Re: the operation was success, but i am in agony ..

[Guest guest]

brian,thanks for your response. i always love your contributions to this

group.

okay, here goes. i am wondering if anyone else is experiencing this. On

may 22nd i had laminectomy and fusion L3-L4 with full hardware and stuff. the

operation was very successful. but now my whole body feels like someone beat

the living hell out of me. it is chronic and constant. my wrists, my arms,

my shoulders, my legs, ankles etc. throb constantly. cold anything makes it

1,000 times worse. it feels like all my nerve endings in my body are on

fire. my orthopedic spine surgeon thought maybe it was arthritis tht was being

aggravated but arthritis doctor took tests and said no. pain management put

me on fentanyl patch with oxyir 10 mg for breakthrough and that has really

calmed the pain down where my life is manageable. still in pain but able to

function. the nerve doctor i went to was a complete asshole. after talking

to me for one minute he said i was depressed and needed to get off all

medication. yes, i told him he is a jerk. so i am taking a breather before i

go to

a new nerve doctor. i did not have this pain before the surgery. my

thought is tht maybe my body is rejecting all the hardware and that is where

all

this pain is coming from. my spine surgeon that no. he said the pain would be

more localized in that area if this was the case. but i really think that

this is what is causing the pain. that my body is very unhappy with the cage,

rods, etc. has anyone else gone thru this? my operation itself was very

successful and i am glad i did it not that i had a choice.

thanks, marsha

[Guest guest]

Several weeks after my lumbar fusion, I had diffuse pain that was really

uncomfortable. Someone (can't remember who) said that it was possible that the

nerves that were compressed or cut during surgery are now healing and that puts

everything in an uproar, and it wouldn't last very long. I never did ask the

surgeon as I just figured it was just post-op pain after laying still for over 8

hrs on the OR table.

The explaination made me feel better and after several more weeks, it did get

better.

Not sure if that is what you are feeling, but just passing on what i was

advised.

BLEECKERST10012@... wrote:

the operation was very successful. but now my whole body feels like

someone beat the living hell out of me. it is chronic and constant. my wrists,

my arms, my shoulders, my legs, ankles etc. throb constantly.

Recent Activity

6

New Members

Visit Your Group

[Guest guest]

THANKS, vivian, i wish that that were the case. my surgery was on may 22nd

and the pain is there all the time. it is being controlled somewhat with the

patch and oxyir 10 mg. but it is there and it is pain nonetheless. doesn't

seem to want to go away. marsha

In a message dated 10/4/2006 3:11:46 PM Eastern Standard Time,

vivianharkness@... writes:

Several weeks after my lumbar fusion, I had diffuse pain that was really

uncomfortable. Someone (can't remember who) said that it was possible that the

nerves that were compressed or cut during surgery are now healing and that

puts everything in an uproar, and it wouldn't last very long. I never did ask

the surgeon as I just figured it was just post-op pain after laying still for

over 8 hrs on the OR table.

The explaination made me feel better and after several more weeks, it did

get better.

Not sure if that is what you are feeling, but just passing on what i was

advised.

_BLEECKERST10012@BLEECKE_ (mailto:BLEECKERST10012@...) wrote:

the operation was very successful. but now my whole body

[Guest guest]

I think we want so badly to have the surgery and be up and running as soon as

possible. But it just isn't the case. After my lumbar surgery, it took 6 mo to

feel back to post-injury/pre-surgery normal and almost a year to feel

" great " ...compared to how i felt before the surgery.

Just take it easy, don't over-do, and demand that your doctor talk more to

you. And you can always get a second opinion.

BLEECKERST10012@... wrote:

THANKS, vivian, i wish that that were the case. my surgery was on may 22nd

and the pain is there all the time. it is being controlled somewhat with the

patch and oxyir 10 mg. but it is there and it is pain nonetheless. doesn't

seem to want to go away. marsha

In a message dated 10/4/2006 3:11:46 PM Eastern Standard Time,

vivianharkness@... writes:

Several weeks after my lumbar fusion, I had diffuse pain that was really

uncomfortable. Someone (can't remember who) said that it was possible that the

nerves that were compressed or cut during surgery are now healing and that

puts everything in an uproar, and it wouldn't last very long. I never did ask

the surgeon as I just figured it was just post-op pain after laying still for

over 8 hrs on the OR table.

The explaination made me feel better and after several more weeks, it did

get better.

Not sure if that is what you are feeling, but just passing on what i was

advised.

_BLEECKERST10012@BLEECKE_ (mailto:BLEECKERST10012@...) wrote:

the operation was very successful. but now my whole body

[Guest guest]

hi everyone, i am in chronic pain. this is not about the surgery. i had

laminectomy and fusion with hardware L3-L4 on May 22nd. and i am pretty much

healed from the surgery. the pain in my leg was instantly gone. but then

after healing for a while, i started to get worse. with a new kind of pain.

all my joints were pulsating and radiating. my hands, my shoulders, my arms,

my legs, my knees, everywhere. pounding pain. burning pain. chronic

pain. and i thought perhaps it is my body rejecting the hardware. it is like

all my nerve endings are on fire. the pain is being controlled somewhat right

now by pain management. i am on a patch and oxyir. i really want to know if

anyone has gone thru this. the pain came after about 6 weeks of surgery but

i really did not recognize this as pain different from the surgery because i

was still healing from the surgery and just assumed this new pain was

connected to the surgery. but months later, the pain is really intense and my

body

is doing great from the surgery. this is just different pain. but oh

golly, this pain is really intense. has anybody's body gone thru this? or

maybe

their body rejected the hardware? or maybe your nerve endings were up in

arms over the invasion of the surgery and hardware into your body? has anyone

gone thru this? thanks,. marsha

[Guest guest]

For the first time i heard somebody saying " felt great after surgery " . Gives us

confidence.

