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Surgical Outcomes and Blogs Discuss L4-5 & L5-S1 Chartie Stenum - kc0iet in the Main forums forums; Please note that this was originally posted in 2004. I am restarting this thread, and trying to update it as ...

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Old 03-27-2009, 03:01 AM
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Default L4-5 & L5-S1 Chartie Stenum - kc0iet

Please note that this was originally posted in 2004. I am restarting this thread, and trying to update it as I have been away from the boards in a very long time and am not able to access the original post...

Originally Posted by kc0iet on July 27, 2004
SURGERY DATE: June 4, 2004

AGE AT SURGERY DATE: 39

SURGEON: Dr. Zecheal & Ritter-Lang

SURGERY LOCATION/CLINIC: Stenum Germany

DEVICE(s), Charite LEVEL(s):L4-5 & L5-S1

COST = 24,000. Euro (Approx. $30,000. US)
AMOUNT BILLED:
INSURANCE ALLOWED: $27,900 !!!!!
OUT OF POCKET: About $2000 plus travel!
TRAVEL: $1730.
EXPLANATIONS? Two coach tickets.


ONSET OF LUMBAR PROBLEMS, DATE OF INJURY, CAUSE, ETC...: Low back pain ongoing since age 19. DDD

PRIOR SPINE SURGERIES AND PROCEDURES (IDET, ESI, etc...): Steroid epidural injections (several through the years) - PT

PRE-OP MEDICATIONS: Bextra - Neurontin - Percocet

PRE-OP DIAGNOSTICS (discogram, nerve root blocks, etc...):Positive discogram in May 2004.

PRE-OP NEUROPATHIES (what, where, & degree of pain, numbness, tingling, sexual/bladder/bowel symptoms, etc.): Tingling and numbness in both feet and legs.

PRE-OP CONDITION (Please include %leg pain/% back pain, pain levels, type of pain, ability to work and function, disability status, etc.... be direct, but be as verbose as you need to):

Low back pain 65% Leg pain 35% Leg pain was achey with numbness and tingling in both feet, constant. Back and butt pain was all over the place depending on the amount of pain meds and activity level. Most days, with meds 6 out of 10.

Was able to function pretty well if I wore my brace until February of 2004. Have been off of work since 2/3/04. By the time I arrived in Stenum my quality of life, well, I had no life. I arrived in Stenum 2 days early and could not even enjoy it. Could barely even walk up the hill to the hospital.

TIME POST-OP AT ORIGINAL POST HERE: 7 weeks

DESCRIBE YOUR SURGICAL EXPERIENCE: No complications. Two level surgery completed in 65 minutes. Roaming the halls in the hospital the next day. Roaming the streets in Stenum and climbing stairs by day 4!

RATE FUNCTIONALITY / SATISFACTION AT INTERVALS BELOW:

FUNCTIONALITY:
1. Very poor: much worse... disabled after surgery.
2. Poor: worse after surgery.
3. Neutral: No improvement, or improvements offset by new problems.
4. Fair, some improvement, limitations are still serious.
5. Good, substantial improvement, some limitations.
6. Excellent: no limitations.

SATISFACTION:
1. Very sorry I had the surgery.
2. Somewhat sorry I had the surgery.
3. Too soon to tell, or I'm ambivalent about the surgery.
4. I'm somewhat glad I did my surgery.
5. I'm very glad I did my surgery.

FUNCTIONALITY: __4_ SATISFACTION: __5_ [6 WEEKS POST-OP]

FUNCTIONALITY: __4_ SATISFACTION: __5_ [3 MONTHS POST-OP]

FUNCTIONALITY: _3__ SATISFACTION: _4__ [6 MONTHS POST-OP]

FUNCTIONALITY: _3-__ SATISFACTION: _3__ [1 YEAR POST-OP]

FUNCTIONALITY: _2__ SATISFACTION: __2_ [2 YEARS POST-OP]

6 WEEKS POST-OP - DESCRIBE LIFESTYLE / PAIN / MEDICATIONS / NEUROPATHIES / ECT... (discuss surgery induced symptoms [leg pain?]):
Doing very well. Still learning not to over do. Starting to do light PT exercises. I had NO leg pain until I started exercises, now leg pain has returned. Back pain is gone most of the time. Some days there is some pain but not the same pain as before surgery. Incision looks great. Some pain directly on incision but the abdominal pain is gone. Still some soreness in spine at discs. Pain level most of the time, with meds is 2 to 3 out of 10. I am presently taking Bextra 10mg daily, Oxycontin 20mg twice a day and Percocet if I am active. Like when I mow the yard, go camping or am up and on my feet for several hours. Still not back to work. I have sent in another work excuse thru Sept. 4th. My current job is very physically demanding and I can not take any narcotics.

