I had a triple laminectomy/decompression in November '07 which has basically failed because of two re-ruptured discs and scar tissue quickly growing and causing stenosis again. So, yes, my Ortho and I are managing my "chronic, inoperable, intractable pain" in much the same way you are--with medications. The last surgery caused me so much that I am not willing to go through another surgery until science has progressed much further in handling DDD, spondylosis, SI joint disfunction/piriformis disorder, and generalized osteoarthritis of every major joint in my body--including my CMC (thumb) joints. I am a 42 year old mom of a college senior with a husband who has come to understand (begrudingly) that I cannot physically do what I did even a year ago. I just get so tired--after a day at work I just want to go home and crawl in the recliner with some ice--after taking my pain meds--and find "me" again. This is not something I need so badly on Mondays but by Thursdays I'm just trying to "make it" one more day.

O.k. I've whined enough--but I do agree. We are "sentenced" to this life until science progresses much further to where we can be assured of a better than 70/30% success rate (just used that number as an example--it varies, I know).

Sorry so long. You hit a topic that's one of my "favorites."

Hi Mitzi, Im sorry to hear of your situation, but im glad you are here because we are in the same boat. I have told by 3 surgeons that surgery is not an option for me as there is too much damage on too many levels. When the first surgeaon told me, he was very honest and upfront, told me I would need pain managemnet for my pain for the rest of my life I cried , rather sobbed like a baby. Im glad my husband went with me because I didnt hear a word the Dr said after that. The nurse ran in and just held me. I have a new team of PM drs. One for meds and one for more interventional stuff. I have an injection sheduled for next Wed. He said if that doesnt do it, we will try every other option...probably a spinal stimulator. I have been out of work for 4 months now. losing health insurance Sept 1st. I have 2 beautiful kids, Francis 3 and Lily 2. We are barley making it and COBRA payments are over $1200.00 month. I have applied for SSD and waiting to hear from them. Im so scared and I feel like such a failure, as a Mother, wife and professional woman. Ive been very depressed these last couple of days. I cant do anything, my house is a mess. My husband must have came in on the same bus from Heaven as your husband. I love him dearly and he is very supportive. I have not yet accepted my fate, I know eventually I will have too. Just 5 years ago I was running 5k races and now Its a good day when I can get out of bed. Please know I am here for you if you need to talk and you will be in my prayers as everyone here at SH always is.

Hi and welcome to Spine-Health. Below is a link to some pointers our moderator Ron put together to help new members with the forum.

Having a supportive spouse makes everything OK. My wife has been wonderful through this whole ordeal and I could not have handled it w/out her and my son

If you have any questions, feel free to contact (PM) any one of the Moderators here Priestess , Bruce , Paulgla , DiLauro

Again welcome.......Paul

For an introduction, Click on :

Welcome To Spine-Health

Your words sounded like they came straight from my docs mouth - "I have taken meds, every day for the past 7 years and have been told that unless some sort of advancement in the medical field happens, will be taking these meds for the rest of my life."
That is exactly what my doc has told me. And here I am on opiates waiting for one of those advancements to come along. Good luck to you and please keep us posted on your progress.

Hi Mitzy,
To make a long story short I've had back problems most of my life. after several failed surgeries. I choose not to have anymore until technology has a major breakthrough.
I call this the roller coaster of chronic pain. Things can go fairly good for a time then all the sudden I race from the top of the ride to the bottom and then hang on for dear life! And not even know what the heck I did. Well most of the time, I'm pretty hard headed.
I have a ticket to ride, but not one to get off!
Good luck Jim

Sorry, I haven't had an opportunity to get on-line for a couple of days. My ISP had some thech problems and I was just able to get back on-line today.

I know, for me, it's been mostly an issue of acceptance over the last 8 years. I was 38 when the chronic issues began, and I kept thinking to myself that I couldn't believe that this life was "it" for me. I was seeing a diffeent PM in the beginning, and he was such a jerk. The man had no business being in the PM field. Let alone the medical field. He looked at me one day and said "Well, you are almost forty you know." I couldn't believe he said that!

