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    Old 05-25-2013, 09:10 AM   #1
    bellakinns
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    Question Failed surgery twice HELP

    Aug 2011 I was fused L4L5 L5 S1 did OK for 6 months then started hurting numbness spasms and got worse worse, jump to Feb 21, 2013 I go in spinal fusion revision remove all hardware refuse L5S1 only part didn't fuse and also fuse L3L4 while there.
    I awoke and cant tell you anything about most of the hospital stay march is nothing to me.I do know i bleed out next day refused with own blood 2 days post op 2 blood transfusions and also slurred speech stuttering and short term memory loss systolic number never above 60 had exema rash different areas of body. 5 days in hospital discharged to inpatient rehab discharged 3 days later.'
    Surgeon said earlier this month he knew it wasn't going to work wants to go through abdomen fuse it that way. still have nuero issues seeing a neurologist.
    PAIN the PAIN is 100 times worse then before did I mention he disabled me 100% i lose my medical coverage Sept 2013.
    I don't sleep eat nothing I hurt only pain med on is Vicodin 7.5
    Surgeon wants second opinion from who he picks
    Please help me I am scared and only know He isn't ever touching me again.
    i could tell you more but that's about it in a nut shell
    Im lost not sure what to do where to go
    Thank you

     
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    Old 05-25-2013, 10:38 AM   #2
    teteri66
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    Re: Failed surgery twice HELP

    Welcome to the board. I'm sorry you are having such a rough time.
    I couldn't tell from the post what happened post-surgery. Do you know?
    Is that why you are still in so much pain? Did the revision not fuse?

    I would suggest you get opinions from several different surgeons, both orthopedic spine surgeons and neurosurgeons before agreeing to any more surgery. It probably doesn't sound possible to you, but further surgery could actually make things worse....

     
    Old 05-25-2013, 03:47 PM   #3
    gmak
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    Re: Failed surgery twice HELP

    Dear bella, Im so sorry that this is happening to you! You poor thing! I know pain from failed lumbar surgery 4 but not fusions but i just want you to know i understand constant severe pain. Is there another dr that you trust like a pcp to help you figure out the next best step? Do you have the freedom with your insurance plan & also have someone to help you go to a spine only specialist like a spinal neurosurgeon or an orthopedic surgeon that only does spine surgery? Also, do you have a recent MRI disc & report that a new NS or spine orthopedic could see? Spine specialists drs like a spine NS or a spine orthopedic are educated & trained in the physiology, mechanics, disorders, injuries & surgery of the spinal column & the nerves & spinal cord. Neurologists are trained in diseases of the nervous system. If not too nosy, why are you seeing a neurologist & what kind of dr does your dr want you to see as a second opinion?

    Last edited by gmak; 05-25-2013 at 04:09 PM. Reason: wording

     
    Old 05-25-2013, 09:38 PM   #4
    bellakinns
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    Post Re: Failed surgery twice HELP

    Im sorry the first fusion in 2011 took except for L5S1
    so the surgery Feb 21 2013 failed when refused at L5S1
    first fusion i had hardware all the way. this time they removed it all ( and lost it) for over 2 weeks, now i only have hardware at L5S1 none at L3L4 which he just fused, not sure exactly why L5S1 failed both times its been fused.
    My Diagnoses are as follows:
    Lumbar Radiculopathy
    Post L4L5 laminectomy revision, laminectomy of L3 and L3S1
    postoperative anemia due to blood loss from surgery ( 3 transfusions)
    chronic pain syndrome
    postoperative encephalopathy
    degenerative joint disease
    L5S1 radiculopathy secondary to femoral stenosis
    degenerative disc disease
    pseudoarthrosis at L5S1

    I'm seeing neurologist due to waking up after surgery I had and still have slurred / stuttering speech
    memory loss
    vision troubles
    headaches without reason
    to try and see if I had a Stroke or what happened i wasn't like this before.
    yes i can go get my own opinion its just hard with the copay's but I am working on it

    I am on a limited time frame come sept 1 2013 no more medical insurance but I need to know what happened to me.and surgery scares me badly after this last one. I lost 6 weeks of my life i have tiny pieces of it only.
    plus i can get an opinion, the surgeon wants his "friend" another surgeon to do a second opinion that's fine ill still get my own.
    I can now feel the screws moving when I walk this happened before also so for now I just do my best to go on and ignore the pain as much as possible but its getting harder to do.
    I also might be looking for a lawyer after i get the nuero results.
    I lost my ability to work, i am losing my car cant afford it, having to live with my daughter till i can afford my own place but im still not allowed to do a lot of things, Im NOT me anymore and that's not right.