Vivian Harkness <vivianharkness@...> wrote:

I think we want so badly to have the surgery and be up and running as

soon as possible. But it just isn't the case. After my lumbar surgery, it took 6

mo to feel back to post-injury/pre-surgery normal and almost a year to feel

" great " ...compared to how i felt before the surgery.

Just take it easy, don't over-do, and demand that your doctor talk more to you.

And you can always get a second opinion.

BLEECKERST10012@... wrote:

THANKS, vivian, i wish that that were the case. my surgery was on may 22nd

and the pain is there all the time. it is being controlled somewhat with the

patch and oxyir 10 mg. but it is there and it is pain nonetheless. doesn't

seem to want to go away. marsha

In a message dated 10/4/2006 3:11:46 PM Eastern Standard Time,

vivianharkness@... writes:

Several weeks after my lumbar fusion, I had diffuse pain that was really

uncomfortable. Someone (can't remember who) said that it was possible that the

nerves that were compressed or cut during surgery are now healing and that

puts everything in an uproar, and it wouldn't last very long. I never did ask

the surgeon as I just figured it was just post-op pain after laying still for

over 8 hrs on the OR table.

The explaination made me feel better and after several more weeks, it did

get better.

Not sure if that is what you are feeling, but just passing on what i was

advised.

_BLEECKERST10012@BLEECKE_ (mailto:BLEECKERST10012@...) wrote:

the operation was very successful. but now my whole body

[Guest guest]

Thanks...my surgery was over 4 years ago. I was still in pain after the surgery,

but it was better managed with non-narcotics. So I felt " great " compared to

what it was before...decreased pain and no narcotic fog.

I felt the fusion surgery was a success because it got me off all the hard

stuff, but my surgeon said it failed because I was still in pain. Guess it just

depends on what you are willing to put up with and what your expectations are.

As I get older, the pain is increasing, but I also have DDD and 4 more bulging

discs.

So the roller coaster ride continues.

Knowledge is power...so get all the information you can, do the research and

take control of your medical care.

shot maker <shotmakerr@...> wrote:

For the first time i heard somebody saying " felt great after surgery " .

Gives us confidence.

Recent Activity

5

New Members

Visit Your Group

[Guest guest]

jackie, i guess you got what i was saying about the pain. i am not

disabled. the pain patch and the meds have helped at this point buy i am

consumed by

it. my whole life has changed in the last year. no more rocking and

bopping. i definitely have had to slow down. it is very hard sometimes to wait

until 4:00 pm for dose #2 of the oxycontin because everything is pounding. i

went the route of the arthritis doctor and then the nerve doctor. the nerve

doctor spent one minute with me and then told me i was depressed and to get off

all meds. i told him he was despicable. or words to that effect. i am

trying to get up the energy again to start with making appts to see a new nerve

specialist. i am currently taking a breather from running to doctors. i do

see the pain doctor next week and i am going to ask him to up the dosage on

the oxyir. it is very stressful asking for narcotics. i am terrified that

they will treat me like a dope fiend behind that. as someone said this week,

you cannot see a person's pain. marsha

[Guest guest]

Marsha,

I'm glad to hear someone is having the same troubles. I too had surgery, but a

c6-c7 fusion. Prior to surgery I had nerve damage type pain in my left shoulder,

elbow with numbness and tingling in my left and it generated to my right side.

Originally the Dr.'s thought for SURE I had a typical rotator cuff injury

complicated by tendinitous/bursidious (sp?). I really didn't have neck pain per

se', but a constant fatigue in my neck with chronic type pain in my upper 1/4 of

my left side of my body. They told me when they could not manage my pain any

more the end result was surgery. Pain management was short lived with traction,

nerve blocks, epidurals, and lastly pain meds. They claim nothing controls nerve

pain. I had a bone spur, calcification, and a bulged disc on the left side.

Surgery was in July, my nerosurgeon was shocked when he got in there, I had

so......... much calcification on the interior of the vertebrea, and a

compression on the spinal cord itself, none of this showed on the MRI done in

Feb. When I came out of surgery, my right side was a mess, the pain was

horrible. He said had I not had the surgery when I did I would have lost use of

my legs in the next couple of months. But yet when I complained pre surgery that

I had leg issues I was crazy. The original pain got better for about 2 weeks,

then WHAM! it all started back, and the TOTAL body joint and bone pain is

unreal. When I originally started to go to the Dr.s about a year ago, I was

convinced I had rhumatoid arthritis, or lymes disease, that's the type of pain I

have. Those tests came back negative. Although today,3 months post surgery, I

right back to where I was a year ago, but now I have neck pain, just under the

fusion, although I do not have total body burning sensations. My nerosurgeon,

I'm sure thinks I'm nuts, he's wrote me off, told me he doesn't have a clue what

the problem is, I should go back to my reg. MD or to a rhuemotologist. Getting

an appt. with one has taken on a life of it's own. Nov. 1st is the soonest

unless I want to drive 3 1/2 hrs, I have trouble shopping 1 hour from my home

and business, because of the drive. The closest I could get to home is 1 1/2

hours away......what a mess.

I started back with my chiropractor, he thinks there is a possible septicemia or

rejection from the hardware, but he hasn't taken into consideration that there

was this pain before I believe just masked by the neck problem.

Anyhow if anyone has an insight to this please drop me a line, I would love to

be pain free again, 42 is way too young to be disabled, I feel like I'm 100.

Best wishes to all, hope to hear from anyone.

