Re: Re: Re: tethered cord - New Member Lynn

[Guest guest]

I fight my doctors over this all the time! Every

symptom that occurs, the first thing they want to do

is blame the TCS and never look for anything else. I

had to switch to a new doctor to get any answers to

the sleep issues I've been having.

Brande, you're right. There are common symptoms to

most disorders. Then there are the uncommon things

that pop up and surprise us all the time. It is

important to find out if anything new is causing a new

symptom and not immediately turn to the TCS diagnosis.

But in the end, it all might turn out to be the TCS

anyway.

It's fun to live in our bodies. We get new surprises

all the time!

co-moderator, co-owner

--- Brande wrote:

>

> It's not that I am dismissing the possiblity. All I

> said is

> that it wasn't a likely Symptom. That's not saying

> it can't ever

> be a Symptom. Of this Condition, and other

> Conditions, there are

> Symptoms that are likely and those that are not.

>

> We should keep in mind not to blindly blame

> everything

> on Tethered Cord.......we should have other

> possiblities

> ruled out as well.

>

> Don't be so quick to dismiss the possibility that

> tsc could cause

> nausea.

>

> Perhaps tsc doesn't cause nausea directly...but, in

> some cases it

> can LEAD to high ICP...which can LEAD to high

> pressure on the brain,

> brainstem, or spinal cord. Also, keep in mind that

> nausea can be

> associated with vertigo/dizziness. And we know high

> ICP can cause

> this.

> Considering the brain and spinal cord act as the

> " cpu " for the body,

> I'm not surprised by anything I hear anymore. BUT,

> it is very

> important to not get so wrapped up in tcs (and

> chiari for those of

> you with this too) that you overlook other potential

> illnesses. I

> think a good rule of thumb is to do your best to

> rule out other

> causes for any medical issue you may have (keeping

> in mind that it

> very well may be caused by tsc). Once everything

> else is ruled

> out....well, there's really not much else to assume.

>

>

__________________________________________________

[Guest guest]

To all, my recent MRI showed no change in tethered cord - still retethered,

nothing new, but my pain is different and more severe. I don't have a

specialist, or pain management dr. . My gp ordered the MRIs of neck and

spine. I am at wits end, I don't know where to go. I have a lot of

responsibility taking care of my mother etc, and I cannot be in this much

pain all the time. Any new non-narcotic drugs out there I could ask for?

My gp will not give me anything narcotic. Thanks, Judy

>

>Reply-To: tetheredspinalcord

>To: <tetheredspinalcord >

>Subject: Re: Re: tethered cord - New Member Lynn

>Date: Tue, 30 May 2006 16:20:08 -0500

>

>I mentioned this in another Email that I wrote last night,

>but I will reinternate here.

>

>It's not that I am dismissing the possiblity. All I said is

>that it wasn't a likely Symptom. That's not saying it can't ever

>be a Symptom. Of this Condition, and other Conditions, there are

>Symptoms that are likely and those that are not.

>

>We should keep in mind not to blindly blame everything

>on Tethered Cord.......we should have other possiblities

>ruled out as well. Which is what you said as well. I was

>just saying it differently, in my orginal response, so

>that person wouldn't just automatically think it was

>Tethered Cord........I wasn't at all dismissing it, just

>leading, probably a new person in regards to this, in

>a direction to not jump the gun and think something

>is Tethered Cord related when it may not be.

>

>I do agree with you that it can be indirectly caused by

>Tethered Cord. Many more things then what we

>normally think of could be an indirect effect. But even

>at that, we still need to look into the possiblity of

>there being other causes.

>

>Do you have more information on Tethered Cord causing

>high ICP? I am just talking about Tethered Cord by

>itself, not factoring in anything else. I would be interested

>if you have more information. I see where you are

>coming from here, but I have not seen that it actually

>has been linked.

>

>Hopefully thinks helps you to understand more clearly

>where I was coming from or where I was going with

>my orginal response to this.

>

>Me

>Nebraska, USA

>mymocha@...

