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Problem Finding a Doctor to Help

stephanie27tsstephanie27t Posts: 4
edited 10/28/2013 - 10:31 AM in Lower Back Pain
I don't understand why it is so difficult for me to find a doctor willing to help alleviate some of my chronic back pain. I read about so many people who have doctors that prescribe them lifelong pain meds and I can't find one that doesn't tell me it is just something I have to live with. I have been living with chronic back pain for years now, including 2 ruptured discs and had a lamenectomy a couple years back but have permanent nerve damage of numbness and pain in my right ankle and foot. Sciatica still exists full force at times. I may be "young" and have 2 kids, but I still have to make a living running a c.store which if you know a thing about then you know it is strenuous and laboring work. Top that off with a 3 yr old and a 5 month old and yeah, it would be nice to find a doc who takes me seriously and will help with a script as needed. That's my rant, and if there is any advice out there that is beneficial please share. I am miserable physically which puts a strain on me cognitively.
L3L4, L4L5, L5S1 are my problems. Most recent MRI showed no pressure on nerve but have permanent numbness and pain in right leg and foot.


  • terror8396tterror8396 Posts: 1,832
    edited 10/25/2013 - 4:25 AM
    have you jumped through all of the hoops that one has to go through first? i had to get an ortho dr from my regular dr and then my ortho sent me to a pain guy. i had to have a disectomey where they inject a dye into your disc, then an mri, xrays, cat scans, nerve tests and injecting radioactive dye into me to see if it was bone related. then methodone then i had to attend a mandatory class given by the hospital and the orhto before surgery. then a laser disectomy which did not work then a fusion where i spent 10 days in the hospital and the surgery took 12 hours with numerous side effects. then after the fusion, the ortho and pain dr along with myself recommended 40 mmg of oxycontin 4xs a day along with 700 mics of fenatyll lollipops for breakthrough pain. this is what one has to do to get pain meds and even after all of this some drs won't give out narcotics. they give naisd's and nerve meds instead because they are paranoid of the dea or their beliefs don't allow narcotics. so this is what one has to do minimum.
    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.
  • Hate to say it's true. I had to jump through so many hoops before I was given enough pain medication to make my pain bearable. Hospital for seven days.Think I saw at least six othopeadic surgeons, neurosurgeons, three shoulder specialists, PT three times, pain clinic, tens machines, psychologists, about six physios, oesteopaths, occupational therapists, probably at least 6 MRI's, bone scans, ct scans,hospital specialists. pool exercises, gym exercises,nerve specialists, hypnosis for pain, acupuncture, myofacial treatments, about five naturopaths, acupuncturists, lots of alternate medicine, heaps of herbal treatments, everything cost me around $30,000.

    Five different Doctors from work - took all my long service and all my sick leave and all my holidays, which I had a lot as I hardly had taken a day off in 20 years. I would have sold my house to stop the pain. Some days if I didn't have family would have gratefully jumped off a bridge, I was in so much pain I did not sue when I could have because I thought I would get better and that accidents take a long time to heal. What a joke. I supplemented my medication with over the counter medication which wrecks your liver. Thoracic fractures are so rare that not many Doctors have seen them. My research showed that about 87 percent of people die if they damage their spine like I did in an accident, as the impact has to be so intense they usually suffer other injuries as well.

    Was working full time for about seven years and ended up leaving before I got a disability pension I had paid into for so long. Because of the pain I just left. Finally through my own research I found a specialist who understands thoracic pain and a great physio who took the time to realise what was happening and worked out a complex problem.

    I had to do my own research for my GP who backed me because I had been going to him for so long, he asked me to do my own research, and he would write a referral to any Dr I researched as he had never seen an injury like mine. In the end did my own research and found a specialist who knew about thoracic , fluked a physio who looked outside conventional treatments and worked out what was wrong, This took over seven years. I worked long hours in a full time job in intractable pain. I wasn't treated correctly from the beginning, I should have been hard braced, thoracic is so rare that not many Drs have seen it, certainly none of the myriad of specialists I went to and paid - they couldn't work it out as it was so complex. None of the specialists agreed and was given different advice from all of them.

