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  #1  
Old 05-20-2006, 11:52 AM
Dale S Dale S is offline
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Hi All,

I'm now 7 months post-op and am doing OK but not great. Here is a little background.

In Oct,04, I saw Dr. Delamarter in Santa Monica. Long story short, after waiting 7 months for a return phone call, I transferred to Dr. Regan in Beverly Hills and had a scheduled surgical date.

Insurance problems landed me in Germany with Dr. B with Dr. Regan agreeing to be my American Dr. I came home with nerve damage to my left leg, which Dr. B thought though severe, fell within normal ranges. Dr. Regan wasn't
'familiar' with my level of pain and referred me to a pain specialist and ordered a mylogram. Unfamiliar with the test, I agreed but when the facility told me about the test and possible side effects, I cancelled it. I thought that if Dr. B and his very competent staff felt this was normal, this painful test wasn't really needed. I immediately called Dr. Regan's office, got his nurse, explained my feelings with which she agreed and said it shouldn't be a problem. WRONG!

Seeing Dr. R the next week, 1 month post-op, I again explained my situation, and again, thought all was fine. He saw me at 4 months post-op and claimed that his protocol was different than Dr. B's and since the xrays looked great, he dismissed me and said he didn't need to see me again. I didn't think any adr patient was dismissed at 4 months... but that's what he said.

Dr. B's office requested follow up xrays at 6,12 & 24 months. I called Dr. Regan's office for a prescription and discovered that since I didn't do what he wanted, he was done with me and no longer considered me his patient.

Aside from needing this prescription, which I suppose I can get from my gp or pm, I now have no adr doctor. I'm extraordinarily uncomfortable with this, especially with some continuing problems and was wondering if anyone knew of another adr doctor in the Los Angeles area.

Though I dreaded having to go to Germany, I found the doctors didn't have the same attitudes that too many American doctors have!

Dale
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  #2  
Old 05-20-2006, 02:25 PM
ans ans is offline
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Dale,

Did you cancel the myelogram b/c of the iodine dye fears (maybe they use something else) re: arachnoiditis? I heard that the older oily dyes caused problems but did see a reference to the newer dyes to causing problems but I'm not sure to what degree.

I live in LA and people have different opinions about their docs. I'm going to Laureyssen for another opinion, have seen Regan, and there's Bray, Bae, Watkins at St. Vincents (whom my doctor likes), Patrick Johnson at Cedars whom I hear is wonderful from what I've been told. Djscal has an excellent read on LA doctors.

You dont' deserve such treatment; they won't change so split and good luck w/all.

You are probably not alone in having problems there.

ans
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Severe, extensive DDD, considered inoperable by Dr. Regan, Lauressen, & some guy at UCLA. Severe foraminal stenosis (guess they can't operate!) and some spinal cord compression that Lauryssen would fix if gets outta hand.
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  #3  
Old 05-20-2006, 10:01 PM
luvmysibe luvmysibe is offline
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Hi Dale,

Sorry to read about your treating physician predicament. I wasn't released from my surgeon until 61/2 months post-op. I am very surprised that at 3 months with a 3 level ADR, you were released. Please get references for another surgeon who may have a greater level of bedside manner.
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  #4  
Old 05-27-2006, 11:52 AM
Dale S Dale S is offline
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Thanks for the referrals and I've already emailed Dan. From what I've heard, finding a doctor who will agree to follow up care is difficult. They're all pretty much only interested in their 'own' patients. I think that's just another way of saying, they are only interested making more money or putting another notch in their belt.

Well, maybe I'm wrong.

Dale
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  #5  
Old 05-27-2006, 01:02 PM
sahuaro sahuaro is offline
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Dale:
I am sorry you are having such problems getting follow-up care. That has been one of my concerns about getting surgery out-of-state let alone abroad. I think the issue is that the surgeons do not want to assume liability for another surgeon's problems.
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2001 MVA; C5-C6 disk extruded
ongoing physical therapy, exercise and massage
ESI's, oral prednisone, trigger point injections
foraminal and central stenosis C5/C6 and c6/C7
2007 EMG/nerve conduction shows pattern of chronic radiculopathy
January, 2008: Prestige ST Artificial Disk Replacement, C5/6
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  #6  
Old 05-27-2006, 01:40 PM
Dale S Dale S is offline
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Sahuaro,

You would think that the liability is the true reason for denying care. After hearing why Dr. Regan dismissed me, I personally think it's more self serving.

It's a debatable situation and one in which I don't care to engage, so let's just say that my opinion of doctors since beginning my adr adventure is not nearly as close to their opinions about themselves, liability notwithstanding.

Dale
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  #7  
Old 05-27-2006, 08:44 PM
biffnoble biffnoble is offline
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Hi Dale:

You have my sympathies.

I assume you paid cash for your German surgery.
This is already onerous/unacceptable financially as ADR is certainly as good a treatment as any "conventional" spine treatment covered by ins. cos. in the US.

For the self-pay, out-of-country ADR recipient, post-op life can be fraught with disaster. Every prospective out-of-country ADR hopeful should be very clear on this.

This is something I've tried to express in previous posts.

In the out-of-country scenario one is essentially paying to be a trial subject (same as "conventional" US surgery), exchanging disability A (pre-op state) for disability B (post op state). The B outcome may result in a greatly improved quality of life, a life equivalent to pre-out status, or sadly, a worse status.