Jackie Bauknecht

Re: the operation was success, but i am in

agony ..

hi everyone, i am in chronic pain. this is not about the surgery. i had

laminectomy and fusion with hardware L3-L4 on May 22nd. and i am pretty much

healed from the surgery. the pain in my leg was instantly gone. but then

after healing for a while, i started to get worse. with a new kind of pain.

all my joints were pulsating and radiating. my hands, my shoulders, my arms,

my legs, my knees, everywhere. pounding pain. burning pain. chronic

pain. and i thought perhaps it is my body rejecting the hardware. it is like

all my nerve endings are on fire. the pain is being controlled somewhat right

now by pain management. i am on a patch and oxyir. i really want to know if

anyone has gone thru this. the pain came after about 6 weeks of surgery but

i really did not recognize this as pain different from the surgery because i

was still healing from the surgery and just assumed this new pain was

connected to the surgery. but months later, the pain is really intense and my

body

is doing great from the surgery. this is just different pain. but oh

golly, this pain is really intense. has anybody's body gone thru this? or

maybe

their body rejected the hardware? or maybe your nerve endings were up in

arms over the invasion of the surgery and hardware into your body? has anyone

gone thru this? thanks,. marsha

[Guest guest]

I was cut off the meds at my 6 wk appt. My nerosurgeon said he never perscribes

beyond 2 weeks post surgery,I was the exception. I was on Oxy and valuim, great

combination, the Oxy doesn't seem to work for me without the relaxiant unless I

took two which I was perscribed if needed. I do have patches left from my reg.

MD prior to the surgery, but am afraid to get back on them. I can relate to the

stressers, of course we are addicts.......aren't we????

In the bar business, I see addicts on a regular basis, they go to the walk in

and complain of a hang nail and get demerol shots, I go without pain meds

because I COULD get addicted.....really???? Why don't they let me make that

choice. What I thought was funny was, when this all began, I told the Dr.'s I

can't hunt, I can't ride ATV's, I can't show my dogs, all of my hobbies have

been on hold for over a year now, but the day I said I'm having trouble getting

through a work day( I'm a 26 yr veteran pet groomer) OH MY GAWD, we better do

something now. Appearenly quality of life is not the important issue, heaven

forbid we shouldn't work though. Well guess what, now I've been out of work

since early July, and I don't have the stamina to go back, Dr. dropped the ball,

I don't even know if I'm released to return to work, he doesn't need to see me

anymore. I feel like I'm in a Dr. black hole, I don't know where to go. I don't

have the selection in Dr.'s like those in the larger cities without making it an

all day affair. I need to get my life back, and I guess my point is if pain meds

are going to get me close to that goal, at this point what the hell?!

Jackie

Re: the operation was success, but i am in

agony ..

jackie, i guess you got what i was saying about the pain. i am not

disabled. the pain patch and the meds have helped at this point buy i am

consumed by

it. my whole life has changed in the last year. no more rocking and

bopping. i definitely have had to slow down. it is very hard sometimes to wait

until 4:00 pm for dose #2 of the oxycontin because everything is pounding. i

went the route of the arthritis doctor and then the nerve doctor. the nerve

doctor spent one minute with me and then told me i was depressed and to get

off

all meds. i told him he was despicable. or words to that effect. i am

trying to get up the energy again to start with making appts to see a new

nerve

specialist. i am currently taking a breather from running to doctors. i do

see the pain doctor next week and i am going to ask him to up the dosage on

the oxyir. it is very stressful asking for narcotics. i am terrified that

they will treat me like a dope fiend behind that. as someone said this week,

you cannot see a person's pain. marsha

[Guest guest]

Jackie, i have always been totally anti drugs. that is, until the pain

became so intense. now i live with drugs and that is fine with me. as long as

the pain is kept under control and i can function. i think your very next

step, asap, is to get to a physiatrist, also known as a pain doctor or pain

specialist. my surgeon cut me off drugs also after 7 weeks but he did make an

appt for me with a pain specialist and that is who i am seeing now. good luck,

marsha

[Guest guest]

Jackie,

I am very sorry to hear what you are going through. There is more to pain

management than you have been through and there is medication that works for

nerve pain despite what you've been told. You need to seek some competent

Pain Management doctors (get ones that are board certified) since the ones

you had before obviously weren't. Pain itself is a severe problem and

can/does result in disability.

I just had my SSD hearing last week and am waiting a written decision over

the next 30-60 days. The lawyer seemed to think I had a 50% chance of

getting it but is already committed to appealing to the federal level. The

problem I have in getting SSD is because I am young (40) and my case is

based on pain and side effects of the medications. I have moderately severe

thoracic DDD coupled with numerous herniated disc, the worse compressing my

spinal cord 6mm. I also have severe arthritis in my lower back that has been

getting worse over the past 2 years most likely from all the steroids I've

had shot in my back.

Here are some of the medications that work for nerve pain:

* Neurontin

* Lyrica

* Cymbalta

* Tri-cyclic anti-depressants

* Fentanyl patches

* Oxycontin/zanaflex taken together

* Topamax

Just about any medication used to control problems of the brain seem to help

with nerve pain. Granted most nothing will completely eliminate your pain, I

can attest the above do relieve pain. You said that the pain meds works

better when taken with the relaxant; it's proven that it does indeed enhance

the effectiveness of the pain medication. Don't think anything negative

about taking the meds to recover some semblance of a quality of life. If you

can get back just some quality and take things one day at a time, it makes

it tolerable. Go to your primary care provider and ask to be referred to a

Pain Management Clinic/Doctor. It's the best choice.

I do wish you luck. Be persistent and NEVER GIVE UP. One thing I have

learned is that you need to be your own doctor. Do as much research as you

can about you injury, surgery, recovery times and pain management. There

have been several things I have been able to tell my doctor about and he has

been willing to prescribe the meds for a try. I will list the meds I take

for reference and maybe they will help maybe not. My levels are still high

but I am able to function a little. I can't work and was medically

disqualified in Dec 04. I've been out of work since. I try to do some

hobbies around the house with limited degrees of success.

Medications:

* 3600 mg Neurontin/day

* 120 mg oxycontin/day

* 60 mg Oxycodone/day

* (2) 100 micrograms/hr Fentanyl patches

* 30 mg Cymbalta/day

* 150 mg Lyrica/day

* 16 mg zanaflex/day

As you can tell, it's quite the laundry list. I don't drive any more unless

absolutely urgent and without taking the pain medication for breakthrough

pain. I had to sell my 2003 Harley, 4 wheeler, and travel trailer. I had to

get the bills down since I lost a good chunk of money. Long-term disability

pays 70% of my base pay so this helps but has been a real pain to deal with.