I know from participating in other forums that "acceptance" can be a dirty word to some people. I guess I don't look at iit as giving up. I just see it as a way to cope and move forward. I've watched a lot of people who refuse to accept a diagnosis of chronic pain, sabotage their own pain management. It's hard to see people that you've come to care about, go through hell just because they don't want to "give in".

Like most people, if I had a choice, I'd be med free and pain free, but that's just not going to happen. Why put myself, and especially my family, through all of the torture of not being properly medicated or managed?

Sorry for the ramble. I guess I had a bit bottled up! LOL
Thanks Paul. I'll take a look at that link. I so appreciate the warm welcome.

Take care everyone. Hope to be participating more often. Blessings and Peace, Mitzi

Hey Mitzi!
Just now starting to admit I'll probably need pain meds for quite a while. I'm 9 months post op from a L4-S1 fusion. All the sciatic pain I had before surgery has returned these last four or five months. The second best thing I've found (next to prayer) is Fentanyl. I've been on 25mcg/hr patch the last month. It, along with 400mg/day of Lyrica keep me sane.
So if your doc suggests Fentanyl, you say "yes", and "thank you."
I've filed for SSD, but hope to return to work by the end of Sept.

Take care
CD

Well I guess I'm one of those that you categorize as feeling that acceptance is a dirty word.

Acceptance is fine as long as it's not a mask for giving in or giving up!!!

I have seen too many good people throw their lives away because someone told them they needed to accept the fact that they would always suffer horrible chronic pain. That there was nothing more that could be done for them, so they may as well get used to the idea that they will need drugs the rest of their lives.

So what did they do ... they gave up. They gave up hope of ever enjoying life. They gave up on themselves. They gave in to the ideas and thoughts of a few, just because they were good doc's or other's who suffer the same or similar things. So they set about becoming someone who will never have a real life. If someone approaches them and says "it doesn't have to be this way". Well guess what, instead of thinking "hmm... maybe their is something I can do". They set about doing their darndest to prove to that person how "really dorked they are and how no kidding they are dorked forever."

If I had given in to that when I first started into a life of chronic pain, I'd be a mess. I won't say in what regards, because I know that would really ruffle some feathers more than this probably already is.

Do I have chronic pain? Oh that's an understatement. Do I take meds every day? Yes I do. Do I hope that some day they'll be able to fix me? Who wouldn't!

BUT

I go on every day doing what I can to dig myself out of that! I refuse to give in! Attitude goes a long way towards fighting pain.

If I meet someone, whether it be a stranger or a friend, I go about the time together as if I have no issues. I don't bring it up, and I do what I can to hide it. There's a lot of people who have no clue what I feel like or go through every single day. All because I choose to focus my energy on living life and helping others to live life.

Some say "oh you shouldn't hide your pain". Why? So you can suddenly act differently towards me and keep me from challenging myself to make it through the day as a normal person?

There are so many weapons that we have in fighting pain. We are our own biggest weapon and the last thing we need to do is put that on the shelf.

-Eat right
-Exercise (even if it's just walking or isometrics)
-Hydrate
-Get away from the dregs of chronic pain mentality
-Choose to live

Stay away from the Hee Haw "gloom ... dispair ... & agony on me ... deep dark depression ... excesive misery ..."

I'm really sorry if I make anyone angry with this, not my intent. I just want to make sure that no one forgets that there's always a different perspective, and it's not necessarily wrong just because it conflicts with another.

Mitzi, welcome to Spine Health.

"C"

"C" thanks for your post. I can't tell you how many times words like yours can be used on this site and many other sites. Most of the members that come here are either new to chronic pain or have been dealing with chronic pain for a while. Surgery or multiple surgeries is also probably he profile for many here. Dealing with chronic pain is far from any picnic, but we do have to try to control what it does to us. Its probably very easy to throw in the towel and just let them sedate us so we do not suffer all that much.
What kind of life would that really big. I am a firm believer in fighting, fighting for whatever you want and dont give up..
And when things look like they are not progressing, then fight some more.
I do not have an answer or set of activities that could work magic for anyone. "C" pointed out some valid and time true methods. My post here is more of an attitude. It is really amazing to see what any person can accomplish once they put their mind to it and never say NO.

