Re: Scale

[Guest guest]

I am so sad to hear this, Livvie. I think it is hard for health care prof

to accept they are having no impact. I think that if someone says they

are in pain, we have to assume they are in pain. No one would choose to go

from walking to a wheelchair. they would be better off not using the scale

any longer .. and asking her how is the pain different, is it any better

after medications, etc. She is weak, she has bladder problems...let them

focus on that and just take her word for it that she is in pain because

whether or not she really is a 10 has little to do with her weakness and her

bladder. Sorry, I got upset when people assume someone is exaggerating

his/her pain. Sure it happens on occasion to people who have become addicted

but

I think it's important to believe the patient unless there is remarkably

clear evidence to the contrary. Randee

In a message dated 1/12/2011 7:30:24 P.M. Central Standard Time,

livviep62@... writes:

My daughter (28) is in the hospital now trying to get her pain under

control. Her 4th detethering surgery was 2 years ago and she has not bounced

back since. Her pain has not been controlled. We have seen three different

pain management people and none of them have worked out. The first had her

so doped up all she did was sleep. We are now on the 3rd and she moved so

slow that Beth has begun a downward spiral. Duke believes is related to

inactivity. Not sure I agree with that. She has lost a lot of tone in her

legs and feet, to the point of literally just draggin them. She went from

walking unassisted in Oct. to walking with a cane, to a walker, to mainly a

wheelchair now. All in just a couple of months. She is now having some

bladder issues. They are trying to get her pain better managed then move

her to a rehab facility for some inpatient rehab.

I am just wondering how you guys feel about the pain scale. The Dr.s and

nurses come in and ask her about her pain, when she tells them sometimes

they question her like they don't believe that hse is in that much pain. To

be honest, I have questioned her myself. I have seen her when her pain was

without doubt a 10, heart racing, sweating bullets, BP high. But, I have

also seen her say 10 around a mouthfull of pizza. When questioned she says

that it's different pain. The throbbing causes her to sweat and have high

rates, the shocks are equally as painful but don't cause her to react the

same way. It's so hard to know.

I don't want to question her and I don't want them looking at us like we

are abusing things. Somtimes they even make negative notes in her charts

about it. What are some of your experiences or ideas on this?

Livvie

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

[Guest guest]

I am so sorry to hear this! It sounds as if she has retethered with the sudden

neurological decline, so very very sorry. I cant imagine her body could handle

yet another surgery though, has she been evaluated for arachnoiditis? I can only

imagine how scared you both are. I also understand how frustrating it can be

when pain is being questioned. For one thing, no one (except someone else who

experiences it) can imagine that anyone can have that much pain all the time.

Also, it is easier for them to deny you are having it than to admit they cannot

help you. I can totally relate to " different " pains and how difficult it is to

" rate " them. Do I rate each pain and add them together or try to come up with a

cumulative number or what? If you take the " 8 " or " 9 " of the electrical shocks

and add them to the " 8 " or " 9 " of the vaginal/anal stabbing, what do you get?

That doesnt account for the aching and spasming or even the sacral

pain...hmmm...how do you add that

in...yet, I never say I have a 10 because everytime I think I've experienced

the worst pain yet, it gets worse. I dont know if this will make any sense but I

find that I can have the same level of pain affect me much differently depending

on how tired I am or how hormonal I am etc. I can have a " 9 " and be " in control "

or " out of control " . Sometimes I am so tired it effects me more, sometimes I am

