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What's left after spine surgery??

Started by 100000867351347... on 08/26/2013 6:46pm

I'm really not sure how to start a discussion on this subject so I will just tell my story in hopes that these words will mean something to someone out there, I've gone unheard for years now and I'm at the end of what I can handle both emotionally and physically so the words I type here are going to be very important to me and you will just have to excuse my spelling or misuse of words... This will be a long post so just sit back and take it all in!!

My name is George B Dearing Jr, I am 6'5" tall and weigh 251 lbs I am 34 years old at this moment till September gets here then I will have made it to one more birthday. I was raised by a mother that was addicted to drugs and she used a needle as her way of enjoying it so at a very young age I was shown things in life most would never thought could be true, I have two older sisters that went threw alot with me and as for our father he was in prison most of our lives. We lived and grew up on the streets of California sleeping under bridges and in cars we ate from trash cans behind places lik McDonalds and Denny's and other aces where food could be found we saw and lived threw so many hardships watching our mother overdose many times, seeing friends die or get killed over drugs and then I was beaten and strangled and told I was going to die by the hands of my own mother mostly because she was coming down off her drugs and she said it was because I looked so much like my father in which I really do! I have many stories that I could tell as it was my way of life then but when I turned 13 I was left on the road by my own family so I did as I was tought and I decided I wanted to change things so I worked and I worked as hard as I could because I didn't have a high school deploma nor do I have one now, so by the age of 17 "1997"I had my first child my daughter and I raised her the way I wished I could have been raised, shortly after I had my son "1998" and then by 2000 my wife left after cheating on me for most of the time we were together so I raised my two children by my self working hard to keep my promise to them that they would never know the life I lived before them!! I them moved to Texas in 2001 and had a son, and still working my but off had three kids and a good life and by 2003 another son came along so I started working even more I drove a tow truck day and night taking care of car wreaks tire changes and even repos I did this seven days a week, I took every job that came up so I could provide for my kids this meant working all day and almost all night sleeping for about two hours or so a day! Then on 12/20/2005 I got a call around 9pm that there was a wreak and I need to go so I jumped into my truck knowing in my heart something was wrong but went anyways, I came to a stoplight where my light was green so with a car traveling right next to me we went on threw the intersection but I saw halfway threw that the car heading for my right side of my truck was not going to stop, I dropped down a gear and tried to get out of the way and was looking threw my back window as the car smashed into the back of my truck spinning me all the way around to the point I was facing the road I just drove down, at this point I got out of the truck and thought my back hurt but I was shook up and so I ended up staying at work that whole night after the wreak.. My boss lady was mad when I finally said after hurting all day and loosing feeling in my legs I wanted to see a dr about it. Well the first hospital did X-rays and said there was nothing wrong and told me to rest for a week and gave me pills to take and I didn't take them! Then after a few days I went and saw another hospital and they said I needed to see a spine dr rightaway so I did and he said the L5-S1 was blown out so they tried for a few months after lots of tests to get the insurance to pay for surgery so by June 2006 I was approved then they put in the Charite disc!!! This was my first big mistake of my life the pain it caused was so unreal!! I am a man who didn't feel much pain I cut my leg with a skill saw and didn't feel anything before I had this disc put in but now the pain was so unreal, the surgeon sold me on this disc then as I complained he said it must just be the healing prosses! Well in Texas we didn't have workmens comp what they have is more like the policy for your car so when it runs out then your out of luck!! So by 2007 I believe it was July or close to it I had no choice but to go to work to support my family! At this point I didn't know my ex wife was stealing my pain meds and even switched my pain meds for muschle relaxers so I took a lot of them while I was trying to work as an iron worker, man they made me so sick and I tought my heart was going to explode, around this time I was taking seven norcos a day 10/325's so seven relaxers a day over a three day stretch just about killed me!! Well then in 2008 came my youngest daughter! Man I was stressed out, my ex wouldn't work at all so it was all still on me! I kept trying to work and come home lay in the bathtub all night crying in pain just to do it again the next day because at this time the ex was taking all my meds and I didn't know, she told me the dr didn't want me to have them anymore so I just took her word for it!! Well in 2008 I lost my job so we move back to California!

As I was new to this state as they say! I couldn't get work and my ex still refused to help! So I didn't have insurance at this time but the pain was too much to deal with so I went to the hospitals a lot to the point they started calling me a pain med seeker! Wow that hurt!! Well I went to Roseville ca hospital with bad pains in my belly, "mind you at this point I had medication in my pocket" they read my chart and said they couldn't give me anything I told them I didn't want their meds I wanted to know why my belly hurt so bad? After being sent home I came back and they treated me for heart attacks all night long then sent me home at 5 am I drove myself home then by 1pm while sitting in church I fell apart so they took me back to the hospital where they left me lying on the waiting room floor for a couple hours then when they took me in the ER they told me again they weren't giving me any pain meds then the dr came to see me and they found that I needed to have my Gaulbladder removed it was full of stones and gain green wow what a shock!! So after that we finally got medical and I started seeing drs again for my spine and legs and each dr I see makes it harder to speak because they make me feel like I'm after meds but what they don't know is I have a wife that takes them and then watch me in pain nice woman huh? So anyways I have had so many tests and procedures done that the drs can't believe it and are shocked that each dr does the same tests and when they find out that the Charite disc is the cause they turn me away and send me off to another dr!! So i ended up leaving my wife after finding that she too was cheating on me and taking my meds and hurting my kids so i took all five of my kids with me and moved on! i lived for sometime with just me and my kids and then decided to see a dr again to start on meds again! i then found a wonderful woman with five kids who wanted me and my five wow how awsome even though i was a broken man she still wanted what was left!! we merried 4/5/2013 So in September 2012 a dr at UCSF decided to do a partial fusion at the location of the disc so steal rods and screws with a bone graft was done to stableize the disc and yet the disc is still in me!! So now my legs are much worse and deep depression has set in! I cannot get my drs to call me back nor look at anything to see where the problem might be!

