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OsteoPETrosis and bone graft fusion

stonedbonedsstonedboned Posts: 2
edited 10/29/2015 - 2:10 AM in Back Surgery and Neck Surgery
I have a rare bone disease called osteopetrosis and just had surgery for a spinal compression. After waking up I could barely lift my arms and legs so the doctor did a cat scan and found an extra piece of bone in the front so back to surgery I went. When he removed the extra bone it made a small tear and I was leaking spinal fluid. I ended up in the ICU for 6 days. The doctor said the bones in your neck are usually spongy like but mine were solid like a rock. He ended up taking 2 disks out and caging 4. Im very concerned about the bones fusing.The doctor had never heard of my bone condition so Im wondering if he should of done it in a different way. Can anyone tell me anything about this disease or what will happen if the fusion fails...I cant find any doctors who know how to help me. They cant even get any bone marrow to test, they have tried 4 times and cant get a drop. Any info would be appreciated..Thank you

Spine-Health has a number of articles. Here are some:
Definitive guide to Osteoporosis
What you need to know about Osteoporosis

Spine-Health has an another web site called: Osteoporosis Health

Welcome to Spine-Health

One of the most important things that members can do is to provide the rest of the community with as much information about themselves as possible. It is so very difficult for anyone to respond when we do not have enough information to go on. This is not meant to indicate that you are doing anything wrong or violated any rule, we are just trying to be pro-active and get the information upfront so that people can start responding and your thread is more effective.

So many times we read about members who have different tests and they all come back negative. The more clues and information you provide, the better chances in finding out what is wrong, The fact that your test results are negative does not mean that you are fine and without any concerns. Many times it takes several diagnostic tests and procedures to isolate a specific condition.

Here are some questions that you should answer:

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  • . Physical Therapy
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Providing answers to questions like this will give the member community here a better understanding
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What could be good for someone could spell disaster for another.
You should also consult your doctor to better understand your condition and the do’s and don’t’s.

It is very important that new members (or even seasoned members) provide others with details about their condition(s). It is virtually impossible to help another member when all the details we have are

I’ve had this for years, it hurts, I cant move my shoulder – what could this be, what treatment should I get?

Diagnosing spinal problems can be very difficult. In many ways it’s like a game of clue. Especially, when the diagnostic tests come back negative – no trouble found! Then it’s up to the patient and the doctor to start digging deeper. The doctor is like a detective. They need clues to help them move along. So, you as the patient need to provide the doctor with all sorts of clues. That is like it is here. Without having information about a condition, its impossible for anyone here to try to help.

Specific comments :

Personal Opinion, not medical advice :

--- Ron DiLauro, Spine-Health System Moderator : 10/29/15 08:08 est



  • RunnerHKTRRunnerHKT Posts: 231
    edited 10/29/2015 - 2:15 PM
    the best thing for you to do is to look for a support group for this disease, and also to refer your doctors to the person who diagnosed your condition. None of us can really definitely comment about the procedure or if it was appropriate. I'm unsure why your would have chosen a surgeon for a bone procedure who was unfamiliar with your disease. You can search on NORD rare diseases.org.... for physicians who are experts in your condition.
  • stonedbonedsstonedboned Posts: 2
    edited 10/29/2015 - 6:38 PM
    I am 44 years old and three years ago my bones started hurting. I fell one night and went to the ER, they took x-rays of my neck and came in and told me " my bones looked funny" and sent me to a cancer doctor. My bones are glowing white on x-ray. So they did a bone marrow aspiration and only got 1cc , not enough to test for everything. Then it was MRI's, CAT scans, nuclear imaging no one could figure it out. After almost 2 years of seeing countless doctors, I was diagnosed with Osteopetrosis. Its so rare no ones what to do for me except deal with the problems it creates. Like my spinal compression. I told the surgeon he needed to research it before doing the surgery but I don't think he took it to serious. No one does and I try researching it myself but they just don't I now much about it . I cant find any doctors that do. I'm just trying to find out if anyone knows anything about if a bone graft would fuse with a bone that's not spongy but completely solid. My bone marrow is turning to bone basically. I cant find any doctors here with any knowledge of what I have. Sorry for the lack of information. And thanks for the comment
  • SavageSavage United StatesPosts: 5,476
    I am not familiar with your situation...but wanted to say I think Runner had some good suggestions of where to look for the expertise you need.

    Advocating for oneself is not always easy and it is not easy when not feeling well.
    But seems a need to continue to press on and tell your situation until someone understands or refers you to one who does.

    Again, I admit ignorance, but wondering if anyone in the arthritic field would have referrals for you??

    Do you have a good support network around you? ...friends, family?
    Sometimes having someone we trust accompany us to at least some of our doctor appointments can make it easier to remember what was said.
    On occasion, my sister would take notes, and I gave her permission to ask her own questions, also.
    For me, it's so easy for me to overlook something while I'm in the office.

    Since it is documented as rare, it means that there are others fighting the same battle.
    In that, there is at least small comfort that you are not alone.
    Stay strong as you continue to search!
    Spine-Health Moderator
    Please read my medical history at: Medical History

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