Additionally the self paying patient risks being ostracized by the medical insurance industry due to having had a non-FDA approved surgery. This at minimum may result in being refused treatment coverage for the affected area or worse refused any future ins. coverage at all.

One lumbar ADR Dr. B. patient wound up post op with severe intractable chronic pain which his HMO, Kaiser, treated for awhile but ultimately refused continued treatment for because his surgery involved a non-FDA approved treatment and their lack of clinical knowledge of his treatment and how to deal w/it post-op. Thus in severe pain he was put into medical limbo, effectively self insured, and on the way to financial ruin. He used to post on ADRsupport but has disappeared (as far as I can tell) for the last 6-8 months. I wish him luck.

For those that have the ADR surgery out-of-country and are lucky enough to find a US/local Dr. to follow them, making the billing "work" is a potential disaster. If they do get followed/covered there's always the possibility that this situation will end either because the Dr. moves on, determines the patient requires no further supervision, or because the insurance co. notifies their practice that all ADR coverage is explicitly not covered and that if the provider inappropriately bills for ADR services those services will not be reimbursed, thus pushing the costs back onto the patient and into the self insurance Twilight Zone.

Out-of-country ADR puts an additional nasty twist into the equation because of the use of materials besides the discs that are not FDA approved.

Moral: suffer until the procedure you need is: A) FDA approved and B) covered by your insurance (3, 5, 10 years off): including both the implantation and long term followup costs. Or potentially take a tremendous risk and go out-of-country.

Any way you look at it, It's a s----y row to hoe.

People in severe chronic debilitating pain, simply wanting return to being productive useful people with minimal pain, are faced with going w/"conventional" treatments w/checkered track records (don't kid yourself laminectomy, fusion, etc., aren't any better proven statistically than ADR) and questionable outcomes, or risking everything (unless they're Bill Gates) paying in effect, for a medical Hail Mary.

For those brave/driven souls that bit the bullet and have gone out-of-country and succeeded, one offers enthusiastic congratulations, hopes for a trouble free future, and a tiny feeling of envy.

For the folks that have had to deal w/the reality of continuing/increased pain post op and the financial abyss of being self insuring, my deepest heartfelt sympathy. And I'd admonish all that take this route to understand the risks, and if they do go out-of-country to hopefully share their strategy/journey with the rest of us.

This is really a political issue at its core.
The role of the USA in caring for its people, has since WWII, sadly diminished to a current Dickensonian level. The State is supposed to realize that caring for its people and restoring them to health and functionality is vital both for the health of the individual and the society as a whole.

The US is reliant politically/ecomnomically on getting new blood as opposed to fixing existing bodies. Survival of the fittest. And the notion that healthcare should be in the province of for profit entities is ludicrous, that paradigm is great for those citizen that are genetically endowed with healthy genes, and that manage to avoid being rear ended, or dropped on the head. They generally are at the top of the economic heap so in addition to being healthy and thus not needing healthcare they can bear the onus of the ridiculous premiums the health ins. cos. charge. Insane!

To make real change we must reform our government institutions (Starting w/the FDA, and moving on to medicare,etc.) and remove healthcare from the clutches of the private sector.

Until then, many of us will feel like we're caught in the cross-hairs, faced w/unfaceable dilemmas.

THE US HEALTHCARE SYSTEM MUST BE REFORMED! Big pharma must be made accountable. The government should be a competitor with big pharma in developing drugs that have little profit potential because they're comprised of common non copyrightable materials/processes.

The country is politically allopathic. It's time for a paradigm shift. All citizens have a basic right to health care and good quality of life. In addition, nutritional deprograming (the junk food that TV and other advertising has hypnotized us with) and reeducation will be vital in making the populace healthier and less needful of medical care.

Work politically for change. Vote, make your concerns known to your representatives. Only then will things begin to change.

Good luck, to us all.
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  #8  
Old 05-27-2006, 11:22 PM
scsurfgirl scsurfgirl is offline
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Wow, go Biff!! You bring up some good points about the consequences of going abroad. Will consider...

Dale, your post concerns me because I had just decided on Delamarter because of the things I've heard about Regan. There has to be another alternative. I did see Micahel Wang (NS) at USC Spine Center early on in this process and liked him. I think he's a Charite guy but not as prolific as Delamarter or Regan. He seems very decent. Just a thought.

Wish I had more to recommend, for both of us...
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  #9  
Old 05-27-2006, 11:27 PM
biffnoble biffnoble is offline
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Hi scsurfgirl:
It should be pointed out that the same BS ins. snafus can happen w/US doc performed ADR.

Out-of-country ADR potentially just has a few more wrinkles.

Good luck.
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  #10  
Old 05-28-2006, 01:11 AM
ans ans is offline
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Important discussion; good job Biff.

I can understand a doctor being nervous taking on an ADR pt. from abroad w/the new vertebroplasty cement not authorized for spinal use in the US either. Wonder if a good spinal doc could have a pt. sign a binding waiver since spinal surgeons have high malpractice costs.
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Severe, extensive DDD, considered inoperable by Dr. Regan, Lauressen, & some guy at UCLA. Severe foraminal stenosis (guess they can't operate!) and some spinal cord compression that Lauryssen would fix if gets outta hand.
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