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Exhausted, down, and just plain fed up.

It seems like forever ago that my PCP said there is nothing wrong with me. My ortho sent me to 6 weeks of physical therapy. No improvement but we learned a lot about my pain. My PT says its SI Dysfunction, SI laxity, herniated disc (L5/S1), Sciatica, and symptomatic spina bifida. Basically, I hurt. A lot. I've exhausted the use of NSAIDs and can't take anymore because of a bump in my creatinine. My Ortho has requested an MRI through my insurance company but they've denied it twice. My ortho said yesterday that even if he gets the MRI he doesn't know what I expect him to do because I'm so young. I also asked him to fill out an RFC form for ssdi because I haven't been able to work since 2009 and these medical bills are killing me. He blatantly refused. I went to the ER today to try and get an MRI... they refused. They did, however, tell me I need to visit a neurosurgeon. Woo hoo... another one to tell me it's in my head. I am not emotionally capable of hearing another doctor refuse to do something. I almost yelled at my ortho when he said, "You're too young to have anything too serious. There's nothing for me to do if it's your SI joint. And spina bifida doesn't cause pain."
How do you stay positive? I don't want to go doctor shopping again. I want to be fixed. I want to be able to play with my daughter. I want to be able to walk without feeling like I'm dying. I want help. I can't find any.


  • I had a similar experience.
    I had 3 doctors (not including the ER doctors) who basically told me they weren't qualified to treat me.
    I also had numerous doctors (including my surgery team) tell me that there's no way my back should be as bad as it is without some serious trauma.
    It gets frustrating, but it is definitely worth it to find a doctor who will help you.
    If you haven't yet, start keeping a written journal of your symptoms. This will help your doctor considerably.
    Compressed Discs/DDD - L2/L3, L3/L4
    Major Herniation - L4/L5
    Bulging Disc - L5/S1
    "no healthy 24 year old's back should look like this without a major trauma"
    MicroDisc L4/L5 Nov 7, 2013
  • dilaurodilauro ConnecticutPosts: 9,842
    Dont give up hope!
    You are in a catch-22 situation. It appears that no doctor or emergent care facility is going to order a MRI, and when your orthopedic doctor tried to submit one to insurance, it was rejected. With today's insurance companies, all doctors need to justify requests for any diagnostic test. So one of two things happened, the insurance company did not agree with the doctors request or the doctor did not provide enough rationale to warrant a MRI.

    Now, for the Catch-22, without a MRI and/or other diagnostic tests, no formal diagnosis can be made. And without that, requests for Short term disability, pain medications, etc are going to be extremely difficult.

    Your orthopedic doctor sent you to Physical Therapy. What was the reason's behind that? I read what your Physical Therapist stated, but that was done from clincial examinations and not from formal diagnostic tests. Some of the symptoms they describe were 'maybes' but could not be validated without those test.

    Meanwhile, you are in a lot of discomfort and pain. So, you need some help. Honestly, I would go back to your PCP and lay everything out on the table. Explain what you have been through with the orthopedic doctor, the ER, etc. Describe the discomfort and pain you are in and that it has become difficult for you to function normally on a day to day basis. Ask them for their help and what options can they provide for you. Never tell them what you want (ie I want a MRI, I want this or that medication, etc)

    Trouble here is associated with your age. Too many individuals in the medical field, think that just because you are young, you shouldnt have these problems. Take a look at one of my threads Item #8.
    Spinal problems and pain never discriminate when it comes to age. It is more expected that people later on in life will experience many of the 'normal' spinal problems. And probably the hardest thing you have to deal with because of your age is the need for relief in the form of pain medications. With all the DEA pressure on the medical field to justify many of their actions, its easy to be labeled a 'drug seeker' I dont know how to get around that, except for always being upfront and honest with all the doctors.

