Upcoming surgery w/Dr Zeegers

[henry4956]

It's been a while since I posted on this site. I wanted to let anyone interested know that I have a surgical appointment on April 16th with Dr Zeegers. The base plan is a 2 level adr L4-5 & L5-S1. Dr Zeegers has told me it's possible that he may have to do a hybrid in which L4-5 will be a fused. I'm hopeful that L4-5 will be qualified for the adr but if it is not then so be it. Even though I got 2 other opinions, I knew all along it would be Dr Zeegers. In my mind he is a one of a kind surgeon and person. I also want to give thanks to Mark Mintzer, whom I just recently reached out to for some advice. He's a class act for sure.

[Karger]

Hey Heney,

That's awesome. I've been in contact with DR Zeegers myself. I have my MRI for the 30th, and then I'll have all the information to send to DR Zeegers so he can review and provide me my options.

Hope all goes well!

Karger

Originally Posted by henry4956

It's been a while since I posted on this site. I wanted to let anyone interested know that I have a surgical appointment on April 16th with Dr Zeegers. The base plan is a 2 level adr L4-5 & L5-S1. Dr Zeegers has told me it's possible that he may have to do a hybrid in which L4-5 will be a fused. I'm hopeful that L4-5 will be qualified for the adr but if it is not then so be it. Even though I got 2 other opinions, I knew all along it would be Dr Zeegers. In my mind he is a one of a kind surgeon and person. I also want to give thanks to Mark Mintzer, whom I just recently reached out to for some advice. He's a class act for sure.

[henry4956]

Thanks, it wasn't always a smooth ride with Dr Z. He has his quirks just like we all do. He can sometimes be a pain in the ???, but I'm paying for his world class surgical expertise and I tolerate his quirks. Don't get me wrong he truly is a caring and genuine person.

[mmglobal]

Sometimes he seems like the nutty professor, but he is one of the the most genuine people I know. If you want great marketing, more logistical support, etc... he may not be your pick. But, if your priorities are first rate diagnostic capability and the most experienced and careful surgeon you can find, you cannot do better than Zeegers!

Mark

PS, He saved my life in 2002 and I feel very blessed to call him a friend.

[Maria]

Yay Henry!!!! So glad that you hooked up with Mark and then hooked up with Dr. Zeegers and will be having your surgery soon!!! I wish you the very best with the upcoming surgery and recovery and hope you'll keep us posted and tell us about how you'll be handling the trip and the surgery and such!

As far as the hybrid part goes like you said what will be will be ~ I thought far too much and too long about too many things when it came to a 3rd surgery and didn't do it so I'm excited for someone when they can make these kind of decisions and follow thru!

Don't get me wrong I'm Ok with my decision just still am happy for those that can make these important decisions and then act on it with conviction!

All my best~ Maria

[henry4956]

Thank you Mark & Maria
Mark said it best, I also belong to that other website and over there Dr Zeegers is not nearly as popular as the 2 'Hot Rockstars' Clavel & Bierstedt. I have nothing against either of them, but in the end it was Zeegers experience and attention to details that won me over. Being a computer programmer I always look at everything analytically and I was able to overlook some of his quirks and concentrate on his pure surgical ability and it was clear to me that he was the logical choice.
I will make some posts after the surgery and keep everyone up to date.

[pyrotalk]

Good luck Henry.

I am always amazed how many contemplate surgery outside the US after exhausting all available options in the US. There are wonderful docs around the world, no doubt, but many with local insurances can only seek with their realm while others will do anything to get the best. Very commendable

[henry4956]

Fortunately for my wife and I we had a relatively small mortgage on our home and about 225,000 in equity. We qualified for a re-finance and doubled our mortgage balance to do this surgery. We stretched out the payments to 30 years so it wouldn't be too much more per month. In the end, I felt like if it was financially doable then I was not going to let money determine who/where I had this done. I know many don't have that option and I empathize with them.

[Karger]

Hi Henry,

Your probably in flight or trying to get over the jet lag, but I hope everything goes well on the 16th! I am excited for you and would like to know your experience is with Dr Zeegers!

I just got MRI which was the last of the data I required before I can send to Dr Zeegers!

Once you get back to a PC, please do let me know how everything went etc.


Cheers,

Karger

[mmglobal]

Henry had his surgery yesterday... I've been speaking to his wonderful wife. All OK so far, but he is NOT having fun! Under the best of circumstances this is a tough ordeal. Hopefully, the worst is behind him and we'll hear from him soon!

Mark

[Maria]

I hope Henry is doing Ok.. my limited experience with 2 spine surgeries has given me the impression it's not definitely not fun though when successful I'm sure the whole ordeal is definitely worth it. Here's hoping all went well with Henry's surgery and the surgery and recovery will yield pleasing results!

