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lynn12 (@lynn12)

Chronic pain and spinal fusion

Spine Health | Last Active: May 14, 2021 | Replies (169)

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@sallymagint

I am exactly 6 weeks today post surgery of a 6 level fusion L1-S1. It is the 2nd fusion I had the first one being 23 years ago when they fused L4-S1. The first injury which lead to the fusion left me with severe nerve damage, it's weird though because 23 years of chronic back pain is a long time but it certainly doesn't feel that long. Over 23 years I had 3 dorsal column pain stimulators implanted to help with pain, which provided good relief however come with their own set of complications which would be the reason I had them removed this year, I worked full time for 20 of that 23 of those years in chronic pain, unfortunately 3 years ago I had to give up full time work and not long afterwards had to give up part time, after a fall which knocked me unconscious and identified an acquired Chiari Malformation. For me this meant the bottom part of the brain, the cerebellar tonsils herniated through the foraman Magnum into the spinal canal 17mm interrupting Cerebral Spinal Fluid Flow to and from the brain/spinal canal, significantly compressing my brain stem and medulla. Although asymptomatic initially (apart from severe concussion), 18 mths later symptoms were so bad I couldn't walk unaided, hold my head up supported, smile, laugh or cry from the severe headaches this caused, swallow without chocking, the list goes on and is the reason behind why I had to give up work completely. I traveled to the other side of Australia to have brain surgery to reduce and hopefully stop any further long term damage by the herniation and compression of my brainstem and consequently my spinal cord. The surgery performed was Posteria Fossa Decompression, a laminectomy, cauterization of the cerebral tonsils and patch grafted from my own dural to prevent the brain from slumping further. That was Oct 2017. In terms of the decompression surgery I was recovering reasonably well and many symptoms were reduced however my spine felt like a concertina that was going to collapse. I was unable to have an MRI due to my pain stimulator however after losing bowel and bladder control 8 weeks ago my Neurosurgeon made the call that the devices and leads had to come out so they could get the necessary scans to find the cause of the the spinal problems and bowel/bladder control. They discovered severe spinal instability and degeneration from previous undiagnosed Juvenile Disc Disorder. The old fusion was taken apart,then a laminectomy, discectomy, bone removal and grafts, finishing with rods and titanium screws to stablise the spine from S1-L1. Recovery has been tough and pain severe. I have a number of pain medications that I take daily. Thankfully I discovered meditation a number of years back which helps enormously and a positive attitude is absolutely essential. Don't get me wrong I have my days, I've been through severe depression and thankfully came out the other side of some very dark times. The pain is enough sometimes to drive anyone spare but overall I maintain that a positive attitude has more benefits than any drug could ever offer. I feel there's so much I need to share with people in the hope that it makes their experience dealing with similar conditions and circumstances easier. Its hard to know where to start so sometimes rather than overthinking it you just have to start somewhere in the hope things evolve from there and I find an effective way of helping people, however that may be.

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Replies to "I am exactly 6 weeks today post surgery of a 6 level fusion L1-S1. It is..."

@sallymagint I appreciate the details of your experience and knowledge. You might also be interested in taking part in the discussion group:
– Chiari Malformation type 1 https://connect.mayoclinic.org/discussion/chiari-malformation-type-1-20782d/

Your experience helped me feel better about my chronic pain. I am 9 months post scoliosis correction and 6 spinal fusions. I am trying hard not to call into depression due to constant pain.

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