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Hello! New 27yo Aussie with lifetime pain

LizaLouiseLLizaLouise Perth, Western AustraliaPosts: 14
Hello everyone!

I've been lurking in your lovely forums for about 4 weeks now, and I'd like to introduce myself and my story. I'll try to keep it concise.

Age: 27
Nationality: Australian
Gender: Female
Occupation: Desk warmer (A very passionate one, my work is very important to me!)

History:
  • Untreated & misdiagnosed trauma at age 9 (fell flat onto back on concrete, no scans or treatment received, just no sitting for 6 months) 
  • Chronic whole back pain throughout childhood managed through chiropractics
  • Childhood depression & anxiety, massive weight gain
  • Escalation at age 15, chronic debilitating pain in spine, ankles, knees
  • Maintained active, sporting lifestyle despite this
  • Diagnosed with os trigonum in ankles, hypermobility 
  • Diagnosed with Schuermanns disease, kyphosis and lordosis. Degeneration of discs throughout, extra partial vertebrae in lumbar spine, commentary made on 'stress fracture' in mid to upper back and sacrum/cocyx stress fracture and partial fusion 
  • Pain managed with exercise (strength building) & chiropractics 
  • Ankle pain treated with orthotics & steroid injections
  • Escalation of depression & anxiety, treated through CBT & anti-depressants 
  • Knee pain escalation to age 18, scan revealed full circumferential cartilage tear, removed through arthroscopy 
  • Continued escalation of back pain to age 20, forced to retire from high level sports 
  • Development of nerve pain in right outer thigh aged 20, continued worsening
  • Pain managed as adult through chiropractics, exercise physiology 
  • Pain escalation at age 24 following commencement of full time desk warming, development of nerve pain in back of neck
  • Pain identified as being caused by lack of blood flow to anterior serratus muscles due to mid back nerve damage, forced to cease weight lifting 
  • Failed management through physiotherapy & massage therapy
  • Continued 'flare ups' of low back pain throughout adult life, managed through exercise (walking, Pilates) and posture
  • Identified 'Ehlers Danlos Syndrome' as potential diagnosis - not discussed with PCP
  • Escalation of depression & anxiety, treated with anti-depressants & limited CBT 
  • Grief at age 26 - death of Mother (aged  57, suspected EDS, no clear cause of death) 
  • Consideration of bariatric surgery to treat now restrictive obesity 
  • Severe low back & associate leg nerve pain flare up  - non-responsive to rest, painkillers, TENS etc 
  • MRI (lumbar only) shows similar findings to previous; pseudo-articulation bilaterally at L5/S1, disc desiccation with loss of height at T11/12, T12/L1, L1/2, L4/5. Disc extrusion with thecal sac indentation at L1/2, L4/5. Annular fissure L4/5. Bilateral facet joint hypertrophy at L5/S1
  • Appointments sought with Neurosurgeons and Orthopedic surgeons 
  • Neurosurgeon: will shave protruding L4/5 disc if I lose 25kg, then perform spinal fusion if I lose 50kg. 'Might help leg pain, probably won't help back pain'
  • Referred to pain specialist for epidural (awaiting appointment now) 
  • Orthopedic surgeon: Can perform disc shave at L4/L5 (will fix leg pain, probably make back pain worse), doesn't recommend fusion, advised to pursue bariatric surgery
  • Bariatric surgeon appointment scheduled next week
Current Medication:
  • 2x 5mg Endone per day
  • 1x 75mg Lyrica at night
In sum, most things hurt most of the time! My normal state is aching in the small of my back, burning in my right leg, stabbing in my right shoulder blade and tingling/icey pain on the back of my neck, nerve ache in left shoulder. 

I'm working on pursuing significant weight loss to ease pressure, and am hoping the epidural will make the lower back pain manageable without narcotics. My plan is to re-assess disc surgery once some weight is lost, as while the nerve pain is awful, it doesn't prevent me from working.

A big thank you to anyone who managed to read all of that, I hope to see you around in the forums! 
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Comments

  • MetalneckMetalneck The Island of Misfit toysPosts: 1,772
    edited 12/01/2016 - 1:48 PM
    LizaLouise,

    Welcome to Spine-Health!

