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Epidural Fibrosis symptoms mounting

Just got results of latest MRI. Scarring from Epidural Fibrosis is spreading. My Pain doctor confirmed that I am feeling more pain. Sometimes with constant pain, I am not sure if I am just having a bad pain day or if it is actually getting worse.

Today I noticed that my legs are getting weaker. They burned after only a short distance of walking. Before this, I wouldnt think twice about walking the length of time I did. I did it everyday. Its part of my job. Today told me that my body is changing. I dont get any less thorough exercise than I had before. I would walk in our yard at my job...it is quite big, maybe 5 acres. I would walk across it like nothing. Today I walked about 75 yards and I noticed I am getting tired and legs are getting heavy. I recently stopped wearing steel toe boots, thinking that maybe I am straining my back. But now I am in tennis shoes and its no different.

Been missing a lot of work time. Missing some sleep. Sleep schedule is very strange. Some days I will go to bed at 9:30pm exhausted, and I wake up every few hours during the night. And other days, I cant seem to get to sleep until after 1:30 am and sleeping hard for like 3 hours and get up for work drained. Some days I cant get out of bed without severe discomfort. I go into work later or not at all depending on my pain level.

My doctor also told me in same appointment that I will need to start thinking about disability income. As my health and pain gets worse, I may start losing mobility and thats when we will start looking into other options. He mentioned that spinal stimulator thing. He said we wont do that until I start losing mobility. Hmmm interesting. Chances are, it may not work for me he says. I dont think he is telling me this to bring me down but every single option I have tried failed. I continue to get worse. He said he doesnt want to do another surgery on me until I get much worse. He doesnt want to increase my scarring. He also mentioned, in the next few years, there could be some new treatment to help. I guess he is right. Lets not get too invasive until it needs to be done or maybe he wants to see if something comes out before I get the stimulator thing.

I asked my pain doctor if there was some where I can go or someone I can see to learn how to deal with the emotional distress I am going thru. Is there some kind of psychological therapist? So he will check for me. As for me, I am not doing well. I dont go anywhere unless I absolutely need to. I try to stay upbeat but when pain is all there is, it is hard to keep a smile on my face. I cant always act like nothing is wrong. I am tired all the time. It seems that holding this pain in is very energy expensive. I am so tired. I want this to stop. I felt that I have paid for my imperfections and selfish actions already. I cant imagine how it will be when I get much older, if I get older. If it hurts this bad now, how bad will it be later?

Well, thats all I have to say for now. Just having a bad pain day and it completely screws my mood up. At least I can still work and walk and drive. It gets harder everyday.


  • SavageSavage United StatesPosts: 5,476
    edited 06/18/2015 - 9:21 AM
    It's so understanding that you would be emotional. All happening, pain, less able to walk, sleep, work, or enjoy your life, __all at once. It definately takes its toll.

    I still see my psychiatrist for depression. I found it incredibly helpful.
    I must say, I have not had a twinge of actually feeling depressed for about three years now. I continue for med management.
    Previously, I had years of talk therapy, while transitioning into my life with chronic pain.

    I also had the sleeplessness. Horrible! Days and nights, without even a nap! I was wide eyed, wild eyed, irritable and easily angered!
    My pain management doctor did a sleep study on me, some periodic limb movement disorder.
    Anyway, on meds to help with the sleep. And to this day, I never take a good nights sleep for granted.

    It seems you have good relationship with your doctor, esp for him to prepare you for inability to continue in your work.
    After trying to push through for years, I had to quit my work on a Tuesday and that Thursday I went to Disability attorney. Following his advice, I received disability assistance within six months.

    Now a part of my support system is a social worker who helps me navigate Disability and Medicare and brings to my attention different resources to help me take care of myself.

    When everything first hit me, my world was in a whirl! So difficult to navigate through everything while in the incredible pain.

