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Thread: Neurosurgery

  1. #1
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    Neurosurgery

    My symptoms are gradually worsening, and it is looking like I have lumbar spinal stenosis. I am not in severe pain, mainly have difficulty walking. I always worry about my future. Neurosurgery for this condition is generally not recommended for those of us with spinal fusions, is that correct?
    1966 fusion in Buffalo of 11 thoracic vertebrae, with Harrington rod

  2. #2
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    i am assuming you had those harrington rods for your scoliosis...you did not say what correction you got..?

    do you have other things going on with your lower back, like disc disease, besides the stenosis?
    do you have an orthopedic surgeon/specialist?

    jess
    Last edited by jrnyc; 05-14-2010 at 08:11 PM.

  3. #3
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    Quote Originally Posted by JulieBW View Post
    My symptoms are gradually worsening, and it is looking like I have lumbar spinal stenosis. I am not in severe pain, mainly have difficulty walking. I always worry about my future. Neurosurgery for this condition is generally not recommended for those of us with spinal fusions, is that correct?
    Hi Julie...

    I think it is just the opposite. If you're having trouble walking, that's a symptom of a serious issue. Decompressions without fusion are generally not recommended for people with scoliosis, as they can destabilize the spine.

    I suggest that you make an appointment to see a good scoliosis specialist.

    Regards,
    Linda

  4. #4
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    Thanks Linda, I agree with your conclusion. I just need a better understanding so I can explain this to my family practice doctor, so I can get an out-of-area referral. Thanks to these forums, I have found somone in Buffalo, just a couple of hours away. I learned through a visit two years ago to one SRS scoliosis specialist in Rochester that those credentials aren't enough. He wasn't helpful at all, though my early symptoms were not typical even of anyone here. But Dr. Christopher Hamill also lists flatback, degenerative spine issues as his specialties, so I hope he can offer me a clearer view a little way into the future.

    Jess, thanks for your response. I don't know how much correction I got 40-some years ago. They just told me I would not have to worry about this problem in the future - yeah, right. They didn't know the future at that time, but it dismays me that some docs are still offering that false reassurance.
    Last edited by JulieBW; 05-15-2010 at 04:42 AM.
    1966 fusion in Buffalo of 11 thoracic vertebrae, with Harrington rod

  5. #5
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    Hey Julie
    is NYC impossible for you to travel to...? i take the train to NYC every month to see pain management doctor...also, my excellent scoli surgeon is there...long story short, i have thoracic curve of 42 degrees and lumbar of 62, along with degenerative disc disease, spinal stenosis at L4-5, arthritis of spine, rotation, listhesis, and hypokyphosis of thoracic spine. i've been offered minimally invasive surgery to "clean out discs" and to put in rods and screws for fusion...basically from T11 to pelvis

    i just thought you will have a greater choice of excellent scoli surgeons/specialists in the city, as opposed to upstate NY....no offense, but i guess as a born and raised and lived most of my life New York City native, i figure the best is there...

    i hope you find a doctor(s) who can help you...i know how frustrating it can be not to be able to walk or stand for any time or distance!
    i am wondering if you would have any use for a pain doctor, even as an interim aid to try to find some temporary relief...?

    best of luck
    jess

  6. #6
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    help in Buffalo

    Hi Jess,
    NYC is an 8 hour drive, which would eat up considerable time and expense. I'm not convinced that is necessary. Plus navigating the city is not something I wish to tackle. I don't even know I will ever need surgery. I just want advice and thoughts at this point, which would not be available from the local neurosurgeon, but available in Buffalo. At the time of my surgery, my parents were told that there were only 3 doctors in the country doing scoliosis surgery with rods: in Houston, Boston, and Buffalo. My surgeon was doing a fusion every week. I'm imagining a certain percentage of those people has developed problems over the years, though they don't post here. I believe there is someone there giving them good treatment, and I hope the doc I plan to see is part of that system. I'm not in severe pain, don't take anything at all for pain.
    Last edited by JulieBW; 05-15-2010 at 09:50 AM.
    1966 fusion in Buffalo of 11 thoracic vertebrae, with Harrington rod

  7. #7
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    LindaRacine
    If you're having trouble walking, that's a symptom of a serious issue. Decompressions without fusion are generally not recommended for people with scoliosis, as they can destabilize the spine.
    Linda could you elaborate on this, please? May I ask where you work and what your job is?

    I would think there are all kinds of problems with walking. For instance, I have trouble walking . Hence, I use a walker for anything more than moving around the house or from (handicapped) parking to a Big Box store where I depend on a shopping cart. This is from pain, I presume from compression of degenerated lumbar disks. I also have pain (and consequent difficulty) standing without support - even to brush my teeth, for example.

