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Thread: Seeking excellent bone spur surgeon, iliac crest...

  1. #1
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    Seeking excellent bone spur surgeon, iliac crest...

    Hello Scoliosis Surgery Survivors,

    I am brand new to this forum but so happy to have been told how to post in it thanks to Ed!!! Thank you Ed!...Even the scoliosis website people didn't know how!

    Anyway, I have been having pain where they took bone from my iliac crest (hip area in back) for the surgery many years ago The bone has grown back and is excruciating as I believe it is either cutting into something or maybe rubbing up (bone against bone) on another nearby bone, but I am seeking an experienced doctor who has an great track record of success in shaving down this area (without leaving the patient worse off than before they went in If anyone has any suggestions I would be so grateful. I live on Los Angeles but will travel anywhere for the right doctor. Maybe even if you didn't have this post surgery problem yourself but if you know of someone who did and they got their iliac crest shaved down, if you could refer me to them that would also be great.

    My direct contact # is 310-455-7530 if you'd like to call. Please also feel free to pass my # to anyone you think could help with this referral.

    Thank you so much!!! Any and all info would be helpful as right now I have none and am a bit desperate.

    Sincerely,
    Liz

  2. #2
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    Hi Liz,

    Welcome but sorry to hear of your pain.

    Here is an article I found that talks about successful treatment of that kind of pain...

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4644311/

    Conclusions:
    Donor site pain following autologous iliac crest bone harvest is a common surgical complication that is often resistant to conservative treatments such as physical therapy and oral medications. Blockade of the superior cluneal nerves is a safe and technically simple procedure that may result in long-term pain relief, obviating the need to consider more invasive options.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  3. #3
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    Liz

    This topic is not talked about here that often.....I guess since surgeons cut back years ago. I asked my surgeon about (digging on the hip) 10 years ago, he shook his head no. That ended that discussion. I had NO bone used in my surgeries, all synthetics and BMP.

    Bone pain and nerve pain are the worst. Its almost in its own category. During my recovery, I soaked in a deep tub with 106 degree F water. It really was the only way to quell that pain. It needs to be a deep tub, so you can extend out straight and float.

    Sharon posted a great article....This blocking of the cluneal nerves might be worth discussion with a scoliosis surgeon.

    Real quick, for the LA basin, Dr's Pashman, Anand, and Bederman (Irvine, Ca) come to mind. I hope I didn't miss any others. These are scoliosis surgeons with extensive scoliosis training.

    Hang in there

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  4. #4
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    Thank you for the very interesting response!!!...

    Quote Originally Posted by Pooka1 View Post
    Hi Liz,

    Welcome but sorry to hear of your pain.

    Here is an article I found that talks about successful treatment of that kind of pain...

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4644311/


    Dear Pooka1,

    Thank you so much for this medical article!!! So interesting!!! I am a little hesitant to get more implants, but I really appreciate your sending this article, it certainly is good food for thought! I had never heard of this nerve type of blocking implant scenario. I will read the article in depth when I have a more time, hopefully over the weekend.

    Just to let you know, I have also tried something called prolotherapy, where they inject a sugar water substance into the area that is afflicted and it grows it's own collagen, acting like a cushion in that area. This has actually worked for me for around 10 years (a total miracle!), but either my bone spur has grown even more than the size it was 10 years ago (a distinct possibility) or the prolotherapy simply doesn't last a life time and has to be renewed...I did renew it a little, but am also trying to stay away from it because in addition to the sugar water substance, I think they use a little cortisone to try and numb the area they are going so deep with the needles and cortisone is a known carcinogen, so don't want to try and fix one problem whilst causing another even greater problem!

    Anyway, I really appreciate you sending the article and look forward to reading it more in depth and possibly doing a little more research on this nerve blocking procedure.

    With warmest regards and gratitude,
    Liz

  5. #5
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    Thank you for the excellent referalls Ed!!!

    Quote Originally Posted by titaniumed View Post
    Liz

    This topic is not talked about here that often.....I guess since surgeons cut back years ago. I asked my surgeon about (digging on the hip) 10 years ago, he shook his head no. That ended that discussion. I had NO bone used in my surgeries, all synthetics and BMP.

    Bone pain and nerve pain are the worst. Its almost in its own category. During my recovery, I soaked in a deep tub with 106 degree F water. It really was the only way to quell that pain. It needs to be a deep tub, so you can extend out straight and float.

