RE: (unknown)

[Guest guest]

I too am wondering about her being over medicated.  Can anyone tell me what is

the usual dosage or if her dosage sounds like too much?  She is on 700mg of

gabapentin 3x day, 70mg slow release oxycodone 3x day,  90mg of cymbalta 1x day,

10 mg quick release oxycodone every 4 hours as needed, and xanax as needed.  It

seems like a lot to me but she took that same dosage in rehab and didn't seems

to be so drowsy during the day.  I am thinking the drowsiness during the day is

from not sleeping at night.  But, she is the same way at night and refuses to go

to bed.  I am so at a loss.  She has a follow-up with her surgeon tomorrow,  I

will ask him.  She couldn't get in to see the pain people until May. 

Thanks for all the comments and concern....you guys are the best support I have

right now.

Livvie

From: livviep62yahoo (DOT) com <livviep62yahoo (DOT) com>

Subject: (unknown)

To: tetheredspinalcord@ yahoogroups. com

Date: Wednesday, April 8, 2009, 3:41 PM

I am so frustrated I don't know where to begin.  My daughter had her 4th

de-tethering surgery 6 weeks ago.  She is on so much medicine, and none of it

seems to be helping much.  After the first 2 surgeries she was fine, and I

realize that age has a lot to do with it, but this time there are a lot of

issues that we have never faced before.  Her inability to control her bladder,

the constant constipation, anxiety, inability to sleep and the list goes on.  I

am frustrated and exhausted, I can't imagine how she feels.  I never see a smile

anymore, I just don't know what to do. 

She is rude to me and doesn't seem to care that she hurts my feelings.  Has no

consideration for the fact that my husband and I have taken on the

responsibility of raising a 4 year old because she can't bring herself to do the

right thing, or that I have taken 2 months off from work to help her out.  Now

she's mad because I won't allow her boyfriend and a friend of his to spend the

night in my home.  When is enough, enough,  what does she want blood.

Honest, I want to help her, and I know she is going through a hard time right

now, but this is not easy on any of us.  We are not sleeping, I get up 2 or 3

times a night and find her asleep in the wheelchair, when I tell her to go to

bed she tells me she's not sleepy.  This has been going on for almost a week

now.  It's like she is afraid to go to bed.  I don't know what to do.  I am

having to find her another primary care physician, she pissed off the one she

had, going to get pills for her boyfriend.  I didn't know she was doing this

until I called to schedule her an appointment to have her meds looked after and

try to get some home health papers signed and the Dr. wouldn't see her.  She

says she doesn't know why, but I know that she has used her " issues " in the past

to get narcotics for him.  i tried to explain to her that it will hurt her in

the long run, the time will come when she needs them and no one will want to

give them.  But, what do

I know I am just her mother.  After all, he, the boyfriend, knows it all. 

I hate to do it, but if her attitude doesn't change I am going to have to ask

her to leave.  I refuse put to my health, my marriage and the well being of her

child at risk when she gives me nothing but disrespect and attitude.

Thanks for allowing me to vent a little.  Now to the reason for the post.  What

are some ways that some of you deal with the pain, anxiety and other things that

go along with TSC, and does anyone know of a list for caregivers that might be

helpful?

Livvie

[Guest guest]

Livvie,

Please don't think I'm being intrusive. Sometimes I have this way of saying

things that bug people, because I'm kind of blunt, but I mean no disrespect to

your daughter at all.

All of your daughter's meds are sedating. Most pain meds are, but I think mixing

benzodiazepines with multiple narcotics is what killed Heath Ledger - none of

the meds were lethal, but all of them together did the trick. And

benzodiazepines can make you very irritable. Plus they're very addictive and if

she builds up a tolerance, the safe doses will fail to help and she will be more

than just a little irritable. If she's been on these drugs long enough, she

might be addicted (in the real sense and not just the physically dependent

sense).

