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New member, 14 yrs w/pain, evaluating drug pump surgery

Annie1971AAnnie1971 Posts: 2
edited 06/04/2015 - 2:04 AM in New Member Introductions
Hi everyone, I've my first back surgery 20 yrs ago (L4-L5-S1 posterior fusion), 14 yrs ago two more surgeries came (same level anterior fusion) and since then the pain had never left. I've lived with chronic lower back and left leg pain since 2001 and it has affected my whole life. I had to quit my job back in 2004, it affected my marriage back then because my spouse never understood what I was going through, not even my mom could. I entered into a huge depression era of my life that thankfully I had learn to manage relatevely well, but the problem lies in the treatment for my pain.
I've had had any kind of epidural injection you can imagine, I've tried every medicine there is, every opioid, and my pain always gets used to the dosage, I need to receive more, and I end up developing an hyperalgesia and then I have to option but to go through a detox program go cold turkey on my meds, I had the most horrible pain I've ever experience in my life, all to just start the cycle all over again. I have had to go thorough detox 3 times already.
I had a neurostimulator implanted in 2012 and so far it doesn't make a difference, it okay helped if the pain level is very low. Now Drs are proposing that I get a drug pump implanted but I'm afraid, and obviously I don't want tango through another surgery (I have 5 back surgeries plus several other surgeries for a total of 11 and I'm only 43). They just prescribed me butrons patches but they're sure I will develop an hyperalgesia again and will end up in a detox again and they say I can't keep having my body go through that. And let's be clear is not that I get hook up on pain meds, I hate them, is that my pain gets used to the dosage to fast they need to increase it and eventually the same medicines causes the pain (they say...)
I just separated from my current spouse. She was very supportive of my pain when we met but she's not anymore, she says I'm always in pain and I'm always complaining. We have been together for 5 years and even though the relationship was stranded I feel really lonely living alone with just my dog.
I have looked for support groups to assist all over town but there are none where I live.
I need to reach out to people who is going through the same or similar problems as me who can understand me.
Also if somebody has a positive experience with the drug pump or a negative one please share it with me.
Thanks a good night
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Comments

  • SavageSavage United StatesPosts: 5,941

    Welcome to Spine-Health

    It would be very helpful if you could provide us with more details. So many times we read about members who have different tests and they all come back negative. The more clues and information you provide, the better chances in finding out what is wrong,

    Here are some questions that you should answer:


    - When did this first start?
    - Was it the result of an accident or trauma?
    - What doctors have you seen? (Orthopedic, Neurosurgeon, Spine Specialist, etc)
    - What Conservative treatments have you had? Which ones?
    - What diagnostic tests have you had? And their results (MRI, CTScan, XRay, EMG, etc)
    - What medications are you currently using? (details, dosage, frequency, etc)
    - Has surgery been discussed as an option? (If so, what kind)
    - Is there any nerve pain/damage associated?
    - What is your doctor’s action plan for treating you?

    Providing answers to questions like this will give the member community here a better understanding
    of your situation and make it easier to respond.

    Please take a look at our forum rules: Forum Rules

    Please remember that no one at Spine-Health is a formally trained medical professional.
    Everything that is posted here is based on personal experiences and perhaps additional research.
    As such, no member is permitted to provide

    - Analysis or interpretation of any diagnostic test (ie MRI, CTscan, Xray, etc)
    - Medical advice of any kind
    - Recommendations in terms of Medications, Treatments, Exercises, etc

    What could be good for someone could spell disaster for another.
    You should also consult your doctor to better understand your condition and the do’s and don’t’s.
    It is very important that new members (or even seasoned members) provide others with details about their condition(s). It is virtually impossible to help another member when all the details we have are
    I’ve had this for years, it hurts, I cant move my shoulder – what could this be, what treatment should I get?

    Diagnosing spinal problems can be very difficult. In many ways its like a game of clue. Especially, when the diagnostic tests come back negative – no trouble found! Then its up to the patient and the doctor to start digging deeper. The doctor is like a detective. They need clues to help them move along. So, you as the patient need to provide the doctor with all sorts of clues. That is like it is here. Without having information about a condition, its impossible for anyone here to try to help.

    Specific comments :

    Personal Opinion, not medical advice :

    ---------------------------------------------------------------------------------------------------------
    --- Ron DiLauro, Spine-Health System Moderator :
    Sue
    Spine-Health Moderator
    -------------------------------------------------------------------------------------------------------------------------
    Please read my medical history at: Medical History

  • SavageSavage United StatesPosts: 5,941
    edited 06/04/2015 - 12:10 PM
    I am assuming you are being treated and prescribed meds from a spine specialist...pain management doctor.
    I would think that to be a must. Not having a primary care doctor trying to manage the meds and their complications.

    When I first started with PM doctor, I was told that my main med for managing my pain will be switched every year or two so I do not become resistant. I started on fentanyl patch, then to OxyContin , back to the patch, etc...
    That has worked all these years as both meds are still effective for me.
    Has that been your experience?

    From my understand, once proper dosage is achieved and you then need increase, that is indication med is no longer effective and you need different med.
    Has that been your experience?

    I am unaware of pain pump and situations that would accompany it.
    Others, reading your title, may come along with their experiences.

    But with your history with meds, I certainly understand your concerns and hesitancy. Please be sure all your questions are answers to your satisfaction and your concerns with your history are addressed.

    Sorry for the chronic pain effects on your relationships. That has been similar to my own life also.
    It is so difficult for people who do not live it to fully understand. And then that is a part of you that will never truly be known to another.