    Sharon posted a great article....This blocking of the cluneal nerves might be worth discussion with a scoliosis surgeon.

    Real quick, for the LA basin, Dr's Pashman, Anand, and Bederman (Irvine, Ca) come to mind. I hope I didn't miss any others. These are scoliosis surgeons with extensive scoliosis training.

    Hang in there

    Ed

    Hi Ed,

    It was great talking with you yesterday!!! I also REALLY appreciate your excellent well research referrals!! I will be sure and reach out to them asap!!! I will keep you posted as to any updates with my situation!! By the way, I don't think I received the email you were going to send...just in case, my email is elizabethbarris@aol.com. Thank you so much again for the referrals and the very interesting conversation!!! Talk soon!

    Warmest regards and much gratitude,
    Liz

  6. #6
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    Reconstructing the harvest site with cement doesn't seem to work...

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2899541/

    In conclusion, iliac spine reconstruction using Calcium Phosphate Cement following autogenous bone graft harvest is a relatively simple procedure which failed to decrease the incidence of donor-site morbidity in our patient population.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  7. #7
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    Article about patients not knowing which side was harvested without seeing the scar suggests the source of pain is not the harvest site...

    http://thejns.org/doi/full/10.3171/2014.6.SPINE13902

    RESULTS
    Most patients (64%) could not correctly determine which iliac crest had been harvested. Of the 9 patients who correctly identified the side of the autograft, 7 were only able to guess. The 2 patients who confidently identified the side of grafting had no pain at rest and mild pain with activity. One patient who incorrectly guessed the side of autografting did have significant sacroiliac joint degenerative pain bilaterally.

    CONCLUSIONS
    Results of this study indicate the inability of patients to clearly define their graft site after iliac crest autograft harvest with allograft reconstruction of the bony defect unless they have a separate skin incision. This simple, easily reproducible pilot study can be expanded into a larger, multiinstitutional investigation to provide more definitive answers regarding the ideal, safe, and cost-effective bone graft material to be used in spinal fusions.

    This may be why the cements don't work and the nerve blocking to the area does.

    By the way, why do you think you have a bone spur at the site? If they are putting cement in it sounds like the issue is replacing bone, not shaving new bone off.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  8. #8
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    Quote Originally Posted by Pooka1 View Post
    Article about patients not knowing which side was harvested without seeing the scar suggests the source of pain is not the harvest site...

    http://thejns.org/doi/full/10.3171/2014.6.SPINE13902




    This may be why the cements don't work and the nerve blocking to the area does.

    By the way, why do you think you have a bone spur at the site? If they are putting cement in it sounds like the issue is replacing bone, not shaving new bone off.
    Thanks for posting Sharon. Dr. Hu mentions this to patients all of the time.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  9. #9
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    I have seen this article....

    Locating pain sources "can" be extremely difficult (with spine)....and descriptions of pain and their locations are extremely important to doctors. One has to tell them everything, and these descriptions need to be as exacting as possible.

    Sciatica, true leg and hip pains, and arm and finger numbness offer some pretty good clues. My scoliosis surgeon called my herniated neck levels without doing an MRI, just by my exact description of what was happening to each finger. Thumb and index finger 80-90% numb is C5-C6. Who needs an MRI machine when you are that good. I elected to do the MRI just to verify. He was right. However, my scoliosis lumbar situation was really complicated, but it came out great.

    When I saw my vascular surgeon Dr Rembetski upon my gall attacks, he didn't read the medical history book I wrote out in the waiting room, and as he stumbled through my phone book sized hospital reports for 10 seconds on my ALIF, he looked up and asked "Ed, what going on?" I actually didn't have to say anything as his hand went up on my liver and asked if I had any distension. He knew what was wrong in 2 seconds. A surgeon who has been through thousands and thousands of bodies over the last 35 years. Been there, done that. If he were blind, I would trust him to do my surgeries as he has only been through half my body. I verified with CT. He was right. Gall stones, and big ones. 28mm. I said that's over one inch, and he concurred as if it was no biggie. I wonder if they were the size of a bowling ball what he would say? "Ed, go bowling?" (smiley face)

    I have seen the expertise of my specialists multiple times, and its an amazing thing. It takes true dedication to the medical sciences, MD degrees, residencies, fellowships and constant training for the rest of their lives....and it doesn't stop. For those that have scoliosis, and have not seen a specialist, if your reading, I hope this helps with trust.

