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MPS & Lumbar Herniation - I'm New Here

Hi everyone! I've decided to sign up for this forum and website after a lot of posts and articles here came up in my Google searches recently. It seems like a great community and I'm hoping to get some support here.

I'm 24 years old, a married mommy of two (Benji - 3 and Kuromi - 1), and I work as a bookkeeper for a medical billing company.

So now that you know who I am here's the story of why I'm now on spine-health. I totally get it if you don't want to go through reading it, it's quite long winded. I'd really appreciate it if you would though!

It started in 2007 when I was only 19. Before kids, before a husband, before a career, way back then. I was going to a two year technical school to get my degree in InfoTech and working at Wendy's. I started to get sharp pains and some aching in my right lower back that would make it hard to put any weight on my right leg. It wasn't too often that it would happen and I pretty much brushed it off. I also got aching in my shoulder blade area. Same thing, brushed it off. Ibuprofen would solve the problem any time it came up.

In July of 2008 the pain in my shoulder blade flared up and it would wrap around under my arm to the front along my ribcage. My boyfriend (now husband) and I went to the ER since I had no medical insurance and therefore no primary doctor. They assumed it was internal, did an ultrasound, and found a 2.5 inch mass in my liver. I had it biopsied and it was benign. I had a gallbladder test done and that was normal. The process of seeing doctors, scheduling tests, and getting all this done took a couple of weeks and by the time my gallbladder test results came back my pain had gone back to a mild occasional ache in my shoulder blade so I stopped worrying about it and stopped going to the doctors.

Over the next couple of years I had two kids and got married. The pains were still there and slowly getting worse but always still manageable. During the pregnancy with my second child I was quite uncomfortable since ibuprofen is not recommended to take during pregnancy and I was depending on it daily by then. In August 2011 I was able to begin taking it again and I was okay again. Then around the beginning of 2012 the ibuprofen stopped working as well. Usually about twice a week I would be quite irritated by the aches and sharp pains in my shoulder blade. Occasionally it would be borderline severe enough for me to contemplate a trip to the ER.

I woke up one morning in late June to the pain in my shoulder blade being even worse and now my neck was included as was my upper arm. I gave it a day to see if it would subside, if maybe I had just 'slept wrong', but the pain persisted so I went to my local promptcare. They did x-rays of my neck and shoulder, which were both normal. They gave me a script for ibuprofen 800mg and flexeril 10mg, and referred me to a shoulder orthopedic.

The shoulder doctor immediately suspected that my neck was the culprit, so he sent me to the spine orthopedic and prescribed me some PT to start right away. August 1st I started PT and saw the spine doctor. The spine doctor ordered a cervical MRI and he assumed to see a herniation based on my symptons and the physical therapist assumed a herniation as well.

Cervical MRI was normal, six weeks of PT did not help. Cervical traction was a minor relief, and so was the tens treatment. Everything else seemed to make me worse. By this time I'm getting numbness, tingling, and weakness in my hand and arm, I am also having double vision and cluster headaches in my right eye. The pain in non-stop and my primary care doctor has prescribed tramadol since the ibuprofen doesn't work. Two times I go to the ER because the pain is so severe and I have a full MRI of my brain, and all three spine sections, ct scans of my chest and head. They find the disc herniation in my lower back which explains the lower back pain I've been having for years. Unfortunately that's not the most painful issue.

The spine doctor refers me to pain management. They do a nerve conduction study which is also normal. Nerve blocks have been done on my herniated disc, and trigger point injections have been done on my neck/shoulder. The herniated disc is still painful but seems to be improving/under control. They have diagnosed the upper pains as Myofascial Pain Syndrome. I have just been to see a new physical therapist for aquatic therapy and he is very skeptical about this diagnosis after his evaluation of me. I am now taking Flexeril, Tramadol, Topamax, Meloxicam, and Cymbalta. I am also using Lidoderm patches. Even with all of this I am still in severe pain most of the day. I push through work each day because I love my job and I am the only one working in my household. I have been to pain management twice telling them where I stand and they have said both times that since I am on the proper medications for MPS there is nothing more they will do. I have another set of both types of injections set for next month, hoping that they will work this time around. (I've had two sets so far of each, first times worked well of both, second times had no success.) I start the aquatic therapy right after Christmas.

I don't need a cure I can deal with pain management, but I do need the pain to be managed better, and the level of pain I have daily right now is not okay. I am also still interested in more testing and diagnostics as I am not feeling 100% sure that my diagnosis explains all of my symptoms.
Microlaminectomy and discectomy at C7-T1 on April 26th.


  • DaveFusionDDaveFusion Posts: 476
    edited 12/23/2012 - 3:55 PM
    Eaduby , hi and welcome.

    Firstly, your story was great. It certainly provided enough info to start dialogue without misunderstandings that often occur with only partial information.

    Here is some info on diagnostic testing. You have had quite a few already.

    I was reading in a spinal surgery book, where the author, a surgeon did an operation and the patient still had the original pain after the po. He then did a bone scan and found the problem that did not show up on the MRI. The patient then had to have another op. Wonder if a bone scan makes sense?

    So, you may wish to seek other opinions, it's always recommended, diagnosing back issues can be complex, so fresh eyes are good. Make sure you obtain copies of all reports from tests and also letters from specialsts to PCP, etc. these are yours and should be supplied without additional cost. Provide these to your second opinion specialists.

    Good luck. Others here may have more specific comments.
  • eadubyeeaduby Posts: 100
    edited 12/24/2012 - 9:08 AM
    Thank you for your reply, DaveFusion. The bone scan does sound like a potential idea. I have also been interested in a discogram after researching it and finding information from several people that their pain problems weren't diagnosed until they had a discogram.
    Microlaminectomy and discectomy at C7-T1 on April 26th.
  • Excellent that you are using the wealth of experience here and doing research.

    A single surgical opinion does not necessarily mean a definitive diagnosis.

    You could start new thread with a title that describes your issue in the appropriate neck forum which may elicit comments from those more knowledgable to your problem.

    All the best.
  • Thank you both for your input, DaveFusion I think I will go ahead and put a thread in a neck pain forum and see what responses I get.

    anelsen15 your response was a nice bit of a pick-me-up for me. I lately waver back and forth between 'should I just believe what they say' and 'should I listen to my body'. I know from how I feel that something more is wrong than what they say, and it is obvious that whenever they say MPS and I say well how does that explain this and this they have no answer for me. I have two little kids and even though I may potentially have to limit certain things I can do with them I don't want it to be this severe for the whole time they're growing up. The only way to avoid that is to keep pushing on and pursuing treatment and diagnosis.
    Microlaminectomy and discectomy at C7-T1 on April 26th.
  • Hi, are you still on this forum? I have not created a new member page yet,  but my undiagnosed constantly treated and failed similar pain that seems to ebb and flow with weather changes but is ever present at 4 on my best days for 6. Years and I can not get help. Chronic pain and no one helps,  I have 4 kids- many days feel like fails when it demands to be the center of my attention no matter how hard I try to ignore it. I've been googling for answers for years.
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