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wife cant handle it, no one has any answers...need help please.

Aaron J.AAaron J. Posts: 5
edited 06/11/2012 - 9:00 AM in Chronic Pain
my wife out of no where ended up with 2 herniated disks, spinal stenosis and arthritis in her lower back. We decided to have surgery and she had a spinal fusion on 3 levels where the herniated disks were. She contracted MRSA from the equipment that was installed and that had to be cleaned out. Its been a tough past 3 years to say the least. She is in pain management but 90% of meds dont work for her and if they do work they only do so for about a week or so and then stop helping her. Doctors dont believe her when she explains the amount of pain that she is in because of her age, 26. They all look at her as if she is just trying to get pain meds. Even when we do find a doctor that doesn't act that way we are still unable to find any answers to why she is in sooo much pain this far out after the surgery. She also has a cyst in her spinal cord located in her neck that causes tingling, numbness and headaches on a regular basis. It seems to us that all the doctors we see dont seem to care enough to FIND OUT what is wrong and instead just rule certain major things out and send her on her way which is extremely frustrating.
Is there anyone out there that has this same issue or any advice on what to do? Its hard for the both of us cuz she cant do any of what she used to do and is stuck in a body of a 75 year old at the age of 26, life is completely on hold for her and has been for the past 3 years, frustrating.
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1

Comments

  • I'm so sorry for your wifes situation. I can't offer any advice other than to keep trying different doctors. No one understood my pain or believed me when I started having back problems. Turns out I had 3 herniated disks, congenital spinal stenosis, and a fractured vertebrae. It took 3 tries for me to find the right doctor that took care of me. Before I found that doctor no one would issue me anything other than steroids and at the very most vicodin. It's hard and frustrating, but don't give up, you'll eventually get the right doctor.
  • It saddens me to hear what your wife is going through, as it is such a common complaint. Glad to see that you are supportive and are reaching out yourself to find answers for her. She is very lucky to have you.

    Before I became disabled from spine issues, I gave anesthesia and sedation for epidural injections, and I truly had no idea how much my patients were suffering and did not understand it at all. That is the root of the problem...if you have never experienced it on a personal level, it is difficult to relate.

    There are a few good doctors out there. It been over 2 years since my fusion, and I'm still on the hunt for an empathetic doctor to be my advocate...it takes time for you and the doctor to develop trust with one another.

    For me, I do much better when I utilize many modalities to quench my pain. What works for one person may not help another, and also different therapies help different kinds of pain. My electric blanket helps with dull, aching pain, while ice helps with throbbing, burning pain. I use that in between taking my meds. I've also changed my diet, and eating lots of organic meats/fruits/veges, and limiting sugar, grains and any processed foods. I've just starting juicing, which is suppose to decrease inflammation. I'm hopeful that will help as well.

    It is not easy to come to terms with chronic pain, and especially is hard when you have had complications from the very thing that you thought would help you. Unfortunately the spinal technology is just not there yet for us.

    Good luck with finding the help she deserves!

    Lisa
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  • if your wife is not happy with the advice she has received so far, then ask for a 2nd or 3rd opinion.

    I've had ongoing chronic back pain for 7 years now. I have been told a couple of times that there's nothing else that can be done but I persevered as I couldn't live with the pain and it was affecting every aspect of my life. I've had ALL the conservative tests and treatments available on the NHS in the UK to find out exactly what was wrong in the end. My local GP has been so supportive and whenever I have asked to be referred to someone else, he has always accommodated my request.

    Unfortunately, as I've found out, there's no guarantee that all the treatments and surgery will get rid of the pain and I've been so disheartened by my experience so far. But I'm a relatively old gal compared to your wife.

    There must be other specialists you can approach who will see your wife, do the appropriate tests, to try and find out exactly what's happening and what your wife's future options/prognosis are.

    Your wife has her whole life ahead of her and you should both be out enjoying your young lives. Please don't give up trying to find answers about how your wife can better cope with the pain, whether through excellent pain management or investigating different surgical options if medication doesn't control the pain sufficiently.

    Please let us all know how you and your wife get on.

    SUE
    2 x Microdiscectomy 2005 / PLIFusion 2-level 2010 / revision surgery 2011 / NEVRO Senza spinal cord stimulator implanted February 2013. I WILL NOT GIVE IN / UP !!
  • Many here are just as frustrated and all have a similar story of despair, angst and ineffective surgery. Chronic pain is the biggest impact on society today and 26 is no age to having these problems, volume medication is never the one answer, it may be possible to keep taking stronger and stronger medication, and that is not living not even surviving, that quality of life would be intolerable and perhaps unsustainable.

