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: That block sounds like something I would try if I were you. Those panc attacks are so hard on you.

Let us know, of course, when and if you do it.

Hadn't thought to ask for nausea meds when I try the patch. Hmmm. Something else to ask for.

Love and prayers -

gina

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Patty: He has just upped the nortriptyline to 30 mg. I always go for at least 2 weeks with side effects - feeling spacey and not all there, dizzy, etc. So I didn't start last night as I have to drive today, just a quick errand.

Then I have this CT scan coming up. Boy, it's like pulling hairs to get it all coordinated, first an authorization no., then labs within 30 days (I just missed it and will have to do labs again), then scheduling (they won't do it at Memorial West unless you have the BUN and creatinine numbers to give to them first, yadda, yadda, yadda. The AFP came back elevated, so I want to see what is going on.

Still praying for a good B liver for you. I think the Lord is making a very special one for you and He knows just the right time. I know that you must be anxious to get this going, I would be.

I cannot believe that you are still working - God Bless you child!!

Take care and I'm sending up lots of prayers for you -

gina

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, I am glad you are trying the duragesic patch. It worked for me although they had to increase from the initial dose of 25 whatevers up to 75. (they are not mg. or something I remember). The patch is nice because you just put it on and leave it for three days. What is your dose of Nortryptline? That stuff helps the pain from the neuropathy but not totally. I take 50mg at bedtime. Is that a normal dose?

Patty

-----Original Message-----From: gina413@... [mailto:gina413@...] Sent: Monday, August 25, 2003 11:21 PM Subject: Re: [ ] Pain

In a message dated 8/24/2003 11:59:59 PM Eastern Standard Time, karenw@... writes:

I can often smile even when my pain is very bad. I think this goes against me at times, but I refuse to make everyone around me miserable just because I am in pain. What they often do not understand is that I laugh and smile many times to keep from crying.

: Just today I was explaining to my rheumatologist that I know he knows how much pain I am in, but I don't believe some of my other doctors know because I do just what you do - laugh, make jokes, etc. That is how I get through it all.

Besides upping my nortriptyline, he ordered a duragesic patch. I'll have to see on the patch, though as I have horrendous side effects usually from this type of med.

Hope you are feeling better - and try to stay out of that ER. They will have to start putting you on the payroll soon.

Love and prayers -

gina

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,

You have my admiration if you go for the spinal block, I had a 'trial' one, where they were evaluating the possibility of the block working. I did not tolerate the procedure well. The Dr. told me I was a wimp. I told him he was a butcher. We didn't do well together. I never did have it.

Then again, I had a spinal tap a number of years ago that was hell and another a few months back and that was not so bad, the dr. who did it seemed to be the difference.

I hope it works for you. It must work for some people otherwise they wouldn't do it!

Patty

-----Original Message-----From: Weston [mailto:karenw@...] Sent: Tuesday, August 26, 2003 8:19 AM Subject: Re: [ ] Pain

,

Yeah, I probably could go on the payroll at the ER! I know the drill so well! It's bad when you know most of the docs and nurses in the ER!

A lot of people with chonic pancreatitis use the duragesic patch and swear by it. Some do have problems getting a rash at the location of the patch. They say it takes about 2-3 days for it to really build up in your system so you are getting the max benefit from it. You might want to take phenergan for the first few days to avoid the nausea until your body becomes accustomed to it.

I have an appt with my pain doc this morning. I am going to schedule the celiac plexus block if he will let me. That's a nerve block where they go into the spine and deaden the nerves around the pancreas. They have had wonderful results with it helping with the daily pain of chronic pancreatitis. It doesn't work for everyone and even if it does it is only temporary. It can last anywhere from a couple of weeks to a year or so. It lasts about 6 months for most. However, even having to have it done every 6 months sounds wonderful if I can get rid of or even cut down on the narcotic pain meds.

W

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Good for you that you told him he was a butcher! You go girl!

Debby

RE: [ ] Pain

,

You have my admiration if you go for the spinal block, I had a 'trial' one, where they were evaluating the possibility of the block working. I did not tolerate the procedure well. The Dr. told me I was a wimp. I told him he was a butcher. We didn't do well together. I never did have it.

Then again, I had a spinal tap a number of years ago that was hell and another a few months back and that was not so bad, the dr. who did it seemed to be the difference.