    You're situation is considerable, but a step at a time, ___ there are people to help lessen your load.
    Wishing you all the best
    Spine-Health Moderator
    Please read my medical history at: Medical History

  • armelindarmelind South TexasPosts: 88
    edited 06/18/2015 - 2:41 PM
    My pain meds dont really work, I take ambien and amitriptylin to get me to sleep. Some times that isnt enough. I have been on ambien for years. I have been an insomniac since about 2000. I was put on ambien around 2010; after my insomnia went from seasonal to constant. I have to take it at 8pm to be asleep anywhere between 10pm and 2am. Sometimes I dont even get to sleep until after 5am. I have tried many sleep aides, even the "herbal" type that my friends "use" is no help.

    The doctors always said the next procedure or medication will help. Me and my wife have kept up our spirits throughout my pain ordeal since 2008. For the last year, i dont get that encouragement from my doctor. He says, "I am sorry but there is nothing more I can do..."

    He has told me to prepare for disability because thats logically the next step. Nothing has worked and I finally felt my body want to give out today for the first time. My legs wanted to buckle and it scared me.

    I am not going to ask what your condition is because there is no comparison. When the pain is stronger than you and the meds, all you can do is "will" yourself to do what needs to be done. I now realize that even though I have little to no restriction of movement, other than what my fat body limits, I am partially disabled now. I have never been a pill person, I have never liked relying on someone. But as time goes on, I see how my abilities lessen with increasing pain. I try to stay active. I try to be helpful. But sometimes it only takes 10 minutes of chores to bring me hours of unbearable pain. I dont even walk with a limp...because it doesnt decrease my pain levels. The pain is constant. I can only make the pain worse. I have not figured out anything that eases my pain when I am hurting. I just know that sitting down feels better than laying down most times. I used ot be able to wake up and sometimes feel better, but now, either I can get up for work or I am not ready for the extra pain that will surely occur if I do get up, so I stay in bed and try to sleep until laying down is no longer the least hurtful option.

    I walk without any help. I still mow my lawn, even though it can take 2 days or more when it used to only take a couple hours. However, one time I mow my grass, I could be out of work for 2 or 3 days. Unable to get up. Sometimes, it only takes me to be awake and my pain will zap all the life out of me. I catch myself almost dozing off at work because holding my self together from the pain takes all my energy.

    Everyday gets worse it seems. This is no exaggeration. Last week I felt better than this week. At this time last year I was better than I am now. I am still working up to 40 hrs a week. My pain this year made me miss more work so far than all of last year. I guess it can take up to 2 or 3 yrs to get disability so I better get started on the process now. My mother was disabled and it took her about 2 yrs to finally get it. I have no savings and I pretty much live paycheck to paycheck. But I do own my home (technically the bank owns it). And I own my vehicles out right. But my disability is going to be half of my current pay, according to those forms SSI gives you every year or so. I will lose my meager home and I dont know what else if I am only getting half. My wife makes much less than me so i am the one that pays all the bills.

    I dont know how talking to someone, that my insurance wont pay for, will help the pain go away while paying my bills. I dont see it. I know thats not how it works... but meds dont work, depression is setting in. I always feel terrible. So much pain, I get nauseous. I want to cry but it wont help and I cant afford to waste that energy.

    I joined this group at first for information about an upcoming surgery. I have stuck with it looking for more info. I guess I am now on here to let out all my thoughts. My wife knows this info. It makes her sad when I keep "complaining". What else do you do? What do you call it when you want to shout out, "GOD PLEASE MAKE IT STOP HURTING?!?!"

    My wife cant deal with that, so i am on here telling you. I am hoping one of you can tell me my pain will go away or at least it will ease up. My doctor only says SORRY now. I get no reassurances. My life is finished. At least the life I thought I had. I can never again hit the road and drive for 2 days to go visit friends and family. I cant even sit still on a plane long enough to go that distance. I dont want to leave my home because eventhough I hurt no matter where I am, I feel safe at home and near my bed if I need it. I cant do what I want anymore without retribution from my body. Please tell me how talking to someone will allow me to go camping or visit family or friends without wishing I was home so I dont have to pretend I am having a good time. Is it possible??
  • SavageSavage United StatesPosts: 5,476
    I do understand your frustration. Truly!