Well, not as good as I had HOPED at this point, but in honesty as good or better than I EXPECTED.

Cheers until September!

3 MONTHS POST-OP - DESCRIBE LIFESTYLE / PAIN / MEDICATIONS / NEUROPATHIES / ETC... (discuss surgery induced symptoms [leg pain?]):Well all, today is my birthday! The big 40!! It is also my 3 month and 3 days post-op anniverary. Still doing very well. Still learning not to over do. Starting to do strength building exercises and more physical activities. The leg pain is completely gone most of the time since I started taking Calcium. Back pain is gone most of the time. Some days there is some pain but not the same pain as before surgery. Incision looks great. Slight pain directly on incision but the abdominal pain is pretty much gone. Still some soreness in spine at discs but very little. Pain level most of the time, with meds is 0 to 3 out of 10. I am presently taking, Oxycontin 20mg most nights but not all and Percocet if I am active (1 to 3 daily). Like when I mow the yard, go camping or am up and on my feet for several hours. Many days no drugs at all. Still not back to work. I have sent in another work excuse thru Oct. 1st. My current job is very physically demanding and 12 to 15 hours on my feet is not uncommon.

Cheers till December!

6 MONTHS POST-OP - DESCRIBE LIFESTYLE / PAIN / MEDICATIONS / NEUROPATHIES / ETC... (discuss surgery induced symptoms [leg pain?]): I did return to work in October, and that was a mistake. Apparently my spine was not ready to be on my feet 12 -15 hours a day etc. I am working but it is very difficult.

1 YEAR POST-OP - DESCRIBE LIFESTYLE / PAIN / MEDICATIONS / NEUROPATHIES / ETC... (discuss surgery induced symptoms [leg pain?]): I am giving away most of my trips because I cannot tolerate it. Still working but when I take a trip I work four days and am flat on my back for three so that I can do it again.

2 YEARS POST-OP - DESCRIBE LIFESTYLE / PAIN / MEDICATIONS / NEUROPATHIES / ETC... (discuss surgery induced symptoms [leg pain?]): January 2006 was my last day at work. The pain in my legs and back was so severe that I was in tears at the end of every day. My ADR’s subsided, rotated and migrated. Films of my spine now look like a backwards ‘S’. I returned to Stenum in February of 2006 for a revision surgery and came home with a posterior fusion at L4-5. Two weeks later, something popped and the pain was back full force. No doctor’s here in the middle of nowhere so I traveled to Dallas, TX and a SCS was implanted, without success. I vow NO MORE SURGERIES! By June of 2006 I was using an electric wheelchair for mobility and rarely left my bedroom.


For the rest of my story (to date) I will start a new post in this thread…

Last edited by kc0iet; 03-28-2009 at 09:48 PM.
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Old 03-27-2009, 03:42 AM
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Default My Story - Part 1

Hi All,

It has been a very long time since I have posted, or even visited the boards. However, I am going to attempt to post my story with the hopes that it may save someone else from the same journey which I have endured.

Like most of you, I had suffered from back pain for many years. My back pain started at around the age of 18. I endured the pain for many years without seeking medical assistance. After all, at that age I was a United States Marine! – No Pain, No Gain ooh rah! So I pushed on for many years. I was in my late twenties when I began minimally invasive treatments and testing for my back problems; shots, chiro, tens units, physical therapy and so on. In my thirties I was finally diagnosed with DDD, some loss of disc height, tears, bulging at and mild arthritis at L4 through S1. By this time I lived in rural NE Missouri where the quality of medical care is a bad joke. I was in constant pain and my symptoms were consistently getting worse. With my low back pain, radiating down my legs (predominantly right sided) not responding to conventional methods the “F” word (fusion) kept coming up at more frequent intervals. Now, among other things, I am a very stubborn and determined individual. I had always heard that with a fusion the levels above would give out and the loss of motion was of great concern. I knew there had to be other options and I began my quest. It didn’t take long for me to learn that ADR had been preformed successfully for many years in Europe.