My spine hurts so bad! I have a lump right next to the scar at the top and my spine at one time made a pop noise as I tried to get up from bed one day! My left hip has a tear in the joint and a tumer in my right hip.. I have recently developed blood clots in my right leg! My left foot kills me along with my leg also my feet go numb if I sit at all or stand too long! My back is killing me I cannot do anything anymore no sleep and no hope!! All I think about is pain 24/7 I have ten children that need me and although I wouldn't take my own life because of them I sure think about it if death is my only cure?!?!?

I have lumps in my legs and in my sides of my belly so my dr said it is limphnodes and I should have it checked? Really? I should have it checked! Whelk I have had such a run of bad luck with all this and I'm still fighting for my disability, they say because I'm 34 that I don't need it and they can retrain me to do something else? Hum? Ok I'm game! But all I can do is lay in my bed and cry about my pain so I guess if there is a job doing that then I've got it made!! So at this point I've come to accept the fact that care in this world has gone! I accept the fact that my kids nolonger see me as superman like they once did they called me that for many years but not now! I cannot figure out how my kids can say I'm their hero? It kills me when they say that lately! I accept that I will be like this for the rest of my days, I will not throw that ball, play guitar, draw with my kids, I cannot dance with my wife nor walk by her side! I'm scared she too will grow tired and be yet another person to leave me!! I will not ride bikes with my kids and so much more! I accept the fact that my life has come to this! I am a man that fought threw this world threw the fires of hell to become the man I once was and a proud man I was because I earned my rights to this life but now to see that it was all just to end up here dying inside full of imaginary pain full of depression and lost, I am scared that this is what's left!!

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I have been taking 100mlg of morphine 50 morning 50 night, loratab 10/500 2-3 times a day, ambien 10mlg.. For the last year I wake at 7am take the morphine with the loratab then go back to bed and try to sleep till it kicks in then about 10am or so, I get up and try to do things but end up right back laying in bed due to pain also around noon or so everyday I get a headache that lasts till I go to bed.. Then around 6pm I take 50mlg morphine along with another loratab!! I ache and hurt so bad but still get up and try to do stuff, my dr tells me that the amount of medication I take I sould be a zombi in bed and I shouldn't feel anything and he is very surprised to see me not feeling the affects of the meds but its like I've tried to tell these drs for a long time now, I can't get drunk! I have a high tolerance to all meds and when the hospital did my surgery I woke in the middle of it so they had to double dose me! I think I might have a opiate intolerance or something like that! The meds I take I have to see the dr for every month to get the script for them then the pharmacy sends off for and approval which puts me with out anything to take for a few days each month and it sucks too because I take this crap and it just scratches the surface of my pain it just makes it a little easier to deal with and that's all!! I don't get that high feeling that others get!! I want help so bad from a dr that cares I want help getting a med that works for pain without being sick and dizzy all the time. I asked my dr last month to lower the morphine dose to 30mlg each time so now I am taking it slow but I will quit taking the morphine buy the end of this month I hope and the reason why is because I don't want to ruin what's left of my body and I'm tired of mt PCP dr looking at me the way he does and saying that at 34 I shouldn't be feeling this much pain?!?!? Geeze that's what I've been saying for a long time now!! I am lost here, hopes and dreams gone and mostly due to ignorant drs!! I know they deal with fakes a lot but a wise man can tell I'm not one of them! Every couple months I get tired of taking meds so I quit for a bout a week but then the pain gets so high I can't see nor think straight so I start taking them again! I can't live without hope but there is no place to get hope so I'm lost!! Drs that aren't doing their jobs and then they have enough nerve to ask me what I want them to do to help me?!?!? How in the hell am I supposed to know?!?!? I'm not a dr but getting closer every day due to all the research I'm doing to find a cure for myself but I don't know what's left after surgery? I'm not the same anymore! It helps greatly to read the posts here and almost gives me hope but then the reality sets in that although I read about the good drs out there trying to help people like me, I'll never find one!! I will never get a dr to fully truly help me I don't have that luck and besides I'm done trying to convince drs of my pain!! Because I'm a strong man that had been threw so much in life I hide a lot of pain to the point now I don't know how to explane it all so I've started a log in a book to express every ache and pain but quit because when I tried to show my PCP dr he wouldn't even look at it so this is my last words to explane myself.. I will try to post here on this thread as I can but I feel my words are worthless and yet once again a waist of what little energy and time I have left in me!!

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Hi George, I tried everything I could to get better,nothing help a lot. I would of killed my wife if she took my pills away.I`ve had a lot of trouble with my wife since my back problems. I can`t understand that at all. You would think a couple would get closer not a part. It`s the pills and the pain in my case I have money. Well pain pills try Oxycotton it work for me where morphine didn`t help at all. It just made me stupid/confused. TELL UR DOC U have to have them!!! I`m On sleeping all the time that`s hard you always have to change things. Do caffeine pills read label you can get sick from them. Vitamin B-12 I take 5000 zipMelt tablets again read label. This b-12 has been work for 6 weeks now for the staying a wake all day. Change multivitamins to a hi energy helps me stay awake. My pain management Surgeon told me to take this stuff for PAIN you get it at GNC it helps a lot Anatabloc 300tabs in bottle. I don`t take my break through meds at all now. They well help 70 % of the people that take them they say. down side they r $80 for 6 weeks supply for me.read label the amount varys . I hope this helps someone, SAM

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Sam, trust me I wanted to kill my ex after I found out what was really going on and really there was a lot more going on then I wrote about her, she did so much more then just that!! Anyways I too understand where you are coming from with my new wife, we were really close when we first got together two years ago but sense my last surgery we have grown apart even though we did marry a few months ago! She looks at me different now and I think it's because they see us as strong men but then when they see our weakness they loose something about themselves my wife says its because she knows there is nothing she can do to help me and it kills her to see me like this! I don't know? All we can do is try right? My kids do the same though, they talk different when around me and that hurts!

