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  #11  
Old 07-15-2016, 09:10 PM
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Cynlite Cynlite is offline
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@Rivermiles, I don't know if you read the final end to my story. (FYI, had the same experience with a short interview in the U.S. and fusion suggested.) I had a three level ADR with Dr. Clavel in Barcelona in May 2016. Dr. Zeegers held me up in my decision. He was way too conservative on his diagnosis of my neck but, spot on on my lumbar in my opinion which is not a surgeon's opinion because I'm not one...I just live in this body and had to make a call. That is where trusting my own instincts about what my body was telling me came into play. Surgeons are not Gods. I knew I was gambling so, it came down to probabilities in my mind. There are risks and we can't ever forget it no matter how good the surgeon. I think Dr. Zeegers is one of the best conservative surgeons and Dr. Clavel is one of the more successful surgeons when it comes to cervical surgeries based on my research. This is important...you'll have to come to your own decision based on all the information you gather. Dr. Clavel recommended an L3/L4 fusion at first review of my images but, after talking to me in person did not push me for it. He understood my arguments. I made a call to hold off on that surgery and it may cost me more later financially if I choose to do it but, after so many surgeries I've learned that they should not be taken lightly. So far, I think I made the right decision. That is as far as I got. I had a 3 level cervical surgery with Dr. Clavel; one I don't think I'll ever regret. I'm 8 weeks post op so, can't say what the long term prognosis will be but so far, it's been a good recovery so far and I'm happy with my decision. I hope your decision is easier than mine and wish you the very best outcome!
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2006: epidural shots did nothing; 2 surgeons recommended 2 level fusion, I declined.
2007 - 2010 4 foraminotomy and cord decompression cervical surgeries and 2 endoscopic discectomy T7-T8 surgeries; total 6 with Dr. Jho (Pittsburgh,PA) My C6/C7 autofused around 2009.
2013 - 2015: epidurals 3 times (again did nothing) and 4 Radiofrequency ablation (or RFA) procedures.
2016 more RFAs, hit the 10 year mark of this insanity and pain, 3 level M6-C ADR with Dr. Clavel May 19, 2016
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  #12  
Old 07-15-2016, 10:27 PM
RiverMiles RiverMiles is offline
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You and me both! I'm aiming for at least original factory condition!

I saw that you ultimately had to leave Dr. Z to his deliberations and move forward. Based on what I learned in this thread, I will probably be reading my final report from Dr Z while I'm recovering from surgery.

I was just commiserating about the wide range of attentiveness between different surgeons and what they represent to me. I hope it didn't come across as absent or off point.

The good thing about the appeals I'm working through is they afford a little time for more second opinions, research, and distilling it all into the right call for me. I'm 100% on the same page in terms of weighing the assessments, indications and recommendations against my own intuitive compass and judgement.
I could be better at it though. :-)
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Nov-Dec 2015 - 10 miles in the kayak, a N. GA mt summit, a 12-mile day-trek.
Late Dec '15-Mar '16 - Years of "normal" tension in my neck became radiculopathy w/ neuro deficits / Standard conservative treatments. / MRI reveals C5-C7 unpleasantness.
Apr 18th, 2016 - 2LVL ADR scheduled for May 3rd!.......Apr 29th, 2016 - Surgery unscheduled by insurance co.
May 2016 to present - Appealing. Summit the couch daily; trek to restroom/kitchen as necessary.
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  #13  
Old 07-18-2016, 11:29 AM
twowheelyankee twowheelyankee is offline
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Here is the last response I received from Zeegers:
Willem Zeegers <wzeegers@zeta.demon.nl>
Jul 11 (7 days ago)

to me
Report will be finished this week

As you can see, again this deadline came and went. This is the fifth time he failed on his promises. I could understand 1 time, but this has become habitual and unprofessional. Yes, he personally calls you quickly on the initial consult. That is why people feel comfortable and wire him money for his opinion. But you will soon learn that he delays and when he finally provides you will a report, it is basically reorganized information that you provided to him. So I hear, since I do not have my report. I am not sure how doctors are made in Europe and the Netherlands and the social healthcare aspect of it, but I feel he is making some good money with these international consults.

