Uh-Oh Call about bone density

[treefrog]

Today I had a message on the answering machine, to make an appointment to talk about my dexa scan bone density results. When I made the appointment to have the test, they told me they would only call if the results weren't good. That if they were normal, they would just send a letter. Though I did ask that they not just send a letter saying it was normal, but that I needed the numbers.

And I can't believe I still haven't gotten my medical records. I faxed the release on 2/25.

This is so frustrating. I want to move forward, and I just seem to be standing still. And not at my own choosing, but waiting for others.

I feel like screaming right now!

[trkdoc714]

Cathy,

I had to personally show up at the ortho clinic to get my records. They acted like I was asking them to work extra hours but the office manager got involved and in 5 minutes I was on my way with the records (copies).

Good luck!

Bob

[dshobbies]

Unfortunately, welcome to the world of some people just don't give a damn!

[treefrog]

Yes, well one of the things I am hoping is that I will be able to get my records (or at least an answer as to when I should expect them) when I go in for this appointment to talk about my bone density.

I am a little calmer now. And I'm hoping that my numbers are just slightly into the osteopenic range. I have been taking calcium (chelated) with magnesium and also Vitamin D.

Part of why I am anxious to have some progress, is my job. I work for a large University, and I want to switch careers. I work in a research lab, but for close to a year now I haven't been able to do bench work. I've been doing administrative work. Even if I am better after having surgery, I think it is time for me to move to a different field. I want to do grants and contracts work, which several people have told me that my lab experience will give me insight that will be helpful to doing the job.

But I can't approach the HR person, until I have some concrete plans for surgery. Because what I'd like to try and do, is make this switch in career, when I come back from recovering. And my current boss also needs to make plans for replacing me, but he can't do that either, until I know when I will be going out.

Okay, while I was typing this up, I decided to call again to find out where my records are. I have been given a tracking number and the phone number for the company that copies and releases the records. Of course once again I have had to leave a message - they had better call. According to the doctors office, they were mailed on 2/27.

[treefrog]

The soonest appointment for the bone density results is 2 weeks. I wish it was Friday, I just want to go home now, and not be around anyone.

[mmglobal]

I would go to the imaging center that did the test and insist on getting the report. It's your medical record. I've really had to fight for some, but have always gotten my records when I insisted. Good luck.

Mark

[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.

[treefrog]

I am still waiting to get my medical records in the mail. It is driving me crazy. I want to move forward, toward surgery, and I am stuck. This is so frustrating.

Do you guys think I should do something about trying to find out what happened to my records when they were supposed to have been sent the last time? I mean should I be worried about where they ended up? I am wondering if I should call the place that copies the records and mails them out, and asking them to track it down and see if they can retrieve them. I don't think I want my records just ending up somewhere, where I have no clue. Isn't there some HIIPA violation at work here? Though I don't know how they are supposed to get records to people (offices) without some risk of privacy violations.

[mmglobal]

I'm curious about your hip scores. Your t-score average L1-L4 of -1.5 does not sound that bad, but the localized -2.5 at L1 raises some questions.

[treefrog]

Yeah, it was very strange that the scores got better the farther down my spine it scanned. But I know this isn't all the data that came out of my test, because I didn't see anything about the wrist or hip and they scanned those too. I guess I will see what they say when I see the Dr. next Thursday.
**edit: Oh, so wait - you are saying my hip scores, is that the femur?

Is there anything in particular I should ask?

Still no sign of my medical records.

[phylly]

Cathy,
I cannot believe that you still have not received your records. Isn't that a pain. Can you obtain them when you go in for your visit? I hope you can find out where they were sent, stuff like that also drives me crazy. Hang in there.
Phylly

[treefrog]

I wrote out the timeline for getting my medical records. I had planned on waiting till early next week before calling again, and maybe I should have. But I couldn't bear the thought of waiting all through the weekend, without knowing if any progress was being made. So, I called my doctors office, only left a message. I figure I will let them tell me how long is reasonable to wait.

But, if I still haven't gotten them by next Thursdays appointment with the osteoporosis doc, then I am going to ask them to copy them as I wait. I'm tired of waiting. It is almost the end of March, and back in January I had 'planned' on having surgery in March or at least early April. This is the timing that works well for us financially (as well as can be, and as early as financially possible), though not as ideal for my job. For my job, ideally, I would have already had surgery.