[henry4956]

Please refer to Alain's new thread for an update

I plan on a very detailed blow by blow recap in coming days and weeks

thankyou dearly for your concern

[mmglobal]

Henry's update post is here:

http://www.ispine.org/forum/18799-post4.html

[henry4956]

L3-L4 ActivL (XL) spike type:
One selected remark on surgery report:
The disc L3-L4 is completely gone with dorsal annular tearL4-L5 ActivL (L) spike type:
One selected remark on surgery report:
General very severe worn out disc degeneration, without signs of infection. Repeating of cleaning procedures until nice overview of both bony endplates and nice view of big rupture of central and left sided
dorsal annulus.

Zeegers also told me that I had approx. 50% disc height loss at each level
I was exactly 6'3" before surgery. When I was in my mid 40's I was 6' 4 & 1/2 inches tall. I have not re-measured my new height. A little confused about what they said to me regarding that. I believe I was told I gained 3-4 centimeters (which should be somewhere between 1 and 1 & 1/2 inches)

[henry4956]

15 days post-op:
I have far exceeded my short term goals. Have reduced my Percocet daily intake from approx. 65mg/day during 1st week-10 days to about 1/2 that now. Walking twice/day for about 40-45 minutes each time. Spending no more than 18 hrs/day horizontal as opposed to about 22/day pre-op. The surgery report revealed some very severe disc tears and extreme degeneration. I walk with confidence now and feel better when the walk is done instead of being ready to collapse.

Slow and steady progress.

2nd best decision I ever made. Marrying my wife #1

[henry4956]

Today I was able to do my longest walk yet. 1 hour. I don't keep track of the distance. a) I do it in the privacy and comfort of my own big yard and b) I probably walk slower than most. and c) I must be careful with my right foot as I have had a long battle with plantar fasciitis for several years.
I do 2 walks per day, hopefully soon I will be able to extend all of them to 60 minutes. Some may not think this is that much, but I certainly do. When I think of where I am coming from. Slow & steady is so crucial in my mind.

My biggest problem with the walking is pure physical exhaustion. Lying in bed 22 hours a day for 3 years will do that to you. My back feels invigorated during the walk (no back pain at all).

I am currently dealing with loosing my primary care doc during my stay in Germany. How's that for timing? They are trying to reduce my Percocet by 50% at a time when I don't know what tomorrow will bring. More on that later.


I was using 65mg/day of Percocet thru day 8. got it down to about 32mg/day thru day 16 and last 3 days I am getting by on 22mg/day.
My pre-op intake was an average of 13mg/day - but remember I had to supplement that with being horizontal practically all day.

I have drastically reduced the ibuprofen from 1800mg/day to 400

I estimate that I am on my feet (vertical) about 4 more hours per day than pre-surgery. My worst time of day is always the morning when I get up, the back pain is present then, but for rest of day it's fine with occasional minor flare-ups. The AWFUL DEBILITATING 'BELT' PAIN IS GONE!!!!!!

[mmglobal]

Originally Posted by henry4956

... Lying in bed 22 hours a day for 3 years will do that to you. My back feels invigorated during the walk (no back pain at all).

Henry... this literally brings tears to my eyes! Take care... enjoy your recovery.

My real recovery didn't start until I was 7 weeks post-op. The first 2 weeks were hell on earth. The next 5 weeks were dominated by withdrawal symptoms as I did a fairly aggressive taper off my meds. I didn't care... I was in a hurry to find out what the rest of my life was going to be like.

After that... it was like every moment, I could feel the life being sucked back into my body. Every morning I'd look in the mirror and could not believe that I could stand up straight. It took 6 months for people to stop telling me how different I looked. (Funny, I thought I looked normal before my surgery but the pain was written on my face.)

I was never as bad off... your 22 hour/day prone is pretty extreme. The long, severe pain syndrome... the worse it is, the slower your recovery may be. Hopefully, you'll have a little slower version of what I experienced.

Note that I probably had 5 or 6 setbacks in the first 2 years that scared the crap out of me and made me rush to the doctor for xrays to see how I'd damaged my ADR's. Invariably, a few days later I'd be kicking myself for panicking. The odds of moving or damaging the discs (if properly installed) are astronomically low.

Good luck my friend.... keep posting your experience as we don't see as many folks in your situation as we do the "yoohoo, look at me, I'm water-skiing" patients.