In the beginning of 2004 the pain was so overwhelming that I could not work. At this time I was a flight attendant which is much more physically demanding than many people realize. When I was working, my days were filled with 12 – 15 hours on my feet, twisting, bending and lifting. I was on family medical leave and receiving short term, employer sponsored, disability compensation. The key word there is short term. I knew that I had to find a way to fix my back soon or my career and seniority would be lost. As many of you have done, or are considering, I contacted the surgeons in Europe for a consultation. The staff at Stenum Hospital responded very quickly and advised me that I was a good candidate for ADR. In fact, I was in the waiting room at the Orthopedic Group here in Missouri when I received the phone call to offer me a surgery date. I still had not received a reply from the other surgeons that I had forwarded my case to. I was told that there was a very high probability that the ADR surgery would fix my back and that I would be able to return to work in four to six weeks! This was fantastic news, but how would I pay for this? I had been a single parent ever since my son was born in 1984. I had always worked as many jobs as it took to provide for my son but had never earned enough to accumulate any sort of savings. After some internal debate and discussions with my friends and family it quickly became apparent to me that cost was irrelevant to get my life back. I funded both the trip and the surgery with my credit cards.

It is difficult to explain the emotions I felt at that time. I was anxious but also relieved and very hopeful. The staff at Stenum was so reassuring that this was the right thing to do. So we left for Germany at the end of May 2004. I was scheduled for the first surgery on June 4, 2004. My two Chartie ADR’s were placed at L4-L5 and L5-S1 with approximately one hour of surgery time. As so many before me reported, I was up and walking that day and my leg pain was, for the most part, gone.


2004



I even requested to leave the hospital early. I walked more while I was in Germany than I had in months. I made the trip home without too many complications and after some rest from the long trip I was feeling pretty good. In fact, as you can see from my first post in this thread, I was mowing the yard and even went camping for the fourth of July in 2004.



OK EVERYONE, ISPINE SAYS MY POST IS TOO LONG SO I AM CUTTING IT IN HALF HERE AND WILL CONTINUE IN ANOTHER POST...

Last edited by kc0iet; 03-27-2009 at 03:49 AM.
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Old 03-27-2009, 03:51 AM
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Default My Story - Part 2

Then I return to work in October of 2004. Stenum staff told me that I could return to work within three weeks after returning home! By October, all of my short term disability compensation was depleted and the bills just kept coming so I felt I had no choice but to return to work. By December my symptoms were returning. I would fly four days and then be flat on my back in bed for the three days I was home. I went to my GP and had new films taken, but no one here has a clue what they are looking at with my films. I struggled on…By the following December I was in so much pain that I cried myself (almost) to sleep every night at the hotel. My last flight was on January 6th, 2006.

I requested new films and almost cried when I saw them. My spine looked like a backwards ‘S’. Unbelievably, the radiologist report and my doctor said everything looked normal! Everything was tilted, the ADR rotated and the plates were clearly subsided. I pointed this out to my doctor and began another “what do I do now” quest. I traveled from Missouri to Dallas for a consultation from a competent surgeon and he confirmed everything I saw in the films. Then I was again hit with the ‘F’ (fusion) word! I still did not want to accept this. I had also contacted Stenum and provided them with copies of my films. After some discussion Stenum said that they did not think there was rotation or sustenance. They felt that the cartilage and ligaments holding in the ADR’s was weak and felt that Dyneses was the best option, but more tests would be done when I arrived. I was scheduled for the Dyneses surgery on March 2, 2006 and back to Stenum I went. My second trip to Stenum was much different than my first. In 2004 we were all treated like Kings and Queens. When I returned in 2006 I was hidden away on the German side and largely ignored for several days. March 2nd came and went and I was told that they needed to discuss my case further. Surgery was rescheduled for March 4th. The only further ‘tests’ that were done were to make me flex and bend while taking more x-rays. On the 3rd I finally met with Dr. Zecheal and was told that the American doctors were wrong. There was no rotation or sustenance, it was merely perspective. I had repeated tried to get them to consider a revision surgery to remove the Charties and replace them with the Maverick discs. I was told that would not help me. Dr. Zecheal said he was going to discuss further with Dr. Ritter-Lang but felt I would have the Dyneses surgery in the morning and that would support my unstable ADR’s. That night a female doctor that I had never met came to my room, introduced herself and told me she would be assisting with my FUSION in the morning. Needless to say, I went a little bonkers! I let her know in no uncertain terms that I did not want a fusion. She let me know that they had discussed it and the fusion was my best option, and she left.