Every three months I have to fill out forms and then the doctor has to fill

out forms so continue coverage.

I hope technology advances to allow a less invasive surgery to fix my discs.

Right now they would have to split me open and enter through the chest

deflating a lung and moving my heart just to get the affected discs. There

is good chance of paralysis and increased pain post surgery so the

neurosurgeon will really only operate for emergent situation only such as

going paralyzed or rapid degradation of neurological exam.

Any way, I hope some of this information helps,

Re: the operation was success, but i am

in agony ..

I was cut off the meds at my 6 wk appt. My nerosurgeon said he never

perscribes beyond 2 weeks post surgery,I was the exception. I was on Oxy and

valuim, great combination, the Oxy doesn't seem to work for me without the

relaxiant unless I took two which I was perscribed if needed. I do have

patches left from my reg. MD prior to the surgery, but am afraid to get back

on them. I can relate to the stressers, of course we are

addicts.......aren't we????

In the bar business, I see addicts on a regular basis, they go to the walk

in and complain of a hang nail and get demerol shots, I go without pain meds

because I COULD get addicted.....really???? Why don't they let me make that

choice. What I thought was funny was, when this all began, I told the Dr.'s

I can't hunt, I can't ride ATV's, I can't show my dogs, all of my hobbies

have been on hold for over a year now, but the day I said I'm having trouble

getting through a work day( I'm a 26 yr veteran pet groomer) OH MY GAWD, we

better do something now. Appearenly quality of life is not the important

issue, heaven forbid we shouldn't work though. Well guess what, now I've

been out of work since early July, and I don't have the stamina to go back,

Dr. dropped the ball, I don't even know if I'm released to return to work,

he doesn't need to see me anymore. I feel like I'm in a Dr. black hole, I

don't know where to go. I don't have the selection in Dr.'s like those in

the larger cities without making it an all day affair. I need to get my life

back, and I guess my point is if pain meds are going to get me close to that

goal, at this point what the hell?!

Jackie

Re: the operation was success, but i

am in agony ..

jackie, i guess you got what i was saying about the pain. i am not

disabled. the pain patch and the meds have helped at this point buy i am

consumed by

it. my whole life has changed in the last year. no more rocking and

bopping. i definitely have had to slow down. it is very hard sometimes to

wait

until 4:00 pm for dose #2 of the oxycontin because everything is pounding.

i

went the route of the arthritis doctor and then the nerve doctor. the

nerve

doctor spent one minute with me and then told me i was depressed and to

get off

all meds. i told him he was despicable. or words to that effect. i am

trying to get up the energy again to start with making appts to see a new

nerve

specialist. i am currently taking a breather from running to doctors. i do

see the pain doctor next week and i am going to ask him to up the dosage

on

the oxyir. it is very stressful asking for narcotics. i am terrified that

they will treat me like a dope fiend behind that. as someone said this

week,

you cannot see a person's pain. marsha

[Guest guest]

I had a doctor almost laugh at me when I told him how upset I was that I

couldn't go sleeding with my boys. These doctors don't seem to care that we

can't do anything. Of couse I'm depressed. I was perfectly fine until someone

moved me the wrong way during a knee surgery. Now I am in limbo and trying to

prove it will be practically impossible.

Jackie Bauknecht <sheldane@...> wrote: I was cut off the meds at

my 6 wk appt. My nerosurgeon said he never perscribes beyond 2 weeks post

surgery,I was the exception. I was on Oxy and valuim, great combination, the Oxy

doesn't seem to work for me without the relaxiant unless I took two which I was

perscribed if needed. I do have patches left from my reg. MD prior to the

surgery, but am afraid to get back on them. I can relate to the stressers, of

course we are addicts.......aren't we????

In the bar business, I see addicts on a regular basis, they go to the walk in

and complain of a hang nail and get demerol shots, I go without pain meds

because I COULD get addicted.....really???? Why don't they let me make that

choice. What I thought was funny was, when this all began, I told the Dr.'s I

can't hunt, I can't ride ATV's, I can't show my dogs, all of my hobbies have

been on hold for over a year now, but the day I said I'm having trouble getting

through a work day( I'm a 26 yr veteran pet groomer) OH MY GAWD, we better do

something now. Appearenly quality of life is not the important issue, heaven

forbid we shouldn't work though. Well guess what, now I've been out of work

since early July, and I don't have the stamina to go back, Dr. dropped the ball,

I don't even know if I'm released to return to work, he doesn't need to see me

anymore. I feel like I'm in a Dr. black hole, I don't know where to go. I don't

have the selection in Dr.'s like those in the larger

cities without making it an all day affair. I need to get my life back, and I

guess my point is if pain meds are going to get me close to that goal, at this

point what the hell?!

Jackie

Re: the operation was success, but i am in

agony ..

jackie, i guess you got what i was saying about the pain. i am not

disabled. the pain patch and the meds have helped at this point buy i am

consumed by

it. my whole life has changed in the last year. no more rocking and

bopping. i definitely have had to slow down. it is very hard sometimes to wait

until 4:00 pm for dose #2 of the oxycontin because everything is pounding. i

went the route of the arthritis doctor and then the nerve doctor. the nerve

doctor spent one minute with me and then told me i was depressed and to get off

all meds. i told him he was despicable. or words to that effect. i am

trying to get up the energy again to start with making appts to see a new nerve

specialist. i am currently taking a breather from running to doctors. i do

see the pain doctor next week and i am going to ask him to up the dosage on

the oxyir. it is very stressful asking for narcotics. i am terrified that

they will treat me like a dope fiend behind that. as someone said this week,

you cannot see a person's pain. marsha

[Guest guest]

When I saw a neurologist, he told me " I don't write prescriptions for vicodine

1-2 tabs, 4 times a day and I won't " . I didn't ask him for meds, I asked him

for help. He treated me like I was a druggie and referred me to a neurosurgeon

friend of his. I have declined his buddy and will choose my own neurosurgeon

who has no relation to him.