I know, as evidenced by people here, that having surgery with Dr. B can come about very quickly. Though, as far as airfare, buying a little farther out is beneficial. And I still need to figure out the finances, exactly where to get the funds. I imagine that a medical loan requires some sort of estimate of costs. That is one option, another is credit cards, though I don't know if the hospitals can/will take that as payment. At the very least, things like airfare, hotels, and food can go on credit cards.

I have a feeling that after all this waiting and not being able to do anything, all of a sudden there will be so many things to do, and not enough time to do them. I'm not looking forward to that part either.

I think I should start making lists, I do have some already. For instance, I don't know when I should approach my PM doc about extra meds to take with me, and asking to make sure she will treat me after having surgery abroad. I also think that I should ask the surgeon that I saw in the same practice, Dr. Musante, if he will be willing to treat me if I need it after having surgery elsewhere. Does that need to be done before I go, maybe not.

I'm so afraid that there are things that I should be doing now, but I don't know what they are.

[phylly]

Hi Cathy,
Do you have to wait for your records to send to Dr. B before you can schedule surgery? I don't know about him but the Drs. I went to had at least several weeks or more wait before I could schedule. Air fares may be a little cheaper now as it is off season but after April it might be different. I look on Sidestep to get an idea what the fares might be. I guess you do have a lot to do.

I have a hunch that your Drs. will continue to see you when you get back. I have gone back to Drs. that I did not use for the procedures they recommended and they still saw me again. I hope that you can get everything taken care of since it sounds like your time frame is approaching fast. Once you have all your dates together you will feel better. You have a lot to do and I am sure you are feeling pretty stressed about getting everything done especially working too. I hope that everything falls in place for you soon.
Phylly

[treefrog]

Yeah, so I have realized that I need to start making up a list of things that have to get done before having surgery. So I can get them done as efficiently as possible, and so I don't forget anything important.

I would appreciate help from any of you who have had surgery overseas.

Once I have a prognosis and recommended surgery:

-Get a quote for the cost of surgery
-Contact medical loan company's for loans, or otherwise figure out where the funds are coming from (this needs a sub-list of it's own)
-Schedule surgery
-Arrange flights/hotels
-Tell my boss when I am having surgery (my boyfriend will have to do the same) & contact HR about leave time, and possible new position after coming back
-Send email to work department asking for donated leave time
-Talk to my doctors here about surgery, and what help they can give me before and after (including extra meds to take over)



Okay, and now it is late and time for me to go to bed. I will add to this list as I think of things.

[dshobbies]

Cathy,

First thing that entered my mind was extra meds. They don't always translate and you should have a 'just in case' stash. I took Vicodin with me and it didn't touch my pain.

Also, funny but you kind of wear your own clothes over there, even in the hospital so make sure you have lots of comfortable things, for both warm and cold weather.

BTW, I'm so frustrated for you I could $&)(*$#!

Dale

[SandyW]

Hello Cathy,

Catching up from several weeks of being awol. So sorry to hear you are having records problems. There's some +'s living in a small town, records are easy, doctors a little harder .

Make sure your US doctors will see you. When I tried to schedule a follow up with the spine doctor that I had been seeing for the past few years, he refused. Dr. Fenk-Mayer called him and told him Dr. B was referring me. He agreed to see me. However, I was never treated so badly (kept my cool??). A few of his remarks: I told you so. I wouldn't touch you with a ten foot pole. German doctors are irresponsible performing multiple ADR's. Live with it. Nice huh?

Regarding calling other spiney's. I've talked to many people on the phone about my experiences in Germany and my post-op life. It's much easier to talk than to type your thoughts. It helps me too; I enjoy sharing the personal feelings.

So if anyone wants to talk, please pm me with your number and a good time to make the call. I never use my monthly minutes, so that's why I offer to call.

Good luck Cathy with making arrangements. Don't worry so much, it will all fall into place . Sandy

[treefrog]

Thanks Dale and Sandy.

Talking to my doctor's before I go, included asking about getting extra meds to take with me. Some of the surgery stories I've read clued me in that I might need them. I just hope I can get something that will work. I'm not taking strong meds (Opana-ER), though after surgery I'm afraid that I will need stronger ones. Plus I tend to only be able to take a few pain meds, many of them make me sick, so I'm worried that there won't be one that I can take that will work well enough for the pain, and not make me sick. The only thing I can think of, is to try to see if my PM doc can give me something to help with the nausea and vomiting, just in case. Well, I will just hope she has a good plan. I've had a very good relationship with her, and so I hope that will be easy to handle. The surgeon is more of a question, at least in my mind.