My initial intent was to have surgery in September based on his analysis. Luckily, I did not make any travel plans. I need my surgeon to be a person of their word. To me, Dr. Zeegers is not providing his international patients any respect. I would not feel comfortable suggesting anybody use him for an international consult. I CANNOT speak for his ability as a surgeon. This is key. I have no knowledge of his surgical abilities.

Good Luck....
Jim
__________________
8 mm A-P herniation with annular tear at L4/L5
Initial Injury 2004
Chiro, 14+ Epidural Injections, PT
ADR insurance appeal won in 2013, delayed surgery
2016 pain is now affecting quality of life. Contemplating ADR surgery again.

2016 delayed surgery again due to successful pain management with meds.
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  #14  
Old 08-08-2016, 05:42 PM
twowheelyankee twowheelyankee is offline
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Default Zeegers Analysis

So after 3 and a half months, and numerous emails requesting status, He finally sent me an 8 page report. Yes an 8 page report, where 90% of the report is information I provided him. He did add a lot of terminology to obscure any recommendation and really never provided one.

So while I am not quite as diligent as some on here with exhaustively researching everything related to ADR and back diseases, I did research my condition which is a single level ADR due to a herniated L4/L5 disc.

Unfortunately, Dr. Zeegers report did not provide any additional insight into my condition or potential solutions.

For me, Zeegers analysis was not worth the 1K(>) USD.

TBI only spent 45-60 minutes considering me as an ADR patient and provided the same feedback.

I didn't expect the report to be magical, I just expected it to be comprehensive and complete. A place, one concise place, that would document my condition.

I am guessing I will spend the next month trying to pull information from him.

Jim
__________________
8 mm A-P herniation with annular tear at L4/L5
Initial Injury 2004
Chiro, 14+ Epidural Injections, PT
ADR insurance appeal won in 2013, delayed surgery
2016 pain is now affecting quality of life. Contemplating ADR surgery again.

2016 delayed surgery again due to successful pain management with meds.
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  #15  
Old 08-08-2016, 07:08 PM
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Cynlite Cynlite is offline
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The end of the report (really the only important page) should say something like:

1) Do nothing ...wait and watch, not really a good solution ...
2) Some sort of recommendation by Dr. Zeegers

Did he send you just a draft like he did for me? My recommendation section was not an opinion but, rather open ended questions.

My apologies to all of Dr. Zeegers patients that posted before 2015 and are happy patients. Unfortunately, I have to agree with Twowheelyankee in that the $1000 I spent last year on him was not a great investment for me either. Oh well, bygones.

Twowheelyankee, I was sure hoping that Dr. Zeegers would come through for you. Perhaps there is more to come?
__________________
2006: epidural shots did nothing; 2 surgeons recommended 2 level fusion, I declined.
2007 - 2010 4 foraminotomy and cord decompression cervical surgeries and 2 endoscopic discectomy T7-T8 surgeries; total 6 with Dr. Jho (Pittsburgh,PA) My C6/C7 autofused around 2009.
2013 - 2015: epidurals 3 times (again did nothing) and 4 Radiofrequency ablation (or RFA) procedures.
2016 more RFAs, hit the 10 year mark of this insanity and pain, 3 level M6-C ADR with Dr. Clavel May 19, 2016
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  #16  
Old 08-10-2016, 03:10 PM
drewrad drewrad is offline
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Yep. Me too, I'm afraid. Money wasted....
__________________
Weightlifter since 12 years old, now mid-40's and figuring out this wasn't such a good idea.

Chronic back pain started in 2010 while shrugging weights that a 40 yr. old shouldn't even try.

MRI in 2012 showing L4/L5, L5/S1 herniations and L2/L3 bulge.

