Uh-Oh Call about bone density

[Kathy]

I am sorry that this is going slow. I did the same wait on medical records, paid over $60 for them, and then got the wrong ones! I had to sign a new release, wait some more, pay more money and still did not end up with the complete record. It is such a pain in the rear dealing with all the medical crap that us spineys deal with on a regular basis. Makes you just want to throw your hands up and quit, scream, cry, choke someone..... Not like we have tons of energy to start with, then we have to waste what little we have on bullsh*t. Just know, that the day will come when you will have surgery and be on the road to recovery (I know it's hard to envision that when everything seems to be going wrong; but it will work out).

[treefrog]

I finally got hold of someone at the place that copies the medical records, they will send them out again. But still, where did they end up (if they were sent at all)? That is confidential information, and it upsets me to think some stranger could see it.

The place that did the bone density test, is within the same practice as my PM doc and one of the surgeons that I saw. I will call my PM doc, and ask if she can look it up for me. She is usually very helpful.

And I need to make another phone call. I don't remember if I mentioned it here, but when I went to have the bone density test done, I was talking to the woman doing it. I ended up telling her I was getting it done, because I was considering surgery. She asked who I was going to, if it was one of the surgeons with their practice. I told her I had seen one of their surgeons, but that I was considering going to Germany. She said that a guy that works there, had gone to Germany for 2 level disc replacement (I'm pretty sure she said lumbar) in December and that he was set to come back to work part time soon. I asked if she would mind passing on a message, that I'd like to talk with him, if he didn't mind. She gave me her email address and said she would pass it on, when she saw him next.

Yesterday I got an email from him, Bryan, and he gave me his phone number and said to call or write. I feel a little strange calling someone out of the blue, but I am hoping that weird feeling will go away pretty quickly when we start to talk. I find it extremely interesting that someone who works at an orthopaedic office, with surgeons who do ADR, would choose to go to Germany to have surgery....it says a lot.

[treefrog]

So, my PM doc's nurse faxed me the records that were scanned into their system (designated as bone density). But I am having a difficult time figuring out what it means, though I am not seeing numbers that I am concerned about (and am actually wondering why they want to see me). I'll try to describe the pages.

First Page
There is an image of my spine (though on the fax it isn't clear at all) with lines through it; next to it is a graph, with BMD (g/cm^2) on the left y-axis, Age on the x-axis, and Young Adult T-score on the right y-axis. Below the graph is a table:

Region_________BMD______Young Adult T-score____Age Matched Z-score
L1_____________0.836__________ -2.5____________ -2.2
L2_____________0.991__________ -1.7____________ -1.5
L3_____________1.003__________ -1.6____________ -1.4
L4_____________1.155__________ -0.4____________ -0.1
L1-L2__________0.912__________ -2.1____________ -1.8
L1-L3__________0.943__________ -1.9____________ -1.6
L1-L4__________1.005__________ -1.5____________ -1.2
L2-L3__________0.998__________ -1.7____________ -1.4
L2-L4__________1.058__________ -1.2____________ -0.9
L3-L4__________1.087__________ -0.9____________ -0.7

The next page is the same table above, but with more columns - it looks like it is a measurement of the bones, and there are %'s next to the T-score and Z-score numbers.

The third page says DualFemur Bone Density; again it has an image of my bones with lines through them; a graph with the same axis labels; and a table with the same column headers. But the regions are listed as Neck; Neck Left, Neck Right, Neck Mean, Neck Diff; Total, Total Left, Total Right, Total Mean, Total Diff.

I won't try to duplicate this table, the numbers are all between -1.3 and 0.6.

Anyone care to explain? I think what it means is that I fall into mild osteopenia, particularly compared to other women my age. But it doesn't appear that my bone density is anywhere near what would be of concern for having ADR surgery. Please let me know if I am wrong in my interpretation.

Oh, and unfortunately it doesn't go down to L5 or S1. And it appears that higher up my spine is actually worse than lower.