    Thank you for posting to me and any other suggestions you might have id appreciate very much

     
    Old 05-26-2013, 06:51 AM   #5
    gmak
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    Re: Failed surgery twice HELP

    Dear bella, Im so sorry! Wow, you have really been through it! The surgeon wont tell you what happened or are they still trying to figure it out? I lost alot of my "old" self too but i am not sick anymore, i can relate bc i had to leave my profession, cant "go" all that much, but i have never had neurological brain symptoms, are you getting better slowly like day by day? I have alot wrong on my MRI also but have to live with the pain & symptoms too, i have arachnoiditis so its best for me if i have no more surgeries, however if i were you I would want to know from a spine specialist if it is ok structurally to live unfused because L5-S1 carries alot of body weight burden && movement workload but if i had to have surgery again I would be so very careful in choosing the right dr to do it. I realize your limitations in the time limit & cost, do you have a dr that you trust, really trust that could help you in finding a spinal neurosurgeon or ortho? I have a gastro dr who has helped me so many times when i was sick or hurting & he would admit me to hospital & call in every kind of specialist that i needed, it was the answer for me & that is how i found the pain dr i have had for 13 years, he is a physical medicine & rehab dr, a physiatrist & he has restored me to a functioning person again, as far as i understand their role in medicine this is what they do they work to restore function using everything at their disposal to help the patient function to the highest level that can be achieved using meds, PT, braces, referrals to speech pathologist etc. He sees stroke victims, joint replacement patients, back patients basically anyone that needs function restored to their life & if i were you i would ask my gp if seeing a physiatrist or PM&R dr would possibly help. I hope that you get better & on the road to recovery soon, let us know how you progress & we will be here if you need a listening ear.

     
    Old 05-26-2013, 07:51 AM   #6
    Begora
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    Re: Failed surgery twice HELP

    Bella,
    You are an inspiration. Keep up the good fight! I would make your doc accountable. Sometimes our bodies don't cooperate, I am learning... Mine is overcompensating with scar tissue following micro-d last Nov. I would benefit from more surgery and was canceled night before! I was very upset. JUST FIX ME! I understand living with pain. Don't give in!!! You will be in my prayers! Listen to the veterans on this board--they are very positive and helpful. God Bless!

     
    Old 05-26-2013, 06:24 PM   #7
    bellakinns
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    Re: Failed surgery twice HELP

    Thank you so much for just listening to me, My family knows I hurt and I know they are tired of hearing it, Its caused Marital problems HUGE ones, my adult children have said they cant take seeing me in pain so much. I try so very much not to say that I hurt but just how move or not move or my attitude tells a lot but still until one has been there they really cant understand they feel helpless more then I do i am sure.
    But worse is the classification others put on me " Drug seeker is" I wouldn't wish this pain on ANYONE!! not even the ex!LOL

    I have a case management nurse who helps me get into appointments like the neurologist I am seeing is NOT affiliated with anyone she mostly does work for the military people in town. I hear shes the best there is.I am learning to slow down when I speak if I get mad or upset then the faster I speak the worse I get i cant be understood. the short term memory loss is not improving at all. I hate it I hate that I have to write notes to myself its NOT me.

    Yes this being L5S1 has to be stabilized before anything else, I also now have problems in the L1 T12 also have issues happening in the C spine! BUT I was told til the Ls are stable nothing else can be done and I don't know if it ever will be stable. So daily I hope for a little improvement its not happening but I have to tell myself in the end there's got to be good out of this.
    One day I made the statement I understand why people do what they do cause they cant take the pain anymore scared everyone but I swear I understand it.
    I really don't know what to do about the pain I don't want to be drugged out of my mind and I cant afford the medicine once I lose my insurance. so I feel like all I can do is try to move on think that one day it will be OK.
    and try my best NOT to become depressed. Yes I have anxiety who wouldn't but till you walk in someone else shoes don't judge is how I feel especially doctors that think they know better then I do about my own body
    I also want answers like yesterday I hate waiting not knowing.waiting cause someone knows what happened and I deserve to know.
    so Im also going to start looking at attorneys to see who would be the best for me, cause someone did something to me.