On another note though, my dr just called finally and is sending me for more tests! Yeah for me I love tests, not!! But he thinks I blew out the next level up and wants more tests to see if they need to remove the Charite disc and put a cage in? Really? Dr Charles Rosin in California has protested this disc and did his studies and says it needs to be removed so that the pain will be gone! So we will see I have a little hope today now and am excited to see the results of these tests and also my dr said the lump at the scar could be hard wear that has came loose so I guess we will see!!

Thank you for responding to my long post it helps to hear some new things to try although I have to admit I'm sceptic about the vitamins working I would try anything these days short of more narcotics I am tired of taking harmful stuff! Again thank you

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Does anyone else have issues during the change in weather??

I can tell a day or two before weather changes that it is coming, my body starts hurting worse in some areas, mostly my lower spine where the Charite disc and the rods and screws from the fusion are at! Man it kills me when storms roll in and it rains, the metal in my spine is like a weather rod, it lets me know when storms are rolling in but not in a nice way!! I don't know if its the change in atmosphere pressure or static electricity that causes this pain in my spine?? Any ideas? How do you deal with it and do you have any tips I could try to help ease the pain??

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George,
What a heartbreaking post. While most of us here have suffered, and will continue to do so, your experience is different, in the sense that it carries such a note of sadness. I'm so sorry that you have gone through all that you have. I hope that this new Dr. will find something that can be fixed and will offer you some relief.
Something you said, about the Dr. asking you what you wanted him to do...how true is that! I've experienced the same thing, of needing to know the solution in order to ask the question. It's as if Dr.'s are always talking in code. More often than not, I leave the Dr's office with more questions than I went in with, and as a result, my life revolves around Dr. visits, and at this rate, it will never end. I wonder what will happen when I can no longer make the trip to see the Dr., do you think he'll visit me at home? (I know the answer to that already.)
Acceptance is tough, maybe not acceptance as much as finding balance. I know what activities cause more pain, I just can't find activities that don't. (I don't consider laying in bed, or on the couch as activities.) It's not just a physical thing is it? It changes who you are, and how you think. This truly is life altering. But we do have life, and where there's life, there's hope.
Are you taking anything for nerve pain? I'm taking Gabapentin, it helps with my leg pain. It took a while for it to really work, several weeks actually, but it's really helping. Pain meds did nothing for the leg pain. You might want to discuss it with your Dr., it's not a narcotic, so there shouldn't be a problem. I was skeptical at first, but I'm a believer now. It's worth a shot, if you're not already taking something for nerve pain.
I wish there was something that I could say that would help. There are a few people on this site that have been here for several years, as you can guess, it's the people who's surgeries failed to give them pain relief, and we mostly come back here to catch up on what going on with each other, rant, connect with others who know first hand what we're going through, and maybe, just maybe, help someone else feel less alone in this hellish journey. To share the ups and downs.
:)

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Upanddown
Thank you so much for your comment, I guess you could say that I've posted here for two reasons, one being to share my story to try and help others make choices or learn their not alone, and the other is the hope that I find people who understand and are like me and not alone in this! I have felt alone for a while now, going threw something that those around me have no clue so they have no compassion to show. Pain sucks a lot more when you feel like nobody understands what you are going threw so yes life is worth living but in the same hand it gets foggy and you lose the reasons why! I know there's more like us out there and I am so happy that I can connect with people who know what it is like to be trapped like this, then the dr thing you spoke of, oh trust me I too leave there with so many more questions then before and the two hours back home is a long drive to be lost in thoughts ya know? Lol but hope for me comes and goes like water flowing down a stream, it eventually gets absorbed into the earth just as my pain absorbs any thought I have!
I believe I've been on gabapenton " can't spell" before and I had the bad side affect of being VERY short tempered and that didn't work because at that time I was raising my five kids by my self and had nobody I could turn to for help so I quit taking them but as for the help with pain? I'm not sure if it did or not its been a while sense then! Thanks for the info though its surly something I could reconsider again or see what else is out there that wouldn't give me side affects like that, it's not me at all I'm am the most loving and peaceful man that everyone around me says they know till lately and now I'm quiet most days lost due to the fact that it doesn't matter what I say anymore, I still hurt and those around me only hear the pain in my voice! I would sing my kids to sleep but these days I have lost the ability to find that peace within!
I too cannot find things to do that don't cause more pain! Laying in bed watching TV is the only time I can get moments of relief and I meant MOMENTS! I am becoming a dissapoiment to my wife now days and I can see that! She gets upset all the time that I will not sit on the couch but no matter how many times I tell her it hurts me more to do so, she still seems to think I want to be in bed! I have been an outgoing man most of my life just going and going so I hate what this has done to me now days!

I cannot thank you enough for your response, it means a lot to me to hear from people here and it gets me talking again and some things I've read on this site gives me hope from time to time! I hope you too are able to find peace in this life and some days of no pain or at least less then now would make it a little better.. Best wishes to you and again thank you