[phylly]

Cathy,
Don't feel funny about calling for information especially if he gave out his phone number. I think that is great that you can talk to somebody who has gone recently and ask why he went yo Germany, and also find out more about the surgeons in your practice. Sorry I can't help about the table, I always have trouble with those. I am glad you finally got your records, better late than never.
Phylly

[Kathy]

Cathy,
I second Phylly on calling the guy. I have often times given out my phone number to people who are wanting to talk spine. It is easier for me to talk on the phone, than to try to type it all out. It takes so much time to type out your thoughts, explain why you did something and etc. It's much easier to talk on the phone, takes less time and is more personal. I just call and say who you are, ask if it is a good time for him to talk, ask how recovery has been, how surgery was and then start asking away! Those are some good 'ice breakers' and will give you the opportunity to listen and get comfortable with him. JMO, Kathy

[treefrog]

Oh these are not the records I was waiting for, this is just the bone density results. I was frustrated that I was possibly going to have to wait until I had the appointment to find out these results though. The medical records I am waiting for, are all the notes from the radiologists and the injections (all the stuff I need to get other surgeon's opinions). But at least now I don't think I have to postpone surgery (talking as if I actually have it scheduled - how's that for wishful thinking) for low bone density. Well, I don't think I need to postpone the next steps in scheduling surgery, that's more accurate.


I did call the guy who had surgery in Germany back in December, he was very informative. It turns out he went to Stenum. He had 2 levels done, L4/5 and L5/S1, with the Maverick disc.

He told me that Triangle Orthopaedics (in NC) is one of the top 5 in the US [well I don't believe that, of all the reading I've done on spine surgery, Triangle Ortho has not come up very frequently, if at all], but they offered him fusion or hybrid surgery (or clinical trial - still only 1 disc)*. And from everything he has heard, he didn't want fusion at all costs, unless it was absolutely the only choice left for him. He also said that the surgeons at Triangle Ortho have done ~50-60 single level ADR, and ~2-3 two level ADR (compared to 1000's at Stenum, he also said that the US was 12-15 years behind Germany - this I know!).

*This is also my situation.

Anyway, he said that he had chronic pain for many years, since 1996, with periodic episodes of acute pain. Two years ago his pain got to the point, where he had to change occupations. He didn't tell me what he used to do, but now he does IT work. He talked about crawling out of bed, laying down on the floor of the closet to put on his socks and then his pants. During the day he would loosen up a little bit, but that every morning he started off the same way. He didn't take pain meds, only anti-inflammatories, until he flew to Germany. He has a new baby, and a couple other young children, and he wanted to be able to play with them, and return to a more active lifestyle.

At Stenum, they didn't use general anesthesia, just a local and a pill to put him just sort of out of it , as he described it. They had him in a group of about 5 other American's having cervical or lumbar ADR, so they could talk with each other, and be there for each other. He thought that was very comforting, to awake and hear the voices of people he had to come to know.

He is 14 weeks post-op now. He still takes hydrocodone. He thought before having surgery, that he would not have to take any pain meds after surgery, and that he would be back to normal very quickly. He is learning that it is harder than he imagined, and that rehab is hard, particularly the mental aspect.

He was going to go back to work after 12 weeks (or earlier), but decided to wait, giving it as much time as possible to fully heal. And his job was okay with waiting longer to have him come back. He starts back on Monday at 3 days a week for two weeks, then back to full time. He said he would let me know how he does after going back to work.

He also said he would find out if the person he talked to a lot before his surgery (someone else who had gone to Germany for surgery 2-3 years ago) would mind talking to me. And that he was going to send me information on Stenum, the link to the hospital and names of people to talk to there. Though I already have the link, I didn't want to dissuade him from helping me. And I think that the closer I get to having surgery, the more helpful he might be, with tips and stuff.

[Kathy]

Cathy, That is great. It sounds like you are doing all the right things to get to surgery. I know it can't come soon enough. I only have a few more days and it seems like an eternity. Your patience and diligence will pay off. As Dr. Garcia told me, "You have more knowledge on ADR than the nurses that will be taking care of you have". And it's all thanks to these boards. You will be glad that you did all that you are doing to make sure that you make the best decision for you.

On a funny note, Did you pray for patience? We always joke to never pray for patience; because God gives it to you by making you be patient!

[treefrog]

Originally Posted by Kathy Earhart

On a funny note, Did you pray for patience? We always joke to never pray for patience; because God gives it to you by making you be patient!

LOL - that's funny, thanks.