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Thread: Seeking advice a little over a year out

  1. #1
    Join Date
    Feb 2014
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    99

    Seeking advice a little over a year out

    Hello all,

    I was hoping for someoneís opinion/adviceÖ You can skip the background part, I know itís wordy, but I hoped it would be helpful.

    My background: had surgery Jan 6, 2014. Went well, but I had a lot of trouble sitting since the beginning. This improved with time, but has always been my ďsore spotĒ. The pain eventually became very localized-a spot below my fusion on the right side of my spine near L5/S1 that radiates into hip and butt. Totally new pain that I got after the surgery. I spoke with my surgeonís assistant throughout the year who was sympathetic but told me this was all normal. Unfortunately I didnít push it until about 9 months when she finally referred me to a physiatrist who put me on Gabapentin which was very helpful for me. My pain became even more localized, but is still here.

    My physiatrist ordered an MRI. There was a mild bulging disk, but nothing else really. He gave me two facet injections which did little. Then he recently gave me an SI injection 3 weeks ago. Hurt a lot and I was inflamed for 2 weeks. Then the nerve calmed down for a couple days and I thought I was good, but then it flared up again randomly.

    Meanwhile, have been back to see my surgeon Dr. Arlet for my one-year check up. His bedside manner is not great, but I know he is a good surgeon. He kept saying my xray looked great (in other words- whatís the problem). He didnít comment too much on MRI ( which is I would think would be what heíd concentrate on given the nature of my pain?) He said I could get a CT scan, but I wanted to hold off and talk to my physiatrist. My physiatrist agreed with me that the CT scan wouldnít show much. This was right before I was getting an SI injection.

    I am active every day (doing my pt, core work, gentle yoga, gentle weights, etc). Very mobile, but can no longer do elliptical or bike because it flares up pain. My pain is bad when sitting upright in the car (Itís been a year and I canít drive without a lot of problems). And also my commute into the city is really hard for me.

    My questions for everyone: do I keep pushing my surgeon for more answers on this? Or do surgeons sort of wash their hands after you after the surgery and pass you to the physiatrist? Should I focus my efforts on dealing with physiatrist? I go to see physiatrist tomorrow for follow-up from injection. He says I can do PT again which Im willing to do I guess, but donít want to keep slow-walking this if not necessary.

    Has anyone else had a weird little nerve pain (same spot always) that came up after the surgery but eventually went away? Would a ct scan really be worth it? I wanted to wait on that because I am loath to get all that radiation (im high-risk for cancer as it is). And finally would it make sense to take my xrays and MRI and get another opinion to make sure nothing is being missed? I guess at this point three people have looked at it (the radiologists, the pain doctor, and the surgeonís office)

    Sorry for the loads of questions!! I guess I had a lot on my mind!! ☺ Thank you for your patience is reading through this.
    Surgery Jan 6, 2014 at 38 yrs
    Posterior Fusion T10-L4, osteotomy 1 lev.
    Pre op-Thoracolumbar Curve-50 degrees

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,797
    It seems to me that you're spinning your wheels with Dr. Arlet. Unless he's missing something (which is certainly possible), he's not seeing anything that is treatable. I would see if you can get another opinion, though I wouldn't be too hopeful that it will bring you any relief.

    How do you know that it's nerve pain? With the exception of post injections, is it there all the time, or does it come and go during the day? What sets it off and what makes it go away?

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  3. #3
    Join Date
    Apr 2012
    Location
    San Jose, CA
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    570
    Hi Springchicken,

    I also had a new pain after the surgery that originated in my butt and was going all the way down to my right foot. Laying down made it worse. It felt like my leg went a sleep - tingling and numb at the same time. I know that my right illiac screw was placed too deep and was probably irritating something when I was laying on my back. It was pretty bad after the surgery, but slowly improved. I remember noticing at about 1.5 years matk that my leg tingling was barely there. Hope your pain goes away too!
    I am stronger than scoliosis, and won't let it rule my life!
    45 years old - diagnosed at age 7
    A/P surgery on March 5/7, 2013 - UCSF

  4. #4
    Join Date
    Aug 2014
    Posts
    170
    Hi,

    I had my surgery November 10, 2014, and ever since the pelvic fixation, I have pain now that radiates down the left leg, which is weird because I really never had any kind of symptoms on the left preoperatively (which my surgeon and his residents found hard to believe because that was the weaker leg on examination, but was true). I had a follow-up appointment (finally) with my doctor's nurse, and she told me it was not uncommon to have such nerve pain since they had to move all the nerves around during surgery. She also said something that I did not quite understand about being "nervy" because the muscles now had to move over hardware and they basically had to "learn" how to move around and over the hardware, and once that happened, the nervy pain "should" go away. Again, I'm only a couple of months out, but my nurse very emphatically told me that this could last a year - that it would be a year before I felt "good" again, and would be nearly two years before I felt "normal," whatever the new normal me is going to be. She basically meant, I think, two years before I would not be constantly thinking about my back, precautions, etc.

    I'm sure that doesn't help you much a year out, and I'm sorry. I did have a pelvic fixation and the screw on the left sure looks close to my SI joint, so I figured there is some nerve in that area that the screw is hitting. I'm on gabapentin, too, which helps a LOT but I have never been able to tolerate the doses that I hear that a lot of you are taking. I take two per day, one extra if I need it. I know some of you take nine per day or even twelve per day. Nine per day (gradually working up to that) is what I was prescribed, but I had an ileus after surgery and had to be rehospitalized, so I've (stupidly) been trying to take as little medication as possible. I also wanted to leave myself some place to go later on, as soon they will take me off the narcotics and I don't tolerate Tylenol at all. They won't have any problem prescribing the gabapentin and other nerve drugs - just no more narcotics.