I hope it works for you. It must work for some people otherwise they wouldn't do it!

Patty

-----Original Message-----From: Weston [mailto:karenw@...] Sent: Tuesday, August 26, 2003 8:19 AM Subject: Re: [ ] Pain

,

Yeah, I probably could go on the payroll at the ER! I know the drill so well! It's bad when you know most of the docs and nurses in the ER!

A lot of people with chonic pancreatitis use the duragesic patch and swear by it. Some do have problems getting a rash at the location of the patch. They say it takes about 2-3 days for it to really build up in your system so you are getting the max benefit from it. You might want to take phenergan for the first few days to avoid the nausea until your body becomes accustomed to it.

I have an appt with my pain doc this morning. I am going to schedule the celiac plexus block if he will let me. That's a nerve block where they go into the spine and deaden the nerves around the pancreas. They have had wonderful results with it helping with the daily pain of chronic pancreatitis. It doesn't work for everyone and even if it does it is only temporary. It can last anywhere from a couple of weeks to a year or so. It lasts about 6 months for most. However, even having to have it done every 6 months sounds wonderful if I can get rid of or even cut down on the narcotic pain meds.

W

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Thanks .

Good luck with the tests. I agree, the liver will come when the time is right however I feel it is right now!

Patty

-----Original Message-----From: gina413@... [mailto:gina413@...] Sent: Tuesday, August 26, 2003 1:37 PM Subject: Re: [ ] Pain

Patty: He has just upped the nortriptyline to 30 mg. I always go for at least 2 weeks with side effects - feeling spacey and not all there, dizzy, etc. So I didn't start last night as I have to drive today, just a quick errand.

Then I have this CT scan coming up. Boy, it's like pulling hairs to get it all coordinated, first an authorization no., then labs within 30 days (I just missed it and will have to do labs again), then scheduling (they won't do it at Memorial West unless you have the BUN and creatinine numbers to give to them first, yadda, yadda, yadda. The AFP came back elevated, so I want to see what is going on.

Still praying for a good B liver for you. I think the Lord is making a very special one for you and He knows just the right time. I know that you must be anxious to get this going, I would be.

I cannot believe that you are still working - God Bless you child!!

Take care and I'm sending up lots of prayers for you -

gina

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: Good for you. I would definitely go for it. You may find some lasting relief.

Have a great weekend.

Love and prayers -

gina

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,

I am looking forward to giving the celiac plexus block a try. The pain doc said they work about 60-70% of the time. My surgeon said it would be okay for me to have the celiac plexus block any time I feel up to it. I don't have to wait until I'm completely healed from the hernia surgery. However, I do think I'll wait 3-4 weeks.

W

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> i need some sort of aresponse to know im not crazy. <

Rest assured...you are not crazy. But doctors and others sure try their best to

make us feel that way, don't they!

Remember...you are only 3 weeks post surgery of several levels! That is a lot

for your body to take. Are you sure you aren't over-doing it? Some docs aren't

as understanding as others when it comes to meeting our pain management levels.

Doctors tend to err on the side of safety when it comes to pain meds and dealing

with DEA.

When do you go back for a follow-up? I would make sure that you tell him how

much pain you are in and tell him that you are unable to rest and recuperate

safely because of your pain. All else fails, a trip to the ER will get you a few

meds, and maybe your doc will take you seriously.

While I was recovering from my fusion, I was in a lot of pain...but that was

because instead of resting and lying around, I was up doing as much as I was

able to do. Didn't give my surgery a chance to heal and so now recovery is

taking longer than expected.

Where are you a firefighter? Is this a workers comp case? Will you be able to go

back to work as a firefighter when you are fully recovered?

I ask these because I am a paramedic (in EMS for almost 20 years and 5 years as

a firefighter) and 2 docs have told me I won't be able to go back on the

streets. I had a one level fusion at L4/5.

Take care...and good luck!

Viv

Vivian H.

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No, you're not crazy. Vivian is right on target with her advice.

Your doctor is typically cautious when it comes to pain meds (doesn't

want you addicted). Your level of physical exertion affects your

pain tolerance. When it hurts, lie down if you can, rather than

reaching for a pill. Having been a formerly very fit person, I'm

surprised at how easily I'm tuckered out 6 months after my back

trauma. Exercise causes some pain, yet no exercise causes even more

pain & stiffness for those of us on the road to recovery.