For pain I take Lyrica 75mg 2x daily and vicodin 7.5, 1-2 4xdaily

Phyllis

3 herniated cervical discs and radiculopathy, myelopathy

biddolf <biddolf@...> wrote:

Jackie,

I am very sorry to hear what you are going through. There is more to pain

management than you have been through and there is medication that works for

nerve pain despite what you've been told. You need to seek some competent

Pain Management doctors (get ones that are board certified) since the ones

you had before obviously weren't. Pain itself is a severe problem and

can/does result in disability.

I just had my SSD hearing last week and am waiting a written decision over

the next 30-60 days. The lawyer seemed to think I had a 50% chance of

getting it but is already committed to appealing to the federal level. The

problem I have in getting SSD is because I am young (40) and my case is

based on pain and side effects of the medications. I have moderately severe

thoracic DDD coupled with numerous herniated disc, the worse compressing my

spinal cord 6mm. I also have severe arthritis in my lower back that has been

getting worse over the past 2 years most likely from all the steroids I've

had shot in my back.

Here are some of the medications that work for nerve pain:

* Neurontin

* Lyrica

* Cymbalta

* Tri-cyclic anti-depressants

* Fentanyl patches

* Oxycontin/zanaflex taken together

* Topamax

Just about any medication used to control problems of the brain seem to help

with nerve pain. Granted most nothing will completely eliminate your pain, I

can attest the above do relieve pain. You said that the pain meds works

better when taken with the relaxant; it's proven that it does indeed enhance

the effectiveness of the pain medication. Don't think anything negative

about taking the meds to recover some semblance of a quality of life. If you

can get back just some quality and take things one day at a time, it makes

it tolerable. Go to your primary care provider and ask to be referred to a

Pain Management Clinic/Doctor. It's the best choice.

I do wish you luck. Be persistent and NEVER GIVE UP. One thing I have

learned is that you need to be your own doctor. Do as much research as you

can about you injury, surgery, recovery times and pain management. There

have been several things I have been able to tell my doctor about and he has

been willing to prescribe the meds for a try. I will list the meds I take

for reference and maybe they will help maybe not. My levels are still high

but I am able to function a little. I can't work and was medically

disqualified in Dec 04. I've been out of work since. I try to do some

hobbies around the house with limited degrees of success.

Medications:

* 3600 mg Neurontin/day

* 120 mg oxycontin/day

* 60 mg Oxycodone/day

* (2) 100 micrograms/hr Fentanyl patches

* 30 mg Cymbalta/day

* 150 mg Lyrica/day

* 16 mg zanaflex/day

As you can tell, it's quite the laundry list. I don't drive any more unless

absolutely urgent and without taking the pain medication for breakthrough

pain. I had to sell my 2003 Harley, 4 wheeler, and travel trailer. I had to

get the bills down since I lost a good chunk of money. Long-term disability

pays 70% of my base pay so this helps but has been a real pain to deal with.

Every three months I have to fill out forms and then the doctor has to fill

out forms so continue coverage.

I hope technology advances to allow a less invasive surgery to fix my discs.

Right now they would have to split me open and enter through the chest

deflating a lung and moving my heart just to get the affected discs. There

is good chance of paralysis and increased pain post surgery so the

neurosurgeon will really only operate for emergent situation only such as

going paralyzed or rapid degradation of neurological exam.

Any way, I hope some of this information helps,

Re: the operation was success, but i am

in agony ..

I was cut off the meds at my 6 wk appt. My nerosurgeon said he never

perscribes beyond 2 weeks post surgery,I was the exception. I was on Oxy and

valuim, great combination, the Oxy doesn't seem to work for me without the

relaxiant unless I took two which I was perscribed if needed. I do have

patches left from my reg. MD prior to the surgery, but am afraid to get back

on them. I can relate to the stressers, of course we are

addicts.......aren't we????

In the bar business, I see addicts on a regular basis, they go to the walk

in and complain of a hang nail and get demerol shots, I go without pain meds

because I COULD get addicted.....really???? Why don't they let me make that

choice. What I thought was funny was, when this all began, I told the Dr.'s

I can't hunt, I can't ride ATV's, I can't show my dogs, all of my hobbies

have been on hold for over a year now, but the day I said I'm having trouble

getting through a work day( I'm a 26 yr veteran pet groomer) OH MY GAWD, we

better do something now. Appearenly quality of life is not the important

issue, heaven forbid we shouldn't work though. Well guess what, now I've

been out of work since early July, and I don't have the stamina to go back,

Dr. dropped the ball, I don't even know if I'm released to return to work,

he doesn't need to see me anymore. I feel like I'm in a Dr. black hole, I

don't know where to go. I don't have the selection in Dr.'s like those in

the larger cities without making it an all day affair. I need to get my life

back, and I guess my point is if pain meds are going to get me close to that

goal, at this point what the hell?!

Jackie

Re: the operation was success, but i

am in agony ..

jackie, i guess you got what i was saying about the pain. i am not

disabled. the pain patch and the meds have helped at this point buy i am

consumed by

it. my whole life has changed in the last year. no more rocking and

bopping. i definitely have had to slow down. it is very hard sometimes to

wait

until 4:00 pm for dose #2 of the oxycontin because everything is pounding.

i

went the route of the arthritis doctor and then the nerve doctor. the

nerve

doctor spent one minute with me and then told me i was depressed and to

get off

all meds. i told him he was despicable. or words to that effect. i am

trying to get up the energy again to start with making appts to see a new

nerve

specialist. i am currently taking a breather from running to doctors. i do

see the pain doctor next week and i am going to ask him to up the dosage

on

the oxyir. it is very stressful asking for narcotics. i am terrified that

they will treat me like a dope fiend behind that. as someone said this

week,

you cannot see a person's pain. marsha

[Guest guest]

Greetings all.. I hope you are all well, and comfortable as can be.

