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Just need to hear people's opinions

kat16kkat16 Posts: 4
edited 08/20/2015 - 6:28 AM in Back Surgery and Neck Surgery
** Short version: Chronic pain for over a decade, last flare up unbearable, scheduled 3 level fusion, now pain is gone, thoughts?**

**Full Story**
I am going to be 43 next month. I have mild to moderate degenerative disc disease in my lumbar spine and Chronic Fatigue Syndrome (CFS). About 10-12 years ago, I injured my back, bulging discs at L3, L4, L5 & S1. Nothing I have done has had any permanent benefit. I have tried SO VERY MANY treatments and nothing seems to work. I have seen surgeons before that have dismissed me saying the MRI doesn't show enough evidence to confirm the type of pain I am having. Meaning, according to the MRI I shouldn't be in the amount of pain I am in. So, the solution was pain meds (as a young mother, that was not an option) The pain comes and goes. I have done physical therapy several times and each time, I plateau and stop making improvements. I have learned to live with it. When I get flare ups, I have learned what to do to manage.

About 2 years ago I saw another surgeon who recommended the infamous discogram (Nope!). Then said my chances of a successful surgery were 50/50. (NO WAY! I thought) So, instead of pursuing this any further, I signed up for Reformers Pilates. I lost 25lbs, was doing pilates twice a week and had reached a point where I was in so little back pain I thought I was healed. I even skied for the first time. I was consistent to a fault in pilates for a year and was really doing great.

Then a CFS flare up kept me from pilates. I started putting the weight back on. And, I was under a crazy amount of stress. (It always seems my back pain would flare up when I was under emotional stress) That was all it took for my back to go out - and nothing I was doing was helping it get better. So, I went to the doc for a steroid pack (something that had helped in the past) No luck. We tried muscle relaxers and two different narcotics with no relief, in fact, the pain was getting increasingly worse. The pain meds weren't touching it. Keep in mind that I hadn't taken anything stronger than an Aleve for years. We scheduled an appointment with a surgeon, got the orders for the discogram (no avoiding it this time) and an Rx for Dilaudid. By the time the discogram rolled around, I was in so much pain all I could do was cry. No relief. If there was a hell, I was certainly in it.

Discogram came back positive for 3 levels (originally it was thought "maybe" just one) Again, the MRI doesn't show a clear reason for the amount of pain I am in. Doc gave me a stronger dose of dilaudid and that seemed to relieve the pain.

So, now, I am scheduled for a 3 level fusion and guess what? Pain. Is. Gone. !!!!!! Really????

I haven't taken ANY type of pain killer for a couple days now. I am torn. On one hand, I NEVER want that horrible pain to come back. But on the other hand, it seems pointless to go in for surgery when I am not hurting. I keep thinking if I loose the weight again & get back into pilates then maybe I can avoid it. But then again, with CFS, I can't really count on that. My husband has the theory that my CFS is really just chronic pain... who knows. I don't want that horrific pain back but I do want to know that this surgery is necessary.


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  • SukhreSSukhre San Diego, CAPosts: 181
    I am not a doctor and my comment should not be considered as a medical advice. But my idea about CFS is it has some overlap with fibromyalgia (it comes with unexplained pain). If your pain does not match MRI (and spine pain) and if you do not have current pain, why not delay the surgery and try other things. I hear more than 50% adults have some type of problem in their lumber or cervical area, as long as its not touching the spinal root, many does not feel the pain.
    MRI shows C4-C7 severe steonosis. Pain in hand.
  • There is no way I would have surgery if your not having any pain. The number one reason for failed back surgery is misdiagnosis. I have had 5 surgeries on the same disk you are having problems with.

    Just by reading your post it seems like when you drop the weight and the stress is low the pain eases off. People do not realize how much "stress" plays a part in back pain. When your under stress your lower back muscles and nerves are constantly engaged, sending signals to your brain. My suggestion would be to delay that surgery. I would give anything to go back to before I was ever cut on and just have one day without pain!

    Read all these peoples post about how much pain they are still in after their surgery. Read my story "PLIF gone wrong turns into a blessing". I have permanent nerve damage from a surgeon that cut a nerve in my back. The nerve he cut didn't have anything to do with the pain I was having. I could go on and on.
  • If your reason for having the surgery is so that the pain will stay away then I suggest delaying it. Most people on this forum can tell you that surgery is a last resort and for many of us the pain can get worse after it.

    My neurosurgeon makes it quite clear that his role in my treatment is to maintain as much functionality as he can and that controlling / reducing pain is the job of my pain management doc. Before going in for my first fusion surgery he told me that "if" I was lucky there might be a reduction in pain but that the main reason for the surgery was to stabilise my spine.

    If you are not in pain now, and you have found a way to control your pain without facing a lifetime of drug dependency then why would you want to go through with the surgery. If the pain comes back and you can't get it under control then you could reconsider then.

    I would give anything to not have had to go down the surgical route. Once you start down that path there is no turning back.
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