    It is too bad your insurance doesn't cover for psych consult.
    Talking with someone helped me, ....well to get all my frustrations out, but i also learned different ways of coping with this new life of pain.
    An example is a little thing, but not easy to do, like change of the self talk I was doing. I was so down on my situation, money, the pain , the isolation, the loss of my identity of my work. Down on myself.
    My relationships suffered. So many losses.

    I still need to practice focusing on what I do have, the faithful people in my life, even though there is no way they can truly understand what I am going through.
    Honestly, if I was not living this, I wouldn't believe it myself.

    And I use antidepressants. Med may work for a time, stop, need to change, increase dose, get stable....repeat....
    All meds and treatments and testing all so trial and try again. But antidepressants make me feel SO much better.
    Then I am better able to cope with the rest of the list of care I need.

    There are many counseling areas to go to that will work with people on a sliding scale.
    But only you can decide if and when you think you want to invest time and money into it.
    I can just tell you, it was a lifesaver to me.

    And for now,... no, ... talking with therapist won't get you to camping or visiting friends.
    But maybe friends, maybe in small doses, can come to your home. Everyone bring something.
    You stick to your chair or couch or whatever most comfortable and let people join in assisting..knowing a little of what you're living.

    Have you considered another opinion with doctors if yours is not managing your pain adequately?
    I would think that a priority. You need to have a proactive doctor on your side. They are out there.
    My pain meds do not take the pain away, but definitely take the edge off. And I'm thrilled with that!

    Re sleep aid. Maybe doctor needs to change it up. Sometimes we become tolerant and med becomes ineffective.
    I take clonazapam and trazadone for sleep.
    I was taking, as prescribed, up to three trazadones to be able to sleep. Now I only need one.

    Re Disability, you said your mom had to wait two years. Like I mentioned, I received mine within six months.
    I think having disability attorney is essential. My opinion. And no cost to you.
    If you receive your money after six months, the attorney is paid from that back pay money that you will receive.
    And if concern for it taking awhile, the sooner you start the process, sooner you you have that financial security.

    My disability checks are considerably less than I earned while working, also.
    But when life changes, I learned I needed to change...cut back on things, I moved to smaller apartment, etc...
    I have my bought new 2007 car with 25,500 miles on it. That's how close to home I stick.

    When all this first entered my life about 1996, and as I worsened, I realized I was going through the stages of grief.
    Not unusual with chronic pain. I've seen other members speak to it also.
    The anger was great! And I had no where to direct it. I turned it inward.

    Then the denial and the rest of the stages. Just being aware of the stages can give hope that there is, at least, a glimmer of light at the end of the tunnel.
    It's difficult to realize though when you are currently in the tunnel of chaos.

    Hang in there!

    Spine-Health Moderator
    Please read my medical history at: Medical History

  • armelindarmelind South TexasPosts: 88
    edited 06/20/2015 - 1:47 PM
    I hear you say that your meds are minimizing your pain... thats the difference we have. I am on 10mg of Methadone 2x a day... It barely even touches my pain. It seems like I am taking it because I need to... or I should because if i dont I will be in real trouble with my pain. But I have forgotten to take my meds and never noticed a difference; I took it anyways. But truthfully, I can barely tell the difference being on this medication. I am in intense pain ALWAYS.

    Oxycodone and the other oxys stopped working after a year. I was on Hydrocodone 10-325 for about 4 yrs before Oxy. But over time they stopped working. I was taking more and more and I told my doctor and he moved me to a higher grade pain med. I went thru them all. My pain doctor says I am on the highest type of pain meds he will give me.

    Last time I went to him I told him pain is becoming unbearable on the Methadone. He told me that he saw that I am worse on my MRI and yes i will be hurting more and more. He could see the scarring spread. He says there is nothing more to do. As i start losing mobility and function, we will consider some other options... its the last one and he doesnt want to do it until then.

    The only other pain dr in my area is an hour away. He only takes morning patients. With that situation, I would miss more work than I already am.

    I have done all the reading up that I can about my issue and this spinehealth website we are on has the most links to information I have seen so far. I have read that it gets worse, pain meds barely help and eventually I will be in a wheelchair or bedridden. Nothing is in there telling me how to control my pain.