    Jessi, I can sense your frustrations and I know you are looking for help. Dont give up, try to stay as positive as you can.
    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
  • jessitaylorjessitaylor Posts: 40
    edited 01/17/2014 - 5:43 AM
    I've requested an appointment with a neurosurgeon who says he will order an MRI stat. I'm hoping that if I can at least get a diagnosis, I can prove I'm not losing it. I know I'll need a legal diagnosis before any short term disability can be approved but so far all we have is educated guesses based on my symptoms.

    I was sent to physical therapy based on the idea that I've got a herniated disc and loss of reflexes in my knees and ankles. The physical therapist seems to think a herniated disc is the least of my problems but that again, is only a hunch. After a long conversation with my insurance company, I have (in writing) that they denied it due to the fact that my symptoms present a need for intervention by a neurosurgeon, not my ortho. They said if they receive a request for an MRI from a neuro, on my behalf, they will immediately approve it. Fingers crossed, but it's difficult to get my hopes up again.
  • The ortho that sent me to PT was supposedly the best in town. He might be good at a number of things but nothing that applied to me. The PT was the worst 7 weeks of my life. We tried every exercise the PT thought would help but nothing did except a super duper SI-Loc belt. It reduces the sharp pains but does nothing for the burning/aching I have in my lower back and legs. I had a very interesting time last night reading through my records. I got Waddelled. That came out negative. At least I have that going for me. I'm so fed up with repeating my symptoms to only have the doctor not pay attention to them. I get more worried with every day that passes. I used to have a sharp burning pain in my heel but it's just numb now. At least that pain is gone but I know that, physically, I'm worse. And they tell me that my spina bifida isn't causing me problems. The physical therapist says otherwise. I think my ortho is trying to fit me into a textbook explanation and whatever symptoms don't coincide with his opinion, he just ignores.
  • dilaurodilauro ConnecticutPosts: 9,842
    While waiting for a doctor to totally look at you, your symptoms and take some action. Those actions might be very positive, or be prepared if they tell you nothing.
    Since I have spent a good part of my life dealing with chronic pain, I have looked at some many different ways in dealing with it.
    Eastern medicine differs from Western medicine in one basic way - no chemicals! But think about it, people living in the eastern world have dealt with so many similar problems as we have, but without chemical medications. How do they do it?
    I have a man for Thailand, who is a deep/soft tissue massage specialist, trained over 30 years from Thailand till now.

    I've been seeing this man for over 5 years now and he is mainly responsible for keeping me out of a wheelchair. We've gotten to know each other very well and he has taught me many things about eastern medicine

    • - Essential Oil Aroma Therapy ( There is an oil that can help with specific problems )
      - Music Therapy . He has given me relaxation music for Thailand that just gives me a calmer feeling
      - Meditation. I only wish I could learn how to really do this
    I have used these techniques and they have helped so much in making me more comfortable. It wont eliminate the pain, but is tries to train you brain into feeling more comfortable and without all that pain.

    Jessi, I just wanted to post this. Its always good to have different paths that you can take to make your day to day life more comfortable.
    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
  • I definitely agree. My huaband spends countless hours researching alternative therapies and different changes that would make everything more tolerable. Of note, I have a very high pain tolerance. Personal accomplishments include childbirth with no pain medicine, rattlesnake bite to the foot and I drove myself to the hospital, and a dislocated wrist in which I went grocery shopping before having it manipulated or popped back into place at the ER. I am strongly against narcotic pain meds for myself. I understand some people genuinely need them but my family has a history of addiction so I don't take any chances. I have tried MPS therapy which is absolutely amazing but only lasts a few hours. A TENS unit was not quite as good. Acupressure didn't help any but I could feel temporary results with massage therapy and acupuncture. I haven't found a chiropractor that will work on me because of the spina bifida. I have also tried meditation and it used to work to some extent but since the pain has progressed over the past few years, I haven't been able to do it. I'm hanging on to the hope that someone will do something if they get a good enough MRI. If that doesn't happen, I just hope I can findsomething else to look forward to. The support here is one of a kind, though. It really makes it easier to be able to read through past posts and learn what's helped everyone else.
  • If your insurance won't pay for an MRI, could you get a CT scan? They are a lot cheaper so I'm guessing your insurer might be more likely to pay for one. They might pay for an MRI if you have already had other cheaper scans (X-ray, CT etc.) CT scans don't give as clear an image as an MRI but a herniated disc will show up on either.
  • I am 31 and also have not gotten proper treatment. I was recently admitted in the hospital for pain and stayed for 5 days. The doctor that I see for Ortho says that he is not going to perform surgery because I am young and it is intense so it will be a lot. Meanwhile he refused to complete my short term disability paperwork and says that taking my mind of it will be good for me. I have herniated discs L4-5 and L5-S1, mild central spinal stenosis in L3-L4 with DDD in all three areas of the lumbar area. I also don't take any narcotics because I am afraid of dependency with my family history. I am feeling lost. I had the lumbar ESI and my pain was worst it sent me to the ER and my meds were increased for the zanaflex and neurontin. I don't understand why the orthopedic surgeon seems to think that moving is helpful for this. I also have sciatica down the left side with numbness all the way to my foot. I have done PT twice and each visit I can't get our of bed the rest of the day because of the pain being exasperated. I have not had any trauma either and everyone in the ER thought I was lying. I'm just looking for help and support because I'm at my wits end with this.
  • dilaurodilauro ConnecticutPosts: 9,842
    Welcome to Spine-Health