Mark

[henry4956]

I am finding that maybe my most difficult part of this recovery is the pure exhaustion I feel from simple walk etc. My body has become so weak from my lifestyle (last 3 yrs). I am intentionally taking a day off tomorrow to help my sore knees and sore feet from the walks. I've been working hard for 3 weeks and deserve a break. I am starting to tentatively plan a Labor Day party to celebrate my rebirth. I have found out who my true friends are thru this ordeal. I have no room in my life for the fair weather friends who abandoned me in my darkest hour. My own brother, some from my wife's family etc. That's why this gathering will be a joy. True friends who are genuinely happy about my comeback

[Maria]

I was thinking when you mentioned your foot/feet prob (since I have posterior tibial tendonitis that I made much worse over a period of 5 years) that you may want to break up your walks into shorter walkers more times a day or do what you're planning on doing such as skip a day or however you need to do it. Like you said "slow and steady." Your whole bod has to get back into shape including any other injured or weak areas.

[henry4956]

That's exactly what I plan on doing. I have been doing (1) 1 hour walk in am, and (1) 30-40 min walk in pm. As determined as I was NOT to do too much too soon, I may have overdone it slightly. I am going to limit my walks to 30 minutes and do 2/day. Soon I will be back in the pool 3/week and I will supplement my exercising with aqua therapy (some walking in water and some light conservative cardio work in pool) Still waiting for incision to fully heal (almost there).

Maria, you should be applauded for your kind, supportive words. It seems that you lend your support to everyone who comes here.

God Bless
Henry

[Maria]

Once a nurse always a nurse? Hope your recovery is such that the patience you take with getting your new back together and your body as a whole will yield long lasting excellent results you'll enjoy the rest of your life!

Re overdoing.. I seem to only realize I'm overdoing when I've overdone

[henry4956]

I am closing in on 5 weeks now and all is going very well. Pain levels keep getting better, med levels keep going down. Dr Zeegers fixed me. The surgery report validates my decision and Dr Zeegers diagnosis. It feels so good to know I had the right thing done. Most US neurosurgeons would not have done anything for me. I'm in that category of people whose mri did not reflect the amount of pain I was in. I am so grateful that doctors like Willem Zeegers are out there. So for any of you who are going thru hell with spine pain and not getting a clear consensus of opinion or perhaps are not getting any significant recommendation, I suggest you see Dr Z. He's a spine saver.

[Maria]

So glad to read about your improvement and your satisfaction with your decision and surgery!

I only wish that more people had the choice/opportunity to utilize an out of country provider whether it would be due to needing $ or having insurance that won't approve an out of country provider/surgery.

It's great when one reports $ invested was worth every cent and probably way more in terms of ability to recover a life/lifestyle!

Thanks for the update Henry and please do continue to update and uplift! And of course thanks to Dr. Willem Zeegers for the incredible work he does!

Maria

[mmglobal]

Henry, glad to read that you continue to do well.

It's not only that our films look too good to support our reported pain levels... people who are down as hard as you were are look at as malingerers, drug seekers or psych problems. Most of us who are down that hard actually do have a substantial component of depression that is part of our pain syndrome. Sadly, a huge percentage of spine surgeons dismiss us. They do have political cover to do so because those of us who are that severely disabled actually do have a lower chance of success/higher failure rate. But people like you and I would have our lives thrown away because we are dismissed based on our 'demographic' instead of actually looking past the depression and severity of our disability and our 'too good' looking films.

OK... I'm off the soap box now!

Thanks for keeping us posted.... this is why I keep doing what I do... you have just recharged my batteries.

Mark

[henry4956]

I am doing very well. ALmost never think about it anymore. Not doing anything crazy though. Walk 2 x day, Swim 3 x week. No Percocet!

My coccyx which is unrelated still aggravates me, but what can I do, it's been 13 years so I'm kind of used to not being able to sit for more than a few minutes.

I had lost all hope and was in deep despair for 3 years and I'm loving life again -thanks to Dr Zeegers and a little inspirational talk I had with Mark.

[vnf]

Henry

Glad to hear things are improving.
I just had injections today in the SI joint because of that same tailbone area pain.
Dr. Zeegers told me that it's probably referred pain from the lumbar area and not the SI joint.
You probably just need more time for your muscle's to relearn where they are supposed to be and actually learn to relax again.
Don't over do it.
Remember that gel pack is your BFF!

Glad to hear you are improving

[henry4956]

Thanks Vicki, really think about you a lot. Don't know if my coccyx will ever normalize, but I cant emphasize enough how much better life is without that awful low back pain

[Maria]

Sounds like you're doing great! With that activity schedule I'd be back in shape in no time Keep up the good recovery!

