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Rapid progression from a young age....

Just trying to find some information,


I was first diagnosed with OA in my spine c6-7 in 2010, It was the only joint affect, it was a herniated disc osteophyte complex, I had surgery in 2011, for a fusion...

I felt great for 5 years...

Over the last 12 months I have had multiple MRI's to confirm significant Degenerative disc disease, and OA progression from c2-t4 (diagnosed cervical mri) and 4 joints in lumbar/sacral... (no thoracic mri)

So over the last 3 years I went from known 1 vertebra to ... all of them ?


Initial diagnoses I was 25... I am now 34 with the spine of a 90 year old man...


So what worked for you, How did you get past the phase of everyone telling you "We cant help try somewhere else". So far, Neurologist, orthopedic surgeons, chiropractors, have all turned me away basically saying too much there cant help. Massage therapist say they can help with the muscles, but it wont fix anything, or relieve symptoms. Physio basically said basically the same, We can help strengthen the spine muscles but not alleviate the peripheral neuropathy...


I am not looking for medical advice, more just complaining in hopes someone who has been in this situation could offer guidance on what specialties I should bring up with me PCP in hopes of furthering my hunt for finding a root cause as I am sick of hearing "There has to be an underlying cause for the rapid progression find that first" and "its all just poor genetics, you will never find a cause"


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Comments

  • RangerRRanger on da rangePosts: 1,030
    edited 03/22/2019 - 9:30 AM

    sorry suppadev, I just saw your post here and how I can relate to your journey.

    Back in 2006, when I was 50, my former spine surgeon said I had a spine of an 80 y/o man. In my early 20's I had symptoms of arthritis but had not been formerly diagnosed with a severe aggressive osteoarthritis till my mid 30's when a caring RN of my primary care physician begged my present Rheumatologist to accept me as a patient as at the time was not accepting new patients.

    After my neck fusion in 2008 and a wrist fusion in 2010 my neurosurgeon was led from the medical facility and the department was no longer able to deal with the adjacent joint's deteriorating in my cervical spine. I was told they would refer me but after a year or so of blowing me off they told me nobody would touch me, I was "S.O.L.", and I'd probably have to just go knock on doors and see if some "young gun" would take on my case. Seriously?, I couldn't believe my ears! And that wasn't an option.

    Today I am so thankful for that, in fact some day I will seek that doctor out and take him to lunch. He actually did me a favor as I did my homework and found one of the top orthopedic spine surgeons in the USA, if not the world at one of the best medical centers in the world and he accepted me back in 2011. Since then I have had two very long spine surgeries to stabilize my spine, one from C2 to T3 and the other from T-11 down to S-2 and fixated to my pelvis.

    My arthritis continues as aggressive as ever, it's destroying every joint in my body and it's very difficult. I go through major recoveries and work my butt off to keep fit and to be as I was before, then more issues arise. My disease is genetic, only 1 of my aunt's had it as severe as I do. One of my daughters has it and had symptoms early as I did.

    suppadev, if I can be of any help or support in any way, please PM me or contact me here. I get what you're dealing with.

    ranger

  • Suppadev,

    Keep pushing to find someone who can help you!  It's not acceptable for the profession to simply say they can't help you.  At a minimum you should be able to get a referral to a good pain management clinic that will consider how to proceed and improve your quality of life.  

    I believe I'm experiencing some rapid OA progression after my C5-7 ACDF in late 2017 (when I was 39).  Things went reasonably well for about a year although I was never pain free... Now I can feel the tell tale signs of stiffness and pain directly over the facet joints a level or two up.  Will have a consult in May to decide what imaging is needed and go from there.  

    If I had one main point to make here, it's that there are lots of potential pain generators in the spine.  Maybe surgeons have told you that surgery is not a good option given how much is involved.. you can still look at injections, RFA, medications, etc in order to get the pain down to the lowest it can be.  Particularly if the pain is mostly from arthritis, it would be worth seeing whether a pain management approach could help. 

    Kevin

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