>

>

>

>Don't be so quick to dismiss the possibility that tsc could cause

>nausea.

>

>Perhaps tsc doesn't cause nausea directly...but, in some cases it

>can LEAD to high ICP...which can LEAD to high pressure on the brain,

>brainstem, or spinal cord. Also, keep in mind that nausea can be

>associated with vertigo/dizziness. And we know high ICP can cause

>this.

>Considering the brain and spinal cord act as the " cpu " for the body,

>I'm not surprised by anything I hear anymore. BUT, it is very

>important to not get so wrapped up in tcs (and chiari for those of

>you with this too) that you overlook other potential illnesses. I

>think a good rule of thumb is to do your best to rule out other

>causes for any medical issue you may have (keeping in mind that it

>very well may be caused by tsc). Once everything else is ruled

>out....well, there's really not much else to assume.

>

[Guest guest]

Judy, what do you take now?

I take tramadol at night. I am going to be asking for

Cymbalta at my next appt. It's an antidepressant that

has shown some real promise with nerve pain. There

is also a supplement that is showing some promise with

diabetic neuropathy, which is nerve pain caused by

diabetes. I watch that information because while the

cause of the nerve damage is different, the pain still

results from the nerve damage, so what works for

diabetic nerve pain might work for ours.

Anyway, the supplement is called Alpha Lipoic Acid.

Doing a google search brings up some information about

it. Here's a study from Mayo Clinic:

http://www.mayoclinic.org/news2003-rst/1733.html

I've been taking 200 mg, twice a day, for about a week

now. Still waiting to see if it's enough and if it

will do a dang thing!

Hope this helps a little. I don't take narcotics

because I refuse to break out the big guns until I

have no other choice.

--- JUDY JEROME wrote:

> To all, my recent MRI showed no change in tethered

> cord - still retethered,

> nothing new, but my pain is different and more

> severe. I don't have a

> specialist, or pain management dr. . My gp ordered

> the MRIs of neck and

> spine. I am at wits end, I don't know where to go.

> I have a lot of

> responsibility taking care of my mother etc, and I

> cannot be in this much

> pain all the time. Any new non-narcotic drugs out

> there I could ask for?

> My gp will not give me anything narcotic. Thanks,

> Judy

>

>

> >

> >Reply-To: tetheredspinalcord

> >To: <tetheredspinalcord >

> >Subject: Re: Re: tethered cord - New Member

> Lynn

> >Date: Tue, 30 May 2006 16:20:08 -0500

> >

> >I mentioned this in another Email that I wrote last

> night,

> >but I will reinternate here.

> >

> >It's not that I am dismissing the possiblity. All I

> said is

> >that it wasn't a likely Symptom. That's not saying

> it can't ever

> >be a Symptom. Of this Condition, and other

> Conditions, there are

> >Symptoms that are likely and those that are not.

> >

> >We should keep in mind not to blindly blame

> everything

> >on Tethered Cord.......we should have other

> possiblities

> >ruled out as well. Which is what you said as well.

> I was

> >just saying it differently, in my orginal response,

> so

> >that person wouldn't just automatically think it

> was

> >Tethered Cord........I wasn't at all dismissing it,

> just

> >leading, probably a new person in regards to this,

> in

> >a direction to not jump the gun and think something

> >is Tethered Cord related when it may not be.

> >

> >I do agree with you that it can be indirectly

> caused by

> >Tethered Cord. Many more things then what we

> >normally think of could be an indirect effect. But

> even

> >at that, we still need to look into the possiblity

> of

> >there being other causes.

> >

> >Do you have more information on Tethered Cord

> causing

> >high ICP? I am just talking about Tethered Cord by

> >itself, not factoring in anything else. I would be

> interested

> >if you have more information. I see where you are

> >coming from here, but I have not seen that it

> actually

> >has been linked.

> >

> >Hopefully thinks helps you to understand more

> clearly

> >where I was coming from or where I was going with

> >my orginal response to this.

> >

> >Me

> >Nebraska, USA

> >mymocha@...

