Neurosurgeon refusing surgery.....long

Discussion in 'Fibromyalgia Main Forum' started by TKE, Nov 15, 2006.

  1. TKE

    TKE New Member

    Well I saw the neurosurgeon today.

    Little history:

    Back problems for 22 years. Back goes out a few times each year laying me up for weeks/months. Can't stand/sit/walk/etc. Muscle spasms/shooting pain in legs & lower back. I get better & resume normal activities until 2004 when a disc herniated in lower back. Since then it's gotten worse.

    August 28th it went again. This time my neck went too(3 buldged & 1 herniated) & I also ended up with MPS Triggers major in shoulders & upper back. 1 month of PT helped, but not fully.

    So doc sends me for MRI's of back/neck & a EMG Nerve study of legs/back. MRI report says nerve compression/DDD/Herniations/Buldging discs/etc in back & neck.

    EMG study shows nerve & muscle deteriation in both legs due to L5/S1 disc in back. Recommends surgery.

    Current Symptoms since back went out in August. Didn't have them before this:

    muscles jumping/twitching in legs & arms.

    Weakness in legs.

    Can't walk fast anymore.

    Legs shake going down stairs, weaken going up.

    Pain lower back.

    Can't stand for more than a few minutes.

    Walking causes lower back muscles to knot causing increased lower back/leg pain.

    Sitting too long increases pain in lower back/legs.

    Feet go numb.

    Have lost control of my toes. Can't move them like normal.

    Arms & hands shake making it hard to write or do fine motor skills.

    Neck pain/stiffness.

    Electric shock in neck.

    Hands tingle.

    MPS Triggers in upper back shoulders sending pain down left arm.

    Family Doc told me he though I'd end up with neck & back surgery. Also my lawyer I went to for SSD felt I'd be in surgery real soon based on my MRI & EMG reports.

    Neurosurgeon says even tho the reports say surgery, the actual MRI's films don't. Also he says my symptoms aren't lining up with all of the above I typed, as most pain from this is on the right side, mine is mostly left side. So surgery won't relieve me of this pain/muscle twitching/weakness/shaking/etc. He says he can see I'm uncomfortable/in pain. So he suggested a visit to a Rheumy hinting I might have a muscular disease of some sort. Suggested I have tests run.

    He also wants me to have another EMG nerve study (OH GOD...the pain!!) in 6 weeks. And then go for pain management.

    The Neurosurgeon I saw is the best in the area. He won't do surgery if he doesn't think it'll help you. I've heard nothing but good from others about him.

    My question is what the heck is wrong with me?? I've had Fibro for several years now & none of these weird tingling/muscles jumping/electric shock/ weakness/ things were present pre my back going out in August.

    I was expecting surgery feeling this would hopefully end some of my symptoms/pain.

    Anyone have any suggestions/opinions?


    Edit: I'm wondering if this could be a combo of DDD/herniation/nerve compression & Chronic MPS?[This Message was Edited on 11/15/2006]
  2. lovethesun

    lovethesun New Member

    I can't walk much and have had weakness in my legs for 6 years now.The thing is,I was once put on a corticosteroid and the weakness went away as long as I was on it.So I think a lot of mine is fibro Ihave problems with compressed discs and other things at c5-6 ,in thoracic area and lumbar region.linda
  3. PVLady

    PVLady New Member

    You could always get a second, or third opinion. Don't ever assume surgery will help you. Many times after back surgery people are worse. If this doctor does not want to operate there might be a good reason.

    These surgeries are dangerous and sometimes not successful. He might be doing you a huge favor not operating.

    Still, you could get more opinions. Just get copies of your MRI and see another back surgeon.

    Hope you are feeling better
  4. pain & symptoms, I have bulging discs & "arthritic changes" at C5-7, and herniated disc at L5/S1

    Honestly, the pain in my lower back & hips, has become nearly unbearable. I'm in bed 20/24hrs on a GOOD day right now, mostly 24/7 my pain meds don't do a thing for it.

    But, another honest thing, I want to say, really, and I learned the HARD way, (neurosurgeon, too btw..but, facial nerve pain, surgery) The surgeon who says "let's do it" right away, scares me wayyy more than one that says, "lets try this, this, this, and/or this first, and use surgery, ONLY as a last resort..." Any surgeon that jumps at the chance to cut us open---scares the sh** out of me, and will now send me RUNNING for other opinions..

