I have an update for you all. As you know, I'm over a year post-laminectomy and fusion, and have had zero bone growth, so the surgery has failed (not because of the surgeon) because of something inhibiting bone from scarring properly.

The spine surgeon I went to in NY last month suggested I see a metabolic bone guy, as he wanted to re-operate on me, but wanted to understand my bones first.

I saw the guy today. His office, like that of all my current back docs, has chairs that are raised with a step, easy to get into and out of.

He took my history as I laid on the examining table (it was a bad day for sitting), telling me be comfortable lying down, most of his patients have trouble sitting, and I should just be comfortable. He was appalled at my being treated with dexamethasone nasal spray afteer the surgery and asked, outright--did the guy who prescribed it realize I'd just been operated on?
When he saw that my pituitary had been suppressed, he said that of course no bone formed, it couldn't in that situation. He said BMP, the bone morphogenic protein they use to get the bone to fuse, requires that it be stimulated by an inflammatory reaction and cells come to it and it will make bone. Otherwise, he said, it's just a glob of jello that will be gradually absorbed.

He also doesn't like that my TSH is low from the thyroid medicine I take. I told him that I dont' feel well when the numbers are in the normal range, I need them well to think clearly, and he wasn't happy.

In the end, he said, I will get better. He wants me to take Forteo, parathyroid hormone, by injection daily. He said this will stimulate osteoblasts and not only helps people with osteoporosis, but helps people with fractures (I'm kinda a fracture patient, in a way) to heal. I will need it for 3 - 6 months. He wouldn't let me be operated on before then. (Not that I wanted to be) He said there is a good chance I can still fuse if my bone gets active, which it will, and a good chance my pain will improve.

In the meantime, he wants my endocrinolgoist to change my meds (I don't think this is good) and is very optimistic.

When you go on forteo you go to a patient education class first. In the class, Lilly gives you your first "pen" with a mnth's supply, for free. At that point the doctor and Lilly work to get insurance approval and authorization. It gives them a month to fight for you, if you need that. Otehrwise, it's just a free month. Without insurance, the drug costs 600- 750 $ a month.

Oxford does cover it. Yaay!

The guys is a sugeon, an orthopedist who did fellowship in metabolism of bone. He sees only patients with osteoporosis,Paget's disease, or bone cancer. He operates two days a week. I said what's to operate on if this is your specialty? The answer was (THIS IS FOR SILVERLADY!) that his patients have severe osteoporosis and get spontaneous fractures all the time. He fixes fractured vertebrae by injecting them with cement and glueing them or wiring them together. He cements long bones and little bones in the feet and hand. it's all he does is fill in bones and give medications to help them heal.

And he is not the only orthopedist bone metabolism specialist---it is an entire subspecialty.

I feel hopeful, and really hope this information helps others, who, like me, had no idea these guys existed.

http://www.google.com/search?q=ortho...e7&rlz=1I7GWYA

LIzaJane,
For what's worth as I read your post I came away w/ a "good" feeling just based on your description of the new doc and his approach to you as a patient. It seemed that he was interested in your whole picture not just that portion related to his specific subspecialty. From my limited knowledge of BMP and PTH what he described makes sense to me.

I hope he works with you and your endocrinologist to address your TSH levels so that you can think clearly. I'm happy for you too that your insurance recoginzes the value of the PTH therapy and will cover the expense.

As you said maybe this can help Silverlady too. Thanks for the upbeat post and many good thoughts to you.
Alkymst

very good news! (and yes, for Silverlady potentially too!) Sounds like this guy knows his stuff - and you've got nothing to loose....

Keeping fingers crossed

(I hope this didnt post twice - I just wrote a response and must have sent it into cyberspace - but if it does appear - sorry!)

Good news! How cool!!! I hope he will help you avoid surgery, and you will fuse LizaJane. But, since he does all of this special repair, why can't he just glue/fill the screws in where they are supposed to go?

Wouldn't that be spectacular if he, or someone like him could repair some of Billye's fractures in this manner? Never heard of this kind of doc before now.

I am probably not far behind Billye w/fractures and I do have Osteoporosis.

Did you happen to find out what kind of cement is used in bones?

Cathie

--especially from the standpoint that this individual sounds like he is concerned with the interactive effects of your medications with your "presenting" problems.

While I'm not as versed in the particular subject of the interaction of thyroid and parathyroid with bone issues as I am in some other hormonal/metabolic areas (though my mother did have a parathyroid tumor removed some years back that was causing her serum calcium to go sky-high), I do know that there is a delicate negative feedback mechanism that balances the release/absorption of calcium needed for bone formation and that the thyroid/pituitary are involved along with the parathyroids, as are magnesium and Vitamin D--and that there are a lot of points in the loop where disruption can occur (as you of course have found out). If this doctor has experience/knowledge of the subtleties here, that can only be a good thing. My other thought on this would be to make sure you optimize your Vitamin D level--as light complexioned people who works indoor, I suspect we both might need a little supplementary boost. Especially if bone formation is an issue, raising of D3 levels to higher levels might be indicated. (There is considerable evidence that what are--or were--considered optimal Vitamin D levels may in fact be way too low; there's an enormous thread, with lots of citations, in the OBT Vitamin forum that discusses this and gives opinions from many sides.)

I'm glad your feeling more hopeful and I hope you find the relief and answers you need. There are so many docs I have never heard of. Its frustrating to know which ones to go to. Good luck

This doctor does sound like he really knows his stuff, i have seen first hand what can happen when the pituitary gland isn't working properly and not making up the chemical's the body needs. it all sounds very promising, good to see your luck is changing

Liza Jane,
Cathie,
Kmeb,
Alkymst,

and all the rest of you. I spent most of the night searching on line for metabolic bone specialist in the area. So far I have found none. Liza Jane, the Houston area looks like it has some, but I am too far away for that trip. Texas is a BIGGG state. It would mean another trip similar to Mayo and probably repeated trips and my husband can't drive that far since his back surgery. And with the sacrum fractures, I can't do the car rides. You know what I mean. I'm making some calls to some local otho's today to see if they know anyone in the Dallas area who does this type of thing.

My pain doctor is also a neuro and he may have some recommendations.

Thanks for the post tho, it made me understand the conversation we had much better. Keep posting and let us know what you find out.

There are a lot of people who would be interested in this info in the Sjogren's forum.

Billye

I forgot--the best thing about the visit to the bone guy was this--he said that with the hardware failure I have, I have MICRO movement of the joints. He said that as long as I have micro movment, I can still get fusion. So, he says, the whole thing could heal in 6 months, despite the current state of things. As soon as I get the forteo I'm putting the bone stimulator back on!

Today two epidurals today--L5/s1 and L4/5. The 4/5 one mimicked the worst of my leg pain, so I"m hoping it gives me a few weeks of relief, and an ability to enjoy some vacation time in a car.

Thank goodness for good doctors, hard to find but they are out there. Most likely fixing the mistakes of other idiot doctors.

Good Luck Liza, it does sound very hopeful!