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George,
I'm glad you found this site. I think I already mentioned that I've been on here (on and off) for several years, so I'll share a little of my history.
In 2005, while at work, I suffered an injury to my lumbar. After two years and all the tests, P.T., and meds, I had L4,5-L5,S1 fused. (I found out after surgery, when I was thrown into sudden withdrawal, that dilaudid was NOT my friend. But it's the only med that kept the pain level tolerable.) I got 4 good years out of that fusion. I still had to take hydrocodone every 4 hours while at work, but compared to the pain I was in prior to the fusion, I felt great. I went back to work doing the same thing as before, which was manual labor... like you, I have little education, so my options were limited, plus, I was a stay at home mom until all my kids (I have 3, all adults now.) were in school, and didn't have any experience in the job market.
Anyway, fast forward to 2011. I was at work on snow removal duty. I was shoveling snow and using the snow blower for about 4 hours straight in -10 degree weather. The following day, my upper back was killing me, and I couldn't move my head. Again, another year and a half passes and in 2012, I have a one level c-spine fusion (A walk in the park compared to the lumbar fusion). All went well in that area, but the pain in my upper back (thoracic spine) continued to worsen. Finally, my surgeon, who is convinced that the thoracic pain is muscular, and stemming from the c-spine fusion, sends me for a T-spine M.R.I.. Turns out, I have 5 ruptured discs there, pretty high too, from T5-T10, the worst, which is pushing on the spinal cord, being T6-7. Bottom line, my surgeon says there is no "fix" for this, unlike the lumbar or cervical spine, and that my pain will continue to get worse... How does someone, who is already in so much pain most of the time, wrap their head around that?
I have up days and down days, some better or worse than others. I struggle with the prognosis, but try hard not to focus on it. I don't know how long... days, weeks, or years, I have left before I can no longer get out of bed. For now though, I do what I can (which isn't much) and am doing all I can to stop from falling even deeper into depression (meaning, I'm taking an anti-depressant and I try not to think about it...denial?).
Anyway, I just wanted you to know that I know (and understand) what you're going through. If you can keep your sense of humor it helps, you may have to dig pretty deep to find it, but it's great if you can. Let's face it, who wants to be around a misery guts? You can still make people laugh when you're laying on the couch (might as well laugh than cry).
This is way more typing than I planned, but I've done it now and I'm not going to delete (or edit) it. :)
Hope today is better for you and I'll be watching for your posts. Hang in there.
:)

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Upanddown,
First off, thank you for not deleting your words to me nor editing them!! I appreciate the words you have typed here and sometimes it helps to get these thoughts out and see that someone out there listens..

I've had troubles with my upper spine too and at first the dr was doing injections but then started burning the nerves every two to three months but then I had a very bad experience that went like this: I went in for my nerves to be cauterized as I've done many times before but this time the dr seemed very rushed and the nurse had troubles putting me under for the procedure then as they were burning my nerves in my T-spine I woke up and heard the dr tell his assistant nurse to take over on the last nerve and she did!! As the assistant nurse took over the dr left the room, at this point the nurse started burning the nerve and as she did so I felt the worse pain in the world so I woke again but this time I didn't know where I was nor what was going on so I jumped off the bed ( leads, needles and other items still attached to my back) and pushed the tray over spilling all their things on the floor, I pushed the x-ray machine into the wall and had the handle to the door in my hand before they could stop me!! As I got back into the bed the nurse that was taking care of my blood pressure was crying and shaking and told me how scared that made her and that she had never seen anything like that before!! Then I went home and as the days went by my back hurt more and more under my right shoulder " the spot the nurse cauterized" and as time went by I seen another dr and he told me that the procedure that went wrong destroyed the nerve and damaged the muscle that wraps under my right arm around to my chest!! Years later the dr says that the muscle feels "CRUNCHY" ?? Really? What a way to describe it right? I always feel like its stuck in a spasm all the time but also I have a disc I believe the sticks out just below that spot it's like a disc has been pushed out towards my back and it's trying to push threw the skin but again it's something the drs haven't looked at in a long time! So with all that said, it still kills me but nothing has been done yet along with many other problems!
I know what you mean when you say you don't I ow how many more days! I try so hard to get up daily and do something useful to others so that I don't become a complete dissapoiment to them but its getting harder every day to put myself threw so much just to please others! Whell I guess it pleases me too because I like to feel needed or at least wanted for something!! It's easy for someone to say things like don't get depressed or hang in there! But truly I say from one chronic pain sufferer to another, keep the hope alive! Try to not let this beat you! Gosh those words are very hard to type! I too have fallen to depression as well but refuse to take anything for it so far because I hate taking medication and the fear that those meds will screw up my mind even more lol I am truly scared of what meds might do to me these days and after all I've been threw in my life I'm scared if I took something that messed with my thoughts I might not be strong enough to keep myself alive anymore, its a daily battle as it is now! I find it a little easier to deal with this life talking to people who can relate to a little of what I've been threw or going threw so thank you for your responses to this post, and for sharing parts of your story with me and the others out there! I hope something changes for you and ill pray that it does.. Take care and best wishes to you

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George,
Just read your post and you know what word stuck out? CRUNCHY! That is the same word my Dr. used to describe the knots in my upper back when she was giving me trigger point injections. She was feeling my upper back asking where it hurt, and then said, "Ah, yes, I can feel them, the crunchy bits." The muscles were in spasm so long, that they actually felt 'crunchy' to the touch. (What a coinky dink!)
What's strange is, I asked one of the many Dr.'s I've seen over the past couple of years why he couldn't just burn the nerves, and he looked at me like I was crazy...maybe I did look crazy but that's beside the point.
You definitely sound like you've been put through the ringer. What have you been told as far as prognosis goes? Sounds like you've got a spine like mine...problems all over. I think it might be a bit easier if it was just in one area of the spine, but multiple levels is hard to deal with. If it's not the lumbar hurting, it's the upper back... Have you had an mri of your thoracic?
As I'm typing this, I can just see the bottom few lines of your original post. Your talking about how you were once a proud man. I'm not a man, but I understand pride. Pride kept me working until I couldn't think straight I was in so much pain. Pride stops me from asking for help doing the things I used to do for others that I can't do for myself. My once spotless house is a shambles, I don't answer the door if someone rings the door-bell. I don't go outside the house unless it's to the Dr....the list goes on. But I'm trying, like I said, the anti-depressant is helping, but it doesn't change the fact that this absolutely SUCKS!
I'm rambling on a bit aren't I (I'll blame the meds). ;-)
Well it looks like another day of trying to stay one step ahead of the pain. (Good luck with that right.) All I really want to do is go back to bed, but I'll take the couch instead. Not such a bad trade...it's a big couch.
Oh, what pain meds are you on? Are they helping? What's next on the agenda as far as medical tests/treatment? Are you on SSDI, or are you in the process? (I'm just getting started and only answering one question a week, it might take me a while.)
Hope you're doing OK, and thank you for your posts, I enjoy reading them.
: )