    If as a patients I think I know more that the doctors, consultants and professors that who have cared for me then I would be naive, chronic pain is still not an exact science. Evidence here suggest that once chronic pain of this impact strikes, concurrent surgery is less, rather than more likely to find that illusive cure. People who have been in pain for a decade are still trying; the reality of this for a lifetime is upsetting.

    As Sue touchingly said, she had the surgery and would not have it again, for many and not those here, surgery may have worked, we are unfortunate and not representative of the total number of surgeries performed, it does not matter what statistics suggest if it is us who are one of the minority, a lifetime of this.

    Perhaps you could look at one issue at a time and try to get some control for her pain levels, through pacing, medication and evaluate what makes the pain less if anything and do more of that. Immobility itself can make the pain seem worse is your wife having any ongoing treatment or PT and what is the strategy from your doctor.

    Can I thank you as her carer ,many here could not survive without that invaluable help and encouragement from people like you, we know you feel powerless in not being able do something, this is a loss of expectation for you as well and you need help for you to cope with these mandated changes.

    One day at a time Aaron, post again and let us know how it is going.

    John..
  • i feel for both of you as i too am recovering from a multi level fusion and i too know the hell of that operation and as it was only 5 weeks ago ! the pain and suffering of the recovery ..well they say recovery in my 15 years of back pain and talking to many people with various back problems i would say that you are never totally free of problems once your back goes .and as for pain i and i am sure all the above believe that you have a genuine need for strong pain killers as real back pain is almost unbelievable to live with .i use to recommend a TENS as part of continuous pain help but after my ALIF fusion i get no help from it and i also get no help from a recent foot TENS so i too am relying on loads of oxycontin .i am so sorry for you both and i just hope you can find someone that will listen to you medically
    tony {UK}
    1997 laminectomy
    2007 repeat laminectomy and discectomy L4/L5
    2011 ALIF {L4/L5/S1}
    2012 ? bowel problems .still under investigation
    2014 bladder operation may 19th 2014
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  • SavageSavage United StatesPosts: 7,385
    ...wife is in pain management. I found that doc to be the most understanding and beneficial to me.

    It has taken years to get even semi comfortable and depending on what is going on in body...very difficult to unravel symptoms and try to match with remedy.

    I agree with others that your wife is lucky to have you on her side. It's exhausting, depressing... dealing with the pain and change of life style. To have someone to help talk for us of who at least understand...best they can anyway...priceless.

    It usually takes time and patience. For me, I almost don't care what's wrong, just help me be comfortable.
    Keep up good communication with doc, how responding or not responding to meds and treatments.

    My opinion, managing the pain should be first priority. Trouble is not one thing works for all ... so trial and try again.

    I wish her the best of luck and to hang in there and never give up!
    Sue
    Honorary Spine-Health Moderator
    -------------------------------------------------------------------------------------------------------------------------
    Please read my medical history at: Medical History

  • Has your wife seen a Neurologist?? They deal with the nerves. It might be a good idea to have your wife's GP to refer her to one.

    Has any Doctor considered scar tissue from her fusion as the cause of her pain? That is what has caused my chronic pain. Removing the scar tissue causes more scaring and the pain returns, most times worse than ever!!

    I am just guessing but it might be a good idea to ask her Doctor about scar tissue.(I am not a Doctor)A Nerologist should be able to determain if this is the problem. Some people have had the fusion hardware removed because it was thought to be the source of their pain. Some it has helped and some it did not.

    These are just some ideas I am throwing out. Right now your wife needs pain medication to help controle her pain and at her young age is difficult to get from any Doctor. Even for us older folks it's very difficult. Do not give up hope because there is help out there!!

    Your wife is so very lucky to have your support. Some spouses just do not understand making it very hard on the one in pain. I applaud you! =D>

    Please keep us posted. We really do care.