When my ortho said I needed to quit Vicodin, I tried & went into

withdrawal tremors. (My kids " diagnosed " it from their school

lectures on drugs.) I called my GP & he prescribed more, which I

later told my ortho. I tapered off & 2 weeks later I stopped. Of

course, I now take over the counter stuff once a day. (I could

really use 2 or more, but I never did like taking pills.)

Good luck, sonia

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I Have follwed the docs orders to a tee. I have a follow appt on

friday and plan to discuss it more in depth with him then. It is

just a very intense pain at all times in the area of the incision,

but it is very deep rooted.It isnt a workmans comp case it is just a

stupid at home accident. I had 2 surgeons and one tells me i will

not be returning to work while the other tells me i can in some way

shape or form. They are creating an office job for me anyway so I

will be able to return while still maintaining my benefits. I am a

firefighter/EMT in Richmond , Ky I am just 33 so I am way to young to

call it quits. Thanks for the

advice.

>

> > i need some sort of aresponse to know im not crazy. <

>

> Rest assured...you are not crazy. But doctors and others sure try

their best to make us feel that way, don't they!

>

> Remember...you are only 3 weeks post surgery of several levels!

That is a lot for your body to take. Are you sure you aren't over-

doing it? Some docs aren't as understanding as others when it comes

to meeting our pain management levels. Doctors tend to err on the

side of safety when it comes to pain meds and dealing with DEA.

> When do you go back for a follow-up? I would make sure that you

tell him how much pain you are in and tell him that you are unable to

rest and recuperate safely because of your pain. All else fails, a

trip to the ER will get you a few meds, and maybe your doc will take

you seriously.

> While I was recovering from my fusion, I was in a lot of pain...but

that was because instead of resting and lying around, I was up doing

as much as I was able to do. Didn't give my surgery a chance to heal

and so now recovery is taking longer than expected.

>

> Where are you a firefighter? Is this a workers comp case? Will you

be able to go back to work as a firefighter when you are fully

recovered?

> I ask these because I am a paramedic (in EMS for almost 20 years

and 5 years as a firefighter) and 2 docs have told me I won't be able

to go back on the streets. I had a one level fusion at L4/5.

>

> Take care...and good luck!

>

> Viv

>

> Vivian H.

>

>

>

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It seems that is all I do is lay down I have tried the over the

counter stuff to avoid the narcotics but they dont touch the pain. I

would much rather not take anything but at this point that isnt an

option. Hell I think if I could get a good nights sleep that would

help more then anything. My wife tells me I am just a woosy and I

cant handle pain, but the fact is this pain is a pain I wouldnt wish

on my worst enemy. I am not worried about addiction I went all

weekend without a thing and the only ill effects I suffered was the

unbearable pain I was in no withdraws at all. I am in the best shape

of my life and havent really done anything but hag out at the

firehouse for a few hours and that is it, so I really dont

understand why it hurts so damn bad.

> No, you're not crazy. Vivian is right on target with her advice.

> Your doctor is typically cautious when it comes to pain meds

(doesn't

> want you addicted). Your level of physical exertion affects your

> pain tolerance. When it hurts, lie down if you can, rather than

> reaching for a pill. Having been a formerly very fit person, I'm

> surprised at how easily I'm tuckered out 6 months after my back

> trauma. Exercise causes some pain, yet no exercise causes even

more

> pain & stiffness for those of us on the road to recovery.

>

> When my ortho said I needed to quit Vicodin, I tried & went into

> withdrawal tremors. (My kids " diagnosed " it from their school

> lectures on drugs.) I called my GP & he prescribed more, which I

> later told my ortho. I tapered off & 2 weeks later I stopped. Of

> course, I now take over the counter stuff once a day. (I could

> really use 2 or more, but I never did like taking pills.)

> Good luck, sonia

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LURKER, HERE. A NEW BED HELPED ME SLEEP. FOAM MATTRESS. REAL

RELIEF. PLUS PHYS THERAPY MAKES A DIFFERENCE.

DOC50

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Thanks. The only way I can really sleep for awhile is sitting

straight up in my recliner. Its not much but its pain free for

awhile anyway.

> LURKER, HERE. A NEW BED HELPED ME SLEEP. FOAM MATTRESS. REAL

> RELIEF. PLUS PHYS THERAPY MAKES A DIFFERENCE.