> >

> >

> >

> >Don't be so quick to dismiss the possibility that

> tsc could cause

> >nausea.

> >

> >Perhaps tsc doesn't cause nausea directly...but, in

> some cases it

> >can LEAD to high ICP...which can LEAD to high

> pressure on the brain,

> >brainstem, or spinal cord. Also, keep in mind that

> nausea can be

> >associated with vertigo/dizziness. And we know

> high ICP can cause

> >this.

> >Considering the brain and spinal cord act as the

> " cpu " for the body,

> >I'm not surprised by anything I hear anymore. BUT,

> it is very

> >important to not get so wrapped up in tcs (and

> chiari for those of

> >you with this too) that you overlook other

> potential illnesses. I

> >think a good rule of thumb is to do your best to

> rule out other

> >causes for any medical issue you may have (keeping

> in mind that it

> >very well may be caused by tsc). Once everything

> else is ruled

> >out....well, there's really not much else to

> assume.

> >

>

>

>

__________________________________________________

[Guest guest]

My neurologist gave me a Lyrica for nerve pain-took the first pill last night.

Still woke up in the night with pain but after shifting position went right back

to sleep. Anybody else taking Lyrica? Have avoided meds as much as possible

for my retethered cord but had been getting sleep depraved(and onery) the past

year.

Pat

[Guest guest]

, I take Lortab, if my dr will give it to me, I have tried many

non-narcotic drugs, so far nothing works. Right now I am taking Motrin,

that is all I have. I have a stomach disorder also, so Motrin will make me

sick eventually. I will ask my dr about the ones you mentioned, thanks,

Judy

>

>Reply-To: tetheredspinalcord

>To: tetheredspinalcord

>Subject: RE: Re: Re: tethered cord - New Member Lynn

>Date: Thu, 1 Jun 2006 07:11:23 -0700 (PDT)

>

>Judy, what do you take now?

>

>I take tramadol at night. I am going to be asking for

>Cymbalta at my next appt. It's an antidepressant that

>has shown some real promise with nerve pain. There

>is also a supplement that is showing some promise with

>diabetic neuropathy, which is nerve pain caused by

>diabetes. I watch that information because while the

>cause of the nerve damage is different, the pain still

>results from the nerve damage, so what works for

>diabetic nerve pain might work for ours.

>

>Anyway, the supplement is called Alpha Lipoic Acid.

>Doing a google search brings up some information about

>it. Here's a study from Mayo Clinic:

>

>http://www.mayoclinic.org/news2003-rst/1733.html

>

>I've been taking 200 mg, twice a day, for about a week

>now. Still waiting to see if it's enough and if it

>will do a dang thing!

>

>Hope this helps a little. I don't take narcotics

>because I refuse to break out the big guns until I

>have no other choice.

>

>

>

>--- JUDY JEROME wrote:

>

> > To all, my recent MRI showed no change in tethered

> > cord - still retethered,

> > nothing new, but my pain is different and more

> > severe. I don't have a

> > specialist, or pain management dr. . My gp ordered

> > the MRIs of neck and

> > spine. I am at wits end, I don't know where to go.

> > I have a lot of

> > responsibility taking care of my mother etc, and I

> > cannot be in this much

> > pain all the time. Any new non-narcotic drugs out

> > there I could ask for?

> > My gp will not give me anything narcotic. Thanks,

> > Judy

> >

> >

> > >

> > >Reply-To: tetheredspinalcord

> > >To: <tetheredspinalcord >

> > >Subject: Re: Re: tethered cord - New Member

> > Lynn

> > >Date: Tue, 30 May 2006 16:20:08 -0500

> > >

> > >I mentioned this in another Email that I wrote last

> > night,

> > >but I will reinternate here.

> > >

> > >It's not that I am dismissing the possiblity. All I

> > said is

> > >that it wasn't a likely Symptom. That's not saying

> > it can't ever

> > >be a Symptom. Of this Condition, and other

> > Conditions, there are

> > >Symptoms that are likely and those that are not.

