Page 2 of 5 FirstFirst 1234 ... LastLast
Results 16 to 30 of 61

Thread: Pelvic screw pain

  1. #16
    Join Date
    Aug 2008
    Posts
    54
    I had Radio Frequency Ablation on Wednesday. I am still in the same amount of pain. I was given Lyrica and Pain meds. I was told it can take several weeks to see the benefits of the procedure.

  2. #17
    Join Date
    May 2010
    Location
    Indianapolis area
    Posts
    964
    Dixies,

    This was my albatross for the longest time. But I have to say that at more than 2 years post-op, it really doesn't bother me much anymore unless I am doing vigorous exercise. I just mention that because it was a true "pain in the butt" for at least a year, but then it got better. My theory--and this is just a guess--is that once my spine fused, there was less movement in the anchors and it stopped hurting so much. Either that or I've just gotten used to it. Either way, there is hope it will improve in time without removal, if you decide to keep it.

    Best,
    Evelyn
    age 41
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke, T4 to S1 with pelvic fixation
    Not "confused" anymore, but don't know how to change my username.

  3. #18
    Join Date
    May 2009
    Posts
    3,595
    "Admoul"....Anne...from New jersey....Dr Lonner's patient...had
    the screws removed....have not seen her on forum in quite
    a while...but if you send her a private message, that should
    trigger a message in her e mail and she might answer you...
    she is most kind and always got back to people...
    don't remember if she had removal at one year or two...
    if you search for her name you can find her posts on here....

    jess...and Sparky

  4. #19
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,170
    Gayle, thanks for your response. Dr. Hu suggested that I try to better pinpoint the pain source, perhaps pointing to the location in my sacral area and taking an X-ray to see if the location of the pain corresponded with the iliac screws. That was as far as we got on that. I will see the Pain Management MD at OHSU in July for further suggestions. Dr. Hu is on an extended vacation and her PA suggested Celebrex which sounds scary.

    I did have SI joint injections and they did not affect my pain.

    Right now, in addition to my sacral pain, I am having some thoracic pain, seemingly around the area of my trapezius muscle. I also have tingling in my L axillary area. I use Lidocaine patches which help minimally. I also do some PT, which does not seem to help. I did have a massage and was in a lot of discomfort for 3 weeks, so I will not do that again! Hot tub helps while I am using it.

    I figure that I am on the 2 year recovery program because one year didn't do it.

    Hope that you are well. Let me know when you will be in Portland and I would love to treat you to lunch.

    Susan
    Dxed 8/2011: Degenerative Adult-Onset Scoliosis age 65
    XRAY 1/2012: 25* T levoscoliosis/ 36* L dexroscoliosis w/ 4.1 cm coronal & 3.5 cm sagittal balance
    XRAY: 12/2012: Scoliosis curve same, Coronal Balance increased to 11.2 cm. T kyphosis 90 degrees
    Severe disc degeneration thoracic & lumbar, stenosis esp L4
    Surgery: T3 to S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries,
    19 & 22 March 2013, Dr. Serena Hu @ UCSF
    Postop incisional hernia @ ALIF incision, repaired 3/2014

  5. #20
    Join Date
    Aug 2008
    Posts
    54
    I am two weeks out from having the RFA Radio Frequency Ablation to my lumbar nerves. I may have a very very slight amount of improvement. I am still taking pain meds. I have also been prescribed Lyrica and a compounding cream specially made at a mom and pop pharmacy for RFA patients. Sorry I don't have better news to report.

  6. #21
    Join Date
    Jan 2010
    Posts
    11

    Pain Cream

    I am still taking pain meds. I have also been prescribed Lyrica and a compounding cream specially made at a mom and pop pharmacy for RFA patients.


    I haven't had scoliosis surgery, so I'm coming to this discussion from a different place, but I wanted to comment because of the mention of a compounded cream. My physiatrist has just prescribed a compounded pain cream for me and I am astounded by how much it helps. There seem to be fairly standard combinations of medicines and the one I'm using has this:
    Gabapentin 6%
    Clonidine 0.1%
    Diclofenac 2%
    Lidocaine 2%
    Pentoxifylline 5%

    I had been using lidoderm patches, along with oral gabapentin and oxycodone for years but my new insurance company declined to cover the lidoderm. They were just a little helpful anyway, but I continued to use them because every little bit helps. My doctor prescribed this cream as a replacement for the patch. It is significantly more helpful for me. The most difficult part is deciding where to use it. One dose is two grams which covers approximately the area of 1 to 1-1/2 lidoderm patches with a therapeutic dose or a larger area with less effectiveness. I have to choose which area is more painful - the thoracic or sacral/lower lumbar. In my dreams, I have the body wash version. The cream does have a peak of effective time so I choose the application time carefully to get the most effectiveness when I want to be the most functional, ie upright and moving! Right now, my right SI joint is the worst pain for me so I follow that path with the cream application and I am finding that it even helps with the accompanying lower leg pain.

