ADR 5 years on

[Jim M2]

Beyond a few x-rays I haven't had imaging diagnostics since 2004. The facets have been hurting for so long I'm thinking there's probably some type of visible hypertrophy, cysting or cartilage wear or who knows. I told my family doctor I wanted to go to the teaching hospital, like I did for pain management. I didn't want a surgeon to simply screen me for surgery. She wanted me to see one of their NS which I agreed to do without much protest mainly because she's been such an outstanding family doctor. Anyhow I'm scheduled to see the NS on Oct 9. Here's a summary time line of the past five years.

Aug-03 L5S1 Charite surgery - Great placement but suspected facet pain

Jan-04 MRI - Nothing remarkable going on, no conclusions on pain generator

Sep-04 Saw Dr.Zeegers at a GPN doctor-patient seminar in Fountain Valley. He wanted a CT Myleo to check for stenosis. Imaging was not entirely conclusive due to ADR artifact.

Mar-05 Major flare up in cervical never dies down

Jun-06 Facet nerve block positive for L5S1 facets

Oct-08 Scheduled to see NS


As I get results I'll post them here. Let me know if you have comments or suggestions.

[ans]

Jim, I wish you my very best during this tough time. Sorry no bank transfer instead.

Best, Allan

[Cheryl]

Jim,

Sorry to hear you are having a tough time. I can sympathize with your pain. Keep us posted.

[Maria]

Hey Jim,
Thanks for the update. Sorry to hear you still have residual pain and hope that something will bring you relief in the future if only time.

Nothing new here. No surgeries planned. Cervical area flaring up more than lumbar so that's fun (not). Can't complain too much tho re lumbar pain if not aggravated re sitting/overdoing/thinking I'm WonderWoman for a day (usually after an ESI).

Wishing you better days as I do anyone with spinal grief! Keep us posted w/any new info

[Jim M2]

I saw the NS Thursday. She feels the ADR is inoperable and as a result she isn't interested in the area except for x-rays to make sure nothing has fallen out of place. She says it looks fine. I'm not so sure. In the picture below 2003 is on the left, 2008 on the right. Here's my observations on 2008 vs 2003.

1) notable bone growth around the back edge of the upper plate

2) low grade spondylolisthesis L5 on S1 (or should this be viewed as loss of retrolisthesis?)

3) some deformation of the poly core as evidenced by loss of symetry of the floating ring

4) the gap in the floating ring has moved from the back to the side

Lateral X-ray Comparison: 2003 vs 2008

[mmglobal]

Jim,

What does she mean inoperable? If your facets are the problem, adding posterior instrumentation is certainly doable. If it is felt that the prosthesis must go, revision at L5-S1 is not nearly as scary as it is at L4-5. I've seen both of these surgeries this summer and know many others.

Do you have an AP and flex/ext xrays?

The ring is supposed to move around...

Calling you now.

Mark

[Jim M2]

Here's some more pictures comparing 2003 to 2008.

[Jim M2]

Here ya go, report from a radiologist who looked only at the 2008 x-rays you see in the postings above. This is the first time a radiologist has looked at my x-rays.

**********
General Diagnostic Text

Examination: Lumbar Spine AP/Lateral with flexion and extension
views (four views) 10/9/2008 at 0907

Indication: Low back pain
Comparison: None
Findings: A prosthetic disc is present at the intervertebral L5/S1 disc space. No evidence of hardware failure. Alignment is intact. Vertebral body heights and the remaining intervertebral disc spaces are maintained. No abnormal motion on flexion and extension views.

[Jim M2]

I cancelled the follow-up appointment with the NS after I read her office notes from the first visit.

"...He is here to see if there is any other technology or a newer intervention that could help his current situation, which is a chronic low back pain."

I'm pretty sure I told this doctor up front I didn't want to be screened for surgery. My primary interest was lumbar diagnostics. I wanted to know what was going on. I wanted information to support good decision making for pain management. I wanted to know of any developing trends. I was less interested in cervical. I knew prior I had multi-level cervical DDD.

I ended up with a cervical MRI that says I have DDD. The lumbar was dismissed as inoperable not because it is, or is not, operable but because it's obvious she just didn't feel like messing around with it.

