ADR Doc in San Francisco??

[Deborah]

Hi, I'm new here and glad to find you all.

To give you a very shortened background on the current issue:

Hub injured in car accident 2001, MRI's consistently show healthy lumbar except L4/L5 slight annualr tear and L5/S1 slight bulge, pain/bed/opiates/decompression/microdiscectomy/injections/neurostim good then bad results/etc since. For the last year he's been mostly bedridden.

A discogram proved clearly Positive for heavy leaking and discogenic pain 10/10 at both questionable levels with CT immediately following confirming.

Texas Back Institute recommends Prodisc on both levels (or Prodisc L4/5, fusion L5/S1), but Medicare won't cover adr in Texas. Sooooo... I found that Medicare will cover ADR in CA.

Our son is in San Francisco so that would be the most convenient place, but we're looking to see if anyone knows of a good ADR doc there?

If not, we'll have to opt for anywhere in CA or other states that we can find will cover with Medicare. (I would personally choose Delamarter I think, but have to admit being with family would be a huge help.)

Also...for those who have traveled for ADR... how long would you suggest is ideal for the stay? I have heard it's best to have a 10 day check by the surgeon? What timing is truly practical for discomfort in traveling?

Thank you so much for any suggestions.

Debi

FYI: The approximate cost if we pay ourselves at TBI is estimated at close to $140,000 (with the bulk of the cost going to purchasing the two Prodiscs in the US @ 40,000 ea). Stenum is now apparently above $40,000 (for all medical expense) plus all related travel expenses which isn't practical for us either (the dollar is just not doing well).

[Slackwater]

Originally Posted by Deborah

Hi, I'm new here and glad to find you all.

To give you a very shortened background on the current issue:

Hub injured in car accident 2001, MRI's consistently show healthy lumbar except L4/L5 slight annualr tear and L5/S1 slight bulge, pain/bed/opiates/decompression/microdiscectomy/injections/neurostim good then bad results/etc since. For the last year he's been mostly bedridden.

del.text
Texas Back Institute recommends Prodisc on both levels (or Prodisc L4/5, fusion L5/S1), but Medicare won't cover adr in Texas. Sooooo... I found that Medicare will cover ADR in CA.

Our son is in San Francisco so that would be the most convenient place, but we're looking to see if anyone knows of a good ADR doc there?


Thank you so much for any suggestions.

Debi

FYI: The approximate cost if we pay ourselves at TBI is estimated at close to $140,000 (with the bulk of the cost going to purchasing the two Prodiscs in the US @ 40,000 ea). Stenum is now apparently above $40,000 (for all medical expense) plus all related travel expenses which isn't practical for us either (the dollar is just not doing well).

UCSF Spine Center Link 1
UCSF ADR - Spine Link 2

UCSF Medical Center
www.ucsfhealth.org

Serena S. Hu, M.D
Professor and Chief, Spine Service
Department of Orthopaedic Surgery
400 Parnassus Avenue, 3rd Floor
Room A311, Box 0322
San Francisco, CA 94143

Appts: 415-353-2739
Fax: 415-353-2248

I believe Dr. Hu is one of the authors listed on the Prodisc study for the FDA clinical trial. It took me ~30 days to get an appointment.

[Deborah]

Thank you for the information. We were checking at UCSF in general because that is our son's hospital! I was hoping to get some confirmation doc's there are good and maybe which one to prefer.

We have contacted them but heard nothing back yet to try to arrange appointment. Since we know test results all are right for surgery TBI thinks referral will be all that is needed for surgery after docs at UCSF review tests. TBI gives them very high ratings but no doc of choice, so thank you.

I'm hoping surgery will be in late Nov or Dec so I hope that's possible if we start the process now.

[Deborah]

Slackwater,

If you don't mind me asking, how did things go with Hu? Have you been seen, had surgery, etc? Hub's is levels L45 and L5S1.

We got the test results and doctor notes emailed off to UCSF today... supposed to be in Dr. Hu's hands asap, so we wait to hear her recommendation and what they'll do at UCSF. I've heard they've done a fair amount of ACR but remain very conservative with it only doing ADR when all aspects of the reports show excellent candidate. I kind of like that.

Thanks again for info.

D

[KBear]

Just curious, what TBI are you going to? That's where I am, and I see Dr. Zigler. I also have 2 positive discograms under my belt (I had to have a 2nd, since my first was two years old and pre-Idet) both 10/10 at L4/5, with the second followed by CAT scan, as well as MRI's confirming DDD at L4/5. Fortunately, since mine is only one level, if my insurance appeal is denied then I am a canidate for an upcoming FDA trial in 6-8 weeks. They say once the trial begins and I do paperwork, that I will have surgery in a week to two weeks from then. One of those hurry up, wait, hurry up things.

