Re: My First PM Appt- Now I'm Nervous

[Guest guest]

Hi Lynn,

It's good that you are going to a pain clinic, they are more

equipped to help you manage your pain that your nsg or pcp

would be. I know the though of having to manage your pain is an

upsetting one, I was the same, up until maybe today. I thought

surgery would take it away. I've had two untetherings and it's just

became worse with each. I saw my nsg yesterday and got the

most detailed explanation of pain I've ever had. I really

understand it now and how no more surgery is going to cure me

of it. Most likely just make it worse. So I'm in the pain

management situation as well.

The best advice I can give you is to be honest. Tell them exactly

what kind of pain you are in, how bad it is and when you get it, if

not all the time. Is it affecting your sleep, how has it affected your

life, ( can you still work or not, have you had to give up activities

that you do for pleasure as well).

It would be a good idea if you are not already to start a pain

journal that lists the activity you did, where you felt the pain, what

kind of pain it was, and what level it was at.

I would also write up a small chart that shows what the levels

mean to you. For example level 2 is very low pain and can

continue with all normal activities, level 6 is pain that I can not

be distracted from, find it difficult to work at this level, usually lie

down etc. Sometime we see the 1--10 scale differently.

Hope it goes well.

-- In tetheredspinalcord@y..., " Lynn Hannigan " <hannigan@f...>

wrote:

> Hi all!

>

> Well, I finally got an appointment for the Pain Management

Clinic

> after my neuro realized the Zanaflex had no affect. Took a

week to

> get an appointment, my neuro had to fax all my info and write

some

> sort of letter of recommendation...Geez!! So, I go next Friday

and

> now I'm so NERVOUS!!

>

> I am also hoping it not gonna be one of those deals where I

get my

> hopes up that there is an " end in sight " , and then back to the

same-

> o,same-o...pain. It just seems like that's how it always goes.

Gosh

> about 4 or 5 years ago, my GP thought it was just arthritis and I

> tried several of those medications, then he realized that wasn't

> working so it was off to a neuro surgeon. He ran all the tests,

and

> decided he didn't want to mess with me...(which that took him

forever

> to decide, it seemed), then back to my " neighbor neuro " . Next

step,

> therapy and neurontin....no relief...he suggested " pain

management "

> then and of course, I had no clue what the heck " pain

management "

> was...I didn't want to manage it, I just wanted to get RID of it!!

> How silly of me...so, he then refered me to another neuro

surgeon

> which finally knew what was wrong with me!!! So all my

problems were

> gonna be solved...surgery...and back to normal. Although, I

give the

> neurosurgeon credit...he warned me that the pain could be

better,

> worse or stay the same.

>

> Well, here it is, 15 months after surgery, and off to the Pain

Clinic

> I go. At least I have some sort of idea that " Pain Management "

also

> means you should receive meds to help. I'm getting a little

wiser in

> my old age!!!

>

> So any advise before I head off to this clinic....I've heard some

> horror stories about pain clinics and then I've also heard some

great

> success stories.

>

> Sorry bout all the whining AGAIN>>> and thanks so much for

listening.

>

> Lynn

[Guest guest]

Hi Lynn,

Sorry I don't really know what the shot would be, I've never had

one myself. You can talk that over with your doctor and see if you

need it or not. I'm sure he or she will go through all the details

with you. You really don't have to worry as long as your nsg is

helping you at the moment, if you just hate this pain doctor you

can look for another one. Even if he starts treating you and you

decide you don't like what he is doing or his policy on pain

control you can still change to another doctor. So go with an

open mind, take in as much as you can, and think of this as

more of an interview to see if you want to hire this doctor to care

for you.

I'm taking 3 different medications for pain. Ms contin, nortriptlyne,

and neurontin. Each seem to work on a different pain. My doctor

calls this the " usual pain cocktail " . I also take morphine for break

through pain. We still haven't found the right dose or mix for me,

I'm still in a lot of pain if I move. It's working great if I don't move

though! I go in and we try a new medications or change my

dose of one I'm taking, I try it for a while then go back and report if

it's working or what's not working about it. Once it's right I will

probably only have to go back every 3 months for new

prescriptions, or less, I don't know yet.

I'm also doing light pool exercises. It's very important to keep the

muscles working, if they go hard its even more painful. Since I

don't walk now this is a bit of a problem for me, but might not be

for you.

Counselling is also a part of my pain program. Pain seems to

eat away at your spirt.