so exhausted and introverted it effects me less....no it effects me the same,

but the way I express it is different....does that make any sense? The other

part of it is that most of us hide most of our pain. When you live with it day

in and day out, you learn to. You cant just moan and groan and grimace and whine

all your life. I could have a 7 or 8 and have a conversation with you and you

would probably not even know it. You would think I was fine unless I wanted you

to know. If anything she is probably underreporting her pain, especially if she

feels people

arent believing her. You get to the point where you feel like no one believes

you anyway so why bother. You give up. I dont know what they have her on but I

can tell you that when I was on a combination of Neurontin, Zanaflex and

Wellbutrin I was falling, weak, having to cath and do bowel program, wound up in

a wheelchair and finally it led to severe slurred speech, unable to use left

arm, unable to write etc, like a stroke. It was all med related. I had to come

off of everything and Thankfully it all resolved. I do still have some bowel and

bladder issues but no where near what it was. The weakness, falling, all of that

was all med related. They went from testing me for MS to saying I was

psychosomatic, yet within 7 days of discontinuing my meds it all straightened

out. I seriously doubt that anyone would " choose " to be in a wheelchair. Have

you ever tried to get around in one? OMG, talk about frustrating. You need to

believe her. Unless you have proof

that she isnt being truthful about her pain levels then you need to take what

she says seriously, very seriously. You just cannot imagine how helpless you

feel when you are struggling to live, struggling through each day, each hour,

each minute to deal with the pain. Most people have never ever experienced

pain so severe that they cant get to the hospital and be given a shot of

morphine or dilaudid and have instant relief. Most people have never had to deal

with severe pain for more than a few moments or maybe a few hours. Think about

the worst pain you have ever had. Think about going to the hospital for help and

they give you everything they have and nothing works. Now think about having

that pain all day, every day. The only thing worse than being in constant pain

that nothing helps is being there and having people not believe you.  

 

Subject: Scale

To: tetheredspinalcord

Date: Wednesday, January 12, 2011, 7:30 PM

 

My daughter (28) is in the hospital now trying to get her pain under control. 

Her 4th detethering surgery was 2 years ago and she has not bounced back

since.  Her pain has not been controlled.  We have seen three different pain

management people and none of them have worked out.  The first had her so doped

up all she did was sleep.  We are now on the 3rd and she moved so slow that

Beth has begun a downward spiral.  Duke believes is related to inactivity. 

Not sure I agree with that.  She has lost a lot of tone in her legs and feet,

to the point of literally just draggin them.  She went from walking unassisted

in Oct. to walking with a cane, to a walker, to mainly a wheelchair now.  All

in just a couple of months.  She is now having some bladder issues.  They are

trying to get her pain better managed then move her to a rehab facility for some

inpatient rehab. 

I am just wondering how you guys feel about the pain scale.  The Dr.s and

nurses come in and ask her about her pain, when she tells them sometimes they

question her like they don't believe that hse is in that much pain.  To be

honest, I have questioned her myself.  I have seen her when her pain was

without doubt a 10, heart racing, sweating bullets, BP high.  But, I have also

seen her say 10 around a mouthfull of pizza.  When questioned she says that

it's different pain.  The throbbing causes her to sweat and have high rates,

the shocks are equally as painful but don't cause her to react the same way. 

It's so hard to know. 

I don't want to question her and I don't want them looking at us like we are

abusing things.  Somtimes they even make negative notes in her charts about

it.  What are some of your experiences or ideas on this?

Livvie

[Guest guest]

Hi Livvie,

I am your daughters age and my pain too was questioned. I think that taking her

to a rehab facility is a great idea, do they have a pain clinic in that

facility? For me it has been a better solution than a pain management physician

as most were only focused on giving me nerve blocks and injections. I finally

had to go to a rehab (out patient) after being told to take an Advil, I honestly

was devastated that someone would even suggest that.

As far as the pain scale is concerned. Personally I think it changes, so an 8 is

an 8 in comparison to the other pain you have experienced. I shy away from it

and describe the different type of pain. Also there are many pain scales ( from

my understanding).This is the scale I use. I actually had a print out of this

and explained THIS scale to my physicians:http://www.pudendal.info/node/18

I wish your daughter all the best, so sorry she is going through so much, I hope

that the facility she goes to has a great program for her.

All the best,

Subject: Scale

To: tetheredspinalcord

Date: Wednesday, January 12, 2011, 7:30 PM

 

My daughter (28) is in the hospital now trying to get her pain under

control.  Her 4th detethering surgery was 2 years ago and she has not bounced

back since.  Her pain has not been controlled.  We have seen three different

pain management people and none of them have worked out.  The first had her so

doped up all she did was sleep.  We are now on the 3rd and she moved so slow

that Beth has begun a downward spiral.  Duke believes is related to

inactivity.  Not sure I agree with that.  She has lost a lot of tone in her

legs and feet, to the point of literally just draggin them.  She went from

walking unassisted in Oct. to walking with a cane, to a walker, to mainly a

wheelchair now.  All in just a couple of months.  She is now having some

bladder issues.  They are trying to get her pain better managed then move her

to a rehab facility for some inpatient rehab. 