L5/S1 taking on new shape, chronic sciatica, etc.

DEXA bone scan performed 5/7/14 showing mild osteopenia.

Surgery performed July 9th, 2014, Dr Clavel, hybrid three level lumbar.
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  #17  
Old 08-15-2016, 11:10 AM
twowheelyankee twowheelyankee is offline
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Yes Cynlite.....

There were more questions in his draft than there were answers.
In the Treatment alternatives discussion, he suggests 4 things, one of them is ADR at L45 with Active-L. The others include do nothing, get a discography, and the other addressed a concern of mine related to the height of the herniated disc.

Dr. Zeegers is a brilliant man, I have no doubt. I completely give him several passes because English is not his first language and it may take several back and forth emails to clarify questions.

I have a feeling Dr. Zeegers does not have a staff to help him with these international consults. He indicated he had some personal issues in his life that caused the delays. If a doctor is not available, you would expect his staff to update his patients. Unfortunately, he made too many promises and failed to execute on any of them.

My biggest concern was a low Z score and I asked him to comment on this and how if affects ADR. His only comment was, "mayebe somewhat poor".

I am the simplest form of a potential ADR candidate. Single level, no apparent facet issues, lordis good, no other remarkable indicators in my images or reports, save for the bone density.

In conclusion, it is buyer beware. It seems ADR/spinal surgery has become a marketeer's dream. Lots of advertising and promises of easy recovering (compared to fusion), pain-free lifestyle, etc. The other European doctors, who provided free consults (Clavel, Bertagnoli, etc), also indicated I was a candidate solely based on one set of MRI images and had a turn-around time in under a week.

I know it sounds like I am talking out of both sides of my mouth.. one doctor took too long, the other doctors responded too quickly. I also question myself. But you get that feeling, that hunch, where you know something is "hinky". I have never put this much research into any other surgery or doctor. I guess because back surgery has been a crap shoot for so long... 50% patients no better, 50% in more pain. I am hoping/counting on ADR changing these numbers. It has been around long enough in Europe to see some long term numbers. Plus, the risk of surgery outweighs the constant day to day pain and the reduced quality of life.

jim....
__________________
8 mm A-P herniation with annular tear at L4/L5
Initial Injury 2004
Chiro, 14+ Epidural Injections, PT
ADR insurance appeal won in 2013, delayed surgery
2016 pain is now affecting quality of life. Contemplating ADR surgery again.

2016 delayed surgery again due to successful pain management with meds.
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  #18  
Old 08-15-2016, 01:44 PM
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Cynlite Cynlite is offline
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Twowheelyankee, I too have spent more time researching ADR surgery, fusion surgery and stem cell treatments more than anything else in my life. There is a good reason for this. My spine problems took everything I enjoyed away from me and destroyed my quality of life for many, many years. I pray you never get this bad! It was not because of procrastination on my part but, rather because of a lack of good options to heal me. I am so grateful that the ADR technology and surgery advanced so much in the last 10 years in Europe! So far, the three M6's in my neck have made a huge difference and I am hopeful that my health will keep getting better.

I have problems with my lumbar spine now but, am not an ADR candidate. I think my lumbar problems came early to me in life because my cervical spine was screwed up for so long that it really changed my body strength and posture. This is one of the drawbacks of not fixing the problem(s). My greatest concern of having a one level fusion is the degeneration of the adjacent discs so, I have done nothing surgically. I think that even with the 50/50 ratio you gave, in the end fusion is a losing battle because the mechanics of the spine are changed afterwards. Of the two surgical options, I think ADR by a very experienced surgeon is the best hope anyone has of reducing their pain significantly while reducing the risk of further degeneration to the spine.

