Unexplained back pain

• By windblown
• Posted July 4, 2008 at 1:22 pm
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Hi momofone: Yes I know people who have taken Aredia for osteoporosis, it's very similar to Reclast and Zometa since it's a infused bisphosphonate. Have you called your Dr about this new pain. I would contact him/her as soon as you can.

Do you have osteogenesis imperfecta? Or does that acronym stand for something else? In Oi bones break easily, so I would have the Dr check for a frax!! Generally speaking, osteoporosis doesn't cause pain until you frax something. Some of the frax's are also silent, but since you have another bone disorder along with this, that complicates things a little.

Good Luck...

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• By momofone
• Posted July 4, 2008 at 1:33 pm
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I have seen 3 doctors for this pain and I have had 4 test done none that are conclusive to what is going on. Maybe a compression fracture maybe just the weakening of the bones in the spine. We are going to see a doc on Monday that will hopefully know what is going on and can give me some relief. The doc that is following the Osteogenesis Imperfecta (clinical dx) does not seem to be as interested in the quality of bones that the medication is making so I am trying to find other options that may work better, or may know of the long term effects of this medication. No one seems to really know. But as long as I have been on it is seems like I would not be having many problems now, life and pain should be improved or completely gone. Thanks for your concern!! Do you think an endocrinologist would be more familiar with this condition?

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• By windblown
• Posted July 4, 2008 at 4:10 pm
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Hi momofone: Sorry you are having so much trouble. You say that the tests were conclusive, do you have a fracture? Does the Dr have plans to fix it, and where is it? I don't know if an Endo would be familiar with OI, but they should be able to treat the Osteoporosis.

I see a Dr that only treats Osteoporosis, and she's at a Univ Med Center in the research dept. You may want to contact the association that handles OI and see if they can recommend someone near you. If you are looking for one Dr to treat both disorders, I don't know if that would be difficult or not. You could try to find someone at a Univ Med Center that specializes in bone disorders.

I don't know much about Oi, but the Aredia should be helping your bone density. Does your OI Dr feel that the bone you are making is brittle? I know that some Drs feel that this can happen with bisphosphonates, but it's not the norm.

If you have a fracture I would think they could do something to fix it. Has anyone mentioned kypho or vertebroplasty? These procedures can stabilize a frax, but they use cement to restore the space between the vertebras. Look up either kyphoplasty or vertebroplasty and see if they might help.

If your current Dr isn't handling the pain sufficiently, you could try a pain management Dr. These Dr.s can do other things for the treatment of pain besides medication. There may be some type of treatment they could use to alleviate the pain. Have you tried acupuncture?

Your situation is unusual, so I hope this new Dr can help you out.

Let us know what happens.

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• By windblown
• Posted July 4, 2008 at 8:02 pm
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Hi momofone: Here's just one of the videos you could look at for the procedure's I mentioned. As I said, I'm not sure this would be suggested in your case, but there's no harm in looking into it. Also check on vertebroplasty as well. The link below is for Kyphon International's Kyphoplasty.

http://www.spineuniverse.com/resource-center/kyphoplasty/balloon-kyphoplast y-video-4288.html

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• By Toot
• Posted July 4, 2008 at 11:22 pm
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That is an interesting video Windblown. I didn't realize they could do such a thing. Thanks for posting.

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• By aida
• Posted July 5, 2008 at 3:54 am
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Hi momofone,
I have bones of 90 yr old woman (I am 59) but my osteo is partly due to scheuermann disease and then Menopause made things worse.... I am under an endocrinologist who specialises in osteoporosis - in Australia - and he is leader in the field here. I am now on Forteo as nothing else can bring bone density up by hopefully 20%. Due to my age I dont make bone any more and the medication is an artificial parathyroid hormone which tells the body to turn the calcium into new bone. However you are very young and they probably wont put you on that medication. My Endocrinologist diagnosed the Scheuermann straight away from the X ray; but my fracture of T7 was not showing up on X ray but discovered by MRI. I had the vertebroplasty to T7 and T 8 as well as it was very weak due to the scheuermann. I had no previous bad back pain until this fracture - not caused by a fall - just light housework - rubbing movements with hands. Some victims of Scheuermann have severe back pain in 20s and 30s.
No known cause or cure for this syndrome.
Hope this helps. Aida

