One Week

As I am sure the few people reading this are somewhat disillusioned that this is not a miraculous end to the disaster that my young life has become however there are benefits and instead of waiting for it to get worse, there is scientific evidence that it should improve further. I am reflecting however at the cruelty that is now manifesting itself in the fight against this perfectly logical idea.

I remember when I was at my worst and the center of MS help was only interested in diagnosing my rapid and peculiar presentation. Phrases like "steroids help everything" rang in my head for years. Mind you, i was not given ANYTHING and it would take a year of suffering to get steroids from another doctor. I needed help immediately and the doctors seemed more interested in the science than helping. I see that now, something that has been shown to help is refuted and argued against for the guise of science. Let us not forget that the Death Camps too performed cruel and sadistic experiments on people not for torture but for science. Captured specimen became subjects forcefully, in this case the patients come to doctors. Why has the practice of healing disappeared, why has the creed of help gone away? We do not want to be subjects of study, we want help and a return to our lives.

I worry about the progress, i was quite advanced for the disease course, I want to get back to my life. I've spent enough time reading philosophy to know that there is no God and that there is nothing else. I feel that i have lost large sections of time and because doctors were too comfortable in their disease model. Everything has a cause, it is ridiculous to assume that a body so perfect can suddenly attack itself. Thank you to Dr. Zamboni who looked further and found that cause. To all the doctors/scientists, go fuck yourself, the most sadistic thing is taking patients who are suffering and do tests on them. They will take whatever you give specifically because they dont have the luxury of choice.

I truly hope that that nightmare is behind me, it is called the liberation for variety of reasons but perhaps most of all is liberation from the sadistic control of these pseudohealers.

Day 6

While results fluctuate and my anxiety remains high I