Is her boyfriend taking drugs from her that she should be taking? I mean, does

she go without necessary meds so he can have? Regardless, what she's doing is

more than just alienating her doctors. She is breaking federal law and can be

put in jail for it. You have no obligation to bring drug users into your home,

and you might want to know the law regarding property seizure for drug dealing.

I'm not sure if your daughter distributing prescription drugs illegally is

considered the same as selling drugs under that law, but you do not want to find

that out the hard way. And here is the part where I might sound cold, but if my

daughter was doing what your daughter is, she'd be out of my house. If she can't

care for herself, get her into a rehab hospital or a rehab home. There she won't

have access to her meds except when she's having them dispensed to her and you

won't have to worry about the whole boyfriend issue. How incredibly unfair that

is to you, and

more importantly to her daughter.

I'm just trying to think of what my mom would have done to me had I treated her

poorly while my daughter and I were living in her home. Not that I ever was like

that, because I was so grateful for her help, especially after surgery, but she

wouldn't have tolerated even a little bit of it. We've always been that kind of

tough love family. She loves me and will do anything to help me, but she also

doesn't hesitate to kick me in the butt (figuratively, of course) if I need it.

You can't feel bad for not accepting the unacceptable. It might actually be more

helpful to her if she finds out that she can't be a brat as an adult and still

get treated well. In the real world, that kind of behavior isn't rewarded with a

warm bed and a mom who takes care of you.

As for her pain, I was on 2400 mg of neurontin (gabapentin) and it took care of

my pain. Have they tried Lyrica with her? I've been told that it usually works

better than neurontin, even though it works on the same pain mechanism. I've

never really taken narcotics for pain because they do weird things to my head.

Hallucinations aren't enough fun for me to take those drugs.  I also know

nothing about Cymbalta or the morphine pump. Someone here has had a gabapentin

pump implanted and it helped way more than the oral med did.

Good luck with all of this, Livvie. I feel for your daughter, but I feel more

for you as a mom. What a tough spot!  Many hugs!

From: livviep62yahoo (DOT) com <livviep62yahoo (DOT) com>

Subject: (unknown)

To: tetheredspinalcord@ yahoogroups. com

Date: Wednesday, April 8, 2009, 3:41 PM

I am so frustrated I don't know where to begin.  My daughter had her 4th

de-tethering surgery 6 weeks ago.  She is on so much medicine, and none of it

seems to be helping much.  After the first 2 surgeries she was fine, and I

realize that age has a lot to do with it, but this time there are a lot of

issues that we have never faced before.  Her inability to control her bladder,

the constant constipation, anxiety, inability to sleep and the list goes on.  I

am frustrated and exhausted, I can't imagine how she feels.  I never see a smile

anymore, I just don't know what to do. 

She is rude to me and doesn't seem to care that she hurts my feelings.  Has no

consideration for the fact that my husband and I have taken on the

responsibility of raising a 4 year old because she can't bring herself to do the

right thing, or that I have taken 2 months off from work to help her out.  Now

she's mad because I won't allow her boyfriend and a friend of his to spend the

night in my home.  When is enough, enough,  what does she want blood.

Honest, I want to help her, and I know she is going through a hard time right

now, but this is not easy on any of us.  We are not sleeping, I get up 2 or 3

times a night and find her asleep in the wheelchair, when I tell her to go to

bed she tells me she's not sleepy.  This has been going on for almost a week

now.  It's like she is afraid to go to bed.  I don't know what to do.  I am

having to find her another primary care physician, she pissed off the one she

had, going to get pills for her boyfriend.  I didn't know she was doing this

until I called to schedule her an appointment to have her meds looked after and

try to get some home health papers signed and the Dr. wouldn't see her.  She

says she doesn't know why, but I know that she has used her " issues " in the past

to get narcotics for him.  i tried to explain to her that it will hurt her in

the long run, the time will come when she needs them and no one will want to

give them.  But, what do

I know I am just her mother.  After all, he, the boyfriend, knows it all. 