Hello Mitzi,I've been in chronic pain for many years,but this DDD is new to me.As of Nov.06.
As far as acceptance-I've learned long ago to listen to what my body tells me.I do what I can,but when my body says enough,I listen,because I'm well aware of the consequences.

I am being treated with lortab,lidicain patches,and numererous other medications for pain relief.Probably for years,I don't know,maybe forever?

Learning to accept what we can do and what is simply not smart to do anymore is a sign of wisdom,it does not mean giving up or giving in-just as you said Mitzi-it is moving forward.Life is full of changes,maybe some better change will come along in our future.

I have been told i am not a canidate for surgury,so nothing can be done for me,i had rhizotomy,and it helped my nerve pain but not my muscle pain,i have accepted that fact that i cant have surgury,i will have to stay on meds the rest of my live,i had to sign a contract with my doctor for the pain meds,if people dont understand me fine,sometimes just because we accept the fact the nothing can be done dosnt mean we are giving up,i try to live day by day,i wish i could have something done for ,my back,but nothing is pressing on a nerve,so they wont do anything,i have had back pain since 1993.

Yes Mitzi, I'm on the same ship as you are! I am 44 years old and this started when I was 36. Actually I don't know if there is help for me in the future but I do know that like someone else mentioned, my last surgery was so bad that I don't want to go through another one. I am completely open to other methods of pain control though. I just have to find the right doctor who is knowledgable in this area.

I wish that I could stay positive like "Haglandc" is, but I can't. I have nothing left to be positive for. Every year something has gotten worse or taken away from me. I have been left with no quality of life at this point. I haven't been able to work in about 6 years and had to go on disiblity. Then I had to give up my dream to ever have a baby, I never thought that I would be childless. My husband works away from home for months at a time and in the past I used to go with him, because I can no longer find a doctor to prescribe my med's while I'm there I've had to stay home for the last 4 years, alone. I have always loved to cook and bake and I started my own business of baking wedding cakes at home, for something to do and for some much needed extra cash. I have invested over $600.00 into equipment for this. Just as I was ready to take on customers, my current Pm reduced my med's and left me unable to bake or decorate. So now that is gone too!

Every single so called friend that I had deserted me while I was still in the hospital for my first surgery. I guess they figured that I wouldn't be much fun anymore. They didn't even give me a chance. This is just a few highlights from the last 7 years. There is so much more to tell!

I have gone on anti-depressants and they have indeed helped me quite a bit, although it may not sound like it. But they have. And I have to say, my husband must be an Angel in disguise. If I had to choose between having my old life back but a different husband or having this life and "my" husband, hands down I wouldn't change a thing! Talk about Heaven sent! He is what has kept me going when I have felt like I couldn't go on another day, another minute. As a matter of fact we just celebrated our 21st wedding anniversary. He surprised me by traveling 800 miles this weekend to see me and take me out.

I'm currently in the process of looking into laser surgery. Not jus any laser procedure though. There are 2 institutes that I have found that are located in Florida that do minimaly invasive surgery with just sedation, no general anesthesia. It's an outpatient process but you have to stay in town for a week. I would highly recommend that everyone look up ***EDITED***) and check them out. It's going to be costly but we're already planning on that. It's not going to happen right away, but I do hold out some hope for the future. The other institute that I found takes some insurance.

OK, talk about long winded, I do apologize. But please, if you haven't checked out EDITED, please do. I'm not giving up!