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Upanddown,
Ah yes a prognosis would be so great to have so at least I can put a name on it lol but not really that I can remember.. I know the drs say a lot of things and me being an unschooled country boy doesn't help cause I don't understand their "big words" lol although my normal dr and the hospital I was at last month did say something in regards to the blood clots in my right leg, something like- deep vein trambosea or something or another like that! The dr said the small vein in my right leg " the vein the use for tripe bypass heart surgery" was killing its self off and retracting so when I straighten my leg the vein sticks out the side of my knee and is very tight also feels like it will snap at any point in time! That is very funny about the crunchy thing, heck when the nurse said that to me I asked if she had her other hand in a bag of chips and got confused lol ... I know how hard it is to face the world in our condition but I try to go and get a soda every day in town and stay for as long as I can then come back to bed, I think you should try a personal goal such as getting out to have a coffee or soft drink somewhere and stay till the drink is gone then you can go back home it might help a little with the depression and the feeling alone cause it does with me and I do this every day unless my pain wins then I just sit outside my door for a few moments but I don't let it win more then two days in a row! I don't know but it's always something you could try just a personal set goal to fight this from all angles ya know? As for next hum my surgeon calls me after two long emails I sent him and now want a milogram and MRI done asap and says he is concerned lol ok but not when I called every week though? I don't understand how these drs can just keep making you get more tests and the dr that does these tests says he sees the problem but can't tell you and then your dr doesn't say what it was either!! Errrr makes me so mad <---- ok done ranting lol... Not sure what these next tests will show but I hope for answers finally and hope soon they will look at the other areas of my spine and see what the trouble is there but yet then again maybe I don't want to know lol
Medications that I take are as follows : kadien 30mlg at 7am and again at 7pm its the cheep stuff for morphine and I was taking 50mlg at a time but I told my dr I want off so I had him lower it to the 30s for now and hope to quit taking those by the end of September! I also take loratab 10/500 at 7am and again at 7pm but also one or two during the day if the pain gets bad they say, whell its bad all day and night so ill take one bout mid after noon so about three a day for now I also take ambien 10mlg at night for sleep although even with the sleep aid I'm still up most of the night and that sucks cause I have to just lay there and listen to my fan blowing on me and the radio playing in the background and I just think all my thoughts and try to no let the pain win but it does! And that's why I'm up all night! I have the tens unit but don't use it much I found that a hot bath helps more the the tens unit.. A friend gave me a couple of her oxycottens to try and they help a little more with all the other stuff I take..
Geeze don't worry at all about long posts or rambling on cause I cannot believe how much I have said in all my posts lol not bad for a guy that can't spell and on his iPhone thank god for autocorrect hahaha lol like I said, it helps to get the words from my thoughts to somewhere that someone will read them with care and understanding unlike when I talk to those around me who have no clue nor does it seem to weigh on their minds at all.
So how about you? The drs are just going to let you suffer and just tell you they can't do anything to help with the T spine?? How does that work? There has to be something they can do to atleast try and help you!! Oh these drs make me so mad sometimes!! Let me know what your next steps are? I hope for the best for you and keep writing cause maybe that will help in the long run take care and i look forward to your next post thank you so much!!

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Oh and after looking this over again, I've been fighting disability for a few years now so PLEASE get a lawyer ASAP I tried to do it myself so it made things worse and now with my lawyer I finally got a hearing date but had to move it for a few more months because of them not having all my records so in October I will go to court and fight more!! I have hopes of winning but we will see! I see that it's easy for drunks and addicts to get it handed to them but not for those of us that worked hard to earn it!! I hope it goes well for you, I on the other hand am 34 years old and that's what they keep saying is because of my age I can be retrained even though my drs say I cannot so I guess we will see good luck and prayers are with you

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It's not very often that I sleep long enough to dream but last night I had a strange real life dream!! I wonder if anyone else has dreamt about their Hardwere like this? Because I've had a dream like this righ after they put the Charite disc in my spine and now this one after the rods and screws and bone graft..
It goes like this: I was dreaming and in my dream I was feeling my skin where the disc and rods and screws are at but it was strange because my skin felt thin and I could feel the rods and screws with my fingertips and as I rubbed the lower area of them it sent pains down my legs and threw my back just like the pains I feel every day but in my dream it was real!! It felt so real!! When I was talking to my wife this morning about it I told her I didn't know if it was a dream or not because of how real it felt to me!! I still can feel it in my mind like it was real and it trips me out jus like the dreams I've had about the disc being put in me and in those dreams it all feels so real as well and it goes like this: in my dreams of the disc being put in I can feel the drs taking pliers and grabbing pieces of my disc and pealing them out ripping the little tissue apart to clear the space for the metal disc that will soon be implanted into my spine and I feel what seems to be a hammer beating on my spine over and over again causing so much pain, I don't know if that is them putting the disc in or taking the old one out but during all this I am crying and begging the drs to please stop but they don't hear me nor do they stop!! So I guess that would be more of a nightmare then a dream? But the dream about touching the rods and screws is the first time I have had that one so I wonder if there is a connection here? Is it possible that someone can remember their surgery?
It's scary to think that maybe my dream is not a dream, but a memory of what I went threw and the pain I endured during the procedure and how many more people has this same thing happen to them too?
Today it rains outside and as I stated above, the rain causes so much more pain so I stay in bed most of the time when the weather turns bad but I've got so much to do before it starts to snow here to prepare for the winter that the pain caused by the weather is stopping me from doing and it sucks, I guess at some point my pride will have to be put behind me and get some sort of help for the winter chores because I have too much on all ten of my kids to throw in my workload on them too.. Strength comes and goes these days where some days I fight threw it all day to get a little done but more then often lately my fight is a loosing one and pain wins!! Oh the weather I once loved is now my worst hate!!
So anyways, if anyone has had dreams about things like that please let me know so I know if its just me or not thank you and I welcome all thoughts here!! Take care

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Got papers in the mail today from my surgeon, they are for more tests on my lower spine! I am not sure why I didn't get a referral to a dr but it seems I have to find my own? Ok I can handle this as long as I can get some sort of answer to what has gone wrong! I got out of my house today finally after three long days in bed and it was so nice but after the first five minutes I was ready to be back in my bed but roughed it for a few hours so I'm happy I did.. Another day gone full of pain and lost hopes but I guess we will see what tomorrow brings!