I enjoyed reading both of these posts because they are so similar to many of my

challenges, and the tapes we play in our heads, the questions, the battles.

In a nutshell, I am new here.. but not new to pain. I have degenerative

arthritis, tendonitis, bursitis, (bone on bone in my right shoulder) and use my

arms to walk, via manual wheelchair. Every single step a reminder.

I, like you, think quality of life should be worth alot! I have actually had

medical staff tell me, " get an electric wheelchair and check into an assisted

living " . My response is, then what, put a bullet in my head? Why don't people

seem to care about people thriving anymore? A few pain meds or a pain patch, is

usually a minimal opioid treatment and acceptable and very workable solution to

some people, who then can go back to feeling " human " and viable, and lovable,

even.

I would bet there isn't a one of us on here who can't list the thousand other

things we do in our pain regimen as well.. the things we've tried, the books

we've read, the mantra we've chatted, the exercises and therapies we do. I see

the Sarno book finally got mentioned. Not a bad read, but I had one Doc tell me

to read it, learn it, use it, or never come back. But it is a decent read, and

has some tips worth trying if you believe in mind over matter, which I do.

Having said that.. wish me luck.. I have an appointment with another Doc

tomorrow, a clinic just for my " basic " health needs. I learned my insurance will

not pay my former doc any longer. So now I need all new scripts for basic things

like blood pressure meds, ostomy appliances, wheelchair repair, that sort. I am

going to bring up pain management, but haven't been on meds for some time now..

and the level of suffering is severe. I am keeping it together, facing each day

as the challenging miracle that it is.

For those who can get meds, count your lucky stars, or blessings, or whatever

you count. Even with the crappy side effects (which I know there are plenty)

it's a good tool as part of the pain regime we all face each day.

Thank you Betsy for your kind words, and offering and moderating this board. I

will become more active in time, for now it's all I can do to face the day.

Brightest of Blessings to all.. and my prayers yours eternal.. Lotus

Re: the operation was success, but i am in

agony ..

jackie, i guess you got what i was saying about the pain. i am not

disabled. the pain patch and the meds have helped at this point buy i am

consumed by

it. my whole life has changed in the last year. no more rocking and

bopping. i definitely have had to slow down. it is very hard sometimes to wait

until 4:00 pm for dose #2 of the oxycontin because everything is pounding. i

went the route of the arthritis doctor and then the nerve doctor. the nerve

doctor spent one minute with me and then told me i was depressed and to get

off

all meds. i told him he was despicable. or words to that effect. i am

trying to get up the energy again to start with making appts to see a new

nerve

specialist. i am currently taking a breather from running to doctors. i do

see the pain doctor next week and i am going to ask him to up the dosage on

the oxyir. it is very stressful asking for narcotics. i am terrified that

they will treat me like a dope fiend behind that. as someone said this week,

you cannot see a person's pain. marsha

[Guest guest]

lotus, thank you for joining our group. and good luck with your appointment

today. i know how stressful that is. it is extremely stressful for me and

i am very strong minded and independent. i wish you much success in getting

the help you need. marsha

[Guest guest]

Hi Lotus

Wow I can't believe how strong willed people are in this group considering

their challenges. I believe in mind over matter except that in my case

it's the bad version. I suffer from a mood disorder on top of chronic lower

back pain and I can't figure out what causes what to get worse.

Does the pain influence my mood or does my mood make my pain feel worse than

it is ? It's probably both. As opposed to most folks here I don't even

know what I have. No-one can tell me. I have a degenerated disc in L5 but

after 10 years of trying to fix that I'm still here in constant pain.

Besides, it

might not even really be the source of pain - it's just the obvious spot

every spinedoc looks at cause they can't see anything else.

I do feel that If I was a happier person generally I'd probably deal with

the pain better. Instead I've been letting it ruin my every day. I

constantly monitor it

hoping for some kind of miracle but no such thing. I guess I'm lucky that I

can still hold a full time job even it it's hard. However, I don't think

it's fair

for Doctors to say " Ah well if you have a full time job it can't be that bad

- just manage the pain " . That's pretty much what I've been told over again.

That plus the guy at Stanford who told me flat out I won't get rid of this

anymore - it's been too long. " we know much more about transplanting a heart

than how the spine works " - comforting isn't it ?

As far as pain meds go I'm super afraid of addiction and we all know that

all the good stuff is addictive. I wish I could take norco every day but it

stops working if I do that.

I'd have to crank up the dose all the time and it's easy to see where that

leads...it seems a lot of you folks here take pain meds every day but

doesn't that cause problems eventually ?

Well now I'm just rambling on...

On 10/5/06, Lotus Hamilton <bigideas@...> wrote:

>

> Greetings all.. I hope you are all well, and comfortable as can be.

>

> I enjoyed reading both of these posts because they are so similar to many

> of my challenges, and the tapes we play in our heads, the questions, the

> battles.

>

> In a nutshell, I am new here.. but not new to pain. I have degenerative

> arthritis, tendonitis, bursitis, (bone on bone in my right shoulder) and use

> my arms to walk, via manual wheelchair. Every single step a reminder.

>

> I, like you, think quality of life should be worth alot! I have actually

> had medical staff tell me, " get an electric wheelchair and check into an

> assisted living " . My response is, then what, put a bullet in my head? Why

> don't people seem to care about people thriving anymore? A few pain meds or

> a pain patch, is usually a minimal opioid treatment and acceptable and very

> workable solution to some people, who then can go back to feeling " human "

> and viable, and lovable, even.

>

> I would bet there isn't a one of us on here who can't list the thousand

> other things we do in our pain regimen as well.. the things we've tried, the

> books we've read, the mantra we've chatted, the exercises and therapies we

> do. I see the Sarno book finally got mentioned. Not a bad read, but I had

> one Doc tell me to read it, learn it, use it, or never come back. But it is

> a decent read, and has some tips worth trying if you believe in mind over

> matter, which I do.