    Hope you get better soon. Oh, and by the way, I would get a second opinion from someone, especially if you aren't liking what your doctor is telling you or if you feel like you're getting the brush-off.

    Take care!

    Fifa

  5. #5
    Join Date
    Feb 2014
    Posts
    99
    Thank you so much, everyone, for your thoughtful responses! THanks for reading through everything.

    Linda: I'm pretty confident it's nerve pain at this point because of the way it starts in on spot near my spine and radiates down into my butt and hip. Is also accompanied by numbness and it used to travel down farther to my knee, but it has shrunk since then. It's responded well to the Gabapentin, too. Lying down and ice are the most helpful things for it. It's worse when I'm sitting for a while or standing for a while (particularly sitting upright in the car). I think you're right, I am pretty much spinning my wheels with my surgeon at this point. I just wanted to get an idea of what's normal and what's not, which was what was frustrating me so. I never had a pain like this before surgery. I used to have muscle pain which was bad, but at least I could relieve it with exercise. This pain is so much more unpredictable.

    Irina: It's reassuring your pain eventually (slowly) went away! Thanks for sharing that! My pain is relieved when I lie down, but everyone is so different.

    Fifa: THank you for sharing, too! This was very reassuring to me (what your nurse said) though I'm really sorry you're still having pains. I hope they go away sooner than later. That is really great the Gabapentin is helping you! What mg dose are you on--I'm assuming 100mg at a time? I'm on 1200 total a day. I am thinking of increasing... I remember talking to you on another thread about it. I really hope your pain has been more under control. I will have to read what you recently wrote and catch up on everything.

    Thanks again, everyone!
    Surgery Jan 6, 2014 at 38 yrs
    Posterior Fusion T10-L4, osteotomy 1 lev.
    Pre op-Thoracolumbar Curve-50 degrees

  6. #6
    Join Date
    Sep 2003
    Location
    Northern California
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    If you had iliac fixation, I'd be tempted to blame it on the iliac screw. Since that's not the issue, I think you might want to see a neurologist. They have lots of tricks up their sleeves, to try to figure out the cause.

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  7. #7
    Join Date
    Aug 2014
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    Quote Originally Posted by springchicken View Post
    Thank you so much, everyone, for your thoughtful responses! THanks for reading through everything.

    Linda: I'm pretty confident it's nerve pain at this point because of the way it starts in on spot near my spine and radiates down into my butt and hip. Is also accompanied by numbness and it used to travel down farther to my knee, but it has shrunk since then. It's responded well to the Gabapentin, too. Lying down and ice are the most helpful things for it. It's worse when I'm sitting for a while or standing for a while (particularly sitting upright in the car). I think you're right, I am pretty much spinning my wheels with my surgeon at this point. I just wanted to get an idea of what's normal and what's not, which was what was frustrating me so. I never had a pain like this before surgery. I used to have muscle pain which was bad, but at least I could relieve it with exercise. This pain is so much more unpredictable.

    Irina: It's reassuring your pain eventually (slowly) went away! Thanks for sharing that! My pain is relieved when I lie down, but everyone is so different.

    Fifa: THank you for sharing, too! This was very reassuring to me (what your nurse said) though I'm really sorry you're still having pains. I hope they go away sooner than later. That is really great the Gabapentin is helping you! What mg dose are you on--I'm assuming 100mg at a time? I'm on 1200 total a day. I am thinking of increasing... I remember talking to you on another thread about it. I really hope your pain has been more under control. I will have to read what you recently wrote and catch up on everything.

    Thanks again, everyone!
    Hi,

    Sorry I haven't responded before now - I've been pretty deep inside my own head. (frowny face) My gabapentin capsules are 300 mg. I take two per day. My dosage sheet had me working up to nine per day, but I really can't tolerate that much medicine (it puts me to sleep). The two per day seem to be working okay, and I'm really trying, for better or worse, to limit my meds. I feel crazy most of the time these days - like I've lost or am losing my mind. Need to post all that in my own thread, though.

    Hope your pain gets better soon. I'm kind of hopeless right now just at the three month mark, but desperately hoping hope returns. (smiley)

    Feel better soon!
    Fifa

  8. #8
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    Location
    Northern California
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    Quote Originally Posted by fifa View Post
    Hi,

    Sorry I haven't responded before now - I've been pretty deep inside my own head. (frowny face) My gabapentin capsules are 300 mg. I take two per day. My dosage sheet had me working up to nine per day, but I really can't tolerate that much medicine (it puts me to sleep). The two per day seem to be working okay, and I'm really trying, for better or worse, to limit my meds. I feel crazy most of the time these days - like I've lost or am losing my mind. Need to post all that in my own thread, though.

    Hope your pain gets better soon. I'm kind of hopeless right now just at the three month mark, but desperately hoping hope returns. (smiley)

    Feel better soon!
    Fifa
    Fifa... I'm guessing that the gabapentin is responsible for your feeling of losing your mind. It does the same thing to me. It's too bad, because it can be super effective in terms of nerve pain.

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

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