Liberation

It is now 3 days after "Liberation Day". Sunday afternoon 12:30 pm. February 28th, 2010. Three days ago, Dr. Mohsin Saeed at Scripps Clinic opened my left jugular vein with angioplasty and my right jugular vein with angioplasty followed by a stent. The procedure is called by its inventor, Dr. Paolo Zamboni, The Liberation Procedure. It is a revolutionary treatment for an old, disabling disease -- Multiple Sclerosis. Until about 3 months ago, the only theory I knew about MS was that it was an autoimmune disease which attacked and destroyed myelin, the external coating around nerves. For unknown reasons, nerve conduction was slowed while plaques formed in the brain. It was always unclear why or when attacks would happen but they did and were difficult to control. Modern medicine responded with anti-inflammatory drugs and immune suppressants following the line of reasoning that if the disease was caused by an immune response, then stopping the immune response would stop the disease.

I was always leery of this approach because as a doc, I felt I needed my immune system to stay well in the face of my patients who carried diseases. In fact, I was quite proud of my ability to stay well in the face of wintertime time viruses, etc. So even though my life and body had deteriorated significantly over my ten or so years with MS, I kept my head buried in the sand in terms of using the pharmaceutical technologies available to me and my peers with this affliction.

Things changed for me in December of 2009. My new friend Federico told me via email about a new approach to MS. Now I am a doctor and he is a xigong practitioner who works as a landscape architect so I was not expecting much. However, I could not have been more wrong. I slowly learned about the vascular theory of MS which was invented and developed by Paolo Zamboni, a vascular surgeon in Italy whose wife suffered with MS. He found that the plaques in the brain of MS patients originated from iron. From this starting point, he found that the source of the iron was back flow of blood from the brain. The backflow was caused by venous blockages in the neck and upper chest. He went on to show that if these blockages were relieved (opened), then the disease stopped its progression and healing ensued. People returned to normal. He did a study of 60 some patients. He described various patterns of blockages (varied locations, etc). The patterns he identified corresponded to the MS variants which had been described:_primary progressive, secondary progressive, relapsing remitting. I learned about this slowly only because the data was sparse at the beginning of my search. I did google searches on line but only found a few things at first. I tried to confirm my research with local experts radiologists, neurologists, my doc friends. Even my friend David Sobel knew nothing about it and he was a neuroradiologist. I would check the internet every day and gradually more information and data were coming forward. There was a diagnostic study being done in Buffalo. There was a neuroradiologist at Stanford who was "trying" some procedures. Something was happening but it was certainly not mainstream and certainly not popular at least to mainstream medicine. I kept on with my search and time passed.

Finally, I convinced Dr. Sobel to do an MRV (magnetic resonance venogtraphy) on me at Scripps Clinic (my old place of employment). Low and behold it showed I had bilateral blocked jugulars! Holy shit! The disease has a new theory and the theory applies to me.

I was SOOOO excited. I had a chance. I could get better. I did not have to continue to become lame rapidly or slowly depending on what kind of day it was. I was back in the game!

My enthusiasm was dampened by my initial attempts to get someone locally to perform what Dr. Zamboni had demonstrated in Italy. I was a candidate for the Liberation Procedure by my MRV, but the world balked. Dr. Dake at Stanford had stopped performing the procedure for unclear reasons. He had decided to do a "trial" and there would be several months until they got up and running. I spoke to him and did get the feeling that he helped people by doing the procedure. Something must have happened in his experience that made him switch gears. He did not say. It was rumored he had complications, maybe even some deaths. I called my contacts. Some did not call back when I asked them to do the procedure on me. Some said I needed to wait for a trial.

Finally, I got to Dr. Mohsin Saeed. I knew of him from my prior work at Scripps. I had never really talked to him. He was recommended by Dr. Paul Teirstein -- the premier interventional cardiologist on the west coast who I knew from Scripps. Incidentally, Teirstein had not heard of any of this work when I first contacted him. He was in Rome at a conference at the time. He put me on hold during our conversation and asked around his table about the Liberation Procedure and Zamboni and the vascular theory of MS. The research was confirmed and he certified that "it was real". He told me to contact Mohsin. From there, Mohsin and I carried on an email dialogue for a few days. He checked out the theory, the research and the techniques. I was pushing him to do it SOON. I was ready to be opened literally and I wanted it ASAP. Finally, he agreed. Thursday, Feb 25, 6:30 am arrival for bloodwork and prep. 8:30 am Liberation.

I worked the 3 days before the procedure. This was good as I didn't want to think about the procedure. It was good to be busy. My friend and neighbor Dr. Steve Bierman counseled and hypnotized me 4 days before the procedure. I was happy to be getting "liberated" and I thought I was 100% for it but I was shaking my head "no" during our session even though I didn't realiize it. I was so gungho and had fought so hard to get to this point but I was still saying "no" unconsciously just 4 days before going in. I am defensive by nature and this radical procedure was flying in the face of the "medical establishment." Steve helped me work through my ambiguity and fear and got me fully on track. The last 3 days were just waiting for my time.

Although the lead-up seemed painfully slow, it really was incredibly fast. It was as if my whole life had been preparing me for this moment. My medical training, my personal beliefs about health and healing, my amazing support system all came together for this moment. While my body(and mind) had been deteriorating, I had been in denial for much of my last 10 years. Somehow the procedure brought me back into a world of reality that I had been denying for the past decade. Fortunately, I have an amazing support system which both let me live in denial for so long (while I insisted on lack of acknowledgment) but rallied behind me like a stampeding herd when I was ready to get well. My wife Grace led the charge and my friends and family followed her lead. Never could a person have so much love, support and undying loyalty behind them as I did getting ready for my Liberation. I have spent my life talking about the importance of one's support system in helping health outcomes and it turns out that I truly have the ultimate support system.

The procedure day went smooth. The nurses were top notch and kind. They gave me drugs for the procedure. I remember going in and I remember when it was almost over. Other than that, it was largely a blur. I remember feeling sensations in my neck--aching not really pain. They were brief and tolerable.
The recovery room was unremarkable. I read the paper and ate and rested. Mohsin stopped by and visited briefly. He reiterated that I would need aspirin and plavix to keep the veins open. I went home feeling much the same as when I had come. I awoke the next day feeling exhausted and disappointed. I had it in my mind that I would feel better right away. My energy would return nearly instantaneously. Well, I was wrong, very wrong. I had created that story in my head. Liberation should be instantaneous. That's the way it happened in the movies. Forrest Gump broke out of his leg braces when his girl yelled "Run Forrest Run". I wanted that for me too. Unfortunately, my life is not a movie (yet!).

However, I awoke today and my legs felt a little different; a little lighter. It didn't last long but I know that "things are happening". I got tired. The old feelings returned but I know from very deep down that I have been liberated. My liberation may not be in an instant; I may not be free yet but I am getting liberated. My nervous system is waking up! I started singing this morning. "my eyes have seen the glory of the coming of the Lord...His truth is marching on". I couldn't stop the words from coming. That isn't my song. Those aren't my usual words. They just came.