    If I knew what living hell was in store for me I would have researched myself from the start,realised how rare and complex my injury was, looked at the MD rating sites, found good specialists with good patient ratings, who knew about my area of damage, sued when I could have, it was an accident was not my fault, but I didn't have insurance for myself only third party, I should have sued the council at the start as it was in the police reports that my accident was due to council negligence, realised it would not get better, not done more damage by trying to push through it and handled the pain differently.

    Back pain has been like living in a nightmare for the first 7 years. They finally decided to combine muscle relaxants with pain killers. I had to jump through so many hoops and intense pain - I would have handled it totally differently and taken time to research specialists who knew or would take the time to realise exactly what had happened to my spine. I also believe a lot of my damage wasn't picked up as I didn't have a standing or sitting weight bearing MRI to show which vertebrae was actually causing the intense pain. They all were looking at the obvious and not realising that it was a different vertebrae that was really doing the damage and the cause of my pain.. Good luck, you do need to find a specialist who knows about your specific area of damage and has seen it before, and knows the outcomes.
  • Pain mgmt. Docs can give epidural injections that may help

    Have you tried the injections?

  • The days of your doctor just writing a prescription for pain meds to just hang onto incase you have a flair are long gone. I had first back surgery at 29 and 3 more in past 4 yrs. I have also had 3 knee sugeries with last one being 8 weeks ago which was total knee replacement. I have been on daily pain meds for past 2 yrs. Even after 13 surgeries I was never given pain medications long term until my thoracic spine sugery failed and 2 knee surgeries since Jan. Of this yr. I have had more steroid injections than I can count and some helped tremendously and some didnt.

    I am so sorry you are having so much pain especially having small children and working full time. If you have a primary doctor give them a call and make appt. Mine did the xrays then sent me for MRI and acreferral to my neurosurgeon. Some people go with orthopedics and I did with first back surgery but he retired and sent me to neurosurgeon. I like them both but think NS is better when nerve problems like sciatica are involved. Maybe if they dont see anything on xray they can try PT and anti-inflammatory and maybe muscle relaxer. You have to start somewhere and it wont be an easy quick fix. I will be thinking about you and pleasecPM me if you would like.

  • stephanie27tsstephanie27t Posts: 4
    edited 10/27/2013 - 9:59 AM
    I can honestly say I have not jumped through hoops, but I would in a second if given the opportunity. Doctors shrug off what I tell them. Even though I have had a surgery and live with 2 ruptured discs they don't offer much, if any, resolution. I have had a few injections, the last one hurt so bad and offered no relief that I can't mentally prepare myself for another one. I become filled with anxiety thinking about the pain I experienced when the needle went in. My other pressing issue is that I have no insurance at this time. I will be signing up for some in November, but coverage does not become effective until January 1st. Some guidance as to what kind of doctor I need to she is appreciated. I do not have a PMC at this time. Thanks for all the input so far.
  • thoracic spine painthoracic spine pain Posts: 566
    edited 10/27/2013 - 11:55 AM

    Which disks are herniated? Look at the MD rating site, find a specialist close to you, who has good patient ratings and ask for a referral to either an orthopaedic surgeon or a neurosurgeon who is an expert in the area of your pain.

    Ask your GP for a referral and an MRI as well. In my opinion a standing or sitting weight bearing MRI is better than a prone one. That is just my opinion and other people disagree. I know this will be expensive but you are probably doing more damage. Read Sandi's steps you have to go through first because you don't want to have to end up on pain meds for the rest of your life. They are addictive and not fun because they never kill all of the pain. Your body also gets used to them so it becomes a vicious cycle , but they may be able to give you some fill in meds until you see the specialist. Pain meds only cover the pain when there is no other option and restrict your every day life as if you want to go anywhere you need to jump through hoops to get them prescribed for a longer period. They will not act to give you a high - they will just cover the pain.

    Though they make the pain bearable the downside is no pain, no pleasure as they not only act on your pain receptors, they act on your pleasure receptors as well. You may be able to have a successful operation which you can leave until your insurance kicks in.

