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  • #16
    Originally posted by Lizzz View Post
    I am totally in the dark as to where to go to have my Illiac Crest shaved down...
    Liz, You know many years ago, I had a lot of trouble finding a hairdresser that would do a purple mohawk. (It was Halloween, and it was a college party, so I am excused.) This was way before the purple mohawk days, so everyone told me no. I eventually ran out of time and simply went in. I think it turned out blue and orange, and was acceptable for the needed shock factor and was a hit at the party! With the toga, and the John Belushi glasses, it was quite the setup.

    Funny how we have all done this at the hospital because the gowns are the same thing as a toga, only open in the back and with the really strong injectable meds, everyone else has the purple mohawk! (smiley face)

    Sounds like your doing the same thing, and with your Harrington setup being as old as it is, its just going to be best to go in and have things checked out. I have used the word blind in the past, don't know if this is the right way to put it, but I wouldn't say too much other than that you are having hip pain, or describe exactly what pains you are having to the doctor. Let the surgeon examine you, and have a talk. That's the way it starts by talking, you don't have to proceed with anything, these things take a lot of time to ponder. I spent around 2-1/2 years taking to my surgeon with multiple visits. Some of those visits were not smooth, I was rejected, and basically had to accept the hard truth myself. At the time, I also wasn't ready for surgery, but I knew that I had to do something. Surgical methods were changed because I waited, and they added the anterior ALIF to the process. There was no way I was dictating any surgical methods, all this stuff gets extremely complicated. I have seen the shaving mentioned online but I cannot comment since I am not a surgeon. I also tried to get my surgeon to fuse me lower on the top, he wasn't having it. I understand all this now, years later, knowing how strong the kyphosis component or forward thoracic pull is on many of us. It was the correct call.

    I know that going in is a scary thing. You went through the casting as a kid and this must have been quite an experience. I don't know what to say other than as scoliosis patients we all have to be brave and face things head on at different stages. I am having problems with my neck now, and I also will have to face it once again at some point. When that happens, I don't know what they will want to do....???

    Our problems are never easy....we like to think so, but with some of us adult patients we can have quite a few problems. I had like 50 major problems with my lumbar spine. I knew it was getting worse, and something had to be done so I simply went in. No list of questions, no idea of surgical attack, no nothing. It was a first date, a blind date.

    Your place or mine? Operating room #3? Oh boy....

    Ed
    49 yr old male, now 63, the new 64...
    Pre surgery curves T70,L70
    ALIF/PSA 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

    Comment


    • #17
      Years ago I had a ruptured ectopic and bled into my belly. Most of the time during recovery in the hospital, I complained that I thought I broke my shoulder when I passed out and fell because that was where all my pain was. It was 9 or 10 pain.
      It overrode all pain at the surgical site in my lower abdomen. As it turns out, the blood in my belly irritated a nerve that resulted in the sensation that my left shoulder was engulfed in pain and must be broken.

      There was nothing wrong with my left shoulder.
      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."

      Comment


      • #18
        Unless you hit your thumb with a hammer driving a nail, second guessing really is fruitless.

        Going in and being evaluated is important.

        Its horrible that some cancer patients cant be fast enough sometimes. Scoliosis patients get used to pain, so we tough things out quite a bit. But you cant be running to the doctor every time there is the slightest pain.....or can you?

        Ed
        49 yr old male, now 63, the new 64...
        Pre surgery curves T70,L70
        ALIF/PSA 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

        Comment


        • #19
          How can that be ppssible if they are experiencing pain on that side of the Illiac Cre

          Originally posted by LindaRacine View Post
          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.
          Hi Linda, I don't know how that could be possible that the patient can't tell which side of the Iliac Crest the bone graft was taken if they are experiencing pain in the spot where the bone graft was taken?

          Comment


          • #20
            Originally posted by Pooka1 View Post
            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.


            Hi Sharon,
            I said "or something like that" - it could be rubbing up against a nerve, tendon, tissue of some kind, I don't know what it is rubbing up against as I am not a doctor, all I know is there is a very large bone spur in the site where the bone graft was taken from my Iliac Crest and it is extremely painful.

            You said..."you said you have a radiograph" I never said "I have a radiograph" as I don't even know what that is.

            I am only assuming shaving down the bone spur would be the answer as I don't know what else could be the answer...the implant thing seems intersting but for the reason I mentioned earlier I'd like to stear clear of it if possible.

            Bone spurs being shaved down on the iliac crest post surgery is a known treatment as I spoke with someone who had it done approx.15 years ago...I just don't have any idea who that person was - I wish I had saved her info but it was so long ago and I may not have been in this kind of pain at the time. However, even though it is a known issue, since they apparently stopped doing it after discovering all of the pain and complications post surgery when the bone grows back, they stopped doing it, so there is only a window of about a decade where they were doing it on a regular basis.

            Again, I said "or something like that" regarding iliac crest rubbing up against a bone - it may not be a bone, it may be a nerve or something, I don't know, I'm not a doctor, but I think your idea of merely seeking doctors who treat Ilac Crest pain a good idea, although I don't know how people could even have illac crest pain if they did not have a bone graft taken from that site - as you say the illiac crest has not bone to rub up against so how could they be having pain in that area if they didn't have a bone graft...I wonder if such a doctor exists. I will start searching for one on Mon.

            Comment


            • #21
              Originally posted by titaniumed View Post
              Liz, You know many years ago, I had a lot of trouble finding a hairdresser that would do a purple mohawk. (It was Halloween, and it was a college party, so I am excused.) This was way before the purple mohawk days, so everyone told me no. I eventually ran out of time and simply went in. I think it turned out blue and orange, and was acceptable for the needed shock factor and was a hit at the party! With the toga, and the John Belushi glasses, it was quite the setup.