> > >

> > >We should keep in mind not to blindly blame

> > everything

> > >on Tethered Cord.......we should have other

> > possiblities

> > >ruled out as well. Which is what you said as well.

> > I was

> > >just saying it differently, in my orginal response,

> > so

> > >that person wouldn't just automatically think it

> > was

> > >Tethered Cord........I wasn't at all dismissing it,

> > just

> > >leading, probably a new person in regards to this,

> > in

> > >a direction to not jump the gun and think something

> > >is Tethered Cord related when it may not be.

> > >

> > >I do agree with you that it can be indirectly

> > caused by

> > >Tethered Cord. Many more things then what we

> > >normally think of could be an indirect effect. But

> > even

> > >at that, we still need to look into the possiblity

> > of

> > >there being other causes.

> > >

> > >Do you have more information on Tethered Cord

> > causing

> > >high ICP? I am just talking about Tethered Cord by

> > >itself, not factoring in anything else. I would be

> > interested

> > >if you have more information. I see where you are

> > >coming from here, but I have not seen that it

> > actually

> > >has been linked.

> > >

> > >Hopefully thinks helps you to understand more

> > clearly

> > >where I was coming from or where I was going with

> > >my orginal response to this.

> > >

> > >Me

> > >Nebraska, USA

> > >mymocha@...

> > >

> > >

> > >

> > >Don't be so quick to dismiss the possibility that

> > tsc could cause

> > >nausea.

> > >

> > >Perhaps tsc doesn't cause nausea directly...but, in

> > some cases it

> > >can LEAD to high ICP...which can LEAD to high

> > pressure on the brain,

> > >brainstem, or spinal cord. Also, keep in mind that

> > nausea can be

> > >associated with vertigo/dizziness. And we know

> > high ICP can cause

> > >this.

> > >Considering the brain and spinal cord act as the

> > " cpu " for the body,

> > >I'm not surprised by anything I hear anymore. BUT,

> > it is very

> > >important to not get so wrapped up in tcs (and

> > chiari for those of

> > >you with this too) that you overlook other

> > potential illnesses. I

> > >think a good rule of thumb is to do your best to

> > rule out other

> > >causes for any medical issue you may have (keeping

> > in mind that it

> > >very well may be caused by tsc). Once everything

> > else is ruled

> > >out....well, there's really not much else to

> > assume.

> > >

> >

> >

> >

>

>

>__________________________________________________

>

[Guest guest]

Tramadol is indicated for moderate- moderately severe

pain, though many people I know with severe pain say

they might as well be taking aspirin because tramadol

doesn't do much for them. It doesn't kill all my pain,

but it does quiet it enough for me to not sit there

writhing all night long. Lortab has hydrocodone in

it, so it is addictive. It's an opiod, related to

codeine. Tramadol is not a narcotic, though it mimics

one. It has less potential for abuse and doesn't

impair quite the way narcotics do. Ask about it.

It's worth a shot, understanding that it doesn't kill

all pain necessarily.

Someone else on the list mentioned Cymbalta to me.

I'm going to ask my doctor about it if he ever

actually lets me come to an appointment (he's

cancelled two now).

I hope you get some relief! Oh, and tramadol won't

bug your stomach by eating a hole through it. It isn't

an NSAID.

--- JUDY JEROME wrote:

> , I take Lortab, if my dr will give it to

> me, I have tried many

> non-narcotic drugs, so far nothing works. Right now

> I am taking Motrin,

> that is all I have. I have a stomach disorder

> also, so Motrin will make me

> sick eventually. I will ask my dr about the ones

> you mentioned, thanks,

> Judy

>

>

> >

> >Reply-To: tetheredspinalcord

> >To: tetheredspinalcord

> >Subject: RE: Re: Re: tethered cord - New

> Member Lynn

> >Date: Thu, 1 Jun 2006 07:11:23 -0700 (PDT)

> >

> >Judy, what do you take now?