I am just wondering how you guys feel about the pain scale.  The Dr.s and

nurses come in and ask her about her pain, when she tells them sometimes they

question her like they don't believe that hse is in that much pain.  To be

honest, I have questioned her myself.  I have seen her when her pain was

without doubt a 10, heart racing, sweating bullets, BP high.  But, I have also

seen her say 10 around a mouthfull of pizza.  When questioned she says that

it's different pain.  The throbbing causes her to sweat and have high rates,

the shocks are equally as painful but don't cause her to react the same way. 

It's so hard to know. 

I don't want to question her and I don't want them looking at us like we are

abusing things.  Somtimes they even make negative notes in her charts about

it.  What are some of your experiences or ideas on this?

Livvie

[Guest guest]

,

Thanks for your thoughts and feelings on things.  It really helps to hear from

others who have the same thing.  I wish I could convince her to get on the

list, I think it would be some real support for her.  So far I have not been

able to convince her to join.  I, having a mother's heart, seldom question.  I

just don't want to baby her or lead her to believe things are going to be better

if they are not.  But, I dont' want to NOT encourage and cause her to become

depressed.  The Dr is not even wanting to talk about surgery, he said it didn't

give that much relief last time what's the point in putting her through another

one.  Especially knowing that with each surgery the odds are growing that more

serious issues will arise.  She went in the hospital expecting to be there for

a couple of days for PT eval and then be transported to a rehab, she has been

there a week so far.  It seems the pain gets worse everyday.  However, they

have changed her

meds from mscontin, oxycodone, and neurontin to fentanyl patch, oxycodone,

pregablin, and some muscle relaxers.  That has her down to about a 6.  Which

is the best she has been since August.  Thanks again for your input and if you

can think of anything else that might be of help...send it on.

Livvie

Subject: Scale

To: tetheredspinalcord

Date: Wednesday, January 12, 2011, 7:30 PM

 

My daughter (28) is in the hospital now trying to get her pain under control. 

Her 4th detethering surgery was 2 years ago and she has not bounced back

since.  Her pain has not been controlled.  We have seen three different pain

management people and none of them have worked out.  The first had her so doped

up all she did was sleep.  We are now on the 3rd and she moved so slow that

Beth has begun a downward spiral.  Duke believes is related to inactivity. 

Not sure I agree with that.  She has lost a lot of tone in her legs and feet,

to the point of literally just draggin them.  She went from walking unassisted

in Oct. to walking with a cane, to a walker, to mainly a wheelchair now.  All

in just a couple of months.  She is now having some bladder issues.  They are

trying to get her pain better managed then move her to a rehab facility for some

inpatient rehab. 

I am just wondering how you guys feel about the pain scale.  The Dr.s and

nurses come in and ask her about her pain, when she tells them sometimes they

question her like they don't believe that hse is in that much pain.  To be

honest, I have questioned her myself.  I have seen her when her pain was

without doubt a 10, heart racing, sweating bullets, BP high.  But, I have also

seen her say 10 around a mouthfull of pizza.  When questioned she says that

it's different pain.  The throbbing causes her to sweat and have high rates,

the shocks are equally as painful but don't cause her to react the same way. 

It's so hard to know. 

I don't want to question her and I don't want them looking at us like we are

abusing things.  Somtimes they even make negative notes in her charts about

it.  What are some of your experiences or ideas on this?

Livvie

[Guest guest]

, she is working with an outpatient rehab clinic.  They manage her meds,

provide PT and Psychotherapy.  I really like the clinic, am just not crazy

about the FNP that handles the med part.  I think she is good, just that she

and I have a personality conflict.

When things became ACUTE, I took some time off from my job, I was having to

drive her 30 min one way to PT and counseling, she was going at least 3 days a

week if not more.  My thinking was that I could find a local pool that was warm

enough and take her myself, we could do that everyday, help speed things up. 