> DOC50

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It took me a whole year before I could stop taking regular doses of

pain meds after my L5/S1- posterior w/graft & hardware fusion.-

The first month was the hardest.

BTW it took about 18 months befoe I got back all my function and

strenght. It's a BIG opertion and takes a long time to heal.

If the doc won't RX proper meds go to a pain management specialist.

You can't heal if you are in so much pain you are not sleeping.

You've had 3 levels done so hang in there.

Lydia

ACDF-C 5/6 w/graft & hardware-3/2000

Posterior fusion L5/S1 w/graft & hardware- 11/2000

Both successes. Only SI Joint problems & muscle pain now. Oh well.

-------------

-- In spinaldisorderssupport , " stegemollerlaw "

<stegemollerlaw@a...> wrote:

> It seems that is all I do is lay down I have tried the over the

> counter stuff to avoid the narcotics but they dont touch the pain.

I

> would much rather not take anything but at this point that isnt an

> option. Hell I think if I could get a good nights sleep that would

> help more then anything. My wife tells me I am just a woosy and I

> cant handle pain, but the fact is this pain is a pain I wouldnt

wish

> on my worst enemy. I am not worried about addiction I went all

> weekend without a thing and the only ill effects I suffered was the

> unbearable pain I was in no withdraws at all. I am in the best

shape

> of my life and havent really done anything but hag out at the

> firehouse for a few hours and that is it, so I really dont

> understand why it hurts so damn bad.

> > No, you're not crazy. Vivian is right on target with her

advice.

> > Your doctor is typically cautious when it comes to pain meds

> (doesn't

> > want you addicted). Your level of physical exertion affects your

> > pain tolerance. When it hurts, lie down if you can, rather than

> > reaching for a pill. Having been a formerly very fit person, I'm

> > surprised at how easily I'm tuckered out 6 months after my back

> > trauma. Exercise causes some pain, yet no exercise causes even

> more

> > pain & stiffness for those of us on the road to recovery.

> >

> > When my ortho said I needed to quit Vicodin, I tried & went into

> > withdrawal tremors. (My kids " diagnosed " it from their school

> > lectures on drugs.) I called my GP & he prescribed more, which I

> > later told my ortho. I tapered off & 2 weeks later I stopped. Of

> > course, I now take over the counter stuff once a day. (I could

> > really use 2 or more, but I never did like taking pills.)

> > Good luck, sonia

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Thanks for the advice all you guys are lifesavers.

> > > No, you're not crazy. Vivian is right on target with her

> advice.

> > > Your doctor is typically cautious when it comes to pain meds

> > (doesn't

> > > want you addicted). Your level of physical exertion affects

your

> > > pain tolerance. When it hurts, lie down if you can, rather

than

> > > reaching for a pill. Having been a formerly very fit person,

I'm

> > > surprised at how easily I'm tuckered out 6 months after my back

> > > trauma. Exercise causes some pain, yet no exercise causes even

> > more

> > > pain & stiffness for those of us on the road to recovery.

> > >

> > > When my ortho said I needed to quit Vicodin, I tried & went

into

> > > withdrawal tremors. (My kids " diagnosed " it from their school

> > > lectures on drugs.) I called my GP & he prescribed more, which

I

> > > later told my ortho. I tapered off & 2 weeks later I stopped.

Of

> > > course, I now take over the counter stuff once a day. (I could

> > > really use 2 or more, but I never did like taking pills.)