Good luck to everyone,
Jewels

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I am sure that when you have to deal with chronic pain over a period of years it takes it tolls and drains you and saps your courage and positive approach. Then you are told that surgery is not going to fix your problem, that complicates things also.
I know, I started when I was 17, I've had 7 spinal surgeries, I have 4 more herniated T-discs, another Lumbar disc that is causing problems and surgery or no surgery it really doesnt make that much difference at this point. I am on constant medication to be able to manage my pain and establish a quality of life.
I had to work for that, I never gave up, no matter how bad things looked. I could go on and on about the things I couldn't do, the things I had to pass by, but that was what was in store for me. I made sure I made the most of that. And everyone has that ability to do the same thing. Its one thing when there are actions that are out of our control and impact our lives, but a positive attitude is one that is in our direct control.
You can look at a glass is it half empty or half full?
How we answer that can make a difference in how we approach day to day life.
I am not saying that a positive attitude is going to make the pain go away, but I can guarantee you that keeping that attitude will sure make those painful days somewhat easier.

The reason I have a problem with saying that a person in chronic pain just has to accept it and move on, is because many don't understand that even that requires action on their part. I have watched and listened to too many people suffering chronic illness or pain turn acceptance into giving up on ever having a life that means anything, ever having a life that can produce anything and ever having a life period. That's when they give in and turn to the medical profession once again, to treat their depression and anxiety that has now enveloped their world.

When told that there's nothing more that modern medicine can do for them, they tend to forget that there's one more very important piece of the puzzle, themselves.

Many people do learn to cope with their pain and illness over time, many don't. If you take the one puzzle piece frequently lost in all this and put it to work, then it is possible that acceptance can be turned into the ability to thrive despite the pain or illness. It's just that so many forget about that piece's ability to complete the puzzle.

Like Ron said, a positive attitude won't make the pain go away, but it will make getting through the day a lot easier.

Some people wonder if I really understand or suffer from chronic pain since I am always trying to be so positive and upbeat. I am always trying to find the silver lining an any situation.

I've had 7 lower back surgeries, 2 posterior c-spine surgeries at C1 and C2, angiogram of my vertebral artery into my head, 1 SCS implant, multiple RFAs, open wound healing ....and more. My neck has atrophied and is causing my shoulders to atrophy and there's no end in sight.

I don't have the option of opioid medications to treat my chronic pain. So I have to make due with the basics and thankfully have an SCS.

What the future holds for me, I have no idea. What I do know is that I will meet each day as if it's a new challenge. I am the key ingredient in my life with chronic pain.

"C"

or mad at you C. Actually your first post made me laugh. I have not heard that song from Hee Haw in quite some time! I do feel pretty much the same as C. I am on daily pain meds but do not talk about my pain as sometimes if you dwell on it makes it worse. Plus you don't want to bring everyone else down since there is nothing that they can do about it. I am a firm believer that the day will come when the right advancement in the area comes along and voila, I am off pain meds and pain free. Until then I live my life to the fullest while doing my best to manage my pain.

When I think of the word acceptance, I guess I see it as knowing where you stand, and then making your decisions. I see it as a sort of platform or stepping off point.

I agree that there are probably many people who just stand on that platform for the rest of their lives, and "accept" that this is all there is. But for me, acceptance was a moment when I decided that I was going to make the best of this new life and move "forward".

"C", I am in no way offended by your views. They really aren't any different than mine. I think we just have a different definition of the word "acceptance". I think you have a great attitude toward your chronic pain, and I actually try my best to look at it in very much the same way.

So, I guess we are on the same page. Just different interpretations of one word. And what kind of world would this be, if we were all like robots and shared the exact same thoughts about everything.

I wish you all blessings and peace, Mitzi

Mitzi! Acceptance of our limitations in no way shape or form means giving up. I do not know how anyone would interpret it that way. It sounds like the definition of acceptance has mistakenly be interpreted as surrender?

What I worry about when people use the word acceptance, are the people who are hearing for the first time

... accept that you will forever suffer chronic pain

It's like telling someone

... accept it you're broke
... accept it you're paralized
... accept it you have AIDS
... accept it you're fired
... accept it you have no where to turn

If a person is in pain and they hear the term accept or acceptance, I guarantee they don't meet it with "okay well that means I have a challenge". Instead their first reaction is more like "oh man I'm screwed"

If they aren't strong enough or don't have a strong enough support system, they may very well be screwed.

