Lilly USED to have a trainer, come out and instruct new patients.
I don't know if this is still available where you are.

Giving the shot is not as big a deal as determining what amounts of calcium and Vit D you should use with it.

I hope this new treatment works for you.
I wonder if IFC would work for you. This is inferential current, and stimulates healing. You should ask.

And yes, I have a mattress topper which I needed to sleep on when I had my acute phase of my leg injury. But it was a devil to move on, roll over, sit up etc.
And it is not as thick as the full memory foam mattress! I wonder if a non memory foam mattress
pad over your bed, might help?

That is good that your inflammatory markers are down. That is some good news to focus on.

On the mattress....I have a pillow top mattress, to which I thought I should add a memory foam pad....I agree with Billye....I was stuck. On the otherhand, at times when pressure seems to bother me more...the memory foam goes back on. Off and on, off and on....off and on. Hmmm, does any of this sound familiar to any one? I wonder about those air mattresses...aha, I remember, Sleep Number Beds.

Billye, I assume they are monitoring your blood calcium levels.....

As frustrated as I get with my docs at times, I almost fell off my chair last week when one doc, told me that my neuro had spoken with him regarding information I had sent to the neuro, within days of the appointment I was at...in other words...I sent a package of info and within 5 days, the two had communicated regarding my case. That is really good. I am amazed and blessed, as this is a huge medical center. I was also chastised regarding my not reporting my adverse effects with Neurontin to the doc.....It pays to be vocal. I have found that if I send stuff, the doc can look at it in his 'spare' time....but that is regarding stuff to ponder. It kind of upsets me in a way too, as I know I am a higher priority than I originally thought........if that makes sense. The word disability also came up...and I have to laugh, because I was self employed over 10 quarters went by without a contribution to social security, so I am out of luck....NOW they bring up disability! Eh, I will just have to wait til I age up...or the system goes broke. I am lucky to have a husband who supports me. I suppose I should be nicer to him...no more neurontin. Makes me a witch.

If you do not feel right on this Forteo, you call immediately! Do not wait, and also, if you feel yourself getting confused or out of sorts, call the doc.

I got a tempurpedic when I has surgery, and it was good because it held me totally in place, but soon became hard to get out of. Under it was a new super firm mattress, which I thought was the way to go. Just last month I replaced it with a newer Simmons/Sealy posturepedic with a softer top.

1-800-mattres (leave off the last S for savings!) delivers here in NY, and will take it back if you don't like it and bring a new one. They've been very helpful on the phone, with good suggestions for people with back issues.

I'd bet they even come to tiny towns in texas...

Checked with my bone guy on calcium/D for Forteo and sent it on to Billye. It's a guideline, at least.

We have 3 of the Visco Elastic foam memory toppers. One is 3 inches and the other two are 4 inches. So we have 11 inches of memory foam over the old mattress. Alan would shoot me if I ever try and replace what we have in the bedroom. You climb up and get in this bed and you don't want to get off. No pinchy places, no bones hitting anything. Obviously, this can't be to everyone's taste. And if I had my way, and I had the money, I'd throw out everything and pay $1000 for a brand new Temperpedic mattress.

But until I get rich I'll just sleep on this cloud of comfort. The 4 inch one comes with two pillows. We got them all from Overtstock.com. Very cheap too. And it sure was better than buying the whole mattress.

And the best part about buying a mattress topper is no one knows you are getting it. If I bought a brand new mattress, all the neighbors (including my landlord), would see this mattress truck drive up and they would go, "Oh, Melody is purchasing a brand new mattress, my, she must be doing well for herself". Believe me, landlords LOVE to say this.

So we bought (at different times), the 3 mattress toppers. They come all compressed and they come in a box about 2 feet high. You would never know they contain a foam topper.

You uncompress it and lay it on a table where it has to breathe for one day.

We did this 3 times. You should see the thickness of the 4 inch one. It's amazing.

I'm telling you, Alan is in love with our bed. So we have a mattress and 3 mattress toppers, and all this is over a box spring.

If we didn't have the mattress toppers, my bed would be so low, we'd be on the floor.

Melody

Melody, Liza Jane is so totally right. The Tempurpedic is wonderful, .....unless......you have to slide your body. When a nerve is involved like this one is it hurts to move 1/8 of an inch. You plan every single tiny move. And laying down and not being able to put your heel down on the mattress and scoot is agony!! The body simply isn't able to move itself when there is this much pain. And this mattress is not good in this condition. Not being able to simply turn yourself over in the bed is agony!! Last night I lay down on my side, winced, tried to put a pillow between my knees, couldn't, then rolled to my back and couldn't lay straight. I strained to get my cell phone and called my husband. He came and helped me put a pillow under my knees. I stayed that way until 2:00 a.m. I had to sit up sideways and pull myself off the mattress. I've not laid down today because I'm afraid I can't get up again. This is the pits!