> > > Good luck, sonia

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I might come to believe that this is the only sort of place I will be able to get people willing to talk details (and truth) about this whole joint replacement stuff. I've just seen an OS. I now have an appointment for THR on Feb. 10th !! Maybe that's exactly the right thing to do. But I have such distrust that I've got enough information or that I was really seen as a woman who is getting ready to make the choice to have part of her thigh bone cut off. That's a daggone HUGE choice to make. He dismissed "resurfacing" as a failure. Uses the longest incision offered -- thereby, I assume, cutting the muscle & tendons & ligaments), uses a ceramic-on-ceramic implant (Howmedic) and didn't tell me why. In fact, he didn't really tell me the why or what of much. Why can't a doctor, even if he believes his approach to be the best, talk about and explain and listen and dialogue about this whole damned experience? So, folks, help me think this through, will you? What about resurfacing? I looked at my Xrays and saw no sign of cartiladge on that left hip socket, but the femur ball was beautifully round and solid. There is an MRI report which says there is an area consistant with Avascular Necrosis. But anyway, I saw no deformity or collapse or any such thing which might make resurfacing impossible. Why not discuss with me, Doc, why you don't like that approach? It would make my trust in YOUR approach possible! And then I have found sites, just tonight, which show places (s Hopkins) where the OS are working on, trying, out, investigating CARTILADGE REPLACEMENT ! So, if it's not perfected right now (and I don't know that it's not), what if it's perfected in a year? Could some doctor explain that option to me?? I want to make an informed decision. I NEED to make an informed decision. I will have no peace until I feel like I have enough information and a professional who sees me as at least a partner in making this choice. The surgeon I saw said he didn't do resurfacing, mumbled that they "don't last," and said I could choose that if I wanted -- no, he couldn't tell me who might do it -- because he doesn't do it. I mean... Anway, folks. Talk to me. Please. Give me feedback. I'm not really lambasting on hard-working surgeon, I'm talking about much more than that. Maybe the arrogance of an entire, vital system that I shudder whenever I have to use. For just this reason. Tell me about your surgeries, your implants, why you made your choices, what sorts of things you thought about. Many, many thanks, Joyce in Kentucky

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For your information this is one persons experience to date. I am a male, 73 yrs old with arithitus. My right knee is bone on bone and my right hip shows missing cartilage. I had a shot into the hip to see if I could walk better before going under the knife. The shot helped me temporarily and the nurse setting me up for the shot told me the ball was eroded. You might talk to your doctor about the shot and see what reuslts you get. I am a candidate for hip replace, and was scheduled for late january surgery, but after checking on internet and etc began to have question. My os answered most and volunteered to send me to another doctor that does the minimum technique. He said it would take him a long time to learn the procedure and he can get me out of surgery in two hours max versus up to 4 with the other procedure. ( Time in surgery is important to me becausae of past surgeries). I decided to wait a while and lose some weight, start the rehab exercises in a water pool to develop more muscle, while thinking about the operation. I can get around with a cane and am not ready for wheel chair yet. So far I have lost +/- 40 llbs on a low carb diet and have 40 more to go to be where I feel better for the surgery. Havent started the exercises (rehab) yet because was waiting to get better mobility. This is just one persons experience. I encourage you talk to another doctor and find people who have had it done. You need to have confidence when you go into the operating room so my suggestion is do what ever you need to develop that confidence in your doctor and procedure.

Ben f.

RE: Pain

I might come to believe that this is the only sort of place I will be able to get people willing to talk details (and truth) about this whole joint replacement stuff. I've just seen an OS. I now have an appointment for THR on Feb. 10th !! Maybe that's exactly the right thing to do. But I have such distrust that I've got enough information or that I was really seen as a woman who is getting ready to make the choice to have part of her thigh bone cut off. That's a daggone HUGE choice to make. He dismissed "resurfacing" as a failure. Uses the longest incision offered -- thereby, I assume, cutting the muscle & tendons & ligaments), uses a ceramic-on-ceramic implant (Howmedic) and didn't tell me why. In fact, he didn't really tell me the why or what of much. Why can't a doctor, even if he believes his approach to be the best, talk about and explain and listen and dialogue about this whole damned experience? ! ; So, folks, help me think this through, will you? What about resurfacing? I looked at my Xrays and saw no sign of cartiladge on that left hip socket, but the femur ball was beautifully round and solid. There is an MRI report which says there is an area consistant with Avascular Necrosis. But anyway, I saw no deformity or collapse or any such thing which might make resurfacing impossible. Why not discuss with me, Doc, why you don't like that approach? It would make my trust in YOUR approach possible! And then I have found sites, just tonight, which show places (s Hopkins) where the OS are working on, trying, out, investigating CARTILADGE REPLACEMENT ! So, if it's not perfected right now (and I don't know that it's not), what if it's perfected in a year? Could some doctor explain that option to me?? I want to make an informed decision. I NEED to make an informed decision. I will have no pe! ace until I feel like I have enough information and a professional who sees me as at least a partner in making this choice. The surgeon I saw said he didn't do resurfacing, mumbled that they "don't last," and said I could choose that if I wanted -- no, he couldn't tell me who might do it -- because he doesn't do it. I mean... Anway, folks. Talk to me. Please. Give me feedback. I'm not really lambasting on hard-working surgeon, I'm talking about much more than that. Maybe the arrogance of an entire, vital system that I shudder whenever I have to use. For just this reason. Tell me about your surgeries, your implants, why you made your choices, what sorts of things you thought about. Many, many thanks, Joyce in Kentucky