> >

> >I take tramadol at night. I am going to be asking

> for

> >Cymbalta at my next appt. It's an antidepressant

> that

> >has shown some real promise with nerve pain.

> There

> >is also a supplement that is showing some promise

> with

> >diabetic neuropathy, which is nerve pain caused by

> >diabetes. I watch that information because while

> the

> >cause of the nerve damage is different, the pain

> still

> >results from the nerve damage, so what works for

> >diabetic nerve pain might work for ours.

> >

> >Anyway, the supplement is called Alpha Lipoic Acid.

> >Doing a google search brings up some information

> about

> >it. Here's a study from Mayo Clinic:

> >

> >http://www.mayoclinic.org/news2003-rst/1733.html

> >

> >I've been taking 200 mg, twice a day, for about a

> week

> >now. Still waiting to see if it's enough and if it

> >will do a dang thing!

> >

> >Hope this helps a little. I don't take narcotics

> >because I refuse to break out the big guns until I

> >have no other choice.

> >

> >

> >

> >--- JUDY JEROME wrote:

> >

> > > To all, my recent MRI showed no change in

> tethered

> > > cord - still retethered,

> > > nothing new, but my pain is different and more

> > > severe. I don't have a

> > > specialist, or pain management dr. . My gp

> ordered

> > > the MRIs of neck and

> > > spine. I am at wits end, I don't know where to

> go.

> > > I have a lot of

> > > responsibility taking care of my mother etc, and

> I

> > > cannot be in this much

> > > pain all the time. Any new non-narcotic drugs

> out

> > > there I could ask for?

> > > My gp will not give me anything narcotic.

> Thanks,

> > > Judy

> > >

> > >

> > > >

> > > >Reply-To: tetheredspinalcord

> > > >To: <tetheredspinalcord >

> > > >Subject: Re: Re: tethered cord - New

> Member

> > > Lynn

> > > >Date: Tue, 30 May 2006 16:20:08 -0500

> > > >

> > > >I mentioned this in another Email that I wrote

> last

> > > night,

> > > >but I will reinternate here.

> > > >

> > > >It's not that I am dismissing the possiblity.

> All I

> > > said is

> > > >that it wasn't a likely Symptom. That's not

> saying

> > > it can't ever

> > > >be a Symptom. Of this Condition, and other

> > > Conditions, there are

> > > >Symptoms that are likely and those that are

> not.

> > > >

> > > >We should keep in mind not to blindly blame

> > > everything

> > > >on Tethered Cord.......we should have other

> > > possiblities

> > > >ruled out as well. Which is what you said as

> well.

> > > I was

> > > >just saying it differently, in my orginal

> response,

> > > so

> > > >that person wouldn't just automatically think

> it

> > > was

> > > >Tethered Cord........I wasn't at all dismissing

> it,

> > > just

> > > >leading, probably a new person in regards to

> this,

> > > in

> > > >a direction to not jump the gun and think

> something

> > > >is Tethered Cord related when it may not be.

> > > >

> > > >I do agree with you that it can be indirectly

> > > caused by

> > > >Tethered Cord. Many more things then what we

> > > >normally think of could be an indirect effect.

> But

> > > even

> > > >at that, we still need to look into the

> possiblity

> > > of

> > > >there being other causes.

> > > >

> > > >Do you have more information on Tethered Cord

> > > causing

> > > >high ICP? I am just talking about Tethered Cord

> by

> > > >itself, not factoring in anything else. I would

> be

> > > interested

> > > >if you have more information. I see where you

> are

> > > >coming from here, but I have not seen that it

> > > actually

> > > >has been linked.

> > > >

> > > >Hopefully thinks helps you to understand more

> > > clearly

> > > >where I was coming from or where I was going

> with

> > > >my orginal response to this.

> > > >

> > > >Me

> > > >Nebraska, USA

> > > >mymocha@...

> > > >

> > > >

> > > >

> > > >Don't be so quick to dismiss the possibility

> that

> > > tsc could cause

> > > >nausea.