>

> Having said that.. wish me luck.. I have an appointment with another Doc

> tomorrow, a clinic just for my " basic " health needs. I learned my insurance

> will not pay my former doc any longer. So now I need all new scripts for

> basic things like blood pressure meds, ostomy appliances, wheelchair repair,

> that sort. I am going to bring up pain management, but haven't been on meds

> for some time now.. and the level of suffering is severe. I am keeping it

> together, facing each day as the challenging miracle that it is.

>

> For those who can get meds, count your lucky stars, or blessings, or

> whatever you count. Even with the crappy side effects (which I know there

> are plenty) it's a good tool as part of the pain regime we all face each

> day.

>

> Thank you Betsy for your kind words, and offering and moderating this

> board. I will become more active in time, for now it's all I can do to face

> the day.

>

> Brightest of Blessings to all.. and my prayers yours eternal.. Lotus

>

> Re: the operation was success, but i

> am in agony ..

>

> jackie, i guess you got what i was saying about the pain. i am not

> disabled. the pain patch and the meds have helped at this point buy i am

> consumed by

> it. my whole life has changed in the last year. no more rocking and

> bopping. i definitely have had to slow down. it is very hard sometimes to

> wait

> until 4:00 pm for dose #2 of the oxycontin because everything is pounding.

> i

> went the route of the arthritis doctor and then the nerve doctor. the

> nerve

> doctor spent one minute with me and then told me i was depressed and to

> get off

> all meds. i told him he was despicable. or words to that effect. i am

> trying to get up the energy again to start with making appts to see a new

> nerve

> specialist. i am currently taking a breather from running to doctors. i do

>

> see the pain doctor next week and i am going to ask him to up the dosage

> on

> the oxyir. it is very stressful asking for narcotics. i am terrified that

> they will treat me like a dope fiend behind that. as someone said this

> week,

> you cannot see a person's pain. marsha

>

>

[Guest guest]

HI, stucky, i too am terrified of addiction. however, i find this very

different. i use the pills/patch according to the prescripion. carefully.

when the pain is there. i am not afraid of becoming addicted because i truly

believe that when you take narcotics out of a necessity and according to the

correct dosage, carefully, then you will be okay with them. for me i know

right now that the quality of line is dependent upon me taking the narcotics.

right now.

marsha

[Guest guest]

Me too. Even with the meds. life will never be the same but they help a lot.

Can you imagine the pain without medication? We are the people that the

medication is designed for, so we should not feel guilty. That is what it is

for, people suffering.

Phyllis

BLEECKERST10012@... wrote:

HI, stucky, i too am terrified of addiction. however, i find this very

different. i use the pills/patch according to the prescripion. carefully.

when the pain is there. i am not afraid of becoming addicted because i truly

believe that when you take narcotics out of a necessity and according to the

correct dosage, carefully, then you will be okay with them. for me i know

right now that the quality of line is dependent upon me taking the narcotics.

right now.

marsha

[Guest guest]

Thank you so much, Marsha. My appointment went very well. The new Doc treated

me with actual diginity and compassion. He openly said he wasn't a pain doc, and

would refer me if I couldn't manage on the amount of (hydrocodone) he

prescribed, but I did get the rest of my (non controlled) scripts filled, which

was a very frightening worry, and the promise of help.

I pray we all can continue to help one another, and share advice, support and

resources when called upon. All of this has reminded me that I am needing to

return to activism and advocacy.

Brightest of Blessings, Lotus

Re: the operation was success, but i am in

agony ..

lotus, thank you for joining our group. and good luck with your appointment

today. i know how stressful that is. it is extremely stressful for me and

i am very strong minded and independent. i wish you much success in getting

the help you need. marsha

[Guest guest]

lotus, that was good news. i am so glad that your needs were met by this

new doctor. it's a beginning. marsha

[Guest guest]

Thanks for the response. I'm very sorry to hear of your conditions and

pains. It's situations like your that make me take a step back and think that

I'm no where near the pain or problems you and many like you are in. I did see a

pain management Dr prior to my surgery, kind of a prerequisit to surgery, they

had me on tramadol period, they did not help with the migranes or pain, I

repeatedly asked for something that helped, his answer was that he is also a

board certified pharacist and narcotics are way too addicting. Prior to surgery

I was on an anti-inflammitory, anti-depressent, muscle relaxer, along with the

tramadol, that combination worked for about a month, with the anti-inflammatory

and muscle relaxer worked the best, unfortunately I didn't know how much they

were working until I had to stop taking them in preperation for surgery, talk

about reoccuring pain!!!! sorry to say our pain meds Dr. is a quack! I think the

rhumetologist and possibly nerologist or reg. M!

D might be the best way to start again. What if any are some of the side

effects you've experienced with any of the meds? I see commercials for many of

the new meds out there and they all warn about there own side effects, HOLY COW

I can't have my liver go...........LOL I own a bar!....LOL Thanks again for the

answer.

Jackie

On Thu, 5 Oct 2006 13:37:39 -0700 (PDT), Phyliss wrote

> When I saw a neurologist, he told me " I don't write prescriptions for vicodine

1-2 tabs, 4 times a day and I won't " . I didn't ask him for meds, I asked him for

help. He treated me like I was a druggie and referred me to a neurosurgeon

friend of his. I have declined his buddy and will choose my own neurosurgeon who

has no relation to him.

> For pain I take Lyrica 75mg 2x daily and vicodin 7.5, 1-2 4xdaily

> Phyllis

> 3 herniated cervical discs and radiculopathy, myelopathy

>

> biddolf <biddolf@...> wrote:

> Jackie,

>

> I am very sorry to hear what you are going through. There is more to pain

> management than you have been through and there is medication that works for

> nerve pain despite what you've been told. You need to seek some competent

> Pain Management doctors (get ones that are board certified) since the ones

> you had before obviously weren't. Pain itself is a severe problem and

> can/does result in disability.