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Another day gone, lost to this cursed world full of pain! Simple things in this life I've taken for granted that have been ripped from my life like putting bags in the car or walking threw a store or heck just ridding in the car for more then a minute causes so much pain I lost the will to overcome and move forward and the ability to ignore the pain long enough to smile for those around me I cannot hide anymore its too unbearable to try!! Another soul lost another life dying from unseen pain!! Hopeless......

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Hello all,
I'm tired!! Sick of so much these days... I try to be alive and get out and do things but its so hard and I feel I am just not good enough for anyone anymore, I feel I have let everyone down by my pain controlling me and the things I do or don't do, controlling the outcome of what I try to do and it just doesn't get done the same anymore nomatter how hard I try!! I have so many little eyes looking at me every day, watching my every move and I am letting them down, my own children look at me with sadness in their little eyes!! I don't want to feel this hurt or see their pain because of me!! Not the worst is yet to come all because some jerk in an office sitting in their fancy chair and has never felt pain before says according to my half written un updated file that he/she reads decides I'm not disabled so they are willing to make me and my family suffer with no income and with the never ending fight to get what I've payed in and what I am rightfully due owed, I am losing my fight at home to keep my house and bills payed for my children and my wife and it has become too much stress on my wife to try and make two incomes so that our family will survive till the SSI gets approved threw a court hearing! I can't believe what my life has turned into!! I'm lost!! I cannot support my own kids anymore and that kills me, I have tried so hard to a good dad and a good husband and friend to all, I give willingly to anyone in need even if its all I have nomatter what and I try to do only good things in this world and I end up losing again?!?!! Why? What did I do so wrong to deserve all this?!?! Why can't I just get a little help with enough money to keep the roof over my kids head and the electricity on?!? That's all I want is to have that little check SSI is supposed to give me so I can atleast pay my bills for my kids heck I am not asking them to make me rich or to be able to drive fancy cars or anything like that I wouldn't even ask for the SSI if it weren't for me having kids that need it to survive oh this sucks!! I do know this much, the kids would get survivers benefits if I was gone! But yet then again, if I was gone then my kids would be split up and not have anyone anymore and that scares me to think what would happen to them or how it would ruin their lives gosh I am in such a bad place in my own heart and mind right now I just can't handle all this, whell I say that but I end up dealing with even more each time and I don't know how but I do!! I know God is watching over me I just hope he hears my prayers and gives me a miracle soon because I'm am becoming too weak and stressed!! Geez I'm sorry to whoever reads this but it is what it is in my own words!!

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So, I am going to try and keep writing here so that my story is written for all to see and besides, it makes me feel a little better knowing if someone reads this that it might help them or someone they know!
Anyways, I saw my PCP yesterday for my monthly refill of my morphine and other meds I'm on and he asks me how I was doing with quitting the morphine because it is getting hard on him to keep giving it to me? I just told him to keep it!! I don't care what you do anymore nor do I care what medications you give or take away from me, I said to him, I'm too tired to deal with anything anymore and drained both mentally and physically and I cannot deal with drs that don't have the time to have compassion for the patient and try to help!! Boy I think I struck a nerve!! He proceeded to look me over carefully ( something he hadn't done in a long time) and then said my left knee and joint are floating and also found it strange that my left leg I'd darker in color then my right but he said that the blood flow is normal in both and everything looks ok to him but he doesn't understand why it's showing a darker color. So I told him that maybe its my invisible pain trying to prove its really there lol but he then replied that maybe it is and maybe because of the amout of pain I'm feeling in that leg that it is showing like some arthritis does and wants to have it looked at... WOW !! Really??? Now you do? Ok! Then he looks at me and says, you are only 34 years old and a very strong, healthy Manx other then these things that are going on with you and the pain you are going threw can kill even the strongest of men so what I want to do is try you on some depression medications until the surgeon can fix what's causing all this pain! Again WOW!! Where did this guy come from? He hasn't acted like he really cared in a long time but now this and says he is worried about me? I feel good about my visit this time and now I guess I might try this new med when I get it but I have a fear of what they might do to me or my thoughts or the way I act but I guess we will see!!
On a different note:
I've been sleeping threw the night these last 5 or 6 days now with out me taking anything or anything new I just sleep and then when I take my morning nap I sleep hard so hard I've missed phone calls and things and also some thing I do at night and stuff I can't remember so I guess it's all catching up with me all this up all the time with pain and not sleeping may have finally taken its toll on my body and mind and even though I do sleep these last few days now I'm still very tired during the day I feel as though if left alone I could sleep a week right on threw and that is strange for me cause I have never been much of a sleeper.. Who' knows? But a few days from now ill get that new med filled and start it along with what I'm already taking and maybe things will change and then next week or two I might be able to afford to get all these tests done for my drs so they can see what's going wrong and maybe fix it I hope!! Ok I'm done for today I hope everyone else has a good day with little to no pain and know that I keep all in my prayers

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Hi George,
An anti-depressant wont make things any less difficult, but may it may help you to cope a little better. I went back on one too, when I reached a point I just couldn't cope. It's only helping a little, but it is helping.
Sometimes, we just need the help. There's no doubt that this is emotionally exhausting. Hope it works for you. :)

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Upanddown,
Thank you so much for your response it helps a lot, I have been prescribed " Celexa" has anyone had experience with this medication? I started it this evening and the dr said it will take a few weeks to start helping me so we will see I guess lol I just worry about side-affects and things like that? Also I found out today as I was trying to pick up my morphine that medical changed things up and nolonger covers it so now I have to get my dr to rewrite the prescription to something that is covered! Now getting it rewrote is not a problem at all its the fact that I have to drive over 200 miles to pick it up and take it in! I already make that trip once a month and just did last week so now I have to do it again because the prescription will sit on their desk for ten days then go out with the rest of their mail and someday it will get to me so that won't work at sense I have only enough medication to last the next few days and then I'm out again and that seems to happen quite often these days! I'm hoping things get better soon cause this is just too much to deal with all the time!!
Anyways, how are things with you Upanddown? I hope things are working out better these days for you and you are finding peace inside and days with little pain... Thank you