    Look up Epidural Fibrosis. See what it is... it is Failed Back Surgery Syndrome. It has no treatment and that means I get worse and until some new treatment or procedure is approved. I get no relief, I get worse. I have no hope. I have no reason to want to continue if getting worse than I am is all I have to look forward to.
  • SavageSavage United StatesPosts: 5,476
    edited 06/21/2015 - 1:45 AM
    ....I did look up your condition a couple of places. ...have a better understanding of what you are dealing with.
    Of course, I realize reading about something, my true understanding is still extremely limited.

    Do you ever feel relief?
    Ex, as if you have time off of work? When you can move about at your own pace?

    I hear you when you talk about losing yet another day's pay to go and see another pain doc.
    But don't you think that is an investment that would be worth it?
    Having another opinion? doc with other experiences with patients? New eyes for your treatment?
    Drawing up from within you some hope, and continuing to try before you give up?

    When I first met with pain doc, he told me he would be treating me as a cancer patient.
    I continued with work about two years before I just couldn't take it and I wanted to slap everyone who spoke to me, as it was all I could do to concentrate in keeping my pain in check and do my work, but I could see my work suffering.

    That's another difference between us.
    I gave up working.
    Simplified my life style.
    I am able to do an outing here or there, and that's like twice a year,..if someone else drives., I need assist with grocery shopping, vacuuming, etc...
    I think vacuuming is one of the worst for spine issues....I would imagine mowing the lawn, not too good either.
    When I start thinking, I can do this or that, I know even if I can, I should not as I know it will worsen my situation.

    I am mostly housebound, mostly in bed due to the pain of activity and sitting is horrible. I use paper plates, etc..because I can't stand long enough for dishes...and I live alone.
    When I walk, I use a cane. I couldn't believe from the get go how it helped in lessening some pain when I am mobile.

    Caregiver to my pain is my main job. And it's full time. But lessening the pressures in my life...priceless.

    Like I said previously, I suffered with hopelessness. But I filled with hope now, even in my limited and somewhat isolated world.
    They come up with new meds, treatments, etc..all the time. We never know what is around the corner.

    Hang in there!

    Spine-Health Moderator
    Please read my medical history at: Medical History

  • armelindarmelind South TexasPosts: 88
    I see where you are with your condition....and i can relate to a point. But you have mobility issues. It hurts for you to this or that but it feels better when you do this or that. That is not me. My issue is pain 100% of the day. it stays at a level of 7 or 8 for me. I hate the pain scale because it is so subjective and relative to the person. If I had felt this bad on meds 2 years ago i would have been a crying miserable mess. But now that I have slowly eased into this bigger pain that is worse than the pain i was in before all of my surgeries, I can "take it" to some degree. Like the frog in a pan over a fire.

    I get no relief from sitting or laying down. I only sit because my legs are tired or I am in so much pain that I feel dizzy. If I go anywhere, I sit down as much as possible because if I dont, my pain will get worse. I can make it worse, i havent figured out how to make it better. I sometimes can do stuff to keep it from getting worse but not all the time.

    Road trips are out of the question. I cant stand to be in my car for more than an hour. I dont go anywhere unless its a very special occasion. Because no matter where I go, I take my pain passenger with me. Its like a parasite. Do you know how it is when an animal is gravely hurt, it runs away to die or it just finds a place away from everything? Thats how I am. I am by my bed, I am in a room separate from my wife. Mostly because since I gained weight I snore and my wife is not someone you want to fight with about it.

    I have no mobility issues. I feel like someone has a voodoo doll with a pitch fork in its back. My only mobility problems are from my weight gain. I can work on my cars still, but it takes me about 4 times as long to get something done...which make me have to plan for my recovery time if i do anything. For example, loading the dish washer gives me about 3 hrs of pain. Mowing the lawn with self propelled mower on mostly flat yard will (either front or back yard sometimes both) get me hurtng so bad I am shaking, I get nauseous. I get sharp pains in my pelvis. I get short of breath. It feels like cold sweats. Its not heat stroke because I take many breaks and I stay hydrated but its symptoms like that....thats what my pain does to me. Its like I can do everything but there is a cost of pain to it all. I choose not to do some things because it is not necessary and the pain price is too high, and others I HAVE TO because if I dont, no one else will do it unless I magically create more money.

