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At my wits end, where do I start for help?

dryflydryfly Posts: 23
edited 11/17/2013 - 12:09 PM in Chronic Pain
Or should I say start over? Short version is this: I fell hiking in 98' and fx'd L4, ten years later I was fused from L4-S1 (2008.). Later that same year I was in a pretty bad car wreck and injured T12. This year I had a SCS implanted and I am not very impressed with it. I'm still in chronic pain and take ALOT of Vicodin. My rep is great and has met with me multiple times to adjust the SCS, I'm pretty convinced the SCS is as good as it's going to get. I'm fed up with being told "There's nothing else we can do." I don't whether to find a new MD, be it a pain doc, neuro, ortho......I just don't know what the heck to do, but I'm tired of hurting. I'm a Paramedic and have had to quit my last two jobs because of pain.

Thanks everybody


  • sandisandi Posts: 6,343
    edited 11/17/2013 - 12:19 PM
    The best option would beat a large teaching hospital in your area. If the SCS didn't provide 50% pain relief then they shouldn't have implanted it.
    I'm sorry for what you are going through.
    What doctors are you seeing now?
  • dryflydryfly Posts: 23
    edited 11/17/2013 - 3:07 PM
    The surgeon that put the SCS in said there is nothing surgically he can do and referred me back to the pain mngmt MD in they're practice. Vicodin barely does anything, dilaudid did not help. I'm sick of taking drugs IF they don't work, it would be different if I was getting relief. Just sick of being told there is nothing else we can do. I mean, come on. I'm just a medic, but I know better than to tell a patient "we can't help you."
  • dryfly said:
    The surgeon that put the SCS in said there is nothing surgically he can do and referred me back to the pain mngmt MD in they're practice. Vicodin barely does anything, dilaudid did not help. I'm sick of taking drugs IF they don't work, it would be different if I was getting relief. Just sick of being told there is nothing else we can do. I mean, come on. I'm just a medic, but I know better than to tell a patient "we can't help you."
    Those words hit me like a brick and sat with me for quite a while. Life was over for me and I had to get mental help to deal with a life of pain mgmt meds that didn't work well. I am very fortunate hat the SCS did work for me but in your case apparently not. Keep trying to seek alternatives because when you give up its not a pretty picture.
  • I have been fighting chronc pain for 35 yrs I was hurt when I was 20 Took 16 yrs for Dr to tell me what was wrong I live in Canada so I filed WCB was told it took to long for diagnoses so I was not covered I have been told by different govt agencies I have fallen through the cracks I don't know who can help as everyone I talk to sends me to someone else
    I have been told there is help out there but no one seems to want to help any ides from Canadians on where to look?
    Thanks Pat
  • Since you are a paramedic, you already know that there are plenty of more options available when it comes to treating pain than just vicoden and dilaudid.....both are simply short acting medications, which is part of the reason that they don't provide adequate pain relief for any length of time..
    If you are not seeing a physiatrist/spinal rehab doctor, it would be worth your while to at least consult with one. I have been seeing mine since prior to my first surgery, and his office manages my medications, makes referrals for tests or other procedures, and I wouldn't be where I am now, without them.
    There is link at the end of my post called steps to getting treatment for chronic back pain. Read it, it might help you find a starting point to getting some adequate pain management options going....
  • I had my upper and lower back surgeries in 2010. ACDF on cervical seemed to help a great deal. The laminectomy on lower spine made pain worse and I have been on a drug cocktail ever since knowing full well that at least it help my pain but was taking the best parts of me with it . My quick wit, sense of humor, emotional highs and lows. Severe depression, isolation, on and on.

    This latest MRI showed my DDD has continued to worsen even in just 1 year since the last one. For me the worst news is they say they don't have any good surgical options. Took the air out of my balloon . I am going to try to have other neurosurgeons look at it just in case. I would love to be off these pills but I am dependent because of pain. I have lost so much but there has to be a doctor out there who can help me and us all hopefully. The key is never give up. I would love to flush my pills bit I am terrified since pain and I don't get along well now .