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I have some new issues coming in with my feet lately... For the last few weeks my big toe huts so bad after my feet quit being numb, it feels like I've stubbed my big toes on concrete blocks and it doesn't go away till my feet go numb again.. Also my left foot hurts in the arch but I'm thinking that maybe its because of my limping with all the troubles I have with my left leg... My right knee feels like its getting worse as the days go by although I'm thinking that maybe some of these things I am feeling might have to do with the weather turning and its getting colder and started raining today so who knows? I hope to get these appoiments taken care of in the next week or so that way the dr can finally tell me something here soon about my spine and legs, see if there is a break in the fusion or a new level blown out or whatever else could be possibly wrong..
Hope all is well with everyone else take care and all comments are welcomed here thank you!!

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Medical doesn't cover my morphine capsules now? Geez! So now I'm being switched to tablets? I have never taken tablets so wonder if there is going to be a difference in how they work for me?
Still hurting bad and now I have to wait for a TAR threw medical to have these next set of tests done so waiting for an approval sucks!! Hope it goes threw and they see what's going on with my spine finally!!

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They've got you playing the, 'hurry up and wait' game huh? I never have liked that game. Still, we have to play, because there's a small chance there's relief at the end of it. (I'm not getting the noise makers and party hats out just yet though.)
Hope you do OK on the tablets. You should get very similar, if not the same results. How's the antidepressant working? Is it helping at all?
Sorry for the short post, but I'm so tired I can't see straight.
Have a good weekend. :)

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Yup the hurry up and wait sucks and brings a little false hope here and there... No way of knowing what will become of the next appointments brings fear to me and feeling like I can't take more but know I have to sucks although it has helped me a lot finally reaching out and finding others that understand!!
The antidepressant meds seem to not have a great deal of change but they have been helping for sure with mood and stuff so that's a good thing... The change in my morphine seems to have the same affects but I might be having some different side affects now but can't be sure just yet...
Thank you for your response to my posts it sure has been nice to chat here and there with someone who understands thank you

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Hi George,
I do not frequent this site but was passing through and saw your post. I have scoliosis. I endured surgery at 15 and had a harrington rod placed. At 46 my lordosis collapsed and I had surgery again. This time they pulled the rod and replaced it with titanium, restored my lordosis, replaced spacers, did oestotomies and a lamendectomy. It was a two day surgery. After that I was still leaning forward so I had surgery again this past January for yet another oestotomy and lamendectomy. Pain? oh yes, a whole lot of it BUT, now on a daily basis, I am pain free. How? First of all, I did my homework, researched and found a surgeon who specialized in spinal deformity. Second, I got myself off of all meds so that I could really evaluate what exactly I needed. (I locked myself in my room for two weeks to rid myself of oxy). I sought a pain management specialist. I had surgery, recovered with meds then got off of them and went to PT. I learned the exercise and do them at home nightly and I walk, walk and walk. Don't get me wrong, I have bad days and do have meds in case I need them but I rarely, need them. FIND the right doctor for your needs and pray. Your back is so screwed up now you need a spinal deformity specialist pronto. I have been where you are and you can get better. You can.!

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Redmarmie
Thank you so much for sharing and responding to my post! Thank you for that information it does help and I will do some research as to what you said about the specialist... Thank you so much

As for me I've been hanging in on the end of the rope for sure! Pain is so much worse with cold weather and as I think I can't take much more then I get more so what do you do? I am glad I find the power within myself to continue to make it threw each day! I am still waiting for these tests to be scheduled and waiting for drs to get off their butts and figure out what is going on with me before its too late!! I hope and pray it will be soon and something will be done to ease this pain just a little! Thank y'all for reading and taking time out of your day to respond to me

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Hi George:

I probably haven't been on this site for 1/12-2 years. I saw your posts and it really touched me. I have severe pain from a spinal cord tumor I had about 25 years ago. I found out I have a cyst (which isn't unusual after surgery on your spine). It causes pain, numbness, etc., etc. I am on disability and I'm really hoping yours comes through. I am on generic duladid (spelling?).

Just wanted you to know that there are others in pain and I'm going to say something you're probably not going to like, but keep in mind I have bad pain some days also. Try to keep a positive attitude. I know, I know. It's very difficult to do in this situation. But I've noticed when I'm at a good place mentally the pain isn't quite as severe.

I'm crossing my fingers for you. Please take care.

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Pam,
Thank you for your reply to my post and feeling touched by what I have written here! I know, I'm trying to keep it together and stay positive about things but some days seem so much harder then others and on my down days, my past haunts me with memories of so many bad things I've gone threw and leaves me with thoughts of why? Why me? But I've been doing a little better lately with that but still hurting more and more each day and doing much less also I've been so tired and having migraines from the moment I wake till I sleep again! Thank you for leaving your comment and giving me something to talk about it means a lot to me and I hope you too can get some relief from your pains and something gets done to help! I'm my thoughts and prayers

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Well, I got a few phone calls today finally from drs offices! I will be going to get the epadural steroid injections into the lower spine starting Monday October 7th and then I will get a myelogram done on the 15th but the office that set it up said that due to my spine and physical condition, that I will be starting it at 8am and I won't be done till after 2pm? Really? Seems like a really long time to me! Then they say I have to stay the night because I live over 3 hours away and cannot travel after so I need to stay! Eerrrr!! Oh well at least it will be done and maybe finally give an answer as to what is going on with me! I hope!! I need this to be the big answer I've been desperately needing and waiting for! Also I go to court for my SSDI on the 24th too so that leaves me completely stressed out and scared big time! I've been trying to get this for 5 years now but this is the first time it's going to court and first time having a Lawyer so I will see how this will go but I feel with my run of luck I will lose! Maybe this will be my month to win all the way around?!?!

