Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 Hi Helen. Our son Louis, age 6, systemic has some of that bony overgrowth too. I think it is related to the deformity that comes with this disease. Its rough to see, I know. My son has it in lots of joints. It is hard to watch it develop. There is alot of " letting go " as a mom to deal with in handling this disease, and I am not that good at it. Good luck with the Remicade and everything. Jan Bony overgrowth Does anyone know anything about bony overgrowth???? Nick had his appt this morning and the doctor mentioned how his fingers dont match his build. He said he has bony overgrowth in his PIP joints. He cannot feel free fuild, but they all feel " full " he then talked out how inflamation can cause bones to grow faster than they should. Anyone know anything about this????? Other news, Nicks remciade dose was doubled and we will be shortening down the gap between them, not sure if we will be going every 4 weeks or 6. We also saw OT and Nick now has a splint to wear to try and help support his wrist and hand when writing. We will see if this helps him any. hugs Helen and (8,systemic) Hugs..Helen DH Dan (22)(16)(13)Zachary(11)(8) (6) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2006 Report Share Posted March 6, 2006 Helen - How did Nick's Remicade go?? Did you fill out your comment card on the U? Alia and Caroline, age 4, poly and iritis ________________________________ From: [mailto: ] On Behalf Of Helen Burger Sent: Friday, March 03, 2006 3:44 PM Subject: Bony overgrowth Does anyone know anything about bony overgrowth???? Nick had his appt this morning and the doctor mentioned how his fingers dont match his build. He said he has bony overgrowth in his PIP joints. He cannot feel free fuild, but they all feel " full " he then talked out how inflamation can cause bones to grow faster than they should. Anyone know anything about this????? Other news, Nicks remciade dose was doubled and we will be shortening down the gap between them, not sure if we will be going every 4 weeks or 6. We also saw OT and Nick now has a splint to wear to try and help support his wrist and hand when writing. We will see if this helps him any. hugs Helen and (8,systemic) Hugs..Helen DH Dan (22)(16)(13)Zachary(11)(8) (6) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2007 Report Share Posted October 10, 2007 , I was diagnosed with osteoporosis at the age of 33. My bone scan was -2.5 in the spine and hips. I have been taking Fosamax for 11 years and my hips were -1.2 (osteopenia) early last year. I just had revision surgery in May of this year. Dr. Hey said my bones were in good shape and took the screws well. I have not had any problems so far with the rods, screws, etc. or the fusion mass. I can let you know more next month at my 6-month check up. Peggy [ ] bony overgrowth Hi Cam, Llweyn, Sharon, , and friends.Thank you to all of you for reading/responding to my story. Your words of encouragement and support mean so much to me. You are an incredibly compassionate group.Cam, it was funny you mentioned Falls on the Rideau Canal, because we just boated through those locks about two weeks ago. Although I've lived about a half hour from there all my life, I'd never gone through the locks by boat. It would be great to meet next time you visit the area.Llewyn, I would be interested in getting the Canadian scolio info you mentioned. What a coincidence that we had the same HR surgeon!I am gearing up for my appt. Oct 29. I was wondering if anyone out there has encountered this "bony overgrowth" and how to stop it. The way it was described to me was that when my spine was fusing, it just continued to create more and more bone over the years resulting in an increasing hump in my lumbar region. The local ortho says my fusion is solid there, but then why did my lumbar curve worsen significantly?I'm starting to feel really compressed in this area and have difficulty sitting, especially leaning back on a hard chair. Has anyone heard of having it removed/reduced?My other question has to do with osteoporosis. I had early menopause (no periods since age 42). Now I've been having bone density tests showing I'm getting osteopenic. Wondering how this impacts on possible revision. And if they give you something to halt bony overgrowth, would that also impact on getting a solid fusion?I'm probably getting ahead of myself, but just want to be prepared for my appt. Any info or questions I should be asking would be welcome.Thanks and best wishes to all on their scolio journey. Especially thinking of , who sounds like she's been through so much. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2007 Report Share Posted October 10, 2007 , I've read that surgeons do sometimes find non-fusion areas (pseudarthrosis) in surgery that they were unable to detect on x-ray. That could be in your case, or you may have had a pseudarthrosis that was later overgrown by bone (? -- just extrapolating here). A solid fusion is supposed to prevent curve progression, so, if you have curve progression it's not much of a stretch to think your fusion is or was not as solid as believed. The question of bone density is a good one for your prospective surgeon. I know that edging up toward age 50 was part of what spurred me to get my revision done, as my dad is osteopenic and I suspect my mom probably is, plus so many other health issues can come into play as we age. A couple of things you might ask about in this regard are bone morphogenic protein (BMP) and the use of a bone growth stimulator. Nutrition plays a role as well. My surgeon was all for my taking a supplement, such as high protein Boost, plus calcium tablets. As far as removing excessive bone growth, this is probably pretty much business as usual -- though of course you want to ask your surgeon. I know a lot of fusion mass was removed during my revision. Not that I had an unusual overgrowth, just that these guys cut bone for a living. As far as giving you something to halt bony overgrowth, I'm willing to bet they wouldn't do that until your fusion had healed thoroughly. Have you even heard of a drug that does that? If I knew I were osteopenic I wouldn't be at all keen to take something that