Sandy, I never use all my minutes either. But I got more minutes, because I wanted to have the "no long-distance" charges, to be able to call my son wherever he went in the military. Though now he is out, and in one place, it is still in another state. And all of my family is in another state too. Luckily I have roll-over minutes, but they just accumulate and then expire after a year. But I always have like 2000 minutes that are rolled over.

This weekend, I think I will try to do some investigation into medical loans. To see if I need to have a quote first. Also, if there is any problem with using it for overseas surgery (I really hope not). We have other possible ways of getting the money, but I think this makes the best sense.

[dshobbies]

Cathy,

I'm not familiar with property values in NC? Do you own your own home? Does it have equity from which you can borrow? A home equity line of credit might be a better way to go. Up to $100,000, the interest is tax deductible (more in certain circumstances), the interest is variable, currently very low, and as you pay it down it's reusable for any other purpose. So you can borrow the money, declare the medical expense and deduct the interest. If these circumstances fit, it's a win/win for unfortunate spines.

Depending on the bank, there are usually some fees involved including title insurance and an appraisal, other bank fees but all of these are negotiable. You might even try an online bank like ING. Anybody know if there are any banks till out there or have all bonues been handed out and everyone already quit

Dale

[Maria]

Cathy,
If you don't have your BMD report/records by now you can either get them where they were done stating you have an appt. with a doctor specializing in Osteoporosis and need to take records and sign a release for medical records there or you can take the fax number of the office where your report is generated from and give that to the doctor's office you will be seeing and just have the records faxed at the time of the appointment.

Either way you should have them for specialty appointment.

good luck!

[treefrog]

Maria, they are all one in the same office - they do it all. My PM, the surgeon, the osteo and the bone density test, all done at the same practice.

I got some of the papers from the bone density test, but I don't know that it is all of them (it's what I posted - all the numbers). My PM doc's nurse was kind enough to print them off and fax them to me.

It's all the other records that I'm waiting for. So, when I go in for the osteoporosis appointment, if I haven't gotten them before then (which is Thursday), I'll put up a stink.

Dale, that is one of the other options that we might have to go with (a home equity loan). As I tried to find some info on medical loans through the internet yesterday, I didn't find any that were for overseas travel (except for ones that were associated with medical tours). I think I am going to have to call banks to find out if they do them.

[dshobbies]

Cathy,

Please keep in mind there is a difference between a home equity loan, also known as a second (or third) trust deed and a home equity line of credit (HELOC). A 2nd TD is for a fixed amount, ususally for a fixed rate of interest (not variable), fixed payments and a pre-determined term (payback time). A HELOC is issued for a maximum amount, ususually based on 80% of your home's value after subtracting your existing mortgage, on which you can draw as needed. IRS interest deduction limitations do not dictate the maximum amount the bank will lend. Interest rates are usually variable as is the payback term. Payments are not fixed. Often there is a 10-20 year ceiling on the loan but this can be renegotiated as you go along. As you pay down the priciple the money then becomes available to use again for any reason and is tax deductible up to IRS limits, unlike credit cards and car loans. Fees for either type of loan vary from bank to bank but a HELOC can also have a small yearly fee, sometimes negotiable.

Unless you prefer a 2nd TD for a specific reason, such as locking in an interest rate, the flexibility of a HELOC makes it more attractive. HELOCs can also contain a provision for converting to a traditional 2nd TD at any time.

All of the above are questions you should ask before signing any papers.

Good luck, Dale

[treefrog]

Thanks for that information Dale. I know we really don't have much equity in our home here, so that isn't an option. But my boyfriend owns another home, that is owned outright, and he can borrow against that, if need be. He's the whiz when it comes to these kinds of things though, I will mostly leave it to him, if I'm not able to get a loan somewhere else.

I finally got my records. The doctors office called me, and apologized for the other company's mistake. Said she would print out everything and I could come by the office to pick it up, free of charge. Apparently the cost would have been ~33.00. And she said if I did end up getting them in the mail from the other company, that I could just keep that copy, and to ignore any bill they might send. Well, I think if I do get a bill, that I will call them and make sure it gets taken off - I don't want that to end up on my credit report, even though it's a little thing.

Even though I specified which types of records I wanted, they printed out everything. There was a lot of stuff that I really didn't need, but was interesting to read. I now have 19 pages copied, ready to send off, and I have copied the CD's with the images on them. Hopefully I can have it in the mail soon. Lets get this party started . Sorry that was a bad reference, but I thought it was funny.