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• By QuiltArtist
• Posted July 5, 2008 at 4:26 am
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Hey Momofone,
I read your story. I thought I was young to have such terrible osteoporosis, but you are much younger. I don't really know the kind of doctor you are seeing but in my own case, I was finally sent, like some of the others, to a university clinic. I live in Alabama and we have a wonderful UAB clinic called the Kirkland Clinic. The doctors I go to are in the arthritis department. They cover all the aged conditions. But in some cases, younger people get these conditions way too young.

As far as the video for the spine, there was one person that had that done where I live that I know of. I was told about him when I went to a store for a cushion. The lady at the store told me how he had had the cement treatments. I thought that was what I wanted too!

I asked the doctor I see in Birmingham about it. He didn't even like talking about it to me. They did not do that there. The injections are a liquid cement. It hardens, but the thing you have to know that is at risk is, if you have fractures throughout your bones that are being injected, the liquid can leak through into your blood stream. This is a new surgery and that is why you can have a high risk of a heart attack.

I don't want to scare you but I do want you to have something to think about. In any case, it is really up to you and what your doctor recommends.

As for me, I am on Forteo. It has saved my life. I had no idea I had any kind of health problem until I fell one day. That has changed my life. My bones are also like the bones of a 90 year old. I was 50 when I fell. I am doing a lot better. I think, if I were you, I'd ask about Forteo first and see what they say about why you aren't on that. It's only for two years but it helps build and replace bone. After that, you can still be put on the infusions. That's what I am going to do. I am seeing the best doctors around here for osteoporosis. It took me a while to figure out who to see and what to do, but I'm glad I didn't just stay with my first doctor.

I hope you get the help you need.
Good luck to you,
Trish

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• By QuiltArtist
• Posted July 5, 2008 at 4:41 am
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www.toneyourbones.org

http://www.uabhealth.org/12832/

websites for Osteoporosis

Both of these are from (University of Alabama in Birmingham) UAB, The Kirkland Clinic. The Tone Your Bones website is who we see before we see the doctor. They tell us what to eat and the amount of exercise we should do according to our dexa scan numbers. And also the amount of calicum to take each day.

I have my dexa scans every 6 months, even though medical doctors say we can't have them but once every two years. If you go to a place like a university hospital clinic, I think the insurance companies let them do more. It isn't any higher than the doctors office because it still takes our co-pay for the insurance. But you learn a lot from them.

Anyway, let us know how you do and what you do.
Trish (quiltartist)

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• By mj2
• Posted July 5, 2008 at 8:12 am
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I have severe pain in my low back and bones of my pelvis. I do not have a visible fracture. The microscopic fractures of osteo can cause pain just like the visible fractures do. I did not know I had osteo until the onset of pain, which followed me adding a jog/run to my workouts. They told me the jog caused the "silent" fractures to be increased and not to run/jog ever again. I can handle that rule, but they have yet to get my pain managed so that I can return to somewhat of an active life.

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• By momofone
• Posted July 6, 2008 at 11:05 pm
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Thank you all for your interest and advice on what to do. I go tomorrow to see a Vascular Interventional Radiologist group close by that hopefully will be able to diagnose the problem with my back and hopefully give me relief from the pain. I am now more educated as to the different treatment options and am looking to find a doctor that can help me with the Osteogenesis Imperfecta and the Osteoporosis. Looks like I need to start with another Endocrinologist. Maybe the first time was not the right one. So I will try again. I will post an update tomorrow.

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