Not to mention that she is just one of the players in my life.  I have custody

of her 5 year old, a 24 year old son that lives with me and a husband who works

full time and goes to school full time.  I was literally at the end of my

rope.  I needed some time off.  When I asked if she would help with the FMLA

paperwork, she told me she didn't treat me she treated my daughter.  I needed

to see my primary care.  Well, I just have to disagree with her, she treats our

entire family.  Maybe not literally but, every single person in our household

is affected by Beth's pain.  How can we not be, when she is in her room crying,

or when one of us

has to get up in the middle of the night and take her to the ED because she is

in so much pain her heart rate is 170+.  How cold and unfeeling!  Oh well, I'm

gonna stop whining!  Thanks again for your input.

Livvie

Subject: Scale

To: tetheredspinalcord

Date: Wednesday, January 12, 2011, 7:30 PM

 

My daughter (28) is in the hospital now trying to get her pain under control. 

Her 4th detethering surgery was 2 years ago and she has not bounced back

since.  Her pain has not been controlled.  We have seen three different pain

management people and none of them have worked out.  The first had her so doped

up all she did was sleep.  We are now on the 3rd and she moved so slow that

Beth has begun a downward spiral.  Duke believes is related to inactivity. 

Not sure I agree with that.  She has lost a lot of tone in her legs and feet,

to the point of literally just draggin them.  She went from walking unassisted

in Oct. to walking with a cane, to a walker, to mainly a wheelchair now.  All

in just a couple of months.  She is now having some bladder issues.  They are

trying to get her pain better managed then move her to a rehab facility for some

inpatient rehab. 

I am just wondering how you guys feel about the pain scale.  The Dr.s and

nurses come in and ask her about her pain, when she tells them sometimes they

question her like they don't believe that hse is in that much pain.  To be

honest, I have questioned her myself.  I have seen her when her pain was

without doubt a 10, heart racing, sweating bullets, BP high.  But, I have also

seen her say 10 around a mouthfull of pizza.  When questioned she says that

it's different pain.  The throbbing causes her to sweat and have high rates,

the shocks are equally as painful but don't cause her to react the same way. 

It's so hard to know. 

I don't want to question her and I don't want them looking at us like we are

abusing things.  Somtimes they even make negative notes in her charts about

it.  What are some of your experiences or ideas on this?

Livvie

[Guest guest]

Since I am not convinced that her most recent and rapid decline is pain

related....anybody have any suggestions for a second opinion?  We currently are

followed at Duke by Fuchs and Grant, and would love to stay at least in NC.

Livvie

>

>

> My daughter (28) is in the hospital now trying to get her pain under

> control. Her 4th detethering surgery was 2 years ago and she has not

> bounced back since. Her pain has not been controlled. We have seen three

> different pain management people and none of them have worked out. The

> first had her so doped up all she did was sleep. We are now on the 3rd and

> she moved so slow that Beth has begun a downward spiral. Duke believes is

> related to inactivity. Not sure I agree with that. She has lost a lot of

> tone in her legs and feet, to the point of literally just draggin them. She

> went from walking unassisted in Oct. to walking with a cane, to a walker, to

> mainly a wheelchair now. All in just a couple of months. She is now having

> some bladder issues. They are trying to get her pain better managed then

> move her to a rehab facility for some inpatient rehab.

> I am just wondering how you guys feel about the pain scale. The Dr.s and

> nurses come in and ask her about her pain, when she tells them sometimes

> they question her like they don't believe that hse is in that much pain. To

> be honest, I have questioned her myself. I have seen her when her pain was

> without doubt a 10, heart racing, sweating bullets, BP high. But, I have

> also seen her say 10 around a mouthfull of pizza. When questioned she says

> that it's different pain. The throbbing causes her to sweat and have high

> rates, the shocks are equally as painful but don't cause her to react the

> same way. It's so hard to know.

> I don't want to question her and I don't want them looking at us like we

> are abusing things. Somtimes they even make negative notes in her charts

> about it. What are some of your experiences or ideas on this?

>

<<NEXT MESSAGE>>

When I asked if she would help with the FMLA paperwork, she told me she

> didn't treat me she treated my daughter.

>

<<NEXT MESSAGE>>

One of the PT's came in and said there was soemthing new on the MRI, a fluid

filled pocket. Does anybody have any ideas about that?