    One of the most important things that members can do is to provide the rest of the community with as much information about themselves as possible. It is so very difficult for anyone to respond when we do not have enough information to go on. This is not meant to indicate that you are doing anything wrong or violated any rule, we are just trying to be pro-active and get the information upfront so that people can start responding and your thread is more effective.

    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, The fact that your test results are negative does not mean that you are fine and without any concerns. Many times it takes several diagnostic tests and procedures to isolate a specific condition.

    Here are some questions that you should answer:

    • - When did this first start?

      . Year, Your age, etc
    - Was it the result of an accident or trauma?
    - Are there others in your family with similar medication conditions?
    - What doctors have you seen? (Orthopedic, Neurosurgeon, Spine Specialist, etc)

    • . Which doctor did you start with? Ie Primary Care Physician
      . Who are you currently seeing?
    - What Conservative treatments have you had? Which ones?

    • . Physical Therapy
      . Ultrasound / Tens unit
      . Spinal Injections
      . Acupuncture
      . Massage Therapy
    - What diagnostic tests have you had? And their results (MRI, CTScan, XRay, EMG, etc)

    • . Summarize the results, please do not post all details, we cannot analyze them
      . How many different tests have you had over the years? Similar results?
    - What medications are you currently using? (details, dosage, frequency, etc)

    • . Name of Medication
      . How long have you been using this?
      . Results
    - 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

    I also strongly suggest that you take a look at our FAQ (Frequently Asked Questions) which can be found at the top of the forum menu tab or by going to FAQ There you will find much information that will

    • - Help you better utilize the Spine-Health system
      - Provide pointers on how to make your threads / posts
      - Tips on how to create your avatar (your picture), posting images, etc
      - General pieces of valuable information

    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 it’s like a game of clue. Especially, when the diagnostic tests come back negative – no trouble found! Then it’s 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 Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com

  • I am 31 years old and have had back pain since 2005. I was diagnosed in 2/2014. My diagnosis are on the original post above, no trauma as I mentioned, my primary care physician is the first to diagnose me. I now see an Orthopedic Surgeon, pain clinic, primary care physician and I just completed my 2nd round of physical therapy. The comments from the surgeon are "the back surgery is probably not recommended given the extensiveness, my youth and increasing prevalence of Failed Back Syndrome. I use neurontin, most recently Lyrica, tramadol and zanaflex, also heat pads and ice packs for leg pain and joint pain and lidocaine patches
  • I think there is nothing worse than not getting a straight answer from your doctors. Not knowing exactly what is wrong so it can be treated and you can feel better. I am hoping that the neuro helps you. I like mine, even though my pain has not improved since starting with him I do feel like he listens and takes the time to talk and explain things to me. Hope you find some answers and a path to start healing!
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