[mmglobal]

Sorry Jim... It's too easy for them to dismiss us as 'no hopers'. All you want is diagnosis... you should be able to get on the same page with the doctors BEFORE wasting a bunch of time and money with them. Better luck with the next one... don't give up.

Mark

[johnb]

The surgeons don't keep the coffers full by running tests. It's really a testament to the problems with some (hopefully a minority) in the spinal industry. Let's do a little simple math for the sake of argument. Take 5 hypothetical surgical candidates who report low back pain and disc disease on MRI. Minimal testing will probably equate to all these folks recieving a surgical recommendation. Certainly not all, but many a surgeon will move quickly to operate. More extensive testing might reveal that 2 or 3 of the 5 might not be great candidates for whatever invasive/expensive surgery being served up. Those surgeons who put profit above the patients health will have all 5 on the operating table. Then take the probability that a certain % of patients will require more surgery after initially surgery and that sums up what is going on with some of the industry. More resources need to be put toward diagnosing pain generators instead of all the RD that goes into coming up with another variation of spinal hardware. The spinal industry's effort to maximize profits can conflict with what is best for the patient. My own experience is indicative of this.

[mmglobal]

IMHO, in most cases, your surgeon does not want to be your doctor... they want to be your surgeon. It's difficult for us to understand when they become non-responsive and disengaged. It's not because there is nothing to be done, it's because they no longer see you as a surgical candidate. For many of us, there is a huge disconnect as we try to navigate these waters because we are expecting a level of management from the surgeons that they'll only provide for their surgical patients. (In the worst case, it's only for their pre-op surgical patients.)

Mark

[dshobbies]

Ah-hah. That explains it

[johnb]

Jim, from one spine patient to another that has taken the risks and still has problems, I feel for you and hope you can get some answers regarding your situation. Recently, I've had the opportunity to communicate with two professionals that did not have a stake in my treatment and were outside the traditional doctor patient relationship. The conversations were candid. I only wish I had communicated with them a few years ago before plunging into my treatment decisions. The first is a retired orthopedic surgeon. He is a good friend's father-in-law and was nice enough to chat by phone. He said he was dissapointed with the direction of the industry due to the strong influence the hardware manufacturers had over the decision making process. He said if patients knew about the money spent by the manufacturers on "conferences" at beaches, manipulated research data, bribes and kickbacks masquarading as consultancy agreements, spinal patients would be concerned. He said there are bad apples in all professions but was dissapointed in the growing numbers in his profession compared from when he began practicing to when he retired.

The other professional is a neurosurgeon that is a fraternity brother's older brother who also agreed to share his observations. He's been practicing for 10 years and confirmed what the retired ortho said to me but had some other important observations. He said that the average spine patient isn't "sophisticated enough" and has to rely heavily on the surgeon's recommendations which can make spine patients vulnerable. The payors (insurance companies, medicare, etc) lowering reimbursement rates and rising malpractice insurance premiums are effectively reducing compensation levels so doctors are looking for ways to make up for the offsets in income. One of the obvious ways to make up for these offsets is to perform more surgeries. Candidates who would have been most likely steered toward conservative treatments like I was when younger in my 20's with no nerve involvement and still functional with limitations (very young with a lot to lose) or the elderly. I know of two examples that fit both these situations where the outcomes were awful.

The profit motive is in play and we all need to do our homework and make informed decisions like Mark advises. That simple advice cannot be repeated enough when you consider the high price that can be payed with a poor outcome that can leave you in more pain that is often resistant to treatment, interfere with bowel, bladder, and sexual function, among other serious, life changing complications.

Jim, I know I meandered from your topic a bit but I feel like the profit motive may be an inpediment to you getting answers to your questions. Maybe one day in the future we will go from our family care doc to an intervetional radiologist who does nothing but diagnose and no surgery.

John

[Jim M2]

Mark,

Well said. It leaves us to manage our own health by learning the options, risks...etc, Then armed with knowledge we have to manipulate these doctors into giving us what we really need.