    So hang in there and do your best , get 2nd, 3rd, and 4th opinions.
    AL S
  • terror8396tterror8396 Posts: 1,832
    edited 12/06/2013 - 7:43 AM
    i'm perplexed. you took some of the strongest narcotics known but they did not help. dialudid is up there with morphine and the only thing stronger is heroin which is illegal here. if they don't help, why are you continuing to take them? also as sandi stated there are other ways to deal with chronic pain than narcotics you say you are sick of taking drugs. if they do not help and are sick of taking them, then why don't you stop talking them and try other chronic pain things to help. by the way i teach high school and i have major pain issues and i am 66 but i still work. i have never thought of quitting my job. if i did i would be letting myself down. i have kids in wheel chairs with back pain and issues and if they can come to school and try to graduate, then is should be able to work. maybe working could be therapeutic. it is for me. it gives me purpose. i don't know about disability, but if people keep saying there is nothing more to be done, maybe there is nothing more to be done. there are other jobs that one can do if disabled. i have not or would never go on disability.
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • Not sure how you meant to come across but it sounded harsh and judgmental. I am not sure if you directed it at me or the author of this thread or us both. Let me say I agree with many things you said. Being cast into the disabled mold is a negative thing. Many people say you are so lucky, you've got it made etc. I tell them to be careful what you wish for because this is not a dream come true even if you take away the suffering both mental and physical. A job gives you a sense of purpose, accomplishment , of self worth. Many people make friends which in turn creates social gatherings and other positive things. Being disabled you may meet someone in the doctor's waiting room.
    I am a disabled veteran with severe PTSD , major depressive disorder, anxiety disorder with panic attacks not counting my spine issues and chronic pain.
    I wish to God I could work at a job that I could handle with all my limitations and wouldn't require me to come in when I've had a flashback or a night terror.
    So if you can work then do it for your sake. It's a blessing for you to do so. After my back surgeries and with chronic pain added to my other problems I did sink into a dark hole feeling sorry for myself and angry at God. I have changed my attitude although I do have down periods. I am trying to look ahead and to live and enjoy my life the best I can.
    I hope you are enjoying yours because it's to short to waste a minute .
    God Bless
    AL S
  • terror8396tterror8396 Posts: 1,832
    edited 12/06/2013 - 10:08 AM
    yes telling you that work could be therapeutic is harsh and judgmental. maybe you should read what is said instead of jumping to conclusions. i have been a chronic pain patient for 12 years so i know what things are like. if you feel this way then maybe you need to get help instead of lashing out at someone with advice like doing something to make you feel better. it seems like my point about taking narcotics is hitting too close to home. if they are not helping why take them? why take things that do not help especially if you don't want to take them in the first place. how is that judgemental and harsh?
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • dilaurodilauro ConnecticutPosts: 9,865
    In your opening statements, you indicated two things;
    One That the doctors are telling you there is nothing else than can do for you
    Two You are tired of taking those powerful narcotics, but continue to do so

    As previously posted, pain medications are NOT the end to managing pain. There are many other components that are necessary to realisticaly handle pain. While it is different from patient to patient, the concept is the same. Take a quick look at : The Blend

    It seems to be very common when we hear that doctors can not do anything else.. My belief is that there is always something else that can be tried. I was up against similar situations, where my neurosurgeon said there was nothing else they could do. I started seeing a physiatrist in 2006, and after trying various types of conventional treatments (ESI, Trigger Points, Real Traction (not the DRX9000 or other devices), Acupuncture, Physical and Aqua Therapy,etc, we seemed to have reached the end. But working with my physiatrist, we started to explore the eastern medicine routes. That included aroma and music therapy, relaxation techniques, true Thai Deep/soft tissue massage, mediation, etc. Finally, combing the Western and Eastern medical approaches I have been able to manage the total pain. Yes, I am still taking pain medications (fortunately at a low maintenance level) along with Nerve, Muscle relaxers, etc and I can function again.

    The message here is that there is ALWAYS something that can be done. You may need to see additional medical doctors, especially those that are open to different techniques. All of that may also mean that working in the capacity of your normal job has to be modified or stopped, but you will always be able to work in some profession.

    All of this is not easy. You can see that many of us, have been dealing wit this for 20,25,30 years or more. While we may sound a little cold or to the point, but we are just trying to lay out some facts.

