I'll be glad to post this elsewhere but I wasn't sure where to put it. You all know I've been dealing with multiple sacral and pelvic stress fractures since Oct of 2007. I got the results of the latest pelvic CT scan yesterday and it is worse than it was the last time. The pubic bone on the right side is misaligned and will not heal in this position. I have a new one that has opened up on the wing of the ilium toward the sacroilliac joint. The others are in various stages of healing or breaking. I've been taking Forteo for 4 months and I'm still breaking. But how will the edges of the one that is misaligned ever meet up and heal.

I made an appt. with the Metabolic Bone Clinic at SWestern Medical Center in Dallas. A big medical university where they are teaching our doctors. I saw the professor of the Clinic with 3 medical students. No hands on exam. He wanted me to stop my Forteo and let him do a bunch of testing. I'm 4 months into a 2 year program. I'm not stopping until that 2 year period is over. So we ageed he'd leave an open door and to call if I changed my mind. He also agreed to send a letter with his findings (? what findings), suggestions and testing he thought should be done. This was to go to my Rheumatologist who referred me to him.

I get my copy of the letter on Monday. It's addressed to the neuro I saw at SWestern over 3 years ago. He mentioned during the interview that he'd send him the letter and I corrected him then. Obviously wasn't listening to me. He then stated I had told him I had had bilateral fractured knees. No...bi-lateral knee replacements. He said I didn't seem in any distress. I stood up from my wheelchair multiple times during the interview because I was hurting too badly to sit. And he ended the interview by tellling me he'd send a letter suggesting tests that should be run to investigate. The letter mentioned no test suggestions. I blew the ceiling off the top of my kitchen when I read that ridiculous letter. So I phoned the office, got the correct person on the line and made her day. So now I've received the corrected version of the letter and it still has fractured knees in it but the rest of it has been straightened out and the correct doctor is getting it (I hope). So I'm not anxious to go back to that place again. That is my second terrible experience with them. I will not return again. Wasted time and money.

But back to the original problem. I have a bone that cannot mend. It's not physically possible. My bladder has no support which is causing problems too. And the pain from all of this is just unreal. Do any of you have any suggestions for how they can repair this break or what type of doctor to see? I don't even know where to start.

Billye

I must admit I'm stumped, but I'm also furious on your behalf. Why should anyone take his recommendations seriously if he doesn't even know or care what bones are broken?? And he says you're in no apparent distress - does he think you're in a wheelchair for FUN?

I wish I had something more constructive to say. My heart is breaking for you.

fanfaire

so they can't align the bones and put screws in it?
Or do they think that wouldn't work?
Why can't they go in a and surgically support the bladder?
I knew of some ladies at work that had things like that done many many yrs ago.

sorry if I'm missing some details, but it seems that would be a logical step unless there is some reason that it is not an option.

I feel very badly for encouraging you to go over there. I was so in hopes that you would be able to get some of the bones cemented back together. You know, I emailed him about that; he never mentioned that there were problems from that...

As you know, I saw the same doctor before you did. I now am questioning some of the recommendations that were made, one thing was reducing my calcium intake (could be because of kidney stones though.)

I have already gotten my Internist to rerun the 24 h urine for uric acid that was done there ...

I have had earlier problems at the school, but they were in the Dept. of Neurology.

I am just appalled that this happened and regret that I recommended this. I hope you can forgive me... When he said he knew of someone there who could cement (or was it glue) the bones back together, I was so excited for you.

Cathie

My recommendation...a good spinal doc; preferrably and OSS along with a GOOD Urogyn and even a spinal PM. I have written before a few times and grant you I don't have stress fractures. I do have a fractured coccyx and minor prolapses. But between my PM and Urogyn they have pretty much sorted it out. And, yes, I know...my issues are different. But the sit pain can be awful! But since you are speaking of the sacrum, illium, sacroilliac joint, and bladder. These are the docs I would see. Oops, I did want to mention the bladder. My prolapses are actually minor and are a cystocele and rectocele. The thing I found out later is that if they were to do the repairs, they would attach the sling at the sacrum! And that is precisely where I have nerve damage or lumbar/sacral pain. So, I am holding off and doing pelvic floor PT to release spasms caused by the nerve damage. So far so good because the prolapses are actually being helped by this. And it will be injections for the coccyx because it has been recommended to NEVER have that removed. I wish I could be of more help.