> Livvie

>

>

[Guest guest]

I would contact Dr. Frim in Chicago. U can probably have him review her

scans before making the trip to find out if he thinks she should b seen. I

am still worried she has a symptomatic syrinx (the pocket if CSF on her most

recent scan), which can cause rapid neuro decline and LOTS of pain.

Sent from my iPhone

Since I am not convinced that her most recent and rapid decline is pain

related....anybody have any suggestions for a second opinion? We currently

are followed at Duke by Fuchs and Grant, and would love to stay at least in

NC.

Livvie

>

>

> My daughter (28) is in the hospital now trying to get her pain under

> control. Her 4th detethering surgery was 2 years ago and she has not

> bounced back since. Her pain has not been controlled. We have seen three

> different pain management people and none of them have worked out. The

> first had her so doped up all she did was sleep. We are now on the 3rd and

> she moved so slow that Beth has begun a downward spiral. Duke believes is

> related to inactivity. Not sure I agree with that. She has lost a lot of

> tone in her legs and feet, to the point of literally just draggin them.

She

> went from walking unassisted in Oct. to walking with a cane, to a walker,

to

> mainly a wheelchair now. All in just a couple of months. She is now having

> some bladder issues. They are trying to get her pain better managed then

> move her to a rehab facility for some inpatient rehab.

> I am just wondering how you guys feel about the pain scale. The Dr.s and

> nurses come in and ask her about her pain, when she tells them sometimes

> they question her like they don't believe that hse is in that much pain.

To

> be honest, I have questioned her myself. I have seen her when her pain was

> without doubt a 10, heart racing, sweating bullets, BP high. But, I have

> also seen her say 10 around a mouthfull of pizza. When questioned she says

> that it's different pain. The throbbing causes her to sweat and have high

> rates, the shocks are equally as painful but don't cause her to react the

> same way. It's so hard to know.

> I don't want to question her and I don't want them looking at us like we

> are abusing things. Somtimes they even make negative notes in her charts

> about it. What are some of your experiences or ideas on this?

>

<<NEXT MESSAGE>>

When I asked if she would help with the FMLA paperwork, she told me she

> didn't treat me she treated my daughter.

>

<<NEXT MESSAGE>>

One of the PT's came in and said there was soemthing new on the MRI, a fluid

filled pocket. Does anybody have any ideas about that?

> Livvie

>

>

[Guest guest]

Am I wrong in thinking that these occur mainly in patients with spinal issues in

the thoracic area?  Hers is Lower...L1-L4. 

>

>

> My daughter (28) is in the hospital now trying to get her pain under

> control. Her 4th detethering surgery was 2 years ago and she has not

> bounced back since. Her pain has not been controlled. We have seen three

> different pain management people and none of them have worked out. The

> first had her so doped up all she did was sleep. We are now on the 3rd and

> she moved so slow that Beth has begun a downward spiral. Duke believes is

> related to inactivity. Not sure I agree with that. She has lost a lot of

> tone in her legs and feet, to the point of literally just draggin them.

She

> went from walking unassisted in Oct. to walking with a cane, to a walker,

to

> mainly a wheelchair now. All in just a couple of months. She is now having

> some bladder issues. They are trying to get her pain better managed then

> move her to a rehab facility for some inpatient rehab.

> I am just wondering how you guys feel about the pain scale. The Dr.s and

> nurses come in and ask her about her pain, when she tells them sometimes

> they question her like they don't believe that hse is in that much pain.

To

> be honest, I have questioned her myself. I have seen her when her pain was

> without doubt a 10, heart racing, sweating bullets, BP high. But, I have

> also seen her say 10 around a mouthfull of pizza. When questioned she says

> that it's different pain. The throbbing causes her to sweat and have high

> rates, the shocks are equally as painful but don't cause her to react the

> same way. It's so hard to know.

> I don't want to question her and I don't want them looking at us like we

> are abusing things. Somtimes they even make negative notes in her charts

> about it. What are some of your experiences or ideas on this?

>

<<NEXT MESSAGE>>

When I asked if she would help with the FMLA paperwork, she told me she

> didn't treat me she treated my daughter.

>

<<NEXT MESSAGE>>

One of the PT's came in and said there was soemthing new on the MRI, a fluid

filled pocket. Does anybody have any ideas about that?

> Livvie

>

>