[henry4956]

I have never been involved in such a messed up, bureaucratic situation. So far they have requested several documents a 2nd and 3rd time and assigned a 2nd case # to my case.

When I talk to the reps at the international phone #, they keep telling me my case is still pending. I was able to have Dr Zeegers fill out a 'Letter of Medical Necessity' that I drafted and which they requested.

The 2 times I called my local BCBS they tell me verbally that because it was 'planned' and not a emergency like a car accident that I am denied. Yet when I ask for a formal denial, they just pass over it and tell me I can appeal. That is nonsense. I will not appeal something in which I have no official letter of denial. Especially when the International people tell me my case is still being considered.

The one good thing is that I've never heard anyone tell me anything about the procedure itself being 'EXPERIMENTAL' like so many others who are denied.

I really think if I just keep after them, one day someone is just going to stamp it 'APPROVED' and pass it on because they want to keep their desk clean.

Stranger things have happened.

[vnf]

Henry

When I called BCBS Worldwide, I told them that I was going for a planned surgery and would I have any benefits for that.
The guy asked me for my member # and said "yes, I do have benefits".
I specifically said "even though it's a planned surgery and I'm not there vacationing and something accidental happens". The guy said yes, I have benefits but a pre authorization has to be done by the clinic.
The guy gave me a case number and I'm supposed to call them back when I have a surgery date. That's as far as I've gone.
I have not called back yet to see what happens next.
I know that just because he says "I qualify for benefits" doesn't mean that they will approve anything.
I'm going to try and get it covered too.
I'm pretty much feeling like US or Germany won't matter and they will still try to deny it for any reason they want to dig up.
I hate them! It's very frustrating.

[henry4956]

Got my 1st official denial today. It was on the basis of not meeting 'medical necessity' criteria. I actually think I will eventually win. If their denial was based on the 'experimental' explanation I would be more discouraged.

[Jim M2]

For sure this is David vs Goliath. David won. I think you will too.

I hope you can get a spine surgeon to write the letter. No doubt that would help. I'm sure I've posted my letter before but here it is just in case you can't find it. I don't know if it will be useful. Several weeks after my surgery I submitted a written appeal (SEE THE LETTER BELOW THE ASTERICKS) requesting to be reimbursed for medical costs. About 50 pages of doctors office notes, radiology reports and all of the bills and descriptions of services from Germany (and in German) were attached to the appeal. Several weeks later I received a check for 89% of the total.

Consider that my employer, not Regence, is the risk taker in my plan. Regence was hired to simply administer the plan. In the end I think the real decision to approve the appeal was made by company management. What were their motives? I don't know, but somehow I feel it wasn't just a bottom line decision. I've found the company to be reasonably fair in these matters. No telling what you're dealing with. I think your Goliath is bigger than my Goliath. The bigger they are the harder they fall.

************************
October 24, 2003

Regence Blue Shield
address
Seattle, WA

Dear Appeals Specialist,

PUPPOSE
I am appealing to Regence Blue Shield and The Company to reimburse me for medical costs of artificial disc replacement (ADR) that were incurred in August and September of 2003 in Munich, Germany. Please respond to this request in writing to the undersigned.


INTRODUCTION
In May 2002 I developed chronic, severely debilitating low back pain. In search of relief I visited numerous physicians including a pain management doctor, orthopedic surgeons and neurosurgeons. MRI, X-rays and CAT-Myelo diagnostics all confirmed a collapsed lumbar disc at L5S1. Medications, physical therapy, exercise and severe restriction of activities brought only limited reduction in pain levels. After months of research on the topics of spinal disorders, fusion and ADR I opted for ADR. In August 2003 I traveled to Munich, Germany and had ADR by Dr. Willem Zeegers at the Alpha Clinic.

LETTER OF MEDICAL NECESSITY
I am submitting this letter together with the writings of five surgeons as a Letter of Medical Necessity.

The first three writings are office notes from the U.S. surgeons who personally examined me in 2002 and 2003 prior to surgery. Their names are Dr. Villanueva, Dr. Schlitt and Dr. Krengel. Their office notes are attached. All three surgeons speak of spinal fusion as the primary option to be considered in my case for pain reduction and increased functionality if conservative treatment did not improve my condition.

The forth writing is from Dr. ML Whitworth. His writing is a matter of public record. It can be found online at the Massachusetts General Hospital Neurology discussion forum. A copy is attached. Dr. Whitworth feels "fusion is an archaic barbaric anachronism which is only necessary if there is significant spondylolisthesis or foraminal stenosis..." In the attached writing he goes on to justify this statement, to advocate ADR under protocol and to explain that many surgeons continue to perform fusions for monetary reasons.