I hate to do it, but if her attitude doesn't change I am going to have to ask

her to leave.  I refuse put to my health, my marriage and the well being of her

child at risk when she gives me nothing but disrespect and attitude.

Thanks for allowing me to vent a little.  Now to the reason for the post.  What

are some ways that some of you deal with the pain, anxiety and other things that

go along with TSC, and does anyone know of a list for caregivers that might be

helpful?

Livvie

[Guest guest]

, thanks for the posting, and don't worry, I  am a tad bit confrontive

and forward myself, you always know where you stand.  That's a good thing.

She doesn't take the benzo's on a regular basis only as needed, and I control

all meds so she has to go through me to get anything.  Actually, until February

22 she has needed no meds at all.  Only on the occasional flare up.  She was on

Lyrica in 07 after the last surgery.  It caused her to gain a lot of weight and

she took herself off all meds to lose weight.  She seemed to feel better so

never went back on them.  Then the boyfriend " hurt his back " and the troubles

started.  She gets angry with me questioning her everytime she asks for a

pill...she says " you think I'm hooked on the pain pills " .  Like I told her, I

don't think she's hooked on the pain pills, I think she's hooked on him and he's

hooked on the pain pills. 

I really am having a hard time with how I feel about this man.  It's not in my

nature to dislike or judge anyone, what he does is his business.  But, this

involves my daughter and he is controlling her.  They have been together for 5

years and he is the father of her child.  She is not going to leave him,

everyone, and I mean everyone has tried to convince her to go.  My husband, her

step-father, and I took custody of the baby 2 years ago.  The main reason we had

her was because my daughter was fresh out of surgery and not physically able to

care for her.  Then I started noticing a change, not only in my daughter but in

the living conditions they were in, and the people they were associating with. 

We just didn't feel that it was a stable healthy environment for my grandaughter

so, we did what we had to do.  At 46 I don't want to be a mother again, had

other things planned for this stage of my life.  But, if I want her to have any

kind of

normalcy I will have to be the one to provide it.  At least at his point.  Like

I told my daughter she can have her back when she proves that her life is clean

and they can provide a stable, safe environment for her.  Until then we provide

everything, and boy had I forgotten what an expense it is. 

The sad thing is it is very hard seeing your child with this kind of attitude. 

I brought her back here after surgery because she wanted to come here, but also

because this is a turning point in her life.  She went from being  well

functioning, physically anyway, to basically non-functioning.  How much of that

is permanent, it's still to early to tell.  Her surgery was March 3rd.  My

husband didn't want the drama that she brings with her.  But, I insisted and

he's been supportive.  I feel that this is not just another surgery, this is her

quality of life for the rest of her life, and anything I can do to help her get

it together is a step towards her being a good mother again.  She used to be, I

know it's still there. 

I insisted on inpatient rehab this time.  One reason was because there was no

way we could bring her home like she was, and the other was to keep the

boyfriend away for a while.  Didn't work the rehab center allowed himt o move

in.  she's an adult there was nothing I could do.  Oh well, she needed the rehab

anyway.  I am trying to stay positive, we go back to Duke today so maybe Dr.

Grant will have somethings to say that give me more hope that this is not

permanent, and life will be back to normal soon.  Thanks for the ears, and the

advice.

Livvie

From: livviep62yahoo (DOT) com <livviep62yahoo (DOT) com>

Subject: (unknown)

To: tetheredspinalcord@ yahoogroups. com

Date: Wednesday, April 8, 2009, 3:41 PM

I am so frustrated I don't know where to begin.  My daughter had her 4th

de-tethering surgery 6 weeks ago.  She is on so much medicine, and none of it

seems to be helping much.  After the first 2 surgeries she was fine, and I

realize that age has a lot to do with it, but this time there are a lot of

issues that we have never faced before.  Her inability to control her bladder,

the constant constipation, anxiety, inability to sleep and the list goes on.  I

am frustrated and exhausted, I can't imagine how she feels.  I never see a smile

anymore, I just don't know what to do. 