    Are you meaning this kind of trouble walking/(standing) or something else? What causes for difficulty walking could be "dangerous"?

    Also, I had a decompression for cervical spinal stenosis instead of a standard fusion (which I was roundly urged to have, as four years ago, that was considered the only safe way to go for any and all - nothing to do with scoliosis).

    What do you mean, that it might destabilize a scoliotic person's spine to have decompression without fusion? Are you distinguishing between the cervical spine and the rest of it? Nb. I see many surgeons separate their practice accordingly - for a good reason, I suppose, presumably having to do (at least in part) with functional differences in treatment and pathology between the neck and "the rest".

    So far as I know, my curves don't extend into my cervical spine. As you surely know, cervical spinal stenosis is the most dangerous kind because the higher up the compression is (as well as any potential injury), the more risk there is of damage "downstream" if anything goes wrong.

    I am not at all sure that the mono-minded (but brilliant) neurosurgeon who decompressed my cervical stenosis, was aware that I have scoliosis. He was THAT focused on the area of surgical interest to him. I know when I saw him last year (the first time he looked at MRIs of all my spinal levels), he said, he didn't dare do any more work on my spine, for fear of "destabilizing" it.

    As I write, I'm trying to think of a graceful way to call and ask him if he thinks my neck is any way dangerously unstable now....
    Not all diagnosed (still having tests and consults) but so far:
    Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
    main curve L Cobb 60, compensating T curve ~ 30
    Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

  8. #8
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    Back-Out,
    I can't answer most of your questions, but this thread is discussing lumbar, not cervical issues. I have mostly sensory loss and distortions in my knee and foot, which are uncomfotable and slow me down, but I would not immediately conclude they are serious. The tingling in my thigh doesn't bother me much, my foot will occasionally claw, and I occasionally get shooting pains when I bend over on the outer surface of my foot, near the heel. I constantly have a sensation of tightness around my knee and foot. My next step is to see a neurologist.
    Last edited by JulieBW; 05-21-2010 at 01:16 PM.
    1966 fusion in Buffalo of 11 thoracic vertebrae, with Harrington rod

  9. #9
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    Sorry for the confusion, Julie.

    I was addressing my question to Linda Racine who said something that I feared might pertain to my cervical decompression (without fusion). It was a thread derailment, but at the moment, I thought it made sense to ask for clarification in the context of her remark. In retrospect, I should have PMed her.

    I hope you get the clarification you need from a neurologist, and that it gives you peace of mind. I see a neurologist every few months beginning after a car accident eight years ago when I decided to see a neurologist instead of an orthopedic specialist to check things out. My spinal problems turned out to be in both areas.

    I wish there were a good orthopedic spinal specialist in town but none feels he can deal with my deformity issues. OTOH I get a different and helpful perspective from my neurologist and I hope you do too.

    Best regards!

    FWIW I have lumbar spinal stenosis in addition to cervical.
    Not all diagnosed (still having tests and consults) but so far:
    Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
    main curve L Cobb 60, compensating T curve ~ 30
    Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

  10. #10
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    It's OK Back-Out. You can hijack my thread anytime. We are all looking to solve our own problems, and it is difficult to sort through everything.

    Linda is the moderator of this forum. She is very helpful knowledgeable, but also a patient, not a doctor or other medical person.
    1966 fusion in Buffalo of 11 thoracic vertebrae, with Harrington rod

  11. #11
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    Hi Julie, I had similar symptoms to yours in regards to walking etc but i was in a lot of pain. So much so that i used to have injections at L4/5-L5/S1. I was under the care of a Neurosurgeon up until my curve deteriorated by 8 degrees in 8 months. In January '09, i was going to undergo a decompression at these levels based on my curve being 50 degrees, but my Neurosurgeon wanted the opnion of a Scoliosis Surgeon before going ahead, as he wanted to know if this would be safe to do so in regards to stabilization. Dr Hall advised that it wouldn't be a problem, but wanted an updated xray before confirming to see at what rate if any the curve was increasing. This is when we found out that the curve had indeed progressed and therefore decompression was no longer an option and we needed to go ahead with scoliosis correction surgery within the next 12 months. I had no previous fusions, so i don't know if this helps you. I agree with Linda about getting another opinion by a Scoliosis surgeon. Best wishes.
    Vali
    44 years young! now 45
    Surgery - June 1st, 2009
    Dr David Hall - Adelaide Spine Clinic
    St. Andrews Hospital, Adelaide, South Australia
    Pre-op curve - 58 degree lumbar
    Post -op - 5 degrees
    T11 - S1 Posterior
    L4/5 - L5/S1 Anterior Fusion

  12. #12
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    Vali,
    Thanks for your post. Pain like yous could be in my future, who knows? Right now I am grateful that I can do many things including working in my garden like I am doing today. Here it's time to get those veggies in!
    1966 fusion in Buffalo of 11 thoracic vertebrae, with Harrington rod

  13. #13
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    Quote Originally Posted by Back-out View Post
    LindaRacine


    Linda could you elaborate on this, please? May I ask where you work and what your job is?