> > > >

> > > >Perhaps tsc doesn't cause nausea

> directly...but, in

> > > some cases it

> > > >can LEAD to high ICP...which can LEAD to high

> > > pressure on the brain,

> > > >brainstem, or spinal cord. Also, keep in mind

> that

> > > nausea can be

> > > >associated with vertigo/dizziness. And we know

> > > high ICP can cause

> > > >this.

> > > >Considering the brain and spinal cord act as

> the

> > > " cpu " for the body,

> > > >I'm not surprised by anything I hear anymore.

> BUT,

> > > it is very

> > > >important to not get so wrapped up in tcs (and

> > > chiari for those of

> > > >you with this too) that you overlook other

> > > potential illnesses. I

> > > >think a good rule of thumb is to do your best

> to

> > > rule out other

> > > >causes for any medical issue you may have

> (keeping

> > > in mind that it

> > > >very well may be caused by tsc). Once

> everything

> > > else is ruled

> > > >out....well, there's really not much else to

> > > assume.

> > > >

> > >

> > >

> > >

> >

> >

> >__________________________________________________

> >

[Guest guest]

What is Lyrica? What kind of med?

--- Pat's Mail wrote:

> My neurologist gave me a Lyrica for nerve pain-took

> the first pill last night. Still woke up in the

> night with pain but after shifting position went

> right back to sleep. Anybody else taking Lyrica?

> Have avoided meds as much as possible for my

> retethered cord but had been getting sleep

> depraved(and onery) the past year.

> Pat

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Also called pregabalin. Think it is fairly new drug used for diabetes related

nerve problems-I don't have diabetes. It's also used to treat shingles,

epilepsy and neuropathy. Wish this drug had more of a history.... never had

much of a tolerance for prescription drugs. First time I have seen this

neurologist and he didn't realize my cord was a retethered one until he was

heading out the door, after he gave me Lyrica prescription.

Pat

[Guest guest]

I too was given lyrica (anti-seizure med) last month. I couldn't take the side

effects, plus after three weeks, no help all (except for the sixty bucks that

was now missing from my wallet for the med that weighed down my wallet so very

much...so maybe I should be grateful for the lighter pocketbook?)

Kathy co-owner, co-moderator

Re: Re: Re: tethered cord - New Member Lynn

What is Lyrica? What kind of med?

--- Pat's Mail wrote:

> My neurologist gave me a Lyrica for nerve pain-took

> the first pill last night. Still woke up in the

> night with pain but after shifting position went

> right back to sleep. Anybody else taking Lyrica?

> Have avoided meds as much as possible for my

> retethered cord but had been getting sleep

> depraved(and onery) the past year.

> Pat

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Hello

has been on Lyrica for about 2 months now, I

know I read about it on this list, but it is in the

Neurontin family, and suppose to have less side

effects, so far no side effects, but it really hasn't

helped.

Tommi

--- Weaver wrote:

> What is Lyrica? What kind of med?

>

>

>

> --- Pat's Mail wrote:

>

> > My neurologist gave me a Lyrica for nerve

> pain-took

> > the first pill last night. Still woke up in the

> > night with pain but after shifting position went

> > right back to sleep. Anybody else taking Lyrica?

> > Have avoided meds as much as possible for my

> > retethered cord but had been getting sleep

> > depraved(and onery) the past year.

> > Pat

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

I also took Lyrica for about a month. It seemed to be helping quite a bit. But

then the pain reared it's ugly head again. I guess the Lyrica seemed to be

helping b/c I was having a " good " spell. Once the pain came back, nothing

touched it. Bummer...

Re: Re: Re: tethered cord - New Member Lynn

What is Lyrica? What kind of med?

--- Pat's Mail wrote:

> My neurologist gave me a Lyrica for nerve pain-took

> the first pill last night. Still woke up in the

> night with pain but after shifting position went

> right back to sleep. Anybody else taking Lyrica?

> Have avoided meds as much as possible for my

> retethered cord but had been getting sleep

> depraved(and onery) the past year.

> Pat

>

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> removed]

>

>

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