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My husband saw his doctor today and got the staples out in his hip. He was told that he was probably experiencing more pain than most people because he has more muscle there than most people. SO WHAT DID THE DOC SUGGEST HE DO ABOUT IT?

MARGE

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> > My husband saw his doctor today and got the staples out in his hip. He

was told that he was probably experiencing more pain than most people

because he > > > has more muscle there than most people.

> SO WHAT DID THE DOC SUGGEST HE DO ABOUT IT?

Not much, but my husband has also been having trouble sleeping since the

surgery and the doctor gave him some sleeping pills. The got his first good

night's sleep in two weeks.

Charlotte in Iowa

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i am 5 weeks post-op and i have such back pai. i don't know if it's new muscles that i am using or just my walk off alittle.the doctor says to take medication but i am worrried that i have a new problem

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It depends where she didn't have pain. I didn't have any in the hip joint,

but I did at the incision site and my back killed me because I wasn't used

to sleeping on it. I can't believe that anyone can have a THR and not have

some pain! Helen

Pain

> Can any of you report that you didn't have pain after surgery? Or is this

> what I have to look forward to? My aunt told me that she doesn't have any

> pain.

> In His Love,

> Vera

>

>

>

>

>

>

>

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I'm sure this varies a lot from patient to patient. I'm happy to

report that my pain while in the hospital was not that bad and was

well controlled by PCA eaarly and oral meds later. Of course it

hurts bad when they would turn me or get me out of bed but that was

fleeting. I went home in 4 days and took ES tylenol, no narcotics at

all. Again, the only real pain I had was during the first week or

two when I would get into and out of bed but it was fleeting. The

rest of the time I really didn't have pain.

That's my experience. Hope yours is as painless as mine was!

> Can any of you report that you didn't have pain after surgery? Or

is this

> what I have to look forward to? My aunt told me that she doesn't

have any

> pain.

> In His Love,

> Vera

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Hi

I am not sure if you are affiliated with the local chapters here,

maybe they can direct you in the way of a good pain specialist.

http://www.lpaonline.org/lpa_districts.html#Dist12

Good luck and hope this helps.

Bonnie

> I am a 25 year old woman with a saver case of Pseudo achondroplasia

> and I have been through 15 surgeries on my legs. Because of this I

> have suffered from saver pain in my knees since child hood and it

is

> getting worse. My general practitioner just tells me to take

> Ibuprofen, but that just doesn't help.

>

> Does anybody know of doctors in the Los Angeles or Orange county

aria

> that specialize in pain problems of little people?

>

> Thanks!

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I am a 43 year old achondroplasia woman who suffers from chronic leg

and feet pain 24/7, due to enduring past laminectomy surgeries. As

far as pain control is concerned, something that I have found that

works for me is to take an anti-depressent like 50mg Zoloft once a

day, preferably at night, in combination with 500/7.5 mg Lortab 5

times a day or once every 4 hours (PRN). One of the side-effects

though, is that you'll want to nap quite a bit. But I have decided

that I would rather sleep off my pain, verses not being able to

function adequately during the daytime.

I know that different things work for different people, so I would

suggest finding a qualified pain management doctor, who can help to

work out a program of pain management, just for you.

Good luck..I can relate. Being in constant pain is no fun. It

makes life one frustrating hell. My personal opinion is that LPA

needs to provide more constant support in this area. And maybe they

are, since I wasn't able to attend the SF convention this year?

Ann

> I am a 25 year old woman with a saver case of Pseudo

achondroplasia

> and I have been through 15 surgeries on my legs. Because of this I

> have suffered from saver pain in my knees since child hood and it

is

> getting worse. My general practitioner just tells me to take

> Ibuprofen, but that just doesn't help.

>

> Does anybody know of doctors in the Los Angeles or Orange county

aria

> that specialize in pain problems of little people?

>

> Thanks!

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