She is rude to me and doesn't seem to care that she hurts my feelings.  Has no

consideration for the fact that my husband and I have taken on the

responsibility of raising a 4 year old because she can't bring herself to do the

right thing, or that I have taken 2 months off from work to help her out.  Now

she's mad because I won't allow her boyfriend and a friend of his to spend the

night in my home.  When is enough, enough,  what does she want blood.

Honest, I want to help her, and I know she is going through a hard time right

now, but this is not easy on any of us.  We are not sleeping, I get up 2 or 3

times a night and find her asleep in the wheelchair, when I tell her to go to

bed she tells me she's not sleepy.  This has been going on for almost a week

now.  It's like she is afraid to go to bed.  I don't know what to do.  I am

having to find her another primary care physician, she pissed off the one she

had, going to get pills for her boyfriend.  I didn't know she was doing this

until I called to schedule her an appointment to have her meds looked after and

try to get some home health papers signed and the Dr. wouldn't see her.  She

says she doesn't know why, but I know that she has used her " issues " in the past

to get narcotics for him.  i tried to explain to her that it will hurt her in

the long run, the time will come when she needs them and no one will want to

give them.  But, what do

I know I am just her mother.  After all, he, the boyfriend, knows it all. 

I hate to do it, but if her attitude doesn't change I am going to have to ask

her to leave.  I refuse put to my health, my marriage and the well being of her

child at risk when she gives me nothing but disrespect and attitude.

Thanks for allowing me to vent a little.  Now to the reason for the post.  What

are some ways that some of you deal with the pain, anxiety and other things that

go along with TSC, and does anyone know of a list for caregivers that might be

helpful?

Livvie

[Guest guest]

" I insisted on inpatient rehab this time. One reason was because there was no

way we could bring her home like she was, and the other was to keep the

boyfriend away for a while. Didn't work the rehab center allowed him to move

in. She's an adult there was nothing I could do. Oh well, she needed the rehab

anyway. I am trying to stay positive, we go back to Duke today so maybe Dr.

Grant will have somethings to say that give me more hope that this is not

permanent, and life will be back to normal soon. Thanks for the ears, and the

advice. "

Wondering how everything went with your daughter's appointment today with her

Nsg. If your daughter clearly is not taking care of herself and is not able to

make clear coherant decisions -- there are two options, letting her go and by

that I mean - sitting her down with both you and your husband and firmly laying

things out on the table - reiterating that IP rehab is the best thing for her to

get her health & strength back - and that in order to do so she needs to

temporarily take a 'break' from her current boyfriend -- as with him 'living'

with her at rehab -- it is not helping anyone and causing her to take focus off

herself. With this said, clear boundaries need to be established. From what I've

read, it appears she is and does not care about getting better -- this is the

loss & grief talking as well as her meds -- but at the same time -- it's put an

extraordinary burden on your family. Depending on what your Nsg, Dr. Grant had

to say maybe she will reconsider IP rehab. If she still after having this

discussion refuses help from anyone -- well, this is when it may be best to make

a decision on how you and your family wish to proceed with her care & recovery.

Your daughter is the only one who can change her behavior and health, with

regards to recovery. Secondly, after this discussion -- serious life decisions

need to be made to help both you and your daughter -- the latter of which may be

expelling her from your house or deeming her unfit and going to court to have

her rendered incompetant to care for her ownself - resulting in power of

attorney being signed over to you by a judge and placing her in rehab where-in

there is a restraining order against her boyfriend coming anywhere near her.

Tough decisions. I'm sorry you're having to go through all this Livvie.