    Liz is a scoliosis veteran over many many years. Its great to have her posting!

    Time for dinner....

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  10. #10
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    Study looked at different control group than patients with post-op pain in Iliac Cres

    Quote Originally Posted by LindaRacine View Post
    Thanks for posting Sharon. Dr. Hu mentions this to patients all of the time.
    Hi Linda,
    Thank you so much for the article. I looked at it briefly and apparently the study was done on patients who did NOT experience pain in the site of their bone graft (the lliac crest) as opposed to studying patients who DID experience pain in the area of their bone graft (Illiac Crest). I'm sure the results of the study would be completely opposite - patients WOULD be able to recognize which side of the body the bone graft was taken, had their control group been patients complaining of pain in the site of their bone graft of the Illiac Crest, but they did not look at this group of people...they looked at people who experienced no pain at all in the site of their bone graft. I too had no problems at all with my Illiac Crest for many years - until the bone grew back.
    How do I know it is bone growth and not cement or something else you ask? Cement cannot grow large or small but bone can and is famous for doing this when harvested from this Illiac Crest, which is why they no longer do that anymore - or at least very rarely, because of the post operative pain and complications years after the fact when the bone grows back. I guess my surgery was in the short 10 year period when they were harvesting from the Illiac Crest. it takes years for the bone to grow and become so large it's painful. Unfortunately my bone growth has reached that level. Another reason why I know with probably 98% surety is that you can actually see this bone growth sticking out of my Illiac Crest where they harvested the bone. And finally, it is so painful I can't even stand up straight as that puts possible bone on bone pressure in that area - the bone may be now hitting another bone or something - I'm not sure. Anyway, I really appreciate you forwarding the article, just it didn't look at the right set of controls for my situation.
    Warmest regards and gratitude,
    Liz
    Sorry Linda!! I see Sharon posted the article!! I will copy and paste my response to her.
    Last edited by Lizzz; 06-25-2018 at 02:54 PM. Reason: addressed wrong person...

  11. #11
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    Corrected send to Sharon...Study looked at wrong set of controls...

    Quote Originally Posted by Pooka1 View Post
    Article about patients not knowing which side was harvested without seeing the scar suggests the source of pain is not the harvest site...

    http://thejns.org/doi/full/10.3171/2014.6.SPINE13902




    This may be why the cements don't work and the nerve blocking to the area does.

    By the way, why do you think you have a bone spur at the site? If they are putting cement in it sounds like the issue is replacing bone, not shaving new bone off.
    Hi Sharon,
    Thank you so much for the article!! I accidentally responded to Linda as opposed to you so am copying my response here for you. Also I'm not sure if they ever filled the harvest site with anything...there used to be just a big dent where the harvest was taken. Now it's a huge lump. Here is my response to Linda that I should have sent to you...

    Thank you so much for the article. I looked at it briefly and apparently the study was done on patients who did NOT experience pain in the site of their bone graft (the lliac crest) as opposed to studying patients who DID experience pain in the area of their bone graft (Illiac Crest). I'm sure the results of the study would be completely opposite - patients WOULD be able to recognize which side of the body the bone graft was taken, had their control group been patients complaining of pain in the site of their bone graft of the Illiac Crest, but they did not look at this group of people...they looked at people who experienced no pain at all in the site of their bone graft. I too had no problems at all with my Illiac Crest for many years - until the bone grew back.
    How do I know it is bone growth and not cement or something else you ask? Cement cannot grow large or small but bone can and is famous for doing this when harvested from this Illiac Crest, which is why they no longer do that anymore - or at least very rarely, because of the post operative pain and complications years after the fact when the bone grows back. I guess my surgery was in the short 10 year period when they were harvesting from the Illiac Crest. it takes years for the bone to grow and become so large it's painful. Unfortunately my bone growth has reached that level. Another reason why I know with probably 98% surety is that you can actually see this bone growth sticking out of my Illiac Crest where they harvested the bone. And finally, it is so painful I can't even stand up straight as that puts possible bone on bone pressure in that area - the bone may be now hitting another bone or something - I'm not sure. Anyway, I really appreciate you forwarding the article, just it didn't look at the right set of controls for my situation.
    Warmest regards and gratitude,
    Liz

  12. #12
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    Thank you for the article...