I saw a program on TV that said "soon" there will be a cement that doctors
will inject into a broken bone and you can go home with no cast...no support.

I don't know where this is being trialed however.

http://news-service.stanford.edu/new...onecement.html

Your weight bearing area would be more problematic.

Do you have a hip replacement on that side? I forgot if you have hip
replacements too?

Having had a son who fractured his neck and is now crippled for life,
it was the docs at the shock-trauma center that saved his life.
The surgeons at the emergency trauma ER at the hospital were the ones
who removed his C-5 and put titanium in place of it.
Maybe you should look into that area of surgery/surgeons for some ideas.

Also, I've heard of a mesh 'sling' type support for organs that have lost
their support, either thru muscle/tendon problems or bone problems.
Have any of your surgeons looked into this for the bladder support?

The CT scan was actually run by the new GYN I am seeing. She says the bladder needs sling surgery like Roxie has had done, but she has to go in thru the vaginal area to do that and she says frankly my vaginal tissue is in such poor shape due to the Sjogren's dryness. She's now treating me with Premarin in pill form and the Premarin vaginal cream to see if she can get the tissue in better shape. She says that in it's current condition the surgery wouldn't heal.

I've been told by the first orthopedic surgeon that putting a plate and screws in the misaligned bones would do no good. The bones are so fragile that the screws would pull out of the bone and I'd have a worse mess.

Mrs. D, I knew about the bone glue but they are having some issues with it. The doctor at SWest said they are finding that sometimes the glue migrates into other tissues and can make things worse. The doctor I saw there would not recommend it. There are doctors in Dallas doing it I believe. No, I don't have hip replacements at this time.

I'm seeing a new orthopedic doctor today. My left knee is giving me lots of problems so I got an appt to have it looked at, I'm afraid the prosthetic in that knee may be slipping. I'll ask this doctor about what she would do about the pelvic and sacral issues too.

It's just a mess.

Would you believe I can walk tho....sort of.

Billye

Dear SiverLady,

I am "new" to the forum and we are not acquainted yet.

I do not have a any fantastic advice, unfortuantely. I wish I knew the answers... in order to share them! I'd love to be able to help in some way.

I am outraged with how you were treated.

I hope and pray you will find good answers and very helpful doctors sooner than later! You have needed to be a very strong person. You deserve to be treated better than you were. All of this must be so very trying and tiring at times.

I admire your ability to do whatever you must in looking for the answers you need and deserve. You also deserve to heal... on all levels. I hope this is an option in the very near future for you.

Your story deeply touches my heart and I wish I could do more to be helpful to you.

Do you mind if I pray for you? (I always ask for permission, as not everyone wants to be prayed for. I have a list of people I pray for every day; I would simply include you in my prayers. Yet, I also understand if you feel uncomfortable with this; some people simply feel uncomfortable. I am fine with whatever your response, SilverLady, as I totally respect everyone as an individual! Just trying to finds ways to be supportive to you and your situation.)

May you continue to find the strength to pursue the answers and the help you need!

I can't believe what a ***** that metabolic guy is. I don't know how he got into that subspecialty. Some get in through being endocrinologists and others by being orthopedic surgeons. I'll be this guy is an endocrinologist and is scared of you. How he could tell you to stop the Forteo is beyond me.

You need to be on Forteo for 2 years to get full effect-that's the protocol, and you've only been on a few months.

Did the report say the aligned fractures were healing but the non aligned were not? Because I did think there was some healing. So maybe the non-aligned need to be glued, which I know is hard to find where you are.


You need better doctors; can you get back to Mayo? Or NY? (You can stay by me, as we say here). I think someone needs to look more carefully at what is going on, and this bone guy is not worth his weight in salt.

Did he evaluate what state the bone is in now? Is bone forming, turning over? Did they do a 24 hour urine for NTC--the collagen test that shows whether you're taking bone down.

It's a bit weird for your osteoporosis to be getting worse at this point, when you are getting so much treatment for it. If they didn't do the urine, I think they should. I don't know what else, but a deeper look.

The bone metabolism guy I see here is an orthopedist.
He sees three illnesses: bone cancers, Paget's disease, and osteoporosis. He spends 2 days a week evaluating patients and 2 days doing surgery on them, mostly spine.

I just wish you had better doctors.
and prescribing things like Forteo and 2