So sorry for the delay in responding to your questions. I had not been on the site for months and forgotten my password and just needed some time to be able to re-establish myself. Ok, how am i doing now? My pain hovers between a 2 and an 8 at all times. It can vary greatly on any given day depending on my activity level the day before, my nutrition (very important), how much water I drink -- all things that keep inflammation levels lower. And staying clear of things that elevate stress in my body such as caffeine, alcohol, etc. I don't like having to live such a strict lifestyle and I don't follow protocol as well as I should, but there is always a price to pay for that. I am slow in the mornings and it takes time for enough circulation to pass through the cervical region and up to my brain. I exercise almost daily and believe it or not, I ride horses which is rigorous and demanding and, yes, dangerous on some levels, but I chose not to let my pain control me that way. So I remain extremely strong physically which helps me float above the pain when it is not out of control.
I also have children, one of which is only 6 years old so I can't lead a life of leisure or rest when I need to and that has tough implications as it generally requires me to take more medication than I would like and then suffer the very unpleasant side effects of that. I have, through my equestrian lifestyle, been able to reduce my meds by 50%, but I still have days that I have to take extra to make it through. I am looking for another expert in the area of ADR revisions inside the United States who could provide an objective opinion that I can hold up against that of Dr's Delamarter and Kropt. I am not one to enter a surgery without doing whatever I need to do to get to the surgeons with the most experience, at whatever cost. So that's my next step. I am not satisfied with my quality of life. My pain is too high and the meds are always taking a toll. So I will keep looking and fighting for what is possible. That is my nature.
No, this was not my first surgery. I had a partial discectomy to start. That one set me up for a complete collapse of my cervical spine and the brain compression that led to multiple chiari one surgeries. It traumatized me for life. So be careful of so called "less invasive" surgeries. ADR was not available then and I had no idea that I was doing something that could provide for so much damage. The surgeon of course accepted zero responsibility even though later, when I was well enough to assess the situation, it was incredibly obvious that I had no business even being in his office. My husband almost drove up to San Jose to kill the guy. It was THAT so called simple procedure which would change the course of my life forever. Chiari is simply a blockage of the spinal fluid in the back of the skull but the treatment for it is not so simple. I had years of dealing with that before I could return to focusing on my neck problems. But I did. Dr. Bertagnoli was kind enough to at least consider me as a patient. I had such a confusing medical history at that point that most wouldn't deal with me. I was deeply concerned about putting an ADR in that top C4-5 level as it had always shown 'slippage' and US surgeons were against that notion. Bertagnoli would hear nothing of it and insisted that level was to have an ADR also.
But honestly, I think I saw the man for a total of 10 minutes and worked mostly with his assistant. Based on the aftermath of my experience, I would say that the US surgeons were likely correct and that, at minimum, that upper level should have been fused and is likely a great pain generator for me -- just too much motion for a gal that has highly flexible joints. I logistically couldn't really follow up with Bertagnoli as he was just too far away. And there were some unresolved financial issues that stood in the path as well. But my impressions of him were that he was a fast mover and really didn't have personal contact or follow through with anyone after surgery, leaving all of that to his assistants. But I could be wrong. Plus it takes a long time for everything to settle completely and know where you are so by that time, I was moving on with pain management and taking care of my family. I had had so many surgeries and trauma that I felt I couldn't handle any more. I had a friend of a friend who had a four level procedure with Dr. B, two levels fused, two with ADR's and he is completely pain free now.
My situation really is complicated because as part of the Chiari surgeries, they removed the back end of my top two vertebrae which causes instability at that region and that is something outside the scope of a general orthopedic surgeon. They just don't know how to bring all of that into the picture. I know that's a long answer to a short question but I am trying to be as honest and as helpful as possible. I am a student of the Science of Mind, therefore, I believe that regardless of what is going on in and around our lives, it is our perception that is most important. We can choose to feel grateful for what we have or choose to feel miserable for what we have lost. Sometimes, though, pain is just to unbearable for too long and attaining a healthy perspective isn't possible and it really isn't fair for others to expect that of us. I think if and when you reach that place, the very best thing to do is to get opinions from the best doctors you can afford and take a risk.
If I could do it all over again, I would have had a full assessment by Delamarter and tried to do the surgery here in the US where I would have had some decent follow up, but that wasn't an option at the time. Please feel free to contact me anytime in the future. I will always reply with as much candor as I can muster. Live for today! And know that there is help, you don't need to know all the answers today, but that you can be better. Hold that close to your heart and breathe it in. Stay connected, love yourself, be gentle. Help others even though you are suffering. It is very healing.
Take good care.