    I am so happy to get a boost in pain relief without the accompanying mental fog (and other side effects) that come with most of the other meds. I know that nothing works for everyone, but this cream has been great for me.

    My insurance has also declined to cover the RFA procedure for my thoracic nerves so until I can change companies, this cream is really helping me manage. I have to wonder if it might be helpful for something as potentially circumscribed as pain from an iliac screw.

  7. #22
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,170
    Gardener, your cream sounds very interesting! Thanks for sharing the formula. I will send it to my pain management doctor and see what she says. I went off the oral Gabapentin about 2 days ago as it was way too sedating.

    RFA was helpful for me in the thoracic, lumbar and more recently cervical area. I had a nasty kyphosis in my thoracic area and while it was not 100% pain relief it allowed me to go to Fiji and do 2 months of medical work. Because of scheduling problems at the clinic (and one very challenging doctor that I "divorced") I had the thoracic RFA the morning that I left for Fiji. For facet pain, RFA generally helps.

    Best of luck to you as you face the challenges of insurance companies and thanks again for sharing the formula for your cream.

    Susan
    Dxed 8/2011: Degenerative Adult-Onset Scoliosis age 65
    XRAY 1/2012: 25* T levoscoliosis/ 36* L dexroscoliosis w/ 4.1 cm coronal & 3.5 cm sagittal balance
    XRAY: 12/2012: Scoliosis curve same, Coronal Balance increased to 11.2 cm. T kyphosis 90 degrees
    Severe disc degeneration thoracic & lumbar, stenosis esp L4
    Surgery: T3 to S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries,
    19 & 22 March 2013, Dr. Serena Hu @ UCSF
    Postop incisional hernia @ ALIF incision, repaired 3/2014

  8. #23
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,170
    Quote Originally Posted by dixiesmommie View Post
    I am two weeks out from having the RFA Radio Frequency Ablation to my lumbar nerves. I may have a very very slight amount of improvement. I am still taking pain meds. I have also been prescribed Lyrica and a compounding cream specially made at a mom and pop pharmacy for RFA patients. Sorry I don't have better news to report.
    So sorry that you did not get much relief. I am going back on Lyrica to see if that helps.
    Susan
    Dxed 8/2011: Degenerative Adult-Onset Scoliosis age 65
    XRAY 1/2012: 25* T levoscoliosis/ 36* L dexroscoliosis w/ 4.1 cm coronal & 3.5 cm sagittal balance
    XRAY: 12/2012: Scoliosis curve same, Coronal Balance increased to 11.2 cm. T kyphosis 90 degrees
    Severe disc degeneration thoracic & lumbar, stenosis esp L4
    Surgery: T3 to S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries,
    19 & 22 March 2013, Dr. Serena Hu @ UCSF
    Postop incisional hernia @ ALIF incision, repaired 3/2014

  9. #24
    Join Date
    Aug 2008
    Posts
    54
    Thanks Susan, I am also going to start taking Lyrica in about a week. My 5 year old granddaughter is staying with me so I need to wait until she leaves to start it. I have heard it can cause drowsiness.

    The compounding cream offers a little relief to me. I think my cream is the same recipe as the one listed above. I am thinking they got the wrong nerves! I think it's my SI joint that is giving me my problems. My RFA was in my lumbar nerves.

    I go back on July 15th. This pain is so miserable!

  10. #25
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,170
    I am looking forward to the "hardware injection" a week from tomorrow. Trying to figure out what is causing the pain seems to me to be somewhat of a crapshoot. My pain MD cannot figure out what is causing my L thoracic pain, but says from my tingling in my axillary area that it is T3 to T5. Swell. What worries me is that I had osteoporosis, in spite of an awesome bone density score, in my thoracic area, so she could not use the usual apparatus, but switched to some sort of hooks. Areas with osteoporosis do not heal as well as normal bone, so I worry that the thoracic area is not fused. Maybe it will just take longer.