    Speaking of money and living on less, I dont know what else I can do. Many things I have arent necessary for life but they help fill the void. I have cable tv and internet. I pay for 3 cellphones (me, wife and college student daughter), the rest is electricity, garbage, water, student loan (mine), and house payment. (we just bought this home in 2012 & the mortgage is cheaper than rent of a place half this size.) We moved out of a 2 br apt that was $50 cheaper than this house. we dont have flat screen tvs because our old ones still work. We dont go out to eat cept maybe once or twice a month. My wife cooks and pays for groceries. We dont own new cars... both of our vehicles have over 200,000 miles on them.

    Anyways... I have other things to do now that I am off.
  • armelindarmelind South TexasPosts: 88
    Since the last time I posted on here, I have started noticing mobility problems. My legs are weaker faster. I cant walk as far or as quickly as i could, even 2 weeks ago. I feel burning in my legs that seems to let me know my legs are not strong enough. I have a van I have to climb into. In the last week I notice my legs are having more trouble lifting me into my van. Its not a big van, its a Chevy Astro van.

    My days are getting worse too. In the last 2 weeks I have missed 2 days of work because I could barely move from the pain. I have new sharp stabbing pains that warn me to be careful when I move. I never had that before. Going from sitting to standing position is getting much harder. I can still walk ok but the pain is now making me slow down. I have noticed a deep ache that is pretty much constant now in my right rear. Sleeping is getting difficult. Work is a strain. I have to sit for my job.

    I used to have days that I felt fairly good (still in pain but nothing that made me anymore miserable than usual) but lately, my pain has been an even more negative factor for me. I would have an average of 4 to 5 good days a week with a couple miserable days. For the last 2 weeks, its been fairly miserable about 16 hrs a day and maybe a couple hours in the late morning that I am a bit more mobile. It is no longer good days, it is down to good "hours" in a day only.

    For the first time I started thinking about how I am going to get around with a walker. There are some areas in my living space that are a bit narrow because I keep things within reach. I will have to arrange that stuff better before long.

    I stopped thinking about how it will get better. That hope only seems to let me down. I guess I am tired of being disappointed when the bad news keeps coming in.

    So, thats the latest and I dont know what to do. I dont have any idea how to accept this and its even harder seeing my wife suffering in this.

    Thanks for the encouraging words. I guess it helps some.
  • itsautonomicitsautonomic LouisianaPosts: 1,819
    Failed back surgury usually results centralized pain syndrome which is very hard to treat and get even a moments relief from. It's not typical pain where you can exercise and feel better, stretch and feel better, lie down and feel better etc. My pain is centralized and the drs have to keep getting on me because I work very hard to feel better and they say if this was an orthopedic issue , yes , you would feel better this is a CNS issue so same rules don't apply. I've had back issues them CNS issues and speaking for my self the difference is unexplainable in not just the intensity but it's just so different in so many ways
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • armelindarmelind South TexasPosts: 88
    Yes, itsautonomic, I have had difficulty explaining the pain... the best i can say is back breaking pressure and no matter how I put it or tell someone it isnt what you think, I still get some saying, "I can always get relief by...." or "try _____".... no one seems to understand that it is something thats there and nothing seems to touch it. I have been lucky lately, my pain levels have settled a bit but it isnt because of something i did. I cant control how bad it will feel. I can wake up and know it wont be good. Its not that I want it to be bad but if I wake and I can barely stand it, I cannot do one thing that will make anything easier. I cant give a number to how bad it is. Anything worse than my current pain is a 10 but I have had my pain so long that maybe a 10 for me is a 15 others???? I know that when i am sitting down, sweating and shaking.... i have to try to smile and act like nothing is wrong. Because anyone else that had my pain for an hour would be out of their mind from the pain. But as I go longer enduring the pain, even at its worst, I am grateful that it is ONLY that bad. I couldnt imagine a pain like 3 weeks into 3rd degree burns or something. But living with a pain that feels like broken bones, is a heavy lifestyle I dont want.