prevents bone growth, even if it were offered. My surgeon wouldn't even let me take an anti-inflammatory for a year after revision because they can interfere with fusion. I also would wonder when did you grow most of that overgrowth, meaning, was it mostly grown while you were younger? You might not be at as high a risk for overgrowth now. Just some thoughts to help you formulate questions. Good luck. Sharon [ ] bony overgrowth Hi Cam, Llweyn, Sharon, , and friends.Thank you to all of you for reading/responding to my story. Your words of encouragement and support mean so much to me. You are an incredibly compassionate group.Cam, it was funny you mentioned Falls on the Rideau Canal, because we just boated through those locks about two weeks ago. Although I've lived about a half hour from there all my life, I'd never gone through the locks by boat. It would be great to meet next time you visit the area.Llewyn, I would be interested in getting the Canadian scolio info you mentioned. What a coincidence that we had the same HR surgeon!I am gearing up for my appt. Oct 29. I was wondering if anyone out there has encountered this "bony overgrowth" and how to stop it. The way it was described to me was that when my spine was fusing, it just continued to create more and more bone over the years resulting in an increasing hump in my lumbar region. The local ortho says my fusion is solid there, but then why did my lumbar curve worsen significantly?I'm starting to feel really compressed in this area and have difficulty sitting, especially leaning back on a hard chair. Has anyone heard of having it removed/reduced?My other question has to do with osteoporosis. I had early menopause (no periods since age 42). Now I've been having bone density tests showing I'm getting osteopenic. Wondering how this impacts on possible revision. And if they give you something to halt bony overgrowth, would that also impact on getting a solid fusion?I'm probably getting ahead of myself, but just want to be prepared for my appt. Any info or questions I should be asking would be welcome.Thanks and best wishes to all on their scolio journey. Especially thinking of , who sounds like she's been through so much. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2007 Report Share Posted October 11, 2007 , Okay....we shall meet on the Rideau the next time I am there...perhaps next August when we return from Denmark. On the boney overgrowth...funny this comes right along with the discussion of BMP. In my case, my surgeon said that when he did the posterior work, which was the first days surgery, there was so much boney overgrowth that he was able to harveest the stuff to use with the BMP for the following week...meaning he didn't need to harvest the iliac crest. Maybe it will be one of those blessings in disguise. My suggestion is to put a pad of paper by your computer and start writing down your questions. When you have the list as close to complete as possible, create your own well ordered document and take it, and another person, into the exam room with the doctor and do not leave until you have an answer to every question. I placed my 5 page document in the files section to give folks a sense of what I wanted to cover. It might be worth looking at it in order to remind you of the questions that you might want to included on your own list. After your exam talk with whoever was at the exam with you right away and make sure you both heard the same thing. Write down as much as you can....you will refer back to it later. And before you leave the doctor also find out what procedure you should use to ask follow on questions that inevitably will crop up the second you walk out the door! Take Care, Cam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2007 Report Share Posted October 11, 2007 Hi Sharon Thanks for your thoughts. It was the local ortho guy that a few years ago said he could remove some of the bony overgrowth and give me something to prevent it recurring - I believe it was called Indocid which, if I'm not mistaken is a strong anti-inflammatory. This fts with what your saying abouy not using anti-inflammatories with a new fusion. Anyway, I agree with you, now that I'm osteopenic, I wouldn't want to do that. [ ] bony overgrowth Hi Cam, Llweyn, Sharon, , and friends.Thank you to all of you for reading/responding to my story. Your words of encouragement and support mean so much to me. You are an incredibly compassionate group.Cam, it was funny you mentioned Falls on the Rideau Canal, because we just boated through those locks about two weeks ago. Although I've lived about a half hour from there all my life, I'd never gone through the locks by boat. It would be great to meet next time you visit the area.Llewyn, I would be interested in getting the Canadian scolio info you mentioned. What a coincidence that we had the same HR surgeon!I am gearing up for my appt. Oct 29. I was wondering if anyone out there has encountered this "bony overgrowth" and how to stop it. The way it was described to me was that when my spine was fusing, it just continued to create more and more bone over the years resulting in an increasing hump in my lumbar region. The local ortho says my fusion is solid there, but then why did my lumbar curve worsen significantly?I'm starting to feel really compressed in this area and have difficulty sitting, especially leaning back on a hard chair. Has anyone heard of having it removed/reduced?My other question has to do with osteoporosis. I had early menopause (no periods since age 42). Now I've been having bone density tests showing I'm getting osteopenic. Wondering how this impacts on possible revision. And if they give you something to halt bony overgrowth, would that also impact on getting a solid fusion?I'm probably getting ahead of myself, but just want to be prepared for my appt. Any info or questions I should be asking would be welcome.Thanks and best wishes to all on their scolio journey. Especially thinking of , who sounds like she's been through so much. Ask a question on any topic and get answers from real people. Go to Answers. Quote Link to comment Share on other sites More sharing options...
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