              Funny how we have all done this at the hospital because the gowns are the same thing as a toga, only open in the back and with the really strong injectable meds, everyone else has the purple mohawk! (smiley face)

              Sounds like your doing the same thing, and with your Harrington setup being as old as it is, its just going to be best to go in and have things checked out. I have used the word blind in the past, don't know if this is the right way to put it, but I wouldn't say too much other than that you are having hip pain, or describe exactly what pains you are having to the doctor. Let the surgeon examine you, and have a talk. That's the way it starts by talking, you don't have to proceed with anything, these things take a lot of time to ponder. I spent around 2-1/2 years taking to my surgeon with multiple visits. Some of those visits were not smooth, I was rejected, and basically had to accept the hard truth myself. At the time, I also wasn't ready for surgery, but I knew that I had to do something. Surgical methods were changed because I waited, and they added the anterior ALIF to the process. There was no way I was dictating any surgical methods, all this stuff gets extremely complicated. I have seen the shaving mentioned online but I cannot comment since I am not a surgeon. I also tried to get my surgeon to fuse me lower on the top, he wasn't having it. I understand all this now, years later, knowing how strong the kyphosis component or forward thoracic pull is on many of us. It was the correct call.

              I know that going in is a scary thing. You went through the casting as a kid and this must have been quite an experience. I don't know what to say other than as scoliosis patients we all have to be brave and face things head on at different stages. I am having problems with my neck now, and I also will have to face it once again at some point. When that happens, I don't know what they will want to do....???

              Our problems are never easy....we like to think so, but with some of us adult patients we can have quite a few problems. I had like 50 major problems with my lumbar spine. I knew it was getting worse, and something had to be done so I simply went in. No list of questions, no idea of surgical attack, no nothing. It was a first date, a blind date.

              Your place or mine? Operating room #3? Oh boy....

              Ed

              Thanks for your reply Ed. I may do that - just go in with my complaint and see what they say...actually, to my recollection, when I was having the prolotherapy done, the doctor used some kind of imaging and he said he could see it - the illiac crest and also felt it with his hand where the enormous bone growth is. Anyway, maybe I'll just go in and see someone about the pain - but I guess I sort of feel like why use the $ on the appointment if the doctor is totally unfamiliar with this kind of pain?

              Comment


              • #22
                Originally posted by Lizzz View Post
                You said..."you said you have a radiograph" I never said "I have a radiograph" as I don't even know what that is.
                Sorry. I mean do you have an x-ray showing a bone spur?

                Bone spurs being shaved down on the iliac crest post surgery is a known treatment as I spoke with someone who had it done approx.15 years ago
                Could it be this person was mistaken? People misunderstand their surgeons all the time.

                Again, I said "or something like that" regarding iliac crest rubbing up against a bone - it may not be a bone, it may be a nerve or something, I don't know, I'm not a doctor, but I think your idea of merely seeking doctors who treat Ilac Crest pain a good idea, although I don't know how people could even have illac crest pain if they did not have a bone graft taken from that site - as you say the illiac crest has not bone to rub up against so how could they be having pain in that area if they didn't have a bone graft...I wonder if such a doctor exists. I will start searching for one on Mon.
                Well maybe people can feel pain in the iliac crest area despite the fact that it is caused by something else. My example of feeling exquisite shoulder pain when there was nothing wrong with my shoulder is an example of this. A nerve far away from my shoulder in my belly was irritated.
                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."

                Comment


                • #23
                  Originally posted by Lizzz View Post
                  Anyway, maybe I'll just go in and see someone about the pain - but I guess I sort of feel like why use the $ on the appointment if the doctor is totally unfamiliar with this kind of pain?
                  Any spine surgeon is going to be familiar with treating this condition since it is relatively common among patients who had bone harvested from the iliac crest.
                  Last edited by Pooka1; 07-01-2018, 10:21 AM.
                  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."

                  Comment


                  • #24
                    Here is a list of causes of pain after bone harvesting from the ilium for spine surgery...

                    https://www.spine-health.com/treatme...site-morbidity

                    Factors That Influence Post-operative Pain and Morbidity
                    Regardless of the approach used to harvest the bone graft, there are several potential risks with this part of the spinal fusion surgery, including:

                    The sensory nerves that exit in this region (cluneal nerves) may be cut, bruised, or stretched. Injury to these nerves can result in persistent pain. When harvesting bone from the front of the pelvis the nerve at risk is the lateral femoral cutaneous nerve, which supplies sensation to the anterior thigh. Injury to this nerve can also result in significant pain (meralgia paristhetica).

                    Blood vessel injury can cause significant blood loss and hematoma formation.

                    Violation of the sacroiliac joint (where the pelvis attaches to the spine) can occur during posterior iliac crest harvest (when bone graft is taken from the back).

                    Fractures of the front most portion of the ilium (ASIS - anterior superior iliac spine) can result if the graft is taken too close to the anterior iliac spine.
                    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."

                    Comment


                    • #25
                      Originally posted by Lizzz View Post
                      I sort of feel like why use the $ on the appointment if the doctor is totally unfamiliar with this kind of pain?
                      Liz, You have gone a really really long time without seeing a scoliosis surgeon.....(I thought I was bad) A lot of degeneration can happen during this time period.....You have to be wide open on this, and not discount anything with your spine. Its time for a full checkup. A scoliosis surgeon only, and a good one at that. They are experts at bone grafting science.

                      The scoliosis patients that were done back in the day sure are a tough bunch....There is no doubt about that. You guys are pioneers.

                      They will be looking closely at your lowest levels under your fusion mass....

                      Check your insurance before doing anything.

                      Ed
                      49 yr old male, now 63, the new 64...
                      Pre surgery curves T70,L70
                      ALIF/PSA 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

                      Comment

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