So here I was, in Germany, alone, scared, angry, frustrated, confused, you name it – I felt it! My travel partner was already gone for the night. She was staying at a boarding house about a mile from the hospital. I had walked there once after my ADR surgery in 2004. I needed to talk to her. She was the only one there that spoke English fluently at that hour. I took a couple of pain pills, grabbed my forearm crutches and headed out. I am not sure what time it was but it was very dark. Things look much different there when it is dark! If you have never been there, Stenum is what I would consider out in the country, few street lights, etc., you get the picture. Well, to make a long story short, I got lost. To this day I am not sure what town I ended up in with my sticks in my PJ’s but there was another hospital, traffic and lights. Finally I used my extensive (5 or 6) German Vocabulary to try to ask how to get back. No one had a clue what ‘hospital’ was. Just when I was ready to give up I asked one more driver and remembered the sign says ‘clinic’ not hospital! The driver tried to give me directions and fortunately she spoke a little English and we determined that it was far and she and her daughter gave me a ride back to Stenum. No one knew I had been gone for three hours! There was little time to talk to my travel partner in the morning when she arrived. I felt as if I had no alternatives. It was either trust their diagnosis, and have the fusion I had fought so long and hard to avoid or return home where I would continue to search and end up paying for a fusion here in the U.S. My posterior fusion was done that morning at level L4-L5. To make this nightmare even worse, the most unstable area of my spine was (is) L5-S1.

After my surgery, all the American patients had gone to the Hotel so I was allowed to go to the new American wing for recovery – where the staff speaks English and there is internet access. I still had pain but there was so much new pain from the surgery I could not tell if the fusion had helped or not. With the medications, I did feel better. I was up walking (with my sticks) the next day and left for the states a few days later. Within a couple of weeks of returning home I heard something POP in the area of the fusion and all of the back and leg pain returned full force.

I did return to the surgeon in Dallas in October of 2006. He wanted me to try the Spinal Cord Stimulator for pain relief before considering another evasive surgery. He did let me know that there was (still is) a non-union of the fusion. I did get the SCS, but there is no representative in the area to adjust the programming. Within a few months of getting it I would experience chest and thoracic pain whenever I try to use it. I did travel to have the programming adjusted when I tried to use it once and it turned on full force and would not turn off! The programmer was not able to adjust it to alleviate my pain but the chest / thoracic pain was not as intense. He felt the leads might need to be moved but offered no advise as to who might move them other than returning to Dallas. I sent a copy of my new films to Stenum, and told them of the report of a non-union for Dr. Zechael to review them, I checked back by email several times after I received the delivery confirmation, but I have never heard from them again.

2009



My new-year’s resolution for 2007 was NO MORE SURGERY! I decided that if I had to take pain meds and use a wheelchair for mobility – I could live with that. At my age, all of these surgeries were really kicking my butt! I sold everything of value that I had ever accumulated in order to pay the bills and survive while I waited for Social Security Disability. There had been no paycheck to paycheck to live by for a long time. My GP has added Fybermyalgia and RLS to my diagnosis’s. My SSD was finally approved, and in March of 2007 I started receiving services from Vocational Rehabilitation and started working on a college degree through an online campus. Since my fusion I have spent approximately 20 hours a day flat on my back in my hospital type bed in a town with a population of 297. No services to speak of other than my home health aide that comes by to feed me and take care of the house twice a day.

I have done my best to remain positive. I have only two more classes before I graduate Suma Cum Laude with my Bachelors. When school was in session I would suffer through the pain and take as little medication as possible so that I could complete my studies. Around the holidays (2008) I noticed that I had to take a lot more pain medication to control the pain. Around the first of March, 2009, the pain medication is no longer controlling the pain. I am currently taking Oxycontin, Percacet and Dilaudid. I am to the point that I can’t push my way through the pain and the mind fog to do my class work. I finally had new films taken and they don’t look good! New Films

So, here I am again… Now what do I do! I am again conceding defeat and looking for a surgeon to tell me my options. If you have made it through all of this post, then you should be commended. You are truly doing all you can to educate yourself and consider your options. I still believe that ADR is a good thing. Done correctly it can give you your life back. But if it is not done correctly, well you may find yourself in a similar position as I am currently in. DO YOUR HOMEWORK! CONSIDER YOUR OPTIONS! AND FIND OUT AS MUCH AS YOU CAN ABOUT THE SUCCESS / FAILURE RATE OF THE SURGEON YOU ARE CONSIDERING.

I write this not for sympathy, nor to detour anyone from their consideration for ADR surgery. I write this to let others know that ADR is a major surgery and you need to be certain that the surgeon’s goal is quality, NOT quantity!

Best of luck to all of you.

Last edited by kc0iet; 03-28-2009 at 09:51 PM.
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Old 03-27-2009, 03:38 PM
Gil Denis's Avatar
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Smile Thank You

Hi kc0iet

Thank You Thank You

Thanks for your story and hope you can resolve your pain.Living in pain sucks

Their must be a surgery here in the states to help?