[Deborah]

Well, first about UCSF.... the hospital is huge with different floors or areas treated as separate hospitals. My son is a Doctor (Pediatric Hematology/Oncology) in the Children's Hospital portion. He talked to an ortho friend/co-worker of his from the Spine Institute and that guy said 'the most experienced and best, at least for initial opinion is Hu' .... so the doctor notes and test results have been emailed to my son who is handing to his friend who is handing to Hu in hopes of expediting. We shall see if that theory works. In any case, it keeps our son involved .

As for Texas Back Institute I really do believe they are a great group and I do believe they have done some wonderful surgeries and have a ton of experience with ADR. On the flip side (which is normal) there have been a number of not so great outcomes and a few disasters (it happens). The reality is it's all risky stuff... even implanting an electrostim lead (paddle) has caused several severe problems with the worst being permanent paralysis according to a doc there. We all know the 'warning' side of rare nasty problems and TBI has their fair share for sure.

They would not or could not accept Medicare for ADR surgery, although Medicare (plus add-on) has covered all other visits, surgeries like neurostim, and Medicare national says ADR for those under age 60 using Charite (one level only) or prodisc (up to 2 level) is a benefit (they don't preapprove anything). That's what made me check at other locations for ADR surgery since TBI (Dr. Henry, although we've also been with Blumenthal and Guyer) was definitive that ADR is preferred on at least the L4/L5 level and they advise also on L5/S1 (some disagree on how to handle L5/S1 and prefer fusion there because it's one level that normally doesn't flex much).

I will soon (I hope) know if Dr. Hu at UCSF agrees with them. I'll let you know.

By the way, I really strongly suggest you check closely about the new disc starting into FDA trials. The discs I've read about coming down the pike from europe use haven't looked very promising to me, but I'm sure I haven't seen all data, or even remember all discs! Trials are just that, trials, and getting into one from the start is not necessarily ideal. It can be, don't get me wrong, but I do think serious care should be taken when partaking in any trial. The only exception to that is for some in cancer (my son's specialty) where trials are very common. For those who are absolutely dying with no other options, a trial can be an obvious chance to take. Just because a drug or mechanism is in use elsewhere does not mean it's safe. In almost all cases of trials there is no long term use data known (although with adr specifically that is a risk we all sort of realize... replacement could be needed... its more the shorter term issues like not staying in place, breaking, not working well, causing other harm, etc we are most concerned about). The charite was used on many, is still used by many who are happy with it and has caused a lot of harm to some and still is not approved for multi level. Others have been in trial for a long time and not approved at all (although some may be).

So... for trials, I think it's important to look at pre trial data and consider what phase of trial something is in. Phase 0 (first in human trial) doesn't really apply to most adr since most has been done overseas. Phase I is a small group of volunteers testing initial safety. Phase II has seen Phase I results and is on larger group (20 - 300 approx) and is seeing if Phase I results hold up. (it should be noted Phase I and II can be combined, especially with units like ADR). Phase III is a multicenter trial, many more people involved, and different doctors involved. They're studying results as it happens.

Approval usually requires at least two good result Phase III trials. Phase IV is what all adr is in now which is testing long term results and it's done after it's approval and use in the general public.

My son personally believes nothing below Phase III should be considered (as a general rule for the average person, given no special reasons) unless life is clearly threatened. On the other hand, we all agree we need people willing to do all Phase trials so medicine advances. In the case of ADR we tend to have quite a bit of data from pretrial use elsewhere (which is also true of the vast majority of drugs tested). However, it's important to note that those results are not controlled and not considered 'scientific study' by "our" rules of controlling statistics to assure all are included and recorded as accurately as possible. The obviously often seen problem is when places are trying out things in huge numbers and making lots of money (although usually at low prices per human used). We've seen that in many drugs (hiv, for example) as well as adr. It happens.

The last serious considering is one that some docs have been yelling about and has been a part of many malpractice trials in recent years. There is no law preventing doctors from investing in drugs and mechanisms, as well as hospitals, imaging centers, pharmaceutical companies, etc. There have been many cases cited where doctors then choose the thing they have invested in as the thing to use for their patients (the opinion we pay for). There are two sides to this, on one, it makes sense they would invest in what they believe will be the winner and will work. The flip side, particularly in ADR, is where a LOT of seemingly good units are being developed and HUGE dollars are being made because people are begging for anything at all to help the pain and willing to accept that most things do not help at all ... so investing in any of them, especially if you are planning or already defined to be part of trial (which assures a return on investment) is a no brainer for the doctor and it certainly would seem to encourage the doctor to get many into trial without knowing outcomes.