    I would think there are all kinds of problems with walking. For instance, I have trouble walking . Hence, I use a walker for anything more than moving around the house or from (handicapped) parking to a Big Box store where I depend on a shopping cart. This is from pain, I presume from compression of degenerated lumbar disks. I also have pain (and consequent difficulty) standing without support - even to brush my teeth, for example.

    Are you meaning this kind of trouble walking/(standing) or something else? What causes for difficulty walking could be "dangerous"?

    Also, I had a decompression for cervical spinal stenosis instead of a standard fusion (which I was roundly urged to have, as four years ago, that was considered the only safe way to go for any and all - nothing to do with scoliosis).

    What do you mean, that it might destabilize a scoliotic person's spine to have decompression without fusion? Are you distinguishing between the cervical spine and the rest of it? Nb. I see many surgeons separate their practice accordingly - for a good reason, I suppose, presumably having to do (at least in part) with functional differences in treatment and pathology between the neck and "the rest".

    So far as I know, my curves don't extend into my cervical spine. As you surely know, cervical spinal stenosis is the most dangerous kind because the higher up the compression is (as well as any potential injury), the more risk there is of damage "downstream" if anything goes wrong.

    I am not at all sure that the mono-minded (but brilliant) neurosurgeon who decompressed my cervical stenosis, was aware that I have scoliosis. He was THAT focused on the area of surgical interest to him. I know when I saw him last year (the first time he looked at MRIs of all my spinal levels), he said, he didn't dare do any more work on my spine, for fear of "destabilizing" it.

    As I write, I'm trying to think of a graceful way to call and ask him if he thinks my neck is any way dangerously unstable now....
    Hi...

    As your neurosurgeon mentioned, doing only a decompression on the spine of someone with scoliosis has a high risk of destablizing the spine and causing the curve(s) to increase.

    I think I may have misunderstood what you were originally asking. What I was trying to say is that if one has any neurologic symptoms (e.g. sciatica, numbness, tingling) that's a solid reason to opt for surgery. Once one starts having neurologic symptoms, one is always a risk of the symptoms becoming permanent.

    I work at UCSF as a research associate in the orthopaedic spine center. I have no medical training, but I see approx. a dozen scoliosis patients weekly. Oh, and I've had scoliosis surgery myself, and am facing revision surgery at some point in the future.

    Regards,
    Linda

  14. #14
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    Thank you for the elaboration, Linda!
    Linda:
    As your neurosurgeon mentioned, doing only a decompression on the spine of someone with scoliosis has a high risk of destablizing the spine and causing the curve(s) to increase.
    Would this apply to someone who had a decompression above (or for that matter, below) the area deformed by the scoliosis?

    Obviously, what I'm getting at is having had decompression on my cervical spine which is not twisted or rotated AFAIK.

    I think I may have misunderstood what you were originally asking. What I was trying to say is that if one has any neurologic symptoms (e.g. sciatica, numbness, tingling) that's a solid reason to opt for surgery. Once one starts having neurologic symptoms, one is always a risk of the symptoms becoming permanent.
    Yes, and my neurological symptoms HAVE become permanent for the most part - the ones from the upper cord compression. What's hard though, is telling what symptoms are from where! Incontinence, for instance , can come from so many areas. For that matter, they can have to do with my bladder which has undergone two operations. I was just run through an elaborate series of urological tests to try to arrive at a differential dx.

    And there are other symptoms. Hoping my scoliosis surgeons have taken account of what seem to be symptoms coming from further down. It will be great if my upcoming myelogram can narrow down some of these cause and effects a bit more. I wonder how they can take account of my severe spondylothesthesis which seems to make neuro testing vary from day to day. One EMG showed nerves at L5-Si weren't transmitting impulses at all, and the next, two months later, was completely normal.
    Not all diagnosed (still having tests and consults) but so far:
    Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
    main curve L Cobb 60, compensating T curve ~ 30
    Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

  15. #15
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    Thanks, Linda for your continued thoughts. People who post here almost unanimously elect to have surgery because of severe pain, so I am just assuming that I will also come to that conclusion. My walking became significantly slower about four years ago, due to what I now am describling as a sensory disturbance that made my front thigh feel tight, also tightness around and above my knee. Three years ago both an EMG and MRI found nothing. Now I am developing symptoms that are more typical. My GP's diagnosis at this moment is radiculopathy, which is really more of a symptom, not a cause.
    1966 fusion in Buffalo of 11 thoracic vertebrae, with Harrington rod

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