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Ok, so I got called today from the dr who was supposed to do the steroids injections and they are going to reschedule my appointment due to the fact that he has been called into surgery that day so who knows? Maybe sometime soon I will get all this stuff done and over with!!
I'm still having more new issues showing up daily and still scared of what's becoming of my body! I have had a few black spots show up on my left leg and then a couple hours later they look like old bruises and are the size of a dime, also hurt to the touch! My legs are so weak and full of pain and numbness and I have spots here and there that are very painful to the touch along with my big toes still feeling like they are froze or going to explode at any moment!
Ok I'm done ranting again and hope y'all are doing well and having some days without pain or at least lower then before!

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George,

Your story is heartbreaking. The level of strength and compassion you have in the face of adversity is really morale-boosting for me. I feel like if other people can go through all that and still have some of their fighting spirit left, there's absolutely no reason I shouldn't as well. So thanks to you for that, because that's been an issue I've been struggling with here lately.

About the Celexa: I've been on and off antidepressants since I was around 11 years old, and Celexa is by far the one with which I've had the best results every time. I've been on and off it probably four or five times over the years (lapses in insurance, moving, stuff like that) and every time it has served me better than anything else.
One thing you might ask your PCP about is adding amitriptyline to your med regimen. I have been on it for some time now for help with the fibromyalgia, but it's also sometimes helpful for other chronic pain and also helps a lot of people with sleep and is sometimes prescribed solely for insomnia. I'm on a pretty high dose (75mg/day) compared to what they generally use for depression, but it's the first medication that actually made me feel good for a while before my body got used to it. I also have a problem with being very medication tolerant, and I understand how hard it is and how much it looks like "pill-seeking" behavior. But one thing I do with each new doctor, if I can, is tell them on the first visit that pain meds are a last resort for me (I know you're beyond this and your pain level is great enough that you really need them, but even saying that you're open to other treatment options like stretches or physical therapy, even if you're not, sometimes helps them to think it's not just pill-seeking behavior). I don't know if you can take anything you can use from that, but it's just something I've found helpful and thought I would share. I'm also on Gabapentin 800mg 3x/daily and find it really helps with the nerve pain, but you said you think you've had a bad experience with it. Would you be willing to give it another shot? It might just help.
Cymbalta really sucked for me, it didn't help and I got bad tremors which freaked me the hell out, but I've found Savella to be EXTREMELY helpful too, with nerve pain (lol can you tell that's my main issue?) Again, it depends on the person, and I've known people who had bad luck with it, but I've also known some for whom it was a godsend, like me. The bad thing is that it is very cost prohibitive, and for that reason, I can't get it right now. But when I had MIA in California my PCP who was actually just an NP (but did the best she could with the MIA restrictions) got it approved for me. It's around $1200/month, so you'd probably have to see if you could get it approved by your insurance company. I have an appointment Tuesday to look into getting some low-income assistance with medications, so hopefully I will be able to get back on it. Lyrica is another SNRI (these medications change the way the brain interprets pain instead of just dulling the nervous system), so that may be something you'd be interested in as well.

This is long-winded, but I hope you can take something helpful out of my experiences. I have been luckier than I ever thought to have physicians who actually believe me when I tell them I'm in pain, and I haven't even been doing this very long. It must be so so frustrating to have people not believe you or not take your pain seriously. I know having an invisible disease is hell; people think you're just lazy or don't want to work, when most of us would give anything to trade just a single day with someone who has a "normal" life.

I hope your tests went well, and I will keep you in my thoughts. Remember there are people rooting for you, and as cheesy as it sounds, it's really not "over" until YOU DECIDE it's over. I have found that one of my biggest issues has been having to completely change the way I view success and personal value. I'm not even close, but I've realized that doing that is the only way I'm going to get through this somewhat in tact with my self-esteem and the only way I'm going to feel enough value to keep going. It's so, so hard when society tells us what success looks like, and we grow up with that and then suddenly find that we will likely never be that idea of "success" that other people have.

My advice? Find one thing every day that you like about yourself. Write them down. Find one good thing you did for someone (as it seems to be this is the thing you really value about yourself, which is so awesome). Your thing for today can be that you responded to my thread and gave me a little hope to keep going, and you made me realize that life could be so much worse. So I sincerely thank you for that. I think the amount of strength you've had through all of this is amazing. So few have that trait, and it seems only the ones who are tested in life ever actually come to see who they really are.

Sorry for the super long post. But hang in there, good buddy. :) You're amazing.

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Okay, so I'm a little teary-eyed and nostalgic from withdrawal since I haven't had to take as much pain medication today as I usually do, so please bear with me. It's also gonna get a little deep.

I reminded myself to come back and add this after I re-read a few things. You asked in an earlier post, "why me?" It's something I ask myself every day, and I've come up with the only answer that makes me feel better about myself than worse: Because I can fucking take it.

I don't know what your beliefs are, spiritual or otherwise, and I don't think I really have any true beliefs, per se, but it does make a lot of sense to me that there's got to be this balance in the universe in order to keep everything from going nuts. There has to be just enough light and just enough dark, and enough protons and neutrons and photons, just enough birth and death, and just enough suffering and joy.
I also believe that "The Universe" (some people call it God or whatever, but for this purpose I'm just going to say that it's probably the same idea) has different parts and different things where stuff can happen to balance out other stuff. Like, in one galaxy all these stars are being born and over here all these stars are dying, and it doesn't just happen on a grand scale like that, it happens right down to solar systems and planets and governments and families and ants and microbes. And I don't think it ever loads something on any entity or being that that being can't handle.

In our case, this is true with us: There has to be a balance of suffering and joy, and some people can't handle suffering and some people probably can't handle joy. So, unfortunately, those of us that are strong enough to handle suffering get stuck with it, because others just can't hack it.

So, that's my spiritual ramble, and... yeah. I hope maybe even just believing in a bigger reason, be it spiritual or scientific or religious or whatever, can help you deal with what's going on.

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