    Anyways, even though you didnt say much, it sounds like you "get it"
  • I've been reading your posts & I'm so sorry. Last year a big, long term European trial of a new kind of stimulator ended & the results were pretty good. The English part of the trial had mostly failed surgery syndrome type patients & they reported a lot less pain. I've posted about it here before, now I can't remember what it's called. I'll have a search but hopefully another member will remember? When I was reading up on it they said it was starting to be used in California so it might be more assesable here already. It's my understanding that the regular stimulators are mostly effective for sciatica, leg pain & not the rest of it....

    You mentioned therapy. I saw a chronic pain psychologist & she was actually very good. Her main focus was finding coping mechanisms to deal with everyday things. Being able to vent to someone who really understood & actually had advise was priceless. She was part of the clinic I went to & was very flexible in her appointments. I'd see her straight after my PM so I didn't have to take 2 days a month at appointments.
    Changing around the narcotic meds I take has been far more effective for me. I know you say that your doc is at the top of what he will precribe. Extreme situations sometimes need extreme care. I've never been on methadone (it's one of my docs suggestions) are breakthrough meds effective while using it? I know because of the half-life they're very careful with methadone. Isn't a consultation with a different pain management or board certified surgeon worth it? I 'interviewed' several before going with mine. I know that no-one can work miracles but in my experience docs can sometimes get a bit jaded dealing with us when things aren't working. Maybe a new set of eyes could help?
    To be honest it might not help but I know that I feel so much better about my situation when I've got a plan & I'm being proactive. We're all different. Some find it incredibly frustrating & depressing seeing more & more specialists. I've been on this not so merry merry-go-round for nearly a decade. I watch my kids grow & wonder where all the years have gone.
    I know I don't have much to offer that hasn't already been said. I know there aren't magical solutions. I just wanted you to know I'm reading your posts & feel for you. It sucks! I'm sorry.
    Osteoarthritis & DDD.
  • armelindarmelind South TexasPosts: 88
    Again I read your posts and I feel that you have the best idea to understanding what most others don't get about my issue ( I don't know if those are the correct words.)

    The methadone took a long time to kick in, and when it did, I was a bit disappointed. It seems to barely work but at least it is better than the OXYs and the Hydrocodone type meds. Those meds basically left me a lump of crying dull aching pain. Supposedly there are other "name brand" pain meds I could take but I cant afford the "name brand" price. With generic meds, my prescriptions are free. And to get the one my doctor wanted me to try was about $150 a month. I am sorry i cant do that.

    I will get more in-depth about this tomorrow. I NEED to get to bed.

    Goodnight all and thanks for sharing.
  • armelindarmelind South TexasPosts: 88
    I didnt get back to my thought the next day so I forgot what I was going to add...that happens alot with my meds.

    So, the thing about Pain Specialists, I have to go to ones that are in my insurance network or I get charged MUCH MUCH more. Also, of all the doctors I had been to in the passed, none of them seemed to try to help me diagnose my problems. My Current pain doctor started cautiously, but as things didnt help me, he went directly to what would tell him what was wrong with me. My other doctors just filled out prescriptions....and drugged me silly. My current Pain Dr gave me a discogram (is that the correct term?) He injected a dye into my discs and if they leaked out while watching thru a fluoroscope, it means your discs are ruptured. He found 2 of them on me.

    Within a week i was talking to a surgeon and 2 weeks after that, I had surgery. I was told I should be pain-free after I recover from the surgery. I wasnt.

    I am reluctant to go to another Pain Dr for one, the closest one to me is an hour further away from me. They only take patients in the morning and all of those restrictions equal wasted time and lost wages. I already live 30 minutes from my current pain Dr but I work in the opposite direction. If I have an appointment at 4, I must leave work at 3 to make sure i get there in time. And when I get done, it is too late to go back to work so I go home. I miss 2 hours of work total.

    If i go to new doctor, It take me almost 1 hour to get there from work, I will have to start over with my care because the Dr's often back up your care a bit to make sure previous Dr didnt miss something. It will take me an hour to get back to work unless there is traffic either way, which can add another hour. So already, I miss almost half a day of work with each appointment and I get really no benefit. I already am using the surgeons and pain specialists that are best for me in my area. I had been to other surgeons and they missed my ruptured discs. So....I am fairly happy with my current ones, other than the fact that I have the failed back surgery thing.

    My pain DR said that my current issue was caused by my surgery. I asked him if it was possible that my nerve scars could have formed earlier in another back injury and he said that is was definitely caused by this surgery. Now I am curious if that could allow me to get a malpractice lawyer. If I am damaged for life, couldn't there be some compensation to help me as I become less able to do what I need to do? I am not saying I want to be rich because he messed up my life, I am simply stating that now that I am damaged by my surgery, it can potentially affect my ability to be employed. It can also reduce my earning ability as it gets worse. Shouldn't I be able to have the same potential earnings as anyone else? I can take responsibility for my actions but shouldn't I make sure that my surgeon takes responsibility for damaging me?

    My pain meds dont make me pain free. I get about 20 minutes of good work in about every 3 hours. Sitting here typing this message hurts. I am not living a life I want. I am miserable everyday. Some days I want to suck a tailpipe....other days I think I cant abandon the people that need me. But why should I feel responsible for others when I feel I have no control of my life? No one can help me, I feel guilty thinking I want to file a lawsuit against my surgeon. I have no one to answer my questions besides Google. No one understands my issues. No one I know is experienced enough to help me.

    Also, how will talking to someone help me deal with my pain? If narcotics cant reach my nerves to stop them from killing me, how will talking to a person help? i have been to marriage counseling in the last year and I am not feeling any better for it. My marriage is still going but it is only because I allow it to continue. I am not being egotistical at all. My wife knows that her actions are a termination worthy action and that I could have easily put her out, but I chose not to. So.... how can talking ease my pain? Why should I think it will help? How will I become a more useful person in my life? i dont see it. I see me being dependent on everyone. I see me needing nursing care in 10 or 15 yrs. That is before I am 60yrs old. i dont see why I should give a darn about trying to live healthy anymore. If pain is the one reward even I have after all I have sacrificed to be healthy, then why bother? I cant excercise, I cant rest, I cant eat, I cant sleep with out pain. Why should it matter that I take care of my health? I cant do anything that doesnt hurt more than I can handle.

    Everyday that I get thru alive is a miracle because one day, it could be soon, or in a a decade, I will be done. I will be too tired to want to hurt anymore. This feeling has only gotten stronger in the last 2 or 3 years as my pain level has jumped up even worse than I thought I could handle before. I don't want the rest of my life to be filled with unbearable pain. It is that way already. How is that something worth wanting to stick around for? I dont have that answer. Until I can answer, I will be here, Miserable and wishing it didnt have to hurt anymore.
  • armelindarmelind South TexasPosts: 88
    edited 07/11/2015 - 12:01 PM
    I just spent the last hour typing my heart out... going deep trying to get some information and when I hit save, the last post was gone.

    It keeps pointing me to my latest post as something i wrote 3 days ago. It says it was updated today. I am very upset by this.
  • SavageSavage United StatesPosts: 5,476
    I do not understand the whys of it, but I have also experienced a delay in some of my posts.

    But with being member here as long as I have, I have confidence that the post will show up...as I believe yours did, as I have just read your very heartfelt post. I'm sorry for all you are experiencing with your health and with your marriage.
    Spine-Health Moderator
    Please read my medical history at: Medical History