I went for a second untethering just for the reasons you

mentioned. 3 - 4 months after my first I started to lose feeling in

my feet and it slowly progressed from there to loss of feeling up

my legs, loss of motor control, and then loss of function. I went

from walking, to using a cane, to crutches, to a wheel chair within

9 months. Almost exactly one year after the first, I had my

second, there wasn't much of a risk as I was already becoming a

paraplegic. Luckily the surgery was more successful the second

time, I got some of my function back. It is a great feeling to be

able to do some of the simple things in life again, like get in and

out of the tub! Unfortunately though I was left with a lot more pain

than I had before, it's been so bad at times I would gladly give up

this function I gained to get rid of this pain. So depending on

what mood I'm in the surgery was a good thing or bad. I still

need to use a wheel chair full time but it's mostly due to the pain

level, if not for the pain I could use my crutches more.

I couldn't have made any other decision though, I didn't want to

become a paraplegic, and with the chiari affecting my arms I find

it hard to push my chair sometimes. Unfortunately things just

didn't work out as planed, I'm tethered again already, with all the

scar tissue in there I probably tethered as I heeled from the

surgery, but I won't be doing it again even if I lose more this time.

> > > Hi all!

> > >

> > > Well, I finally got an appointment for the Pain Management

> > Clinic

> > > after my neuro realized the Zanaflex had no affect. Took a

> > week to

> > > get an appointment, my neuro had to fax all my info and

write

> > some

> > > sort of letter of recommendation...Geez!! So, I go next

Friday

> > and

> > > now I'm so NERVOUS!!

> > >

> > > I am also hoping it not gonna be one of those deals where

I

> > get my

> > > hopes up that there is an " end in sight " , and then back to

the

> > same-

> > > o,same-o...pain. It just seems like that's how it always

goes.

> > Gosh

> > > about 4 or 5 years ago, my GP thought it was just arthritis

and I

> > > tried several of those medications, then he realized that

wasn't

> > > working so it was off to a neuro surgeon. He ran all the

tests,

> > and

> > > decided he didn't want to mess with me...(which that took

him

> > forever

> > > to decide, it seemed), then back to my " neighbor neuro " .

Next

> > step,

> > > therapy and neurontin....no relief...he suggested " pain

> > management "

> > > then and of course, I had no clue what the heck " pain

> > management "

> > > was...I didn't want to manage it, I just wanted to get RID of

> it!!

> > > How silly of me...so, he then refered me to another neuro

> > surgeon

> > > which finally knew what was wrong with me!!! So all my

> > problems were

> > > gonna be solved...surgery...and back to normal. Although, I

> > give the

> > > neurosurgeon credit...he warned me that the pain could be

> > better,

> > > worse or stay the same.

> > >

> > > Well, here it is, 15 months after surgery, and off to the Pain

> > Clinic

> > > I go. At least I have some sort of idea that " Pain

Management "

> > also

> > > means you should receive meds to help. I'm getting a little

> > wiser in

> > > my old age!!!

> > >

> > > So any advise before I head off to this clinic....I've heard

some

> > > horror stories about pain clinics and then I've also heard

some

> > great

> > > success stories.

> > >

> > > Sorry bout all the whining AGAIN>>> and thanks so much

for

> > listening.

> > >

> > > Lynn

[Guest guest]

Thank you so much Kathy- and I will definately keep you guys posted

and I will definately be asking you guys questions!! I am so very

much looking forward to this....relief maybe in sight. I have all my

info from the " Partners in Pain " website along with my daily journal

of pain levels.

I feel like I've done my homework so to speak, I just pray that he is

a caring and " listening " doctor.

Thank you again.

Lynn

> > So any advise before I head off to this clinic....I've heard some

> > horror stories about pain clinics and then I've also heard some

great

> > success stories.

> >

> > Sorry bout all the whining AGAIN>>> and thanks so much for

listening.

> >

> > Lynn

>

> Hi Lynn

>

> You're not whining at all! I've had nothing but good luck at my

pain

> clinic. They listen to me and always ask for my opinion when

deciding what

> steps need to be taken to try to get the pain under control.

>

> Hopefully your experience will be similar to mine and you'll start

having

> some great relief. My only advice for you is to be open to new

treatments

> and research what they suggest and ask here if anyone else has

tried it, but

> always keep in mind that what works or doesn't work for one person,

may or

> may not work for you. I always like the statement, " Least

restrictive

> treatment to begin with. "

>

> Good luck and let us know how it goes.

>

> Kathy