It is well known (has been used as evidence for malpractice suits for example)
and argued by many 'whistle blowers' (like the NY Times and other doctors, who theoretically are just upset they didn't get in on the big bucks) who feel it should be considered at the least 'unethical' and possibly made illegal. Neither is true, yet. As a result, doctors who are big investors are sometimes now posting disclaimers that they do invest in all sorts of things including devices.

To be fair, even doctors investing in well known, long term studied devices and drugs is considered iffy by some. It's also a sort of obvious thing for a sensible doctor to do.

So here we are with horrid pain that has made life worth questionable and quality nil. All I can suggest is that each person truly investigate personally and act on your own subjective (its all there is for now) assessment of as much information as you can gather. Personally, I want to feel I know quite a lot about pretrial results even though I KNOW those are skewed. I want to know clinical trial results. I do NOT want to be influenced by doctor opinion on any specific thing he or his buddies may have invested in. So self study is important.

To get back to the point, Texas Back Institute is one (presumably of quite a few and I don't know the names of all) whose doctors are heavily invested in varying devices (adr specific for this discussion) plus use hospital facilities they own, imaging places and doctors doing discograms and such they invest in, etc. They have now posted a disclaimer that that is true on their website and in offices.

I still like Texas Back Institute and still think they have good doctors, but I do now observe their actions and consider their opinions in a different way. Very carefully and most definitely ALWAYS with at least a second opinion from someone not associated but well qualified.

Just my opinions and my 2 cents. May be worth considering. I also am in a desperate situation that makes me want to jump at anything. I believed lock stock and barrel in specific german and austrian work done years ago in adr and later discovered it was very skewed data. Nonetheless, outcomes in some cases imply it was ok, but in others that it was not. So I'm careful. But I'm also desperate... tough balance.

D

[manth]

I initially went to Dr Hu myself and he seemed fine. The bill was what killed me and the insurance company wasnt willing to foot any of it. Thats when I decided to hike over to Germany and then the real research started. I found a surgeon who had done at least 150 a year in this surgery and also instead of $68,00 was $30,00. Dr Hu was a great guy but had a quater of the surgeries that the surgeon I chose had had. I am now pain free and also debt free and am confident that my surgery was "can I say" another day in the office to my doctor.

[Deborah]

What we're most interested in is good opinions among the odd world of new surgeries for ADR.

The whole billing thing is truly odd! I think part of it is timing as insurance changes its views and studies come out of trial.

At Texas Back Institute we were quoted about $140,000 for a two level ADR or ADR/fusion hybrid for my husband. That would include all expenses. They advised us Medicare does NOT cover ADR. The opinion was the discs (L4/5 5/S1) need to be removed and Prodisc for both was definitely best option, although prodisc above and fusion at L5/S1 is consideration.

With grave concern about the costs (do we sell the house to do it now?) we went to UCSF which would be first choice. There we first checked out Medicare coverage and expenses to be expected. They checked thoroughly and had no reason to believe Medicare won't cover it fully and it has been done there before (although Medicare doesn't preapprove). I then checked with Medicare national and they said Prodisc adr up to 2 level is a benefit, as well as Charite if only one level.

I asked for actual costs and at UCSF started with doctor cost (since the rest I assumed would be kind of comparable).... TBI had quoted $19,000 for the doctor to do surgery and UCSF quoted $2,250 (although not sure if any adr surgery or more for two level), and lower expected price on mechanisms (by half or more) and I didn't even check hospital comparison.

I also checked prices in Germany and Austria now and without travel and other associated expenses it runs 40,000 euros which I think is about $55,000 and it could be more because it wasn't an immediate quote (needed to check and I said I'd recontact). Obviously US travel is significantly less expensive and without language differences, etc which is a tad different between our usual great international travel and a surgery.

Anyway, I guess the lesson for me is to check things out totally and to know that it's changing all the time! ADR done as part of a trial is different from ADR post trial and FDA approved (and that amount can depend on where it is done). Also, really considering data on options and understanding what makes up 'reliable' that I am willing to trust with my own body. Then considering pre (US) trial data. Even the data from US now has not had time for long term. I haven't gotten straight scientific vetted data from any of the european sources yet.

It's a changing thing. I'm chasing it down for us for now, though.

Thanks!

D

[ans]

Hi D,

My son, the doctor! I agree about Phase III. I know you want to be in the Bay Area but my sense is that the best ADR docs are in LA. My very best ~ Allan

[Leora]

Hello there. My surgeon at St. Mary's Spine Center does them as well. Dr. Ken Hsu and Dr. Zucherman were part of the Prodisc clinical trial. I had a laminectomy discectomy in Sept 2007 and am in a lot of pain still so am considering ADR myself....But I am looking into Germany for the possibility of a Maverick or Activ-L.
I do know that the St. Mary's Spine Center surgeons have good reputations though, so you might look into that..!

Leora