You helped crystallize my thoughts on this when we discussed my situation with PM and Neurontin last year at your GPN Headquarters. For everyone else here's the story. After more than 5 years of chronic pain a PM resident at Univ of Washington teaching hospital prescribed Neurontin. It really helps me. The PM doctors I saw before this never prescribed Neurontin even though I was a perfect candidate for it. They screened me enough to know I wasn't a good candidate for an injection and they were done with me. Would they offer Neurontin to help me manage the pain? No way, they could care less. They wanted me out of there so they could concentrate on finding patients that qualified for an injection. $$ The last PM wouldn't even take 30 seconds to write a script for a CT/Myleo that Zeegers requested. My super cool family doctor at the time wrote the script.

To my way of thinking the same thinking for PM doctors applied to surgeons. If you go to Post#1 of this thread you'll see my original goal was to return to the UW teaching hospital. I was hoping to have a resident take the time to prescribe some diagnostics. FAIL. I'm back to square one. I suppose I'll go back to my family doc to request once again a referral to UW. I'll start a new thread when I do.

[Jim M2]

Thanks John, I just let things get derailed by not being more persistent with my family doctor. She means well, but she's very young. I strongly suspect she doesn't have a good understanding of the huge gap in health care that arises from the profit motive.

[mmglobal]

Most of the spine surgeons I know are very decent people who give the same recommendation to each patient that they would give to a family member. I have seen, first hand, many of the horror stories about doctors perscribing the surgery that's good for them instead of the one that's good for the patient. That said, I still believe that most of them are good people who got into medicine for the right reasons and manage their patients and their practices as best they can with the harsh realities of modern medicine and the uncertainty of spine surgery.

Spoken to every failed spine patient, the statement that the surgery should not have been done and conservative treatment would have been better, will most likely be true. The flip side of that is that so many successful patients would have lived more years in pain instead of having their successful surgery, and possibliy given up higher chances for success as their pathology worsened.

The reason that more conservative treatment was done in the past is because the surgical offerings were more horrific, less successful. There were no options in between conservative treatment and brutal fusions. Fusions have become less brutal, hardware has improved, as has patient selection. Intermediate treatments have provided excellent relief for many; with discectomies, micro-discectomy, endoscopic discectomy, interspineous devices, dynamic stabilization, ADR, nucleus replacements, facet replacements, biologics, etc... We now have so many other options besides PT and meds, versus the brutal fusion - AND if you need a fusion, those are better too.

Unfortunately, there is still such a randomness to failed spine surgery that we will continue to hear the horror stories over and over. I don't know if we'll ever get past this. I have seen clients with failed surgeries that may have been avoided. Their experiences will help me to keep future clients in similar situations from making the same mistakes. While our odds may seem like they keep improving, but I believe that we are close to a wall that represents the randomness and lack of understanding we have about pain and structural issues, especially in difficult situations. (I still see occasional, seemingly perfect candidates fail.)

Sorry for the long rant that may even be off topic. I too don't trust the data and have seen big money get in the way of effective medicine too many times. We are caught between so many competing interests and the players do not all have our best interests at heart. However, we can't lay it all on the evil empire of the money-motivated mega-corps or on the doc who "need to make the payment on their Porsche". Spine surgery sucks and under the best of circumstances, many of us will fail. If you can avoid going down the surgical path, by all means exhaust every reasonable possibility (without putting yourself at too much risk.) If you need to have surgery... do your homework... make informed decisions.

Mark

[johnb]

Right on Mark. If you were there during my initial consult I don't think I'd have had surgery with him as you would have known the dishonest statements or he wouldn't have made said statements because you were there. Better yet, you would have steered me towards a surgeon that you knew to be trustworthy, honest, and all that good stuff that you demand from someone dealing with your health. I've confirmed that statements my surgeon made were dishonest. If my surgeon had answered one specific question I had in an honest manner, I would not have had the surgery that I did. I have a different belief about the randomness. IMHO, there are reasons for everything but they are just not understood yet. The future of solving these problems will not come from hardware but from regenerating damaged tissue. Let's hope that with the new politicall environment, stem cell research will pick up and we can be closer to a more natural, physiologic solution that doesn't include non organic metal in our bodies. There are some nasty biofilm infections that the immune system cannot fight once they get attached to hardware in our bodies. Will the hardware makers go quietly or will they be like the big 3 automakers that still want to produce gas guzzling SUV's and go the way of the dinosaurs. I know many who will be glad to pay a premium for relief.

Okay, I've gotten off topic a bit Jim but I believe my experience can help other patients which is why I shared.

John