    Even the people who do try to understand, may, will try to push you. Just a little further? At whatever event, just a little more time? All you have to do is sit!
    They not understanding that sitting isn't comfortable after certain amount of time, even short amount of time.

    They just don't understand. Personally, I have learned not to expect them to and not to be angry when they don't understand.
    Honestly, if I didn't live this life, I wouldn't believe it. :)

    What may be difficult for you also, is judging from your age , people you involved with still want fun active things to do.
    And if you look good, they expect that means you feel well.
    Most people do not know what chronic pain looks like. Yeah, I look good today, still hurting, but thanks, I guess.

    You've come to great site. Tons of info! Use search, upper right on page . It may lead you to older posts, articles an videos useful to you. Sometimes the info gives me more questions. Some I research more an some I write down to ask doctor.
    Hang in there!
    Sue
    Spine-Health Moderator
    -------------------------------------------------------------------------------------------------------------------------
    Please read my medical history at: Medical History

  • Hi Savage

    Thanks for writing back. Let me tell you a little bit about my history.

    I started having lower back pain in 1995, my diagnosed back then was instability of L4-L5-S1 (that was the cause of a herniated disc I had between L4-L5) and I had a posterior fusion performed. Everything went well, I had no residual pain after the surgery. I never had an accident or anything that could have caused this,mother Drs said it was probably congenital.

    After several years during the year 2000 I started having pain again on my lower back and after a few months it started shoring down my left leg like the first time. I made an appointment with one of the most famous spine surgeons in NY, the back then head of the Beth Israel Medical Center Spine Institute, and even though I was in pain all my test kept on coming back negative (MRI, CT Scans, myelogram, discograms, etc) The pain management Dr at the same unit started seeing me and I started having epidural injections which helped a little but the pain always came back. I also did physical therapy, chronic sacral therapy, acupuncture, etc. by the end on that year my pain was unbearable, I couldn't even go to work, so they decide to do an exploratory surgery to remove the hardware they have implanted during the 95 surgery and see if it was moving. They took out the 6 screws and two titanium plates I had and I was left with just the bone shaft, the diagnostic was that it was not moving and they just cleaned the nerve canals.

    After the surgery my pain even got worse after the surgery and couple of months after being in bed with very high dosage of morphine and having epidural so etc when they reapeated the discograms it was positive so they said I needed a frontal fusion that I had on June 2001. They removed the two discs completely and replace them with tinatium baskets filled with bone and added more bone shaft on my back. Even though the surgery kind of helped a little I only improved 10-20%.

    Between those two surgeries I was in bed for 6 months and alone. My family came and went, my husband at the time wasn't even living with me, and wasn't understanding, so that's when I entered into a huge depression that I have had to battle ever since.

    Since then I have had a chronic pain, my diagnosis is failed back syndrome Although I have also been told complex regional pain syndrome. Since the. I have been on opioids, seeing different pain management Drs, and trying to have a better quality of life. They do change the opioids, but my body always find a way to become resistant of the medicine and it does it even faster now.

    On 2011 I went through another surgery where they implanted a neurostimulator to control the pain, it helped significantly during the trial period so I had it installed and then it only helped delaying me taking the medicines even though at the beginning since they had just detox me it wasn't even an opioid!

    I have taken morphine, oxy, tried fentanyl patches and bupromorphine patches. Last time I got used to the pubromorphine patches really fast, they changed me to oxy same thing, I did the detox and surgery and they put me on a medicine that doesn't exist in the USA since I was living in Spain at the moment. I lasted almost two an half year on that medicine but it destroyed my stomach and stopped working so I back on bupromorphine and Percocet for rescue.

    I have tried epidural a facet joins and all those kinds of injections also radio frequency, and they basically don't help. My Dr says I can't keep going to detox every 3 years and that at this point the only option I have left is an intrathecal pump. Is another surgery where they will implant in my abdomen a pump connected internally to a catheter that goes into the intrathecal space which is the area surrounding the spinal cord. They can put morphine on the pump or other opioid. They hyperalgesia is so less likely given that 1mg of morphine through the pump is the same as 80mg taken orally! So a lot less opioid is required to achieve the same effect.

    You still have to change the pump (as I have to change the battery of the neurostimulator) every 5-7 hrs depending on use. You have to go to the Dr every 6-12 weeks to get it refilled. My Dr says he has never has to detox somebody with it.

    I hate the fact that I might need another surgery and that more cables and crap are going inside me but I want quality of life. I do work now but when I start getting pain I loose focus, concentration, I get desperate, is horrible.... The pain doesn't allow me to do anything until it dissapears.

    In addition to all my problems with my back and left leg, about three years ago an injection wrongly administered on my right buttock apparently touch my nerve and now I have right leg pain as well, is there almost all the time, so now my two legal hurts and there is no surgery nothing they can do to fix it, is just screwed. So that might be able to be solved with the pump as well.

    And you're so right about people not understanding you, because of my age, because of what's expected of me. At the beginning I though my wife did but obviously she didn't, and I realized she might have never done it the day she complaint about me being in pain all the time. My relationship had a before and after that day. That's not the reason we are separated but it does contribute.

    Even at work, every woman I work with is wearing this beautiful high heel shoes and I do my best and I wear medium/ small heels and I only tolerate them until certain time, if I'm still working after certain hour (I work long hours) I changed to flats. The sitting kills me but standing is worse. Laying down is the best but still once the pain shows up it never leaves unless I take something even I'm I'm laying down.

    Again thanks for your answer, I think I converted everything. I just didn't want to make my email so long the first time :-)
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