option, and a good drink for us is something like

strawberry.

And if possible try to exersise, by something like swimming ore if you

able

at least someting where you move you body.

That made Lyrica a much better medicin then Neurotin for me.

After 5 year i can't eat much more.

Forget pills and other ways becouse they help on short term. but then you

felt down.

This take many years but help you whole life.

Don't go to that weighing scale every week just once a month.

Good luck for you daughter Randy.

It helps me a lot. In 5 years i lost 30 pounds.

Kindly regards.

Jan Willem

-----Oorspronkelijk bericht-----

From: ____Randeejae@..._ (mailto:___Randeejae@...) _

(mailto:___Randeejae@..._ (mailto:__Randeejae@...) ) _

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Sent: Sunday, October 02, 2011 3:23 PM

To: ____tetheredspinalcord _

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Subject: Re: Re: how many times

How lucky you are, Michele, that someone is willing to prescribe a narcotic

med for you. My daughter suffers with weight gain from neurontin (now on

Lyrica, but don't see how that would be any different) and at age 21 this

is very hard for her as it is, I would guess, about 40 pounds. She still

has

pain as well though she says that without the meds, she doesn't think she

would get out of bed in the morning. Randee

[Non-text portions of this message have been removed]

October 3, 2011

Dr. Fuchs is awesome he did my daughters dethering from L2-L5 and she outruns

and climbs stairs faster then her sisters. he is a straight shooter and has a

good bedside manner.

Sent from Yahoo! Mail on Android

October 3, 2011

Good Morning

Â

I have found such a nice bond with you,Â I have never been a part of this

before and I have enjoyed our contact.

Â

I stayed up too late last night online and again I found even for adults the

surgery should not be put off.Â I just scheduled my MRI for this Wed.Â I have

been going on how my body feels.

Â

I also have trouble with constipation, but when I have had both of my

detetherings that problem went away and of course it has come back the same as

your daughter.Â It has been exactly 1 year since my last surgery.

Â

I also have a symptom that I have never heard anyone else say they have had, but

when I bend at the waist I get floaters in my eyes, my NS cannot explain this,

but we know it is somehow connected because when I am detethered that also goes

away.Â I also have a pain in my upper back under my shoulder blade area, that

also goes away after surgery.Â All the symptoms I have go away.Â Then as time

passes they come back again.Â My surgeon says that my surgeries are successful,

but he cannot explain what causes the tether to come back.Â If the surgeries

did not help then he might not want to do the surgery, but because I feel better

he thinks we should proceed before one time the symptoms of incontinence or loss

of bladder start, then he says even after surgery they cannot be reversed.

My leg weakness also does get better, but gradually along with the constipation

and back pain it gets worse.

Â

After my first surgery my NS said that my spine was so tight the it was as if

you would pull on a rubberband until it is ready to break, he could tap my spine

with his finger and there was no give at all. The 2nd time he had to search for

the tethering. I was tethered into the sacrum area as low as it could possibly

be. The MRI scan cannot even get that far down to see. I had 2 MRI's before my

last surgery one done on my back that showed I was tethered. One done laying on

my stomach that showed I was not tethered so he asked me what I wanted to do

wait? repeat scans at a later date?

I told him if MRI'S did not exist that I felt I was tethered, I went into

surgery the next day.

As I have said I have read so much that say don't wait.Â My NS said he cannot

tell me when the symptoms will come back worse so I don't want to be in a diapor

at 40 years old or even in a wheelchair. Thank you for always getting back to me

the support you have given me has helped me, just knowing I have someone out

there with the same issues, I hope I bring the same to you.

________________________________

To: tetheredspinalcord

Sent: Monday, October 3, 2011 6:08 AM