--

>

>

>

> From: livviep62yahoo (DOT) com <livviep62yahoo (DOT) com>

>

>

>

> Subject: (unknown)

>

>

>

> To: tetheredspinalcord@ yahoogroups. com

>

>

>

> Date: Wednesday, April 8, 2009, 3:41 PM

>

>

>

> I am so frustrated I don't know where to begin.  My daughter had her 4th

de-tethering surgery 6 weeks ago.  She is on so much medicine, and none of it

seems to be helping much.  After the first 2 surgeries she was fine, and I

realize that age has a lot to do with it, but this time there are a lot of

issues that we have never faced before.  Her inability to control her bladder,

the constant constipation, anxiety, inability to sleep and the list goes on.  I

am frustrated and exhausted, I can't imagine how she feels.  I never see a smile

anymore, I just don't know what to do. 

>

>

>

> She is rude to me and doesn't seem to care that she hurts my feelings.  Has no

consideration for the fact that my husband and I have taken on the

responsibility of raising a 4 year old because she can't bring herself to do the

right thing, or that I have taken 2 months off from work to help her out.  Now

she's mad because I won't allow her boyfriend and a friend of his to spend the

night in my home.  When is enough, enough,  what does she want blood.

>

>

>

> Honest, I want to help her, and I know she is going through a hard time right

now, but this is not easy on any of us.  We are not sleeping, I get up 2 or 3

times a night and find her asleep in the wheelchair, when I tell her to go to

bed she tells me she's not sleepy.  This has been going on for almost a week

now.  It's like she is afraid to go to bed.  I don't know what to do.  I am

having to find her another primary care physician, she pissed off the one she

had, going to get pills for her boyfriend.  I didn't know she was doing this

until I called to schedule her an appointment to have her meds looked after and

try to get some home health papers signed and the Dr. wouldn't see her.  She

says she doesn't know why, but I know that she has used her " issues " in the past

to get narcotics for him.  i tried to explain to her that it will hurt her in

the long run, the time will come when she needs them and no one will want to

give them.  But, what do

>

>

>

> I know I am just her mother.  After all, he, the boyfriend, knows it all. 

>

>

>

> I hate to do it, but if her attitude doesn't change I am going to have to ask

her to leave.  I refuse put to my health, my marriage and the well being of her

child at risk when she gives me nothing but disrespect and attitude.

>

>

>

> Thanks for allowing me to vent a little.  Now to the reason for the post. 

What are some ways that some of you deal with the pain, anxiety and other things

that go along with TSC, and does anyone know of a list for caregivers that might

be helpful?

>

>

>

> Livvie

>

>

>

>

[Guest guest]

Traci - Good. However, you again state another incorrect inference - I did not

say they aren't good surgeons. I did not put any innuendos in my post. I said

what I said - the people I spoke of were happy with this group (again, read

pleased, happy, not complaining, etc), then I added that I questioned why they

didn't ask themselves why though. I am not stating a negative opinion of what

they are accused of - I said I agree with the original poster; they should not

be required to operate on someone they do not know and is not their patient.

You keep forgetting/omitting this.

I was really hoping my last post was the last from me on this thread. I was

hoping that you would write some of what you wrote below but minus placing

assumptions/innuendos or trying to extract a negative from my post (again) that

was not there. I wrote that the people I knew were happy with their outcomes

and then wrote my questions as I listened to them.

Kathy

(unknown)

Kathy- I'm choosing not to go any further with the previous conversation. I

presented the facts as concisely as I could with regard to how the exacerbation

of chiari related comorbidities would warrant the types of surgical

interventions done by TCI physicians.

What it comes down to is there are reputations at stake. Unsubstantiated " word

of mouth " or " here say " could cumulatively lead to a demise in their

professions or a defamation of their character. By and large these caring and

knowledgeable doctors have done right by many more patients than they've been

accused of doing wrong by.

I encourage patients on this site to consider TCI physicians as a viable

option in chiari management. I think you will find, as I did, that they are very

good at their craft. Thanks, Traci

Sent from my iPhone