    Quote Originally Posted by Pooka1 View Post
    Reconstructing the harvest site with cement doesn't seem to work...

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2899541/
    Thank for you this article Sharon! Good to know!

    Warmly,
    Liz

  13. #13
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    Way too kind...

    Quote Originally Posted by titaniumed View Post
    I have seen this article....

    Locating pain sources "can" be extremely difficult (with spine)....and descriptions of pain and their locations are extremely important to doctors. One has to tell them everything, and these descriptions need to be as exacting as possible.

    Sciatica, true leg and hip pains, and arm and finger numbness offer some pretty good clues. My scoliosis surgeon called my herniated neck levels without doing an MRI, just by my exact description of what was happening to each finger. Thumb and index finger 80-90% numb is C5-C6. Who needs an MRI machine when you are that good. I elected to do the MRI just to verify. He was right. However, my scoliosis lumbar situation was really complicated, but it came out great.

    When I saw my vascular surgeon Dr Rembetski upon my gall attacks, he didn't read the medical history book I wrote out in the waiting room, and as he stumbled through my phone book sized hospital reports for 10 seconds on my ALIF, he looked up and asked "Ed, what going on?" I actually didn't have to say anything as his hand went up on my liver and asked if I had any distension. He knew what was wrong in 2 seconds. A surgeon who has been through thousands and thousands of bodies over the last 35 years. Been there, done that. If he were blind, I would trust him to do my surgeries as he has only been through half my body. I verified with CT. He was right. Gall stones, and big ones. 28mm. I said that's over one inch, and he concurred as if it was no biggie. I wonder if they were the size of a bowling ball what he would say? "Ed, go bowling?" (smiley face)

    I have seen the expertise of my specialists multiple times, and its an amazing thing. It takes true dedication to the medical sciences, MD degrees, residencies, fellowships and constant training for the rest of their lives....and it doesn't stop. For those that have scoliosis, and have not seen a specialist, if your reading, I hope this helps with trust.

    Liz is a scoliosis veteran over many many years. Its great to have her posting!

    Time for dinner....

    Ed

    Hi Ed,
    You are WAY to kind...I did have my surgery many years ago, like many others in the group, but I am by no means an expert at all on it...in fact I am totally in the dark as to where to go to have my Illiac Crest shaved down...I did appreciate the article Sharon posted about the surgery to block the nerve, but there are a few reason why that scares me...1) usually pain is a warning from the body - something is not right and needs to be fixed and I'd be afraid that by numbing that pain out, maybe it is cutting into another bone or something that could eventually fracture and cause even greater pain and/or problems. 2) Putting more implants into my body is not an idea I am enthused about. But I am extremely grateful for the article and can keep it on the back burner as an option if all else fails and I am never able to find a doctor to shave down the Illiac Crest - although I remain hopeful I will be able to and will keep looking!!
    Also thank you so much for the doctor referrals...thus far none are familiar with my problem, but I have asked if they could possibly refer me to anyone they might know of who is familiar with this problem.
    Warmest regards and gratitude,
    Liz

  14. #14
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    I think you'll find that many scoliosis surgeons will tell you that even patients who have iliac crest area pain after bone graft surgery, can't reliably predict which site was actually used as the donor site.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  15. #15
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    Quote Originally Posted by Lizzz View Post
    And finally, it is so painful I can't even stand up straight as that puts possible bone on bone pressure in that area - the bone may be now hitting another bone or something - I'm not sure.
    Hi Liz,

    Here is the human skeleton. There is no bone anywhere near the iliac crest to be rubbing against.

    http://www.daviddarling.info/encyclo.../skeleton.html

    Now if you had a large residual curve, it might be possible that the last rib is close to the iliac crest but you said you have a radiograph where you think there is a bone spur. Is there any other bone near the iliac crest in that radiograph? Unless you ave a large residual curve and a large bone spur, it seems like shaving it down may not be the answer.

    If you are having trouble finding surgeons for "shaving a bone spur on your iliac crest", you can instead look for people who treat iliac crest pain. You may never find anyone in the former category if that is a not a known treatment because there is no bone near the iliac crest to rub against.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

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