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Gone from Bad to Worse to Better to Worse and now where is up?

thebeans594tthebeans594 Posts: 1
edited 12/20/2015 - 7:38 PM in New Member Introductions
I have everything from spinal Stenosis to cervical Spondylosis, Cervical Myelopathy, degenerative disc disease etc. Prior to my first surgery in August 2012, which was a cervical laiminoplasty C3/C7, I spent 9 months in doctors trying and find out what was wrong with me. I was having intermittent tingling in my arms and then in February 2012 I started to walk with a drop leg in my left leg on and off. Finally, in July 2012, I found a orthopedic surgeon who specialized in complex spine surgeries who diagnosed me with cervical myelopathy and said I if I didn't have surgery now that within a year I'd be in a wheelchair. So, with that being said I booked my surgery right on the spot. He initially wanted to do a 5 level cervical fusion C3-C6/C7 (I was born with C6/C7 fused together naturally). I didn't want to do the full fusion because I didn't want all that hardware in my neck. I'm petite 5 feet under 100 lbs (and didn't want to look like Frankenstein) so we ended up going for a cervical laminoplasty, which is a surgery designed to widen the spinal canal by bridging it open with plates and screws and by doing this surgery it would also provide more range of motion. the surgeon said also that the 3 discs that were herniated and crunching or impinging on my spinal cord should migrate backwards from the surgery. Supposedly the surgery was a success. (Do any doctors say it's not)? About a month after, the first surgery I felt better, and I was hardly taking any pain killers. I started increasing my activities. My surgeon said I should slow down and I thought I did because he didn't know me before. He said you can't run to the store, the doctors, the psychical therapist, etc. etc. At about 6 months, I knew the first surgery was going down hill when I walked back in for my 6 month check up clenching on and wearing my hard neck brace that I swore I'd never wear again. The neck spasms after taking the neck brace off were horrific. I was also seeing a pain doctor for about 10 months now after the surgery. My surgeon ran an MRI in April 2013 and saw nothing, a CT scan in June 2013 and said nothing and finally in December 2013, after continued complaints of pain, he ran a CT SPEC and Triple phase bone scan. He called me into to discuss so I know there was something in there but still to this day I don't know what it was. He said he was going to take my file to the next convention to discuss with other surgeons what they think should be done. Once my pain doctor who said it was off the Dilaudid after my SPEC test was done now was singing a different tune when she got the results of the test and she said you might have to be on pain killers the rest of your life, however, wouldn't tell me what my SPECT test said. My surgeon had taken my file to a convention where 1/2 the doctors said take my hardware out and 1/2 said fuse me. He said he didn't know if fusing me would be the answer, and I was starting to fuse together spontaneously or naturally (where you fuse on your own) and he didn't want to touch me. The last thin he signed off on was for a spinal cord simulator. I had another Neurosurgeon who also signed off for me to get the spinal stim but said they don't work for everyone and I should get another opinion. He said there was something that could be done but he didn't want to put his neck on the line (no pun intended) and it was risky. So with that being said I found another reputable surgeon who I thought was a neurosurgeon but who turned out to be another orthopedic surgeon who actually worked at the same hospital as my last surgeon. So it's now 3 years later, and I could barely stand on line for 5 minutes in the supermarket without taking 80 milligrams of Oxycontin, down to 88 lbs due to the pain and something had to be done. This surgeon performed a foraminotomy on C3/C4, laminectomy at C3/C4 put in two small rods at that level because my spine was unstable. Took out the hardware or screws at C3/C4 and C7/T1. I also developed severe cervical arthritis from the first surgery, which he supposedly the second surgeon cleared out. It looked as I was doing really well about a month or so after the surgery. I was down to half my pain medication upon leaving the hospital three days and seemed as I was gradually getting better. Then I decided to stop my medication, I went into severe spasms in my neck that I couldn't stand up and I was told to restart my medication immediately by my new pain doctor. Once I started the medication again, however, it wasn't working as good as it was. It seems as no pain medication is working now as well as it was. I have to fight with the insurance company to get anything medication at all. I was an active girl in tip top shape prior to my first surgery at 47. I just turned 50 right before the second in August 2015. Has anyone had this happen that they were getting better and then took a turn for the worse. I'm afraid there's no recovery in site. Has anyone had this happen with the medication not working too. If you've gone forwards then backwards is there anyone who's gone forwards again? HELP?
valerie evans


  • LizLiz Posts: 7,832
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    Liz -Spine-health Moderator

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
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