    Never give up!
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Perhaps I misunderstood what you were trying to tell me and in that case certainly my fault and please accept my apology.
    I have been struggling with PTSD , depression, anxiety, panic attacks since my discharge from the army in 1974. I went straight to work with symptoms rearing their ugly head but I worked and tried to hide my triggers and panic attacks and bury my feelings. Seeing a therapist or taking psych meds wasn't cool in those days. In 1982 I had a complete breakdown, I was on short term, then long term disability benefits through my work insurance. Then it ran out and I went on Social Security in 1983 while getting provide therapy. By 1986 I thought I was ready so I took a job in my field, I got severely burned on the job and I went down with that and my other issues. I wouldn't go to the VA foolishly at that time because I wanted to contact via the government ie army. 1989 I took another job moving to Ohio. It worked better because of a flexible schedule and I did so well I bought out the owner of this franchise. The problem was being the owner allowed me to isolate even more and the stress was tearing me apart so by 1993 I was completely housebound with an office at home and I had to have my top management come to me for meetings and business plans. My flashbacks became more frequent and devastating and I attempted suicide twice landing me in the hospital with a wise psychiatrist who got me to write a letter to the Army basically venting about what they put me through. They forwarded the letter to the VA where I was taken for an intake eval a long 4 day process who finally diagnosed the PTSD aspect which had previously went un diagnosed. My business was pillaged by people I trusted so that was gone and I couldn't get social security because I owned stock in t his business. Fortunately the VA awarded me disabilty service connected and then I had dissolve the business but I couldn't appear in court because of my many anxity issues so the end result was a phone conference with the court and I finally regained my social security and proper mental Heath treatment at the VA which helped aa great deal but no cure then or now.by 2001 I started with t he pain issues which escalated to two surgeries on upper and lower spine, the lower spine procedure failed leaving me less mobile, prone to falling, and worse pain then before surgery. This aggravated my PTSD ,depression and other symptoms where I got to the point I lived in my bed. One day after a very bad flashback I tried to hang myself in the garage, screwed it up because the rope broke leaving some damage to mmy neck and esophagus .
    Because of my wife's steadfastness never losing faith and praying constantly for me I got up out of bed went to pain doctor trying every alternative treatment they have for pain. I also learned to accept my situation and do the best I could to make a life out of the ashes because I found other people wanted me to stick around but in my thinking I would be doing her and the family a way to not be burdened with me. Now when I feel in great despair I think of them and what they want me to do and the love and devotion they have given me for so long. That's my story and again sorry I misunderstood.
    AL S
  • I have decided to accept my situation and do the best I can at living. As you can see from my last post I have been fighting all these issues literally for 40 years and I admit I get tired. There is absolutely no job I can hold, none! Because my moods are unpredictable and at times I won't even attempt to get out of bed. Not because I love it there I am just overwhelmed by the combination of pain and the list of mental issues related to PTSD on the anxiety spectrum. Special accommodations have to be made for even simple procedures due to all this mess. So we can agree to disagree on the job thing. But I do urge anyone who hold a job to do so for their well being .
    Thanks for the feedback
    AL S
  • While none of us have the answer for everyone, we can empathize with what you have gone through and continue to go through. Have you looked into a therapist specializing in treating PTSD who will come to your home? They are out there, and are more than willing to treat vets with PTSD, especially now.
    It might take some 'leg work' ( I mean phone calls, and follow up) on your part of your families, but they are out there. They also can help you in finding some acceptance with the pain....I honestly realize the road might not be an easy journey for you, but I know that there are resources out there now that didn't exist previously and I think that you might find them extremely helpful if they were able to come to your home for now and offer you some help.
  • I am working on acceptance and living my life focusing on what I can do and making the best of it.
    AL S
  • to see you again! I'm glad that you are able to focus on what you do have and what you can still do, I think that it is one of the most important parts of adjusting to our new normals, is learning to focus on what we still can do.
    I hope that things improve for you , and that you find new joys in life, as I'm sure that you will.
  • This has worked for me Hanna somatics. Do a search. It's about retraining muscles and doing certain exercises daily. I can't explain how it works but it was my last choice. PT did not help me, pain meds or muscle relaxantsdid not help or yoga for a tightness, squeezing sensation I kept getting in my thoracic area when I did dishes, cook, put on make up. And other times. I am going for my seond session with the practitioner. Costing me some mney but it is giving me back a life without worry. I believe it is coming from my cervical stenosis. I am feeling normal again.
    Leila deurell
  • Depression, PTSD, anxiety is tough. Is there a support group near you? Do you have a therapist? I might seem pushing it, but due to the severity, ever consider ECT? very safe these days. Do you use breathing techniques when panicky. Do you tell yourself " you've been here before, you will not die from this, it will pass." Do you meditate? do you have spiritual side ( not religion) Write affirmations to read daily, things specific to you. Like: " I am part God energy, I am a beautiful spirit, I am loved, I am safe, all there is is love, I love myself and my family, the pain is lifting" We are here to learn about love, I think (:- ) what lessons do we have with our challenges. Hug yourself, know all the panicky, anxiety will pass. Soak in a hot tub. Know you are worth your life, forgive, forgive, forgive. hugs, Leila
    Leila deurell
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