There isn't any position that doesn't hurt. I got the CT scan report today. I am broken in so many places that I didn't know. I kept thinking, it's all inflammation. But if it was, then it was inflammation from all the breaks. My pelvis is broken in two places. The high bone on the side of the body (ishial, I think ) is cracked accross to the sacroilliac joint on one side. Both wings of the sacrum are cracked downward and then accross the spine at S3. I don't know how I'm walking. Well....I'm not. The crutches are my legs right now.

But, we'll get there. I'm starting Forteo tomorrow. I have help from Liza Jane's bone doctor and hopefully they can recommend someone in Dallas.

Billye

Hi Billye, I'm glad the info from the bone doc helped. His nurse was very upset to learn about you, and promised to find out whether he has someone in Dallas for you or not. She was really helpful. I'm wondering if you'd send me a copy of your CT scan. I think I might be able to get them to actually look at it and come up with a referral after seeing it. I think it's going to be dramatic enough that it might stir them. This is a practice devoted solely to osteoporosis and healing bones. The nurse said it's possible I've had some healing from the Forteo in the two months I was on it. She was both disappointed and happy that my symptoms cleared, and she's setting me up for some more tests of bone function, a CT of my spine to see if ther's been any healing, and then, maybe back onto Forteo once every few days, rather than daily.

The doctor operates on people with spontaneous fractures 2 - 3 days a week. When he told me that, I was floored, and I asked how that was possible. His answer was, with lots of glue and cement.

So maybe you're a candidate for that.

While serum calciums are followed with Forteo, his protocol is only once, I think. It shouldn't b elevated for more than a few hours after the injection.

good news! Far better than going around in circles with all 'professionals' going DUH?
I do know that I am truly benefitting from your experiences, tho in partial hindshight. I also wish with all my heart that none of us had to 'learn' from these experiences!
I believe that a dialogue on mattresses -types and the pros and cons of each from our own personal viewpoints could be useful but for a new thread.
All in all, I wish I could asorb all your pain and ease your life for even a minute! I am not sure that I could do the asorbing, nor take any extra aspects of pain myself. So, I'll be selfish in that quarter. I will tho, truly hope that SOMETHING, Combo or whatever...can help you and NOW.

's from my heart...Be super careful now, this moving about stuff is truly dangerous? - j

I'm just curious. If one does indeed have back problems and the Temperpedic mattress is not a good fit, so to speak, then what is the best possible mattress to purchase.

For example, if one had no money problems, and wanted to purchase a new mattress, and that person had sciatica, or just plain old back problems going on, what would be the ideal mattress to buy. And should it be soft, firm, orthopedic, etc.???

I remember years and years ago, when Alan and I went to buy a mattress, I never saw so many descriptions of mattresses. We sat on all of them, just to make sure. There was firm, ultra firm, securely firm, orthopedic firm, medium firm, ultra this, Kingcoil that... I mean, we went crazy, went to so many mattress stores. We ultimately got an orthopedic something or other, but I'm just curious. If I ever win the lottery or some rich relative calls me up and says "name the mattress you want, which one would any of you purchase?

I mean, there must be the Best Mattress in the World, somewhere, right??

Melody

http://www.utsouthwestern.edu/utsw/c...es/108435.html

Charles and Jane Pak Center for Mineral Metabolism and Clinical Research
Program Director
Khashayar Sakhaee, M.D./Chief of Mineral Metabolism
5323 Harry Hines Blvd
Dallas, TX 75390-8891
214-590-7783 or 214-645-2870 (Voice)
214-590-4091 (Fax)
Khashayar.Sakhaee@UTSouthwestern.edu

I saw him yesterday and told him about Billye. Someone at the school is doing the glue repair also. Sorry, can't recall his name, but there is definitely someone doing this there.

His workups are EXTENSIVE and he said he would see her. If your doctor in New York knows him, he probably could get her in sooner, particularly since this is urgent... If there is anyplace better in Dallas that relates to mineral metabolism, I sure don't know where it would be, though there are other Professors/researchers there in the Pak Center...

Cathie

I appreciate all the help in this subject. But when it comes down to the final call, I have to run my own race. I have an endocrinologist who is versed in this med. I faxed her all the info yesterday and I expect to hear from her. I need a local to work with also. The players are all in place. I do not relish putting "glue" into my body and I don't think there is any way to glue all the parts I've got broken. The last time I had something foreign put in my body, I got the gift of Sjogren's from it. At this point, it's not just one break, it's many many many. I don't want to start trying to glue them all. If this one in the groin fails to heal on it's own in a short while, I may consider it. But over all, I'd like to see my own bones grow.

Cathie, I am familiar with Dr. Sakhee. I was a patient of his many years ago. He told me years ago that I didn't need to take Fosamax. That I didn't have a bone problem. So I hesitate to go back to him. We'll see. I need to do this. But thank you all so very much for diving in to help me.

Billye