    Let's keep in touch and share what works. I need to try that cream! Susan
    Dxed 8/2011: Degenerative Adult-Onset Scoliosis age 65
    XRAY 1/2012: 25* T levoscoliosis/ 36* L dexroscoliosis w/ 4.1 cm coronal & 3.5 cm sagittal balance
    XRAY: 12/2012: Scoliosis curve same, Coronal Balance increased to 11.2 cm. T kyphosis 90 degrees
    Severe disc degeneration thoracic & lumbar, stenosis esp L4
    Surgery: T3 to S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries,
    19 & 22 March 2013, Dr. Serena Hu @ UCSF
    Postop incisional hernia @ ALIF incision, repaired 3/2014

  11. #26
    Join Date
    May 2009
    Posts
    3,595

    hi dixies mommie
    nerve ablation never did much for my pain, either..
    i haven't had surgery...yet....
    the only tx that helped me was shots in SI joint...after trying
    injections all other ways....epidural, facet block, etc....none helped..
    until we found THE spot....and the relief was enormous...
    except that i got too much steroid...and it impacted my adrenal
    function....my cortisol level crashed to almost zero...so...
    had to stop all injections.

    i am wondering if they can find the right spot to give you relief
    for your pain....to me, that is the most important thing...that
    they know WHERE to inject for pain relief to happen

    sorry you didn't get any relief from your pain

    jess...and Sparky

  12. #27
    Join Date
    Aug 2008
    Posts
    54
    Quote Originally Posted by jrnyc View Post

    hi dixies mommie
    nerve ablation never did much for my pain, either..
    i haven't had surgery...yet....
    the only tx that helped me was shots in SI joint...after trying
    injections all other ways....epidural, facet block, etc....none helped..
    until we found THE spot....and the relief was enormous...
    except that i got too much steroid...and it impacted my adrenal
    function....my cortisol level crashed to almost zero...so...
    had to stop all injections.

    i am wondering if they can find the right spot to give you relief
    for your pain....to me, that is the most important thing...that
    they know WHERE to inject for pain relief to happen

    sorry you didn't get any relief from your pain

    jess...and Sparky

    Thanks Jess and Sparky,

    I wish they could find the right spot to inject on me. I feel like the whole RFA was a waist of time and money. I can not do much of anything for any length of time without my leg and left side becoming painful. I'll keep you posted.

  13. #28
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,170

    "Lucency" on X-ray around pelvic screws

    Hmmmmmm........... I had an X-ray of my abdomen for symptoms of nausea and there was a comment on the X-ray about lucency in the area of the screws, "possibly meaning screws were loosening".

    Looked it up on medline, but am unsure what it means for me. I am having copies of the X-ray sent to my spinal surgeon. Wonder if this is he cause of my sacral pain? If so, what does this really mean? What is done about it?

    Susan
    Dxed 8/2011: Degenerative Adult-Onset Scoliosis age 65
    XRAY 1/2012: 25* T levoscoliosis/ 36* L dexroscoliosis w/ 4.1 cm coronal & 3.5 cm sagittal balance
    XRAY: 12/2012: Scoliosis curve same, Coronal Balance increased to 11.2 cm. T kyphosis 90 degrees
    Severe disc degeneration thoracic & lumbar, stenosis esp L4
    Surgery: T3 to S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries,
    19 & 22 March 2013, Dr. Serena Hu @ UCSF
    Postop incisional hernia @ ALIF incision, repaired 3/2014

  14. #29
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,229
    Quote Originally Posted by susancook View Post
    Hmmmmmm........... I had an X-ray of my abdomen for symptoms of nausea and there was a comment on the X-ray about lucency in the area of the screws, "possibly meaning screws were loosening".

    Looked it up on medline, but am unsure what it means for me. I am having copies of the X-ray sent to my spinal surgeon. Wonder if this is he cause of my sacral pain? If so, what does this really mean? What is done about it?

    Susan
    If the screws they're referring to are the pelvic screws, lucency is normal.
    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

  15. #30
    Join Date
    Aug 2008
    Posts
    54
    how can they tell if there is a problem with the screw? Also if it is a problem with the si joint, what do they do for that after instrumentation has been in place?

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •