DIAM vs ADR

[Katie]

I questioned the DIAM doctor again about why he thinks this device is better than the ADR for me specifically. Here is his reply. I am glad that he is direct, and obviously passionate. Any comments?

I can understand your concerns.

Let me tell you that I am a thinking doctor and my only mandate is to provide relief to my patients and excellence in work.

Let me put in capital letters - ARTIFICIAL LUMBAR DISC REPLACEMENT WILL BE A DISASTER IN YOUR CASE in the lumbar region. You are not a candidate for the same. Your problem is not the discs but the stenosis of the canal as a result of ligamentum flavum hypertrophy and facet joint osteoarthritis. Such a situation will not only rule out the possibility of disc replacement but also might make your condition your symptoms.

[Kathy]

Katie,
I can't say for sure; but think my cousin has had his for 2 years. I am not very close to him, so I have talked to him in months. I didn't even know he had previous back problems, until about 6 months ago. At that time, I believe he had had the surgery about 18 months prior. He said he was completely pain free. His surgeon was at Texas Back Instititute in Plano, TX.

Do you want the good news or bad news first? Let's go good news.... The good news is: You have choices!
The bad news is: You have choices!

What your surgeon said, sounds reasonable to me. I am no way a dr, not even remotely educated, so take that with a grain of salt.

Best Wishes,
Kathy

PS. Did you get an appointment?

[Terry Allen Blackburn]

WOW Katie:

Such a diverse range of answers. You might want to consult with Dr. Bertagnoli and see what he has to say. I hate to throw another spinal surgeon in to the mix but you have two widely differing opinions that it may be time for a third opinion. No matter what you choose we will support you in the process. Ultimately you will have to make the decision in what you think is best for you.

Terry Newton

[Katie]

Thanks guys. At least I don't feel quite so alone in this decision now. None of my friends are of any help of course, even my veterinarian She said either I would have been fixed by now if owners had a lot of money, or put down....sometimes the second doesn't sound so bad...we treat our animals better at times.

On a positive note, I've found some surgeons in the States who are willing to look at my images. I sent my MRIs to them, and are waiting for some feedback. More to the mix....and the other surgeon in the next province over is trying to fit me in over the next three months. Not quite as fast as I would have liked, but I told him I could come on a cancellation spot. He actually thought that the DIAMs might be indicated too, but will evaluate more. He also said that three DIAMs was bad, as it led to kyphosis. Oh Goodie.....

Also, a date has been set for my Appeal with the Government Insurance, April 30, just 27 more days! But I just learned that if I win this, I would only be approved for Stenum, not for the DIAM, as I did not apply for that, just ADR. What a circus. I could have to start this all over again if I am meant to get the spacers instead.

Kathy, thanks so much for the information about your relative. I'll chat more tomorrow.

The good news is the Appeal Board agent said that my submission was as thorough as any lawyer's, and has a better than 0% chance at winning Actually she said that presentations this thorough often have favourable results, but I'm not holding my breath.

Is it permissible to post one of my MRIs? Or should I just send it privately to the lucky few who have given me permission? I appreciate any and all feedback as I can't get any more confused than I already am!

Dr. B. is starting to sound like a good option for advice.....thanks for that.

[mmglobal]

I'm glad I took the time to read the whole thread, because first I was going to respond to this...

Originally Posted by Katie

Yes the same doctor that is doing the DIAM wants to put a Medtronic disc in my neck, but refuses to put them in my lumbar. He thinks it will make the pain worse. That I can't imagine!

with... If the disc is causing your pain (and there are no other pain generators), if they put an ADR in properly and don't cause any new problems, your pain goes away. (Obviously, it's not that simple, but that is the situation for many of the people who have the remarkable recoveries.) If you have a lot of pain generators, the situation is very complex and there can be a huge difference from one treatment to the next.

I'm glad I read this:

Originally Posted by Katie

Your problem is not the discs but the stenosis of the canal as a result of ligamentum flavum hypertrophy and facet joint osteoarthritis. Such a situation will not only rule out the possibility of disc replacement...

This makes a lot of sense. If the problem is not in the disc, ADR may not be best. Some time, many different treatments may be successful. If the problem is the disc, an interspineous spacer will leave the painful tissues, but offloading the posterior annulus may still resolve the pain. If the problem is hypertrophic ligamentum flavum, ADR may restore the disc space and retension the ligamentum flavum, resolving a buckling or bulging from the collapsed space, resolving the stenosis and pain. That is why there is often a crossover in indications... one doc wants to do a spacer, another wants to do ADR. The key is to do enough homework so that you are comfortable with your decision.

Being evaluated by a surgeon who does a lot of ADRs and no DIAMs will likely yield a different opinion than one from a surgeon who does a lot of DIAMs and no ADRs. They may both have motivations and opinions that are colored by issues not relevant to your case and they both may just be wrong about certain types of cases. But, again... do enought homework so that YOU are comfortable with your decision.

All the best,

Mark

[Katie]

Hi Mark and all,

Thanks for this. You probably don't know all the facts, as they are scattered and buried in several posts. The kicker here is that the doctor advocating DIAM does both them and ADR. As does the Canadian doctor who lives in the next province over, just four hours away.

My issue with him is that he only does lumbar, not cervical, and that means I'll need another surgery with someone else anyway, and I am being told that the cervical is urgent, that any small accident can cause quadriplegia. Oddly enough, I have almost no pain in that area, just occasionally when I look up or am typing too much, like yesterday

The odd thing is when the neck pain does flare up, the pain medication that does work for my back doesn't touch the cervical pain.

I believe that Stenum can probably put in the DIAM as well, and have written to ask that, and have also sent over the other doctor's concerns. I just hope I haven't burned my bridges by doing that.

I will consider the suggestion about Dr. B. We aren't exactly overflowing with money right now, but who is, so that is my main issue. If we are going to go anywhere, every penny counts, but it has to be the right trip though. So, do you think he would take a nice painting instead? I'm an artist in real life

So is it OK to post the image here or am I breaking protocol? The problem with being a newbie...don't know all the rules yet

[Kathy]

Katie,
You can post your images here. There is an option on your user cp, to have a photo album, where you can have images, photos, whatever, for other users to see. You can also post the image on the thread.

It sounds like you are doing all the 'correct' stuff. That is great that both surgeons do ADR and DIAM, that should help you get a more un-biased opinion. Although, since they had differing opinions, that isn't a great helper. From what I have heard, Dr. B is a great resource for a 3rd opinion. I have no idea if they just do ADR; as I don't think I have heard of anyone having anything besides ADR (I'm sure Terry and Bob can clue you in more, as I don't know). Everything Mark said is over my head! I do understand that ADR won't help you if you aren't having disc pain or more than one pain source. I thought of something important on the facet arthritis too. I was told, by all the surgeons I cosulted, that since I had had facet injections and did not get any relief from them, that my facets shouldn't be an issue. Basically, that the injections can be a 'diagnostic' tool, like a discogram. I would also have a discogram, if I were you, prior to any surgery. That way you know if you are having disc pain, or not. As long as you do your homework and make an informed decision, you will be happy with your choice... no regrets.

A 0% chance, you say? LMAO At least you put in a great appeal, hopefully they will approve you. I did the same thing when I appealed my insurance; but think I had a negative chance. I have never heard of a single person getting the same insurance that I have to pay. At least you are fortunate enough to have the option to go elsewhere. I know that it's a lot of money, that you don't want to spend (who does?) But it's there as a back up plan. Oh, and here is the clinical trial link: Home - ClinicalTrials.gov Pick, search for clinical trials, then enter keywords, such as DIAM or ADR. I have found that if you put in more than a word or two, it yields no results. I think it didn't even bring much back for ADR, so I put in spine. Or lumbar, cervical, thoracic. Then you have to go through all the results, the key is to look at the treatment. It will either say, medication, surgery, procedure, etc. That helped me to scan through quicker, as I only read the surgery ones. You can then click on ones that sound interesting, find out the objective, what the control is (what they are comparing the 'experimental device' to), the inclusion and exclusion criteria, where the trial is being done (this is usually multiple locations across the US; but sometime in the early stages of a trial or for whatever reason, the trial may not even be in the US. I have seen trials in France and Germany, that were FDA trials. Not sure why this is?)

You are doing a great job of researching and it is going to pay off for you! You are well on your way to surgery and pain free days! Give yourself a pat on the back (or if pain makes that impossible, make your husband give you one ).
Best Wishes,
Kathy

[Katie]

Thanks Kathy,

I have to be honest, the trials scare me! If these are experiments, then the chance of something going wrong is much greater, no? One of my dear friends is in a drug trial for a lung disease that is slowly but surely taking her life. But that is the only option she has except for a transplant, and she will go on that list when she gets bad enough.

I have an appointment with Dr. Fabien Bitan in NYC for early next week. He has my MRI and says, like the DIAM doctor, that my cervical 5/6 level is an emergency, is very urgent. My lumbar is JUST giving me pain, but not that important but he can do something there after the cervical surgery. He wouldn't even discuss it now, he was so worried about the other. Nothing like scaring the cr@* out of a girl!

So I'll go down there for an assessment. It is about an eight hour drive, so I hope I'm up for it, but it's better than waiting three months for the other doctor in Quebec. And, he says he needs another MRI, because the last one they took is FUZZY. Good Gawd, we wait months for one, and this is what we get????? Unfortunately, I don't have the $2K it will take to get one there, so will take my other MRI that is a year older down with me, along with past CT scans too. That should suffice, he hopes.

OK, I'm going to try and attach two of my images as well. I cropped the personal information off them and also to reduce their size. And yes, I have gotten rid of that extra padding that's showing

[Kathy]

You know, many Americans think that they want helthcare like Canada has. Like, wow, they all get healthcare, without paying money!

I wish they could all read so many of these stories, and see that the Canada system is not any better than ours. I can't imagine waiting months for an appointment. When my kids are sick, I call the pediatrician and I am taking them same day (sometimes within the next 30 minutes). If I was told next week, I would lose it. I can usually get into my family dr. next day, my pain specialists, within a few days, my surgeon may take a week. I can get an MRI same day or a day or two, depending on where I go. I can do bloodwork anytime, any other diagnostics are on a walk in system (may take an hour of waiting). When I get to the dr's office, I expect to not wait for more than 20-30 minutes in the waiting area (and usually I barely fill out the paperwork and they are calling me back). I also don't want to be in the room waiting for long for the dr to come in, 15 minutes of waiting, max. I am usually in and out the door in an hour or less. I have been to dr's where it took 2 or 3 hours to wait and see the dr, that was just insane to me (they need to not overschedule themselves). I understand that sometimes something comes up and if they tell me so, and it doesn't happen all the time, it's not a big deal. When I have scheduled back procedures, my daughters oral surgery or my other daughters ear tubes and adenoid removal, we had to wait a week to two weeks for surgery. I do hate that it costs so much money here. But, I am glad that we can just pay and go somewhere and not wait.

[Katie]

Some provinces do have two tier health care, and I'm not against that. Dr. Bitan asked me if I could get an MRI while down there, and when I found out that it would cost ~$2000, I had to decline.

It would probably take several weeks, up to six at most here, to get an MRI on average. But if I wanted to go across the river to Quebec, I can get one in a day or so for only $700. Quite a difference than NYC's $2000. Or, if I said I would go for an MRI at 2am instead of between 8amand 5pm, then I could get in within days. So it's not all bad.

I can't imagine having to pay thousands per month for health care, though either. If I break my leg, it's free to get a cast. I might have to wait hours in the emergency ward, mind you, but I don't have to worry if I have anything in my account.

I think there is a lot of good and bad with both systems, and I'd love to learn more about yours. What would an average family or mature couple without children pay for insurance there? What does it cover?

I think our taxes are much higher to account for the health care, and sometimes I wonder if it would be cheaper to get private instead. Oh yes, we also have private insurance to pay for dental and 'extra' services' like chiro, massage therapy, eyecare, etc. that is usually included in the workplace, and we often have to pay extra for that as well, a certain percentage for both employer and employee.

It would be great to exchange stories.