So I just get very concerned especially when someone is new and seeking out information and support for the first time and all they read and hear is "accept it" or you must have "acceptance".

I don't want to be responsible for contributing to someone's problem. I don't want to be the second or the twenty-second person to tell them "yes you must accept it to move on". Next thing we know that person has dug themselves deeper into a pit, disappears from the board and never reaches out again.

That's my concern over the way "acceptance" or "accept" is used when it comes to chronic pain or chronic illness.

"C"

It has been a few days since I last logged in and just came across your post...
I have had chronic pain for 13 years. I am a 32 mother of 4. I have been through hell and back and understand the frusration and limitations this "chronic pain" puts on us who suffer everyday.

Just last night I had an "episode" where I actually double over and seize up with severe spasms. I get headaches...and I mean the pain gets so sever I feel like I am at deaths door. I am 1 week out from having an RF procedure and man oh man...I am having a battle with spasms and increased pain. I never thought it could get worse...but it has.

I have been put on a fentnol patch. (not sure on the spelling...I am laid up on the couch and cant read the label from here. lol) Just started it today.

I will keep you guys posted on how this works. It is a high powered time release patch you wear for 72 hrs. Its not suppose to space you out like other meds...hydrocodone...soma...darvocet...diazepam...etc. This patch is new for me and I will keep you posted on how it is working for me. I wish you luck and goodluck with your PM!!!

GOD BLESS!!

C, that makes sense. I didn't think of it that way.

to me has been that for aboput 5 years I was in excruciating pain and started thinking that all of the docs were morons because I was in so much pain there must be a quick fix. I refused to take meds because I wanted a fix. About 5 years into the ordeal, I accepted that there was no quick fix and got on a regimen of medications in order to have some of my life back. So acceptance was a good thing for me because I was in denial of being a chronic pain patient. If people go too long in denial sometimes they suffer needlessly for alot longer then they have to. I have accepted that I am a chronic pain patient not that I will be one forever.

I don't understand this problem here with the term 'acceptance',especailly in this case because here we have the original poster herself recognizing and realizing that-if I may use Mitzis' words;

"my life has been forever changed and I believe I am at a decent level of acceptance"

That doesn't sound negative to me,that sounds like someone who knows herself and is comfortable enough with herslf to share her feelings with all of us who were all strangers at the time.
Mitzi mentioned in her post that she is;
Very happily married,detail oriented,understanding,supportive,with hopefully some wisdom to share.

Maybe others mentioned some form or level of acceptance because we felt so comfortable with Mitzis' original post that we (at least I ) felt I could.And because she explained it so eloquently.

I am 15 months post op from a PLIF L4-S1 fusion with both my own and synthetic bone/mush and have been having a terrible time getting back to full time work and for that matter, able to do a lot of the ordinary everday things around the home. I was wonder about how you got your NS to prescribe something new? I have been taking Norco and Flexeril for longer than I care to remeber. He's PA tells me there isn't really anything different they can give me. Even when I try to explain what they are giving me doesn't touch the pain anymore. My NS wants to remove my hardware and I see him this Tueday to make the decision. I am terrified to go through surgery again I am also looking into SSI as my employer LT insurance quit on me.

you said you see a ns. do you have a pain dr? narco is a 10mg vicodin whereas a lot of us are on stronger narcotics such as oxycontin or fenatyl. have you talked to him about this? unfortunately a lot of drs have prejudice against oxy and fentanyl. seek out a pain dr and have as many test as possible. i had hardware removal after my first fusion and the time is usually waiting 2 years after a fusion to remove it. it is a crap shoot. it might or might not help. it is not that bad. a lot of pain, had morphine pump, and was in hospital for 2-3 days. last fusion in L3 i was in 4 days. it might be worth it to have the surgery. there are not guarantees with this. but i would get a pain dr to work with ns and have him dispense your meds instead of ns. pain drs tend and i mean tend to be less prejudice about stronger narcotics. don't belabor the point about narcotics, and be professional with him an take all test results if you have them. if not get them.
hope things work out