  • I completely get what you say about docs. Stick with it. He worked to find your diagnosis. I don't have a lot of PM options. One guy has bought up most of the clinics & PT places within an hour of here. He was my doc. It would take me an insane length of time to get in to see him, he could never remember what was wrong with me & insisted that I do everything he had purchased the company or equipment for. Didn't matter if I needed it or not! AND even worse he wouldn't let me have things done if he didn't own it. MRI's for example. I went years without one even though I repeatedly complained that I was frightened & knew that something had really changed in my spine. He would always tell me about the amazing, state of the art MRI machine that he was going to buy. Insisting i wait for that! As you can imagine its extremely frustrating to repeatedly be asked by surgeons, "Why on earth didn't you get surgery for this before it got so bad?". I had a PM who would say, "Why on earth would you get surgery?". I do have complications that make other surgeons refuse to operate but made me feel like the very idea of spine surgery with my issues was crazy! Our relationship abruptly ended when I asked AGAIN for an MRI & told him I was now completely terrified & he snapped at me in a loud voice, "Well! If there was actually physically anything wrong with you maybe I could do more to help!!". I have a HUGE folder containing many years worth of diagnostics tests showing a huge amount of spinal problems of ALL kinds. Procedures, therapies, medications etc.!!! I couldn't speak for choking back the tears. I was so hurt, angry, frustrated but broken. I didn't create a scene. Just chocked out some "what's", "you know?....my,,spine?". Finally leaving in tears & NOT making the next months appointment. I've since got my medical records and I'm apparently a fibromyalgia suffering, very depressed lady in her 70's. She's probably getting depressed & very frustrted & confused being treated for severe spine degeneration & arthritis!!

    Sorry for the rant but obviously I'm not going back to him or one of his clinics. Most of my other options are beyond the distance I can drive....well, I could drive there but after waiting & being pulled around I couldn't drive home. Fortunately that leaves my doc. He's a good genuine guy who cares & gets it. Because of my insurance (marketplace) nightmare he doesn't accept my insurance anymore. I'm paying $75 to see him & he's writing my prescriptions without an appointment. He's a good one. I'm lucky in more ways than not. I believe he's done his best for me over the years I've seen him. Why change?

    Did your surgeon promises you 100% success rate? We're you categorically told that the surgery would definitely leave you pain free? I've had friends who have been in excruciating pain after various spine surgeries because of the scar tissue. It's known by surgeons that a percentage of patients will have this condition. Were you completely unaware of the possibility when you went into surgery? Were you asked about prior surgeries? That's one of the questions to make sure that you don't have a history of issues. I don't know anything about law suits. Is the 'only' (horrid word to use) 'failure' of the surgery the scar tissue or do you believe the surgeon messed-up in some way when he was operating on you? I bet the small print in all the stuff you signed covers him for a lot of eventualities. I'm not sure exactly how it works. Are consultations with those kinds of lawyers free?

    I'm so desperately sorry about the state of you're marriage. I'm in a very similar boat & it's broken my heart & mind in more ways than I think I realize at the moment. It's torture on so many levels. Future can be a terrifying thing. I'm still living this anxiety, stress & heart break. I don't know :-(
    The kind of therapy I was taking about - Chronic pain Psycologist/Therapist that I saw was very different from regular therapy. (I have to say I've never seen a normal therapist but I have a good idea of what it's like). Mostly it was all about trying to find ways to cope with chronic pain & it's effects on everyday life. One of my biggest problems at the time was getting my son from school. Particularly in the winter. When my pains worse anyway & the school queue is longer....I was getting white, cold sweat, dizzy, nausea that you describe. She went through a variety of coping mechanisms to avoid the effects. It was fine to point blank say that something she suggested just wouldn't work. It taught her things about me that helped her suggest a different approach. I found that working with her I'd get emotional/angry & end-up really venting about things & it was so refreshing to save someone understand how bloody hard it is for us. She really 'got it'. It just felt like a very different thing from therapy.

    I'm sorry. You seem to be in this deep, dark hole & you're digging deeper. I've been there I honestly have. You're going through so much in your life & that does effect our health in so many ways. Please take care of yourself. I have a whole list of silly little things that I do that I know make me feel a little better...even if some are psycosamatic. From diet, suppliments, lotions & potions etc etc. I know that these things make a little difference. When my pain consistently goes above a certain level, everything goes out the window as the depression mounts. At the time I should be taking the very best care of myself that I can I end-up doing the opposite.
    Osteoarthritis & DDD.
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