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Recently Diagnosed

I'm 31 years old and have had reoccurring numbness and tingling in my right thigh for over 10 years and some mild discomfort in my lower back. I went to doctors, hospitals, emergency clinics for years and they would give me some pain pills or neurontin and send me on my way saying it's a pulled muscle pinching a nerve. I've spent the last year unable to lay down in a bed and sleep. I sleep sitting up in a chair.
I finally got insurance this past month and have been burning that card up like it's a no limit no bill credit card! I've seen my new primary doctor twice, my neurosurgeon twice, gotten an MRI done, several x-rays and a bunch of other tests and finally, I was diagnosed with RA, sciatica and lumbar spinal stenosis. My primary care doctor said he wasn't sure how I'm still mobile and truth be told, I'm not very mobile anymore! After my MRI the neurosurgeon immediately said surgery, rods and pins in your spine. My L5/S1 is dead, gone, totally compressed, my L3/L4 and L4/L5 are close behind. He sent me down the hall to be fitted for a back brace and then referred me off to a pain management specialist.
The pain in my right leg has become 10 fold worse than it ever was before since I've gotten the back brace. I only wear it when I'm up and mobile like they told me, and my husband keeps telling me it's normal for the pain to intensify before it gets better. I can't seem to stand up from a sitting position now without assistance because my leg pain flares hot and sharp and my leg tries to buckle. Walking in the upright position the brace puts me in has limited my ability to walk for more than a few minutes before i have to stop and lean forward over something.
I go in 2 weeks to see my pain management doctor and I'm very nervous. Having a name to put with my pain hasn't helped me like i thought it would. If i just knew WHY i hurt like this all the time, maybe it would give me some peace of mind that it wasn't all in my mind.
Today I get a letter in the mail from the disability office saying they spoke me with me recently (I haven't contacted them, maybe my doctor?) and asking me to fill out a couple forms to get my disability case started... This is the beginning of my journey and I'm already exhausted.


  • Saw my pain management doctor today. It seems the neurosurgeon i saw didn't even tell me half of what's going on.
    T10/T11, T11/T12, L3/L4 AND L5/S1 are all compressed, the two discs in the lumbar region have visible tears and are herniated. I also have kyphosis (sp?)
    He told me i need to walk with a cane, he'd have given me the rx for a rolator but he doesn't want me lifting it at all. So a cane it is.
    I go in on may 20th for a transforaminal epidural in the 2 lumbar discs with damage. He requested that i do this being sedated. The L5/S1 area is extremely tender and I've had a horrible experience with a spinal block in 04 during a c-section.
    My brain is everywhere right now, nervous as can be, scared, i just don't know what to do with myself.
    My 11 year old daughter is having back pain and i immediately called and set her up an appointment with her doctor. She's got 3 discs clearly visible on her spine, 2 between the shoulder blades and then 2 discs down from there a third one is visible. She's been scared to tell me because she doesn't want to end up in a back brace. Her appointment is 4 days before my procedure. My follow up its then in July, and if I'm feeling ok he wants to get a full back mri to see if there are any issues above the t10 that was not on my last mri.
  • That sounds really painful and scary and it's so sad to hear your daughter is facing similar issues. I really wish you both well and I hope you find relief in your surgery. I am 32, recently diagnosed with osteoarthritis, no where near as bad, so I cannot even begin to imagine the pain you feel. From the way you've expressed all of that it seems like you are a very positive and resilient young woman and I find that very inspiring. I can't give you any advice or contribute any knowledge on the topic as I have no idea but I just wanted to wish you well and a speedy recovery.
  • Im trying to stay positve, especially in the face of the fact my daughter may be dealing with some of the same issues. It's definitely been tough. Ive been dealing with back pain my whole adult life and the doctors ive seen previously (being uninsured) masked the pain and never looked for answers. Ive lost jobs over my limited movement and inability to sit straight up in a desk chair without pain. This current time when the pain set in it has lasted for over 2 years without a bit of relief. It is very annoying to me that my neurosurgeon basically blew me off without explaining the full situation.
    I have a good support system with my husband, children (11 and 10) and my father seems to understand. My mother on the other hand says its not that bad, im making a mountain out of a mole hill and people still function perfectly normal with back problems. I havent slept in a bed in a year or more because it feels like my back is breaking and the pain that wraps around my ribs makes it hard to breath. I wouldnt wish this on anyone, ever, but i do wiah sometimes people could live in our bodies for just 1 day and see what it really feels like.
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