Here's my opinion for free

1) Do nothing surgically. Build core strength and work on body posture. Live with the pain until you can't tolerate it anymore.
2) Consider stem cell injections as an alternative to ADR surgery. I'm still trying to figure out if they are worth the investment because this type of treatment does not come cheap and has a supposed "70% chance of reducing 70% of the pain." Can stem cells heal your problem? If not, ADR is probably a better option because it will restore your body mechanics.
3) Skype with Dr. Clavel if you are still on the fence and think the M6-L or Activ L are discs that will work for you. It is worth the approx. $200 euro it will cost you. He impressed me on the call more than any spine surgeon in Europe or the United States that I have met and that is when I made my decision to have surgery with him. You are one of the fortunate ones to get an answer so quickly from him. I think I waited close to three months for my opinion. Ask him about your bone density concerns. Alternatively, you could email him your question but, you may have to be patient and wait for the answer.
4) If your insurance will cover an ADR this time, can you go to the Texas Back Institute and have surgery there? Are they still using the Prodisc L there or is the Activ L an option?

I agree that there is much money to be made in this industry which makes our choice of treatment difficult to figure out. It becomes increasingly difficult to trust any doctor because they all think they have the answer. My pain doctor for the last five years was very much against me getting surgery. Was his opinion in my best interests or his....I wonder? Many doctors in the U.S. are very procedure driven and that is always in the back of my mind. The promises of going back to work in 6 to 8 weeks is stated across the board for many types of spine surgeries and I agree with you that this is inaccurate marketing. Everyone is so uniquely different and our recoveries take as long as they take. It seems more often than not, the recoveries take many months not weeks. All you have to do is read lots and lots of post surgery stories to figure this out. After a couple of months of healing and with the help of drugs, a person could go back to work if they had no other choice, felt strong enough and if the surgery fixed their problem...there are lots of if's. From what I have read, the young, single level ADR candidates have the best chance of a 6 to 8 week recovery compared to us multiple level ADR patients. After 40, the older we are, the harder it seems it is for us to bounce back. Plus, it didn't matter that I was in great shape 10 years ago, I lost it and had that going against me for my recovery so, an 8 week recovery just wasn't going to happen and I knew it. However, for most of Dr. Clavel's patients (can't speak for the other surgeons) we feel much better right after surgery than the day before surgery. It's pretty remarkable. But then later, when there is more inflammation from the body healing from the surgery and we are off the drugs, we have a bit of a setback or plateau until about week 8. After week 8, I started making gradual improvements again. The same was true for my other spine surgeries. After 8 weeks, I felt I had done a lot of the healing from the surgery but, in those cases, the surgeries didn't help my pain levels much and then of course, I got worse and my pain story continued.
__________________
2006: epidural shots did nothing; 2 surgeons recommended 2 level fusion, I declined.
2007 - 2010 4 foraminotomy and cord decompression cervical surgeries and 2 endoscopic discectomy T7-T8 surgeries; total 6 with Dr. Jho (Pittsburgh,PA) My C6/C7 autofused around 2009.
2013 - 2015: epidurals 3 times (again did nothing) and 4 Radiofrequency ablation (or RFA) procedures.
2016 more RFAs, hit the 10 year mark of this insanity and pain, 3 level M6-C ADR with Dr. Clavel May 19, 2016

Last edited by Cynlite; 08-15-2016 at 03:52 PM.
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  #19  
Old 08-18-2016, 11:59 AM
twowheelyankee twowheelyankee is offline
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Default Cynlite....Angel in disguise?

Hey Big C......

Back in March 2016, I consulted a second doctor at TBI, Dr. Blumenthal. My first consult was with Dr. Guyer. I did not feel too confident with Dr. Guyer so I requested a second consult. While non of the doctors at TBI seem to want to send a couple hours answering my questions, I force them too. I harass their staff and their nurses for answers. My insurance does cover single level ADR and I was scheduled for surgery in September.

TBI has some of the best American-based ADR surgeons. Of course, this is always arguable. I feel confident with Dr. Blumenthal or Dr. Zigler. Eventually, I will take the plunge when non-narcotic medication stops working. Dr. Blumenthal has now gone with the Active-L for lumbar, which is what Dr. Zeegers mainly works with for lumbar. I have not research anything with respect to cervical.