    Patsy W :H
  • I'm Megan, Aaron's wife. Thanks for all the responses. It is really therapeutic to talk to people who are dealing with what I am and it makes me feel less alone. I am very lucky to have my husband there because I don't know how to do it alone. To clarify what happened, we were out to dinner one night and I tried to stand up and couldn't. I had no idea what was going on. The pain was so bad that if I even moved an inch I would have white hot lightening pain up and down my spine. I had surgery to correct the two herniated discs, spinal stenosis, and arthritis. I actually recovered fairly well from this one and was pain med free after two months. I was at work about 4 months later and I knew something was wrong again. Another MRI revealed three more herniated discs and an annular tear. My doctor performed a spinal fusion on two levels. The hospital never changed my absorption bads or bed mat and so I laid in the fluids for a week. They discharged me with a low grade fever and severe drainage. When we called to tell the doctor a few days later that the wound didn't look right and I was sick. Instead of calling me in he told me I was fine and just to wait for the staples to be removed. A week later I was still no better and when my mom sent a picture of the wound to the nurse she advised us to come in the next day. I was staying with my mom 1 1/2 hours away from where I had the surgery so I am not sure why he didn't send me to the hospital ASAP. When we went to the office he told me he would have to perform an IND for what we later found out to be MRSA. We went to the hospital right away. They had aspirated bone marrow from my hip for the fusion and he was concerned that the MRSA might get into my bone marrow. After I was discharged, we came back a week later and he told us he needed to perform surgery again and remove the hardware. We didn't want to do this because it made it seem the surgery wouldn't have accomplished anything. I had a PICC line for 8 weeks that I had to administer antibiotics to every 8 hours 3 times a day. I was put in pain management with a doctor who only prescribed brand new medications and would change everyone to it regardless of what they wanted to do. In April I had to have an extensive right knee surgery which left me with even less support for my back and I have recently found out it already needs to be operated on again. This pain has also caused me to hardly ever sleep which makes the pain worse. I seem to get stuck with doctors who have no sympathy or empathy for what I'm going to and actually had one tell me recently that I needed to see a psychiatrist because it's all in my head. I had never taken or done any drugs prior to these surgeries and actually had them so I wouldn't have to do that but that's exactly where I ended up. It has completely changed my life and everything seems to revolve around how much pain I'm in as to whether or not I can do anything that day. Sorry I've already talked too much but right now our first priority is to continue to research my options and make informed decisions. I am learning to "grieve" the loss of the physically capable person I was and accept my limitations. It's hard and we will have to see how it goes...
  • I'm Megan, Aaron's wife. Thanks for all the responses. It is really therapeutic to talk to people who are dealing with what I am and it makes me feel less alone. I am very lucky to have my husband there because I don't know how to do it alone. To clarify what happened, we were out to dinner one night and I tried to stand up and couldn't. I had no idea what was going on. The pain was so bad that if I even moved an inch I would have white hot lightening pain up and down my spine. I had surgery to correct the two herniated discs, spinal stenosis, and arthritis. I actually recovered fairly well from this one and was pain med free after two months. I was at work about 4 months later and I knew something was wrong again. Another MRI revealed three more herniated discs and an annular tear. My doctor performed a spinal fusion on two levels. The hospital never changed my absorption bads or bed mat and so I laid in the fluids for a week. They discharged me with a low grade fever and severe drainage. When we called to tell the doctor a few days later that the wound didn't look right and I was sick. Instead of calling me in he told me I was fine and just to wait for the staples to be removed. A week later I was still no better and when my mom sent a picture of the wound to the nurse she advised us to come in the next day. I was staying with my mom 1 1/2 hours away from where I had the surgery so I am not sure why he didn't send me to the hospital ASAP. When we went to the office he told me he would have to perform an IND for what we later found out to be MRSA. We went to the hospital right away. They had aspirated bone marrow from my hip for the fusion and he was concerned that the MRSA might get into my bone marrow. After I was discharged, we came back a week later and he told us he needed to perform surgery again and remove the hardware. We didn't want to do this because it made it seem the surgery wouldn't have accomplished anything. I had a PICC line for 8 weeks that I had to administer antibiotics to every 8 hours 3 times a day. I was put in pain management with a doctor who only prescribed brand new medications and would change everyone to it regardless of what they wanted to do. In April I had to have an extensive right knee surgery which left me with even less support for my back and I have recently found out it already needs to be operated on again. This pain has also caused me to hardly ever sleep which makes the pain worse. I seem to get stuck with doctors who have no sympathy or empathy for what I'm going to and actually had one tell me recently that I needed to see a psychiatrist because it's all in my head. I had never taken or done any drugs prior to these surgeries and actually had them so I wouldn't have to do that but that's exactly where I ended up. It has completely changed my life and everything seems to revolve around how much pain I'm in as to whether or not I can do anything that day. Sorry I've already talked too much but right now our first priority is to continue to research my options and make informed decisions. I am learning to "grieve" the loss of the physically capable person I was and accept my limitations. It's hard and we will have to see how it goes...
  • MRSA is a tough one. My husband's cousin got it and she's is otherwise healthy and has been struggling for 6+ months. I can only imagine adding surgery recovery to that.

    IT sounds like so many things went wrong and you have such a wealth of information to share with others on when to challenge a doctor. I sure hope you have hired help to look into any 'foul play'. I'm not normally a person that says "lawsuit" and on the contrary, there are risks to everything especially surgery. But, your story is more than just the normal risks. It sounds like there was some negligence in the care. I wonder if OSHA would be able to help you if you cannot find legal help.

    Anyhow, I do hope that you recover from the MRSA b/c I suspect you can then start to recover from the lumbar experience.

    Stick around...if nothing else, you'll have people here to support you and listen to you.
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