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4 years with misdiagnoses, wanted to share that I'm finally getting along

CTopherCCTopher Posts: 1
edited 02/18/2015 - 9:56 PM in New Member Introductions
Hi there, and sorry this is so long!

It has been almost 4 years since my first emergency room visit for my pain, and finally late last summer started getting the correct help. It turned out I had two issues going on, a thoracic herniated disc and SI joint pain, but both were misdiagnosed.

The first issue presented at its worst in 2011. I went to the ER with upper back pain on the left side, pain down the left side and into my abdomen, and shooting pain into my bladder on the left side, especially when I pushed to urinate. To me, as a frequent kidney stone sufferer, I thought it was another stone. I'd been having pain like this for years, would sometimes pass a stone, and figured this was another. A CT scan revealed 3 stones in the left kidney but none appeared to be causing any blockage. The amazing diagnosis from the ER doctors and nurses was that I was a drug seeker! I was ignored for 6 hours with almost no help and then given a lecture not to come back seeking drugs there ever again. My jaw dropped to the floor. I had a $2500 deductible that I was going to have to pay for this? Finally the nurse came back and said the doctor would write me a prescription for Vicodin and I told her to forget it, because Vicodin has never helped me. I asked for a prescription for toradol and the nurse looked at me like I must be the dumbest drug seeker on the planet. After asking for toradol, an anti-inflammatory, the doctor came back and started asking me some more questions. She said to follow up with my regular doctor to try and narrow down the cause.

So I made an appointment with my regular doctor who listened to me for a few minutes and then told me that he wasn't going to write me any prescriptions and sent me on my way. The ER had apparently noted I was a drug seeker. Still thinking I had kidney stone pain that would come and go I simply fought through it. I got prescriptions for toradol any time I could, since I am allergic to motrin and aleve, and that got me by. I made 20 tablets last about a year and took a lot of tylenol.

Two summers ago I started getting right side pain in my butt, shooting up into my lower back, and down my right leg into my foot. The right side of my thigh and the right side of my right foot were numb most of the time and 10 minutes of sitting would cause my right leg to hurt and go to sleep. I really just figured I was working too hard and it would work itself out.

Last summer these two issues got to the point where I could barely walk, barely function, and yes, dark thoughts started to enter my head. I didn't want to go to the ER after my last experience, or back to my regular doctor, so I started making phone calls. Call after call I explained my pain, told my history, and one after another I was lectured that they weren't going to write any prescriptions, even though I never asked for any. I just wanted to get help. Finally in late August, almost in tears, I spoke with a nearby doctor's office and they said come in right then. I was in shock, got in the car and went over, explained what was going on, the doctor said it sounded like kidney stones and took an xray. The xray showed 3 stones on the left side and 2 stones on the right. I got a CT scan done the next day and saw a urologist the next Monday. Well, the urologist looked at the CT scans, told me that the stones were unchanged from my 2011 ER visit, and lectured me that he wasn't going to write a prescription!

So I went back to the first doctor who took care of me so quickly and he told me to not worry, we would figure it out. He wondered out loud if maybe I had a back problem so took 7 xrays of my spine right there in the office and noted there were signs of arthritis, bone spurs, and scoliosis in my upper spine. He ordered a lumbar MRI because the CT scan had noted I had 2 large hemangiomas at L2 and L3 and thought the leg pain, which he said sounded like sciatica, could be from a herniated disc.

This was the first time anyone had suggested a disc herniation, so I came home and googled and found this website and was amazed that all of this could be from my back. But it didn't seem like lumbar symptoms and sounded more like a thoracic herniation. I called the office the next day and they said they would try to get the insurance to cover a thoracic MRI as well. They did, and the two MRIs revealed a protrusion at T9-T10, as well as 2 protruding lumbar discs, 2 other bulging discs, and the two large hemangiomas, all with varying degrees of nerve impingement showing on the MRI. The doctor ordered physical therapy, and after one visit things went from bad to much, much worse. They did lumbar traction that caused my LEFT leg to go so numb I could barely lift it, and the pain on the left side of my stomach became so bad I almost threw up. I called the doctor and he told me to try therapy one more time which I refused. I never had symptoms in my left leg and now I could barely stand or walk. So I called a back pain clinic at a local university and went there.

At the back pain clinic they ran me through a battery of stretching, mobility tests, and sensory tests to see where I was having numbness and pain and told me that the train wreck shown on the lumbar MRI was NOTHING. I had absolutely no symptoms to warrant messing with my lumbar, and doing lumbar traction disrupted the normal balance that my body had adjusted to over years of hard work. Instead they said all the sciatica type pain and shooting lower back pain was from my SI joint. They ordered aquatic therapy to work on the SI joint and 6 weeks later the right leg and right lower back pain was completely resolved. I had renewed energy, could run up and down stairs again even, and felt like I had my life back.

The pain that seemed like kidney stones was indeed from a thoracic disc herniation at T9-T10. I'm still dealing with that but at least know what it is from. I've been taking gabapentin, 300mg 4 times a day, and tramadol at night to help me sleep. I have toradol on hand for the times when the pain gets me to what I call the emergency room level.

After all of this I feel like I have my life back. I'm 48, and wondered how much longer I could go on. I don't feel that way any more :)

Thanks for reading and letting me share. Hopefully it might help others who have been in a similar situation or have similar things going on.



  • LizLiz Posts: 7,832
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  • itsautonomicitsautonomic LouisianaPosts: 1,807
    edited 02/19/2015 - 8:51 AM
    Chris, congrats on keeping going until diagnosis , that is no easy feat. But this is what the correct diagnosis can bring, new hope and proper treatment. Sorry you had to get the drug seeker bit and reach those dark thoughts, but those who have been suffering undiagnosed for years often do.
    Glad to hear you are doing better.
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
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