The fifth writing is a diagnostic report on my condition from Dr. Zeegers of the Alpha Clinic in Munich, Germany. Dr. Zeegers is the world's leading ADR surgeon. He has performed over 1000 implant surgeries since the 1980s. After examining my MRI, CAT-Myelo, x-rays, radiology reports and patient questionnaire he concluded that I was a good candidate for ADR, pending a personal examination in Munich.

Beyond these writings I read extensively on the topics of spinal disorders, spinal fusion and ADR to ascertain my understanding of the risks and potential benefits of these two medical procedures. My conclusion matched that of Dr. Whitworth and Dr. Zeegers. It was my conclusion that ADR was statistically superior to fusion for pain reduction, improved functionality and better prospects for long term health.

ADDITIONAL CONSIDERATIONS
1) ADR at Alpha Clinic costs $20K. It is my understanding that ADR under FDA trials in the U.S. costs $60K. It is my understanding that costs for spinal fusion in the U.S. range from $50K to $80K.

2) Dr. Zeegers is the world's leader in ADR. He has performed over 1000 implants of the SB Charite artificial disc since the 1980s.

3) Surgery was needed in the near term to relieve pain, prevent degeneration of facet joints and to eliminate potential for nerve damage.

4) It stands to reason that European surgeons performing ADR would have a higher success rate when compared to their lesser experienced U.S. counterparts.

MEDICAL ACTIVITIES AT ALPHA KLINIK
On 18-Aug-2003 I departed for Munich, Germany. On 21-Aug-2003 I was personally examined by dr. Zeegers at the Alpha Clinic. X-rays were made of the lumbar spine and discography was performed on levels L2S1. A complete physical examination which included chest x-ray, EKG, breathing and blood test, was performed. I was fitted with a custom made lumbar corset. On 22-Aug-2003 a Charite artificial disc was implanted at the L5S1 level of my spine. I spent four nights in the Alpha Clinic hospital before being released on 26-Aug-2003. Just prior to release from the clinic more x-rays were taken to verify placement of the implant. An ultrasound test was conducted to verify the absence of thrombosis. In the two weeks after surgery I received two more personal examinations by Dr. Zeegers and five sessions of physical therapy at the Alpha Clinic.


SUMMARY OF MEDICAL CHARGES AND PAYMENTS
Receipts, exchange rates, accounting and descriptions of services are attached. Payments were made by wire transfer and VISA card. Approximately $6K of travel expenses and lodging have been borne by myself.

CHARGES
ITEM EURO
Brace Shop 1,000.00
Anesthesiology 1,540.66
Medical Exam 300.00
Alpha Clinic 10,389.90
Surgeon 4,371.52
Ultrasound 88.27
Physical Therapy* 450.70
-------------------------
Total 18,141.05

PAYMENTS
ITEM EURO US DOLLAR
Wire Transfer 15,256.97 17,250.00
VISA 1,000.00 1,101.76
VISA 1,345.11 1,481.98
VISA 88.27 97.25
VISA* 350.56 393.34
VISA* 90.14 101.14
-------------------------------------
Totals 18,131.05 20,425.47

*Discrepancy between charges and payments for physical therapy appears to be a clerical error where Alpha Klinik billed my VISA 350.56 Euro instead of 360.56 Euro.

CONCLUSION
Regence BS and The Company are requested to pay $20,425.47 to employee "First M. Last" to meet their obligations as his health care provider. Please respond to this request in writing to the undersigned.

Sincerely,
First M. Last

Contact information:

[henry4956]

Thanks much Jim, I did submit a 'Letter of Medical Necessity' that Dr Zeegers filled out. It was not elaborate but he spoke of my unbearable suffering. I am reaching out to my local neurosurgeon who had been treating me for 2 years prior to surgery. I have already obtained all of his notes for the injections he performed on me. I was hoping that in those notes from my last visit to him prior to my surgery that he would have mentioned that I could not stand for more than 5 minutes and I had regressed greatly. He also said the 'the time had come to do something'. He did not mention those things in his notes. In my letter to him I reminded him of my dire condition and also that he told me fusion surgery would be a 50/50 proposition for quality of life. I just sent it to him today. I sure wish he had taken the time to make those notes when I was there. I will be very upset if he doesn't write a letter stating my condition. My wife works at RI Hospital and she is the administrative assistant to the man who has the power to make a call and fix this wrong. He told her yesterday to go thru the appeal process and if denied again he will get involved.

[Jim M2]

It good you have someone with some weight who can pull for you if the appeal doesn't work.

[susadr]

Hi henry4956,

How do you feel almost a year post ADR surgery? I'm eager to hear how you feel about your Activ-L ADR!