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.