I will hold out as long as I can

Thanks
Gil
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L5-S1 lam 1994
L2 to L5 DDD
L3 -L4 hern Dec 2007.
L4-L5 Annular fissure with mild central stenosis and moderate facet hypertrophy.
L5-S1DDDDD
L2-L3 Right-sided neural foraminal narrowing at and L3-L4 related to posterolateral hypertrophic spurs and facet hypertrophy.
C3-C4 limited DDD
9 injections Depo. P.T. 13 months 5 dose packs,
Nerve Block Injections.4 ESI S1
L5-S1 foraminotomy 09
L4-L5 Microdiscectomy 09 Reherniate 4-2010
Coflex-L Implants L4 to S1
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Old 03-27-2009, 04:28 PM
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kcoiet,

Thank you for your story....

What a wonderful job putting the your time-line
together.

We are all here to support one another.

Please stop in and say hello to us when ya
have some time.

You sound like you like to keep busy...

Todd
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Stenum Hospital * Germany

Surgery 10-19-07 ( L4-L5 Maverick disc )

For my true life story ...

go to -----> www.youtube.com

print -----> ADR surgery into the space bar

or ... http://www.maverick-disc.blogspot.com (my picture & movie updates)
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Old 03-27-2009, 07:45 PM
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Wow. Thank you so much for sharing your story. It is admirable that you want to help others, by letting them know what can go wrong. I really hope that you are able to find someone who can figure out a way to help you. No one should have to live like this.

I was also a single parent raising my son, coincidentally born in 1984 too.

Can I ask if you got bone density tests done before you had surgery, or since then even?

Also, what was your reasoning for asking to have the Charite discs removed and putting in Maverick discs?

I am struggling to figure out how to determine which disc is better. Though from all I have heard, I don't think I would ever want a Charite. I assume that the Charite was the disc to use though, back in 2004.

Again, thank you for sharing your story, and I hope you find some pain relief.
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Cathy

46 years old. 12-15 years of intermittent pain, 2 years with constant pain.

DDD, L4-5 and L5-S1, pain confirmed by discogram.
PT, ESI's, Facet injection and block, Acupuncture - all no help.

2-level (Prodisc-L) ADR surgery with Dr. Bertagnoli, May 26, 2009.

Currently taking Opana-ER (tapering off) and oxycodone
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Old 03-27-2009, 08:50 PM
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kcOiet,

My heart goes out to you. Other than sympathizing with your circumstances, there's little I can say. You put all your eggs into a basket and the bottom fell out. I'm sorry.

I know you want no more surgeries and have no more money but perhaps there is still hope for a successful revision surgery. I realize disability benefits won't pay for another surgery in Germany but Dr. Regan in Los Angeles has now done successful revision surgeries. Perhaps if and when you're ready, you'll be able to put this together and pain free days may lay ahead.

thank-you for sharing your story, Dale
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3 level Prodisc adr S1-L3, Oct 12, 2005
Dr. B in Bogen, Germany
Severe nerve damage in left leg, still working on it
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Old 03-27-2009, 09:46 PM
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You are such a strong person. I will be praying for you very hard. I met you at Stenum in 2/06. What a life. Don't give up. You are an inspiration.
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Rob Wilson
2/06 L4/5, L5/S1 ADR Stenum Hospital - Iliac vein cut w/ occlusion of iliac vein and hematoma
12/06 thru 8/07 Laser Spine Institute - 6 surgeries on L3/4 both sides, L4/5 both sides, L5/S1 both sides

4/08 Bonati Institute - redo of L5/S1 right
8/08 Bonati Institute - redo of L5/S1 left
12/08 Bonati Institute - redo of L4/5 right and left

9/8/09 Piriformis surgery for sciatica and cramping
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Old 03-27-2009, 10:02 PM
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Default Hi Rob

Great to hear from you!

Where is Bonatia Institute? Did they replace your ADR's?
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Old 03-27-2009, 10:08 PM
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They are in Florida. My ADR's are fine. Of course my 9 blood clots cause some swelling in my leg but it is much better than it was. After ADR I still had leg pain from the stenosis that needed to be cleaned out posteriorly.
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Rob Wilson
2/06 L4/5, L5/S1 ADR Stenum Hospital - Iliac vein cut w/ occlusion of iliac vein and hematoma
12/06 thru 8/07 Laser Spine Institute - 6 surgeries on L3/4 both sides, L4/5 both sides, L5/S1 both sides

4/08 Bonati Institute - redo of L5/S1 right
8/08 Bonati Institute - redo of L5/S1 left
12/08 Bonati Institute - redo of L4/5 right and left

9/8/09 Piriformis surgery for sciatica and cramping
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