jon

I have been no stranger to pain half my life, in different forms; my first chronic one began with arthritis everywhere as a teenager. I am a veteran of 12 surgeries for painful conditions- the last were for the back.
After my microdiscectomy and I didn't recover like everyone expected, I had adjusted to having pain all the time. Right away when I was sent to PM, a neurostimulator trial was offered right off the bat. Was I not expected to better ever? They knew more than me at the time. Usually they won't offer a trial until they have tried a lot of things, manipulated doses of meds, and had injections of different sorts.
4 months later I was asked if I would consider seeing a surgeon again. I was surprised because I was told by my last one that there was nothing more surgical to be done. I decided to go; I wanted a different opinion; and my PM doctor wanted to see if anything else could be done for me. I had a complication with the stim trial previously and wasn't willing to try it again bacause I was traumatized by it.
I had the TLIF after finding out my back had worsened. I was told beforehand that if it didn't help, that another stim trial would be done. Is it just me, or do they think my chances aren't so great? I will do anything what is reasonable but will factor in risk and financial aspects.
I also know that I shouldn't depend only on meds and assume I'll always have them. I will do what's expected of me; be it more injections later on, go to PT, listened to doctors' recomendations. In other words, to be a good and compliant patient when I know the doctors are sincere in their quest to treat me.

There is nothing intrinsically negative in the word "acceptance". We "accept" the nomination for president from our political party, we accept invitations, marriage proposals, good wishes, packages, etc, etc. I seem to vacilate between hoping I can find something that will make my pain go away and self-pity. I wouldn't say that self-pity has become a way of life for me but I'd be lying if I told you that I didn't experience it on those really bad pain days. I, too, have a wonderfully supportive husband, a great job and some great, fun days. I even went downhill skiing for the first time last winter, a year following my laminectomy and fusion L5S1. But its not the same and I feel sadness, GRIEF for the life I no longer have. I'm glad to have this forum but in a way I feel like I'm obssessed with my pain situation. I, too, was recently prescribed Fentanyl and when I read somewhere that it was 1000 times stronger than Morphine, my insides quivered. I guess I haven't really accepted my chronic pain.

Im in the same boat bro i feel for ya. My only surgical option is to fuse together every vertebrae and im only 22

Mitzi,
The notion that chronic pain can always be remedied is a myth and a small percentage will live this life and with experience, better than the alternative.

Acceptance is a positive, in doing something about it, you can delude yourself that the pain can be eradicated and evidence here suggest that additional complex surgery at time takes you away from the objective you started with in the first place.

My professor told me this will be my life and it could get worse, it released me from the notion that more could be done, just for the effort of searching more effectively, his words took some courage to look someone between the eyes and tell them the truth, they may well not have been the words I would have liked to hear, but 17 years later her I am.

I would agree never give up but be realistic, and potential and concurrent surgery is not without risk could you live with increased pain as a consequence or continue to manage what you have, however difficult that may be. Living a life or regret angst and frustration takes as much energy as portraying a positive attitude, many disabled people live within the limits of restriction, I have not eradicated that frustration just that I manage it more effectively.

We can all think our situation is the worst and that is about perception, having no legs is not easy or dying of cancer, many are living unseen turmoil, none of this is easy and it is to our credit that we carry on at all, with hope and determination. Many cannot change the pain and deal more effectively through PM the last hope for some.

Long term meds do have inherent gastric problems and usage and the alternative not to take them for many is not an option, continually managing the effectiveness of medication is an ongoing aspect and one we should all evaluate periodically. Finding what works for us can take time, through trial and error.

We are all on the same road however long our journey, many have walked our walk and experienced what we are about to receive, we share our experience gladly, attempting to minimise that error element that is so reflective of increased pain and getting to a more optimum position more quickly.

Good luck and take care on your journey.

John.