    If you have lumbar or cervical specialists are more likely to know about it and a lot of people have had successful operations especially for disks .If the pain comes from thoracic spine which is very rare good luck. Have a look at the Dermatone chart on this site or under Sandi's avatar and you can see where the pain radiates. You can match your pain to the disks.

    I have copied the Intractable pain survivors manual for you to read. I wish I knew what is in this Manual before I started and I would have done so much so differently.


    I have also been doing hypnosis for pain from You Tube. I am a good subject but need the ones with the circle to put me into trance. It is very safe to be hypnotised as all hypnosis is self hypnosis. You only need to put aside about 20 minutes a day. I have studied hypnosis then stopped using it, but have started every day again and it has helped. Your mind is so strong, it can help with the pain signals.

    Good luck but I learnt to do all he research myself. It also helps if you take someone along to the appointments to verify your pain. I take my sister, when you are in pain it is hard to express yourself and Drs don't tend to dismiss you as much if you take someone.

    I hope it works out for you and you don't have to go through what I went through. I also use a physio who is a sports physio as they have to get professional athletes back on the field, so I was lucky at last to find a physio who thought outside the obvious - although what she found was obvious if you think about it. All the other Drs just looked at my so obviously crushed vertabrae and thought that was causing the pain but it was actually the one above.

    When you damage your spine the disks above and below try to take over from the damaged ones as your body tries to compensate and heal itself. So many specialists put me in the too hard basket, I have a rare injury. If you go to a physio don't let them put you on a tens machine and leave you. They need to touch the areas of pain.
  • stephanie27tsstephanie27t Posts: 4
    edited 10/27/2013 - 1:43 PM
    L3 L4. L4 L5. L5 S1. But I just had a prone MRI about 3 months ago and it only showed 2 "old" ruptures and no nerve issue. Laying down my nerve doesn't bother me as much as sitting and standing. Not sure what type of doctor to be looking for.
  • thoracic spine painthoracic spine pain Posts: 566
    edited 10/28/2013 - 3:04 AM
    They have more sitting or standing MRI's in the US. You can look them up on the internet and they will tell you where they are situated. I'm sure that is why they did not pick up the cause of my pain as your body goes into a lying position which is the only comfortable position for me. If sitting or standing hurts it seems like common sense to me to have a weight bearing MRI. The Drs are specialists and are usually orthopedic specialists or neurosurgeons ( I think they deal with nerve pain).

    There are also forums for Sciatica and one for Lower Back or Lumbar pain so you may be better posting on either of these forums on this site as the people there will have similar problems to you. You can do a search on each forum for your problems. These people will be able to give you more specific advice as they will have had similar problems to you.

    On the MD rating site on the web you can search by city and speciality.

    But if you post in the other lower back pain forums people can personal message (PM) you regarding Drs.

    You really need to give them as much medical information as possible, you can post your history on your personal site, so they can help you. Your GP should know who to refer you to. If you are in the same city it might be an idea to go back to the Dr who performed your first operation.

    Stephanie my injury is totally different to yours so you need to post on the specific forums where people have the same problems as you.
  • Ruptures I am assuming you mean herniations? Or bulges? A ruptured disc would mean that the entire contents of the disc are totally gone and extremely rare, but a herniation is more common and a bulge is even more common than a herniation.
    Most herniations and bulges will resolve themselves over time, which is likely what the MRI intrepretation meant when it called them old- meaning that there is or has been no change over time and no nerve compression seen now.
    You can start by seeing a new GP when you get insurance, and then he can make or give you a referral if you need one for your insurance to a physiatrist. Many physiatrists work alongside surgeons in the spine arena, so if the physiatrist feels that you need to be seen by the surgeon right away, then he can send you to see him.....and he can order more tests, or xrays or give you referrals for any other treatments he feels may help.

    The link that Liz provided you at the end of her welcome post has a link to the physician listing on Spine Health. You can search for doctors in your area, and see what types of doctors are nearby.........that is the best option that I can suggest......http://www.spine-health.com/doctor
  • stephanie27tsstephanie27t Posts: 4
    edited 10/28/2013 - 2:30 PM
    Ruptured is what they told me on the phone. A physatrist sounds like just what I need. I am tired of covering up the pain. I want to know why there is so much pain and tonight in particular it's burning.
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