    I thank you for listening I find it isn't easy no one wants to keep hearing about it, If you know what I mean, I am lucky enough to have short term disability and long term through my employer though no insurance at least Ill have a little income to care for myself then its to the free clinics I guess after insurance ends. but I try not to worry about it they say I have enough stress and stress slows down healing well fix me tell t=me the truth and maybe I wont stress as much.

    I will update here as soon as I hear anything else.
    it would be so easy to say to hell with it and stay in bed pull the covers up and sleep till I couldn't hide from it and believe me a couple times I have spent the entire weekend in bed just resting but I wont let it win.
    Thanks again for listening and for being here
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    Old 05-26-2013, 06:46 PM   #8
    Lotty667
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    Re: Failed surgery twice HELP

    You poor dear. I am so sorry, this breaks my heart for you. Everyone here is great and gave wonderful advise, but from what you are saying you are seriously under medicated right now. I am not suggesting this for the long run, but your doctor needs to help you get your pain under control. I know how hard it is to hurt 24/7 with no relief. With all the limitations and the financial concerns and then the pain on top. I have been there as well. I lost everything cause it was just me and three kids. I finally found a kind, caring doctor to help me and I put it all back together. Have a lot less now but my kids are grown. Just one left in the nest and she'll be off soon.

    I know you don't want to feel drugged,but it sounds like somewhat of an increase is in order until you can make some decisions. Pain is real and debilitating.

    You will be in my prayers. Please get YOUR OWN second opinions.

    Take care.

    Last edited by Administrator; 05-27-2013 at 02:57 AM.

     
    Old 05-27-2013, 09:11 AM   #9
    teteri66
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    Re: Failed surgery twice HELP

    You mentioned wanting to find out what happened during surgery and mentioned "stroke." I'm far from an expert on the problems that can arise during surgery...but I think you'll find, if you read up on postoperative encephalopathy that this is what has caused the loss of memory, speech difficulties, etc. In many ways it sounds similar to the symptoms of stroke. Why it happened, I couldn't guess.

    If you haven't done so, you should request a copy of the operating room notes written by the surgeon. This may provide some clues and give you a point where you can begin a discussion with the surgeon.

    I would think that having had postoperative encephalopathy, future surgeries may be equally risky. I'm afraid I don't know enough about postoperative encephalopathy to be able to provide any further information.

     
    Old 05-28-2013, 10:41 AM   #10
    bellakinns
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    Re: Failed surgery twice HELP

    I wish I had a doctor that I trusted to go to and just hope they could help me or lead me to the right direction to get the help I need.
    The pain yes of course its taking me over Its getting harder to get out of bed to do anything.
    I lost my family in many ways and worry month to month if I will have a roof over my head. Im trying to deal with all this alone. I bought a car in Dec due to this was to be an easy surgery, I had planned on returning to work NOT!
    so now Im trying to deal with the fiance company like an adult i have explained all that has happened but they are bullying me and all I hear is NO stress Yea right.
    Ok I have decided to go see a pain doctor one I have I have inquires on, I must do something I am NOT superwoman no matter how bad I want to be.
    also Im going to stop trying to figure out what happened to me before I get all the test results in. I think for the first time in my life Ill put ME #1, never done it before but i have to or I know I wont make it, its all getting to me more then I want to admit.
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    Old 05-28-2013, 12:48 PM   #11
    Gerrij
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    Re: Failed surgery twice HELP

    Bella,
    My surgery was in April, and my surgeon went in front and back. My research shows that for theS1/L5 this is best approach for best long term out come. I work in a hospital, so I was able to discuss with many surgeons/ radiologist before I had my surgery. I also had a basket put in when the disc was taken out, filled with my own bone and bone marrow. I am so sorry you are in such pain, I know how that is. Everyone seems to want non- invasive, or minimally invasive surgery, yet to get at the spine safely and to do the nerve manipulation the surgeon needs ample room. In addition, my neurosurgeon had electrodes in my brain and at various points on my legs while I was under to assure that the nerves were given plenty of from and there was no damage. I feel so much better, minimal pain and no more back pain at all. Good luck to you let me know if you have any questions.

