Wow! What a series of posts. What perspectives on the history of Stenum. For those here who don't know me I am MrBee (Willie). I rarely post anymore here or anywhere. Mark once told me that when a spiney resumes living again that he/she stops posting. He is right.
My friend Mark was to meet me last Thursday, he called me at 6am to tell me he could not make our breakfast meeting, he had just booked flights to Germany in two days! This was so he could have a very scary cervical mulit level ADR. Hard for me to believe. I posted to him once I read his post surgical report, then I found this thread. Whoa am I in pain, not physical (I do have those intense memories) my heart is in tears for Stenum failures.
I knew Fred, Carmen, Rina, John, Rob, Charlie and others. All of us passed through Stenum. Some names of folks here who have all had revision surgeries. There are others who through my ordeal have contacted me directly. I have kept those folks confidential.I know of others who have had surgeries with surgeons here in the US that have had revsions. It happens in this highly risky world of man's attempts to artificially alter the human anatomy.
I wish to make known that indeed during my time at Stenum, and subsequent to that I knew of failures. During that era, all reports, articles etc referred to the single digit percentage of failures using the Charite device. Remember in 2004 the device was not yet approved in the US. So it was difficult to obtain much info on it. I found Mark who incredibly had had this same surgery. After speaking to him I felt OK to seek this German made technology. There was no iSpine or GPN then, just Mark a real passionate human who was helping others. By the way who here would like to help those like us who even after putting all our hopes into our seemingly only choice of radical surgery that can end horribly be there for us after? Mark does this with compassion. I found the Stenum webpage, contacted the success stories and spoke to the Director and based my decision on this, plus never ending pain!
As to my story, I am not a medical theroist. I am really bad on all these highly technical aspects of implantation, translation, lateral movement, etc. I am a simple man, who underwent a most incredible journey. I personally witnessed several immediate failures in my window of time at Stenum. Those days of old of countless hours or days spent on the computer or phone talking to so many people who had been to Stenum and were still suffering. I sought like others for an end to my horror, post my fifth surgery to be wheelchair and bed bound. On 240 plus mg of morphine daily (no typo) along with a boxful of other high powered meds.
To witness the trail of those who contacted me for solace or venting was and still is a watermark in my life. I have nothing to compare it too. Yet it happened. All of it. Why? Was it surgeon error? The device? Greed? (packing 10 to 15 Americans in a week when the German/others count was far less). Or something more than this?
It was surreal. I have prayed for Stenum for Dr. Ritter-Lang, for Dr. Zechel to stop whatever was happening. I am not like Mark, he had devoted his life to helping those like all of us to find the best choice for our surgerical decisions. I did not use or pay Mark to help me choose Stenum. He thought I was OK to make my own choice. Once my world was shattered with a failed outcome (surgery #4) I asked Mark to come with me to Stenum for my revision. He was amazed that I would invite him (I had paid for my neurosurgeon to come to my ADR surgery in August, he backed out at the last moment).
Mark and I discussed the thousand questions to ask Stenum about my upcoming rare if not unprecendented revision surgery. I was glad to have Mark with me. I value those people who have such real insights/intellect whom can help me through my life or business decisions. Mark was a beacon of light to me when all was dark. During our flight over, Mark shared his life and new passion with me. I suggested to him that he should do this. Accompany people like me to Germany and advocate for them in a foreign country in a foreign hospital environment. Only after my horror that was days away did Mark experience firsthand that epihany to stand up and tell the world about these experiences.
I do not have all the answers. For the fellow who had his surgery at Stenum (trker I think) I am thankful for you and your family that you are doing well. I pray that Stenum has a zero failure outcome. I wish there was actually zero failures in any of these horrid surgeries anywhere. It is a tough road to hoe to experience pain and suffering. I have gone through what few have. John was one. Rob another. Fred is still alive and lives on massive drugs. He has been throuh detox twice, what an insidious cycle.
I have not nor choose to stay up on the ongoings of the ADR world and Stenum. It is like a bitter time for me to reflect. However, it is part of my life. My life today is based on this experience. I do not know of any one who has my same story. From deaths door to a miracle. I can only live like you each day in wonder. My body is healed, pain free, drug free. Like surgery never happened. It is sureal.
My heart goes out to Havanna. You are a dear to recall John. I remember when Carmen flew to help John in a dark time. Folks there are many stories of compassion thoughout this world of spine surgery and life. John was like us. He made a decision that led to his ulitimate death. I know of others who have never posted anywhere, that went that way too. I was ready too, only God intervened.
This is a long post but important, not to bash Stenum, but to shed some light on the history of the events in 04. Has Stenum changed, yes. Are they free of failures? No. Is the percentage of failures like 04? I do not know. Who would know? My view looking back is this, I would hope that either with these horror's I witnessed personally and my pressure on Stenum through De Puy made Stenum "correct" the internal problems.
Does a forum like this with a thread like this help? Absolutely. Does it polarize us with opinion of course. Pro and con. I love some of the folks at Stenum. The Backenkohler is the best memory. The countryside of Stenum is outstanding. The other side though is troubling or was. Or could still be. I can only hope that for anyone reading my post that you consider carefully wherever you have surgery. Know the risks, ask questions, assume nothing, ask about failures. Ask for cetificates or credentials. This is your life in a surgeons hands, he or she will not or should not be offended. If they are, then run from that one.
Lastly, I appreciate that Mark had allowed this important thread to stay up. Other forums have closed threads like this. Is it only the Stenum aspect? Or is it a man who has helped in a world of hurting humans. Where it is easy to vent and post our intimate feelings/emotions, especially when we are in pain. My did I recluse in that world of misery. I could not even watch TV and see normal happy people doing the things I would never be able to do. I hope that did not strike to hard of a nail with some of you in that exact place. I lived it. I know it. I am thankful to God for His gift to me and my family. I am thankful for Mark as he really stands alone in helping us to wade through this world of hard choices.
I pray for Mark to recover and resume his place on the forum. I pray that this forum continues to thrive.
Willie
MrBee
|