Without medication, the pain is unacceptable. I refuse to live my life with a low quality. Therefore, if the quality of life dips again, I'll be in the assembly line for my ADR.

I was hoping Dr. Zeegers could help me with my unanswered questions from TBI analysis. However, i exerted so much effort trying to get a report from him, I have chosen not to follow up trying to ascertain any more information. I have made the conscious decision to cut my losses and focus my research locally.

I have severe doubts about after-care with ADR surgery abroad, especially when I can have it done here for "free" (insurance covered) and follow-ups will not be questioned.

As for stem cells, I was told my disc was too far damaged for stem cells to work their magic. I have not researched this, but being an engineer, my opinion is that once the disc is broken, the human body cannot repair it back to original condition.

I want to hit the slopes again, do some whoop de do's on a dirt bike. Luckily, I am able to play golf, bowl, and weight train with my current pain level without doing further damage.

Thank you for ALL your feedback and timely responses. It does not go unnoticed. Your knowledge and insight has helped me the most. I do truly appreciate it.

Thanks,
Jim
__________________
8 mm A-P herniation with annular tear at L4/L5
Initial Injury 2004
Chiro, 14+ Epidural Injections, PT
ADR insurance appeal won in 2013, delayed surgery
2016 pain is now affecting quality of life. Contemplating ADR surgery again.

2016 delayed surgery again due to successful pain management with meds.
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  #20  
Old 08-18-2016, 01:33 PM
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Cynlite Cynlite is offline
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You are most welcome Jim Thanks so much!

I think Dr. Blumenthal at TBI is a good choice in the U.S. especially, since your insurance will cover the surgery. He was my second choice but, I didn't have to think about him much because my insurance would not cover a dime of it. He and Dr. Zigler may have more experience at ADR surgery than any other U.S. based surgeons. That is my guess, but I don't know this as a fact. I know Dr. B. is a busy guy. I did speak to him on the phone once but, after he saw my first allergy blood test in the package I sent, he dropped me like a hot potato with no further explanation except he wouldn't operate on me because of the allergy. That was the response from all the surgeons though. In the end, it's not their job to figure out that problem. They are surgeons and they do surgery. I'm sure glad I was able to figure it out and have surgery or I'd still be laying in bed wishing I was dead.

Once my condition became acute, there was really nothing that made me feel better besides staying very still in bed and using heat and ice. However, before that, I found that juiced ginger helped a lot with pain. Try it out or throw a piece in a blended drink and see if it helps you to feel better. I'm pretty much in love with fresh ginger! Think I'll go make a shake right now

Everyone swears that Turmeric helps but, needs to be taken with black pepper or pepperine for best assimilation. I've taken it but, can't say one way or the other if it helped me. I think staying really hydrated is very important for the longevity of the spine. There is information out there on it. There are many things that we can do naturally to reduce pain and inflammation in the body. We just have to figure out what works for our particular body. Everyone responds differently. I personally prefer to stay away from drugs as much as possible.

I do hope you can continue to hit the slopes and play hard for many more years to come. It broke my heart when I learned I would never ski again. But you know, back in the very back of my mind is that hope that I'll do it again. I'm a fighter and never say never. The body has miraculous healing ability and medicine is always making advances. Wishing you the very best!
__________________
2006: epidural shots did nothing; 2 surgeons recommended 2 level fusion, I declined.
2007 - 2010 4 foraminotomy and cord decompression cervical surgeries and 2 endoscopic discectomy T7-T8 surgeries; total 6 with Dr. Jho (Pittsburgh,PA) My C6/C7 autofused around 2009.
2013 - 2015: epidurals 3 times (again did nothing) and 4 Radiofrequency ablation (or RFA) procedures.
2016 more RFAs, hit the 10 year mark of this insanity and pain, 3 level M6-C ADR with Dr. Clavel May 19, 2016
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