     
    Old 05-28-2013, 02:03 PM   #12
    bellakinns
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    Re: Failed surgery twice HELP

    Thank you for sharing a Positive outcome to me
    but right now I feel so lost confused scared and abused.
    I know something went wrong some time either during surgery or after for I am not me anymore part of me is gone and I am so scared that NOONE will ever want to fix me if possible for I wont let him touch me again.
    They say until L5S1 us stable I am vulnerable and I'm so afraid that
    Ill end up in a wheelchair due to my T's and C spine is already showing fast deterioration and then what happens to me? I don't have "family" that will or would care for me, I have a husband ( been separated since 2 weeks before surgery in 2011) he only is around out of guilt but he gets me to the dr and the store but besides that nothing else.
    I have children that wont/ cant/ aren't able to help care for me. The unknown is getting harder on me I finally told my "family" I am not as strong as I act or want to be that I really don't know how much more I cant take.
    so I found a pain doctor that's willing to see and treat me as soon as I have the $100.00 to go see him Im hoping the week after I pay rent Ill be able to cause its getting harder to get up to make myself .
    Finally I can admit I HURT!!!! and Im tired of it, plus im getting sad that's NOT good .
    hopefully Ill get my neurological results next week then Ill know whats next.

    Thank you all for being here for listening and giving me your opinion i don't feel so alone anymore
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    Old 05-28-2013, 05:16 PM   #13
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    Re: Failed surgery twice HELP

    Might I suggest speaking to a Patient Advocate or Social Worker, both about your concerns over what happened during your previous surgery and your concerns about the future.

    I don't know your financial situation (and of course it is not my business), but you sound like me. Everything has to be budgeted and planned in advance. But there may be programs that can help you so that you don't have to be dependent on the "guilt-ridden" ex.

    I really feel for your situation and hope that in the end it will all work out for you and that you can find some relief and peace.

    Take care.

     
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    Old 05-28-2013, 05:44 PM   #14
    bellakinns
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    Re: Failed surgery twice HELP

    Well now to try and just breath a little bit, yes i have to account for every penny and I have contacted every agency I thought of that they thought of and so on and so on, I guess time will tell and I also applied for the HandiVanbus its like the big buses but picks you up takes you to appointments and returns you home it costs money but it will give me some independence so many life changes in the last two years something I never imagined in my worse nightmare.did I mention the reason I left my husband 2 weeks prior to surgery in 2011 is he had an affair? he ripped my world apart and shredded spit on it burned it to the ground the only live i had known for many years.
    I have struggled the past two years to make it and I did I even put this surgery off 7 months to support my daughter her husband and my unborn grandchild she was an extremely high risk pregnancy I worked daily come home in tears right to bed till my daughter gave me a grandson and then three months later C-section she could work and I planned this surgery. Now let me tell you after all that Not 1 of my family offered to help me I had to get home health and then ( i live with my youngest) they just came during the day to check on me I was left alone for 3-4 days and nights noone called noone checked on me and I took care of me the best I could. The oldest moved out before my surgery, my youngest took care of me 100 % the first time in 2011, I wanted her to have a life shes 22, Little did i know that the complications didn't end when i left the hospital. ended up being dropped off at the ER thought I had blood clots in my legs the swelling and unable to get out of bed, told someone would get me I felt so loved! then sent to the hospital another time to get my pain meds straightened OOOPS... Nope was being sent to a detox hospital 3 1/2 weeks after surgery Big mix up there,

    So then I took myself off all pain meds to prove my speech and memory issues weren't due to narcotics. i detoxed alone that was fun.

    Now here I sit trying so hard to NOT become depressed, to think there has to be something good come out from all this.that this isn't for nothing.
    but its getting harder everyday to get up and keep fighting. so one day one thing at a time hope pay rent then next week have the money to see the neurologist and the pain doctor.. if not then the week after i hope.

    so see i been to hell and back a little bit in the past two years..
    but one thing i am NOT is a quitter! never have been never will be.
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    Old 05-28-2013, 07:45 PM   #15
    Lotty667
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    Re: Failed surgery twice HELP

    Wow you have really been through the mill, haven't you? I am so terribly sorry that you have to go through all this without more support from the children you birthed and raised.

    If you can afford the transportation, that sounds like it will help the independence issue. I wish I could think of other places you could get low cost/free assistance with some of your other needs.

    I commend you on your NO Quitter stance. Sometimes our innate stubbornness will help us push through.

    I will keep you in my thoughts and prayers and hope that the pain doc and/or neuro doc can help. Take care.

     
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