    I think when considering such a potentially (good OR bad) life altering surgery, you should ALWAYS have no LESS than 2 opinions, anyways...really maybe 3 to be safe, then collect *all* the info/opinions, and decide..

    I wish I had NEVER let the neurosurgeon here touch me. She gave a convincing "sales pitch" I guess you could call it, on her knowledge of the surgery she was to perform on me...I bought it....even though she 'no longer does' brain surgeries (got tired of being called to the ER for 'every concussion' etc..all hours) THAT was my first clue. I was letting this woman cut my face open, go up near my eye, back towards my ear, to a nerve, through fluoroscopic guide, insert a balloon, inflate it for 60 seconds, (at one point, your heart stops in the surgery too! and you're given atropine!--not a small surgery! Outpatient or NOT)

    The balloon, while inflated, (had to be PRECISE in spot) was to *crush* the trigeminal nerve, thus ending, or at least deacreasing my facial nerve pain----was NOT the case for me! My pain was instantatneous, in the recovery room, 10times worse than before the surgery (though, hard to even imagine that before surgery-we'd tried anti-convulsants, but it was spreading, acrossed my face, and to all 3 branches of the nerve, my neuro honestly had my best intrest at heart...)

    Anyways-presurgery, my meds were 1800mgs trileptal, and then had JUST started Zonegran WITH the trileptal, before surgery....

    After surgery, I couldn't eat, touch that side of my face, I was put on two anti-convulsants, pain medication, steroids, & on & on...

    I've had two radiation procedures since that surgery, found out also, neurosurgeon--had done ONE other surgery of that type...and had been over 3 yrs! A total of three I think, in 7 yrs. She also hid or destroyed records, after avoiding me as long as she could, until my neuro screamed at her to see me. I lost weight, from not eating, didn't sleep, from pain. crying hurt, I'd had trips to the ER..

    Anyways, that's a whole diff surgery, but, still, a scalpel happy neurosurgeon- always be leery of one.

    My aunt, has had many neck & back surgeries, as she fell off a tank while working on it, back when she was still in the army--she has sooo many nuts, bolts, plates, & even cadaver bones in her neck, shoulders & spine now, her life consists of working (to support an even sicker husband), coming home, microwaving any quick dinner, popping her percocets & flexerils, in her recliner, then dragging off to bed, once possible. No life. She also has to take care of her mother-in-law, accrossed the street, along with her disabled husband..

    Anyhow, she's always told people now, to BE CAREFUL especially with neck/spine surgery...She truly had no choice left anymore, but, wishes* she'd had ANY other option, because, she hurts sooo much....and still has the problems she'd had before, some less severe, some new, some worse,

    Now, I have a friend, with MS (docs really prefer MS'ers & others with immuno-compromised systems,) avoid surgery as much as humanly possible....but, my friend had something in the Lumbar spine, that not only caused total numbness, but, led to foot dragging,,,,,STILL no surgery, but, then she was losing bowel/bladder control- so she HAD surgery, and was thrilled, with her outcome, so much, that she worried me, by 'signing up immediately' to have her C-spine done, also. I haven't spoken to her in a while, and don't know the outcome of the C-spine surgery--nor if she's had it, she had a crisis in between, and had a pacemaker put in...

    What meds do they have you on, or tried yet for all the symptoms (I KNOW we don't want symptoms to be "masked", for, in time, a lot of us just need more & more, for relief,) *neurosurgery*....I'm leaning towards meds, phys therapy, tens unit....anything my doctor can or will suggest, before I consider surgery. I hurt way too much already, and, my body rejects surgeries violently for some reason. I don't heal well, etc..

    Physical therapy helped my mom, with her lumbar spine, though she had a horrible time, at first, even beginning to get down in the floor to DO the exercises at home,..

    My aunt, has a lot of what you have, plus 2 other spinal conditions....her doctor has in the past given a tens unit, now the only thing she can function on, is Medrol packs, and her doctor worries about how often she gives them to my aunt...but....that's really all they can do, until something better comes along......hopefully it will, soon. Back/spine/neck pain & problems are the most common disability. We'd THINK they'd have many more effective alternatives to surgery to help us out.

    Especially also since it can hit really early...Mine did by the time I was 20..I turn 29 in January, and have NO idea where I'll end up, in just a few short years, much less 10, 12, etc...

    Best of luck to you, & most of all, I just wish you some kind of relief from it..safely.

    Take care.

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