>

> I just had my SSD hearing last week and am waiting a written decision over

> the next 30-60 days. The lawyer seemed to think I had a 50% chance of

> getting it but is already committed to appealing to the federal level. The

> problem I have in getting SSD is because I am young (40) and my case is

> based on pain and side effects of the medications. I have moderately severe

> thoracic DDD coupled with numerous herniated disc, the worse compressing my

> spinal cord 6mm. I also have severe arthritis in my lower back that has been

> getting worse over the past 2 years most likely from all the steroids I've

> had shot in my back.

>

> Here are some of the medications that work for nerve pain:

>

> * Neurontin

>

> * Lyrica

>

> * Cymbalta

>

> * Tri-cyclic anti-depressants

>

> * Fentanyl patches

>

> * Oxycontin/zanaflex taken together

>

> * Topamax

>

> Just about any medication used to control problems of the brain seem to help

> with nerve pain. Granted most nothing will completely eliminate your pain, I

> can attest the above do relieve pain. You said that the pain meds works

> better when taken with the relaxant; it's proven that it does indeed enhance

> the effectiveness of the pain medication. Don't think anything negative

> about taking the meds to recover some semblance of a quality of life. If you

> can get back just some quality and take things one day at a time, it makes

> it tolerable. Go to your primary care provider and ask to be referred to a

> Pain Management Clinic/Doctor. It's the best choice.

>

> I do wish you luck. Be persistent and NEVER GIVE UP. One thing I have

> learned is that you need to be your own doctor. Do as much research as you

> can about you injury, surgery, recovery times and pain management. There

> have been several things I have been able to tell my doctor about and he has

> been willing to prescribe the meds for a try. I will list the meds I take

> for reference and maybe they will help maybe not. My levels are still high

> but I am able to function a little. I can't work and was medically

> disqualified in Dec 04. I've been out of work since. I try to do some

> hobbies around the house with limited degrees of success.

>

> Medications:

>

> * 3600 mg Neurontin/day

>

> * 120 mg oxycontin/day

>

> * 60 mg Oxycodone/day

>

> * (2) 100 micrograms/hr Fentanyl patches

>

> * 30 mg Cymbalta/day

>

> * 150 mg Lyrica/day

>

> * 16 mg zanaflex/day

>

> As you can tell, it's quite the laundry list. I don't drive any more unless

> absolutely urgent and without taking the pain medication for breakthrough

> pain. I had to sell my 2003 Harley, 4 wheeler, and travel trailer. I had to

> get the bills down since I lost a good chunk of money. Long-term disability

> pays 70% of my base pay so this helps but has been a real pain to deal with.

> Every three months I have to fill out forms and then the doctor has to fill

> out forms so continue coverage.

>

> I hope technology advances to allow a less invasive surgery to fix my discs.

> Right now they would have to split me open and enter through the chest

> deflating a lung and moving my heart just to get the affected discs. There

> is good chance of paralysis and increased pain post surgery so the

> neurosurgeon will really only operate for emergent situation only such as

> going paralyzed or rapid degradation of neurological exam.

>

> Any way, I hope some of this information helps,

>

>

>

> Re: the operation was success, but i am

> in agony ..

>

> I was cut off the meds at my 6 wk appt. My nerosurgeon said he never

> perscribes beyond 2 weeks post surgery,I was the exception. I was on Oxy and

> valuim, great combination, the Oxy doesn't seem to work for me without the

> relaxiant unless I took two which I was perscribed if needed. I do have

> patches left from my reg. MD prior to the surgery, but am afraid to get back

> on them. I can relate to the stressers, of course we are

> addicts.......aren't we????

>

> In the bar business, I see addicts on a regular basis, they go to the walk

> in and complain of a hang nail and get demerol shots, I go without pain meds

> because I COULD get addicted.....really???? Why don't they let me make that

> choice. What I thought was funny was, when this all began, I told the Dr.'s

> I can't hunt, I can't ride ATV's, I can't show my dogs, all of my hobbies

> have been on hold for over a year now, but the day I said I'm having trouble

> getting through a work day( I'm a 26 yr veteran pet groomer) OH MY GAWD, we

> better do something now. Appearenly quality of life is not the important

> issue, heaven forbid we shouldn't work though. Well guess what, now I've

> been out of work since early July, and I don't have the stamina to go back,

> Dr. dropped the ball, I don't even know if I'm released to return to work,

> he doesn't need to see me anymore. I feel like I'm in a Dr. black hole, I

> don't know where to go. I don't have the selection in Dr.'s like those in

> the larger cities without making it an all day affair. I need to get my life

> back, and I guess my point is if pain meds are going to get me close to that

> goal, at this point what the hell?!

>

> Jackie

>

> Re: the operation was success, but i

> am in agony ..

>

> jackie, i guess you got what i was saying about the pain. i am not

>

> disabled. the pain patch and the meds have helped at this point buy i am

> consumed by

>

> it. my whole life has changed in the last year. no more rocking and

>

> bopping. i definitely have had to slow down. it is very hard sometimes to

> wait

>

> until 4:00 pm for dose #2 of the oxycontin because everything is pounding.

> i

>

> went the route of the arthritis doctor and then the nerve doctor. the

> nerve

>

> doctor spent one minute with me and then told me i was depressed and to

> get off

>

> all meds. i told him he was despicable. or words to that effect. i am

>

> trying to get up the energy again to start with making appts to see a new

> nerve

>

> specialist. i am currently taking a breather from running to doctors. i do

>

> see the pain doctor next week and i am going to ask him to up the dosage

> on

>

> the oxyir. it is very stressful asking for narcotics. i am terrified that

>

> they will treat me like a dope fiend behind that. as someone said this

> week,

>

> you cannot see a person's pain. marsha

>

>