    You do do have a number of varied concerns and challenges - You will be best served by reviewing your condition with a licensed M.D. or D.O. - Ortho or Neuro specialist in spinal issues. I will go out on a limb her and state that you past condition(s) and your current situations - were and would still be poorly managed via manipulation.  Perform a search on ligamental laxity and see what a known cause is.

    I did read your entire post - but I am not qualified to give you "advice" on each of the issues you mentioned.  My personal opinions on each of your bullet points - could take up a novel - but again would do nothing medically to move you forward.

    It does seem that presently you are working with the appropriate providers and taking with correct steps. Hopefully other members will chime in the most thought for you.

    With Concern,

    MN
  • LizaLouiseLLizaLouise Perth, Western AustraliaPosts: 14
    Thanks for the welcome and response!

    I'm working closely with my doctor and following the trail of specialists as they come up. Ligamental Laxity certainly fits the bill, I think the doctors here use the term interchangeably with 'hypermobility'. 

    Would never be so presumptuous as to ask for advice, but appreciate your message and concern :) 
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  • MetalneckMetalneck The Island of Misfit toysPosts: 1,772
    LisaLouise,

    You are welcome - only wish there was more I could do to help.

    Please keep us posted??

    Warm Regards,

    MN
  • LizaLouiseLLizaLouise Perth, Western AustraliaPosts: 14
    edited 01/27/2017 - 10:11 AM
    By way of an update, I am ticking along the bariatric surgery proccess towards surgery on Feb 28th, and today I had my first epidural and nerve root sleeve injection. I've also started CPAP therapy and have found that after consistent use my pain started to subside.i struggled to use it for four days and the pain returned- it's too early to call it anything but coincidence, but low blood oxygenation can prevent healing. 
  •  Hi LizaLouise, best wishes on your goal towards bariatric surgery. It's not easy to lose weight when you're in constant pain. You probably would lose pounds faster if you stop the Lyrica. It made me overweight and my shoes stopped fitting within the first month.I felt spaced out on it and it didn't help my nerve pain or fibro. I switched to Savella for chronic pain and fibromyalgia, and I gradually lost the weight. It put more pressure on the spine unfortunately. 

     I know care is different in Australia but I'm worried about chiropractors, especially with nerve pain. It helps some but I don't feel they are qualified to deal with complex spinal issues. If I had to pick between an orthopedic surgeon and neurosurgeon, I would go with the latter since I have permanent nerve damage. This all comes from my lengthy experiences in treating back pain and sciatica. 

     Muscle relaxers are very handy when dealing with back pain. You'll find a lot of discussion on The Blend which is a combination of meds for every aspect of spinal pain. I hope all goes well with your upcoming surgery and you find relief soon. Take care

     
    Ol' Spiney..Micro-D L4-L5, TLIF L4-S1 -post op central HNP L4-S1,stenosis, retrolisthesis, EF, facet arthropathy, lumbar& cervical DDD. FBSS- Medtronic pain pump & SCS
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  • hello meydey,

    I hope i'm doing this correct.. i'm not to hip with computers.. I also have severe nerve damage from ''many'' back surgeries.. I was wondering if you had the BAK (think it's a cage) put in.. . I've had about 8-10 back surgeries.. the last was the BAK. ever since that, I've had SO much verve damage and constant pain.. I have tingling, pins and needles, severeburning and shocks feeling like it was an electric shock ! .. my neurosurgeon sent me to a pain management dr. I;ve been going to her for about 4-5 years.. I get Percocet,cymbalta,Neurontin, &daulada, (not sure about spelling without looking it all up)

    I also get injections only over certain amount of time.. I haven't been able to walk hardly all these years.. I have to use a walker if any long distance.. also, when I first get up in morning, then ween myself off after couple hours.. I have ALWAYS lead a very active life so to be like this, is so depressing.. BUT I try to do as much as I can.. i'm very stubern,when it comes to sitting & not do anything..

    i'm new here & didn't really know how to reply to a post.. SO, thank you if you read.. hope to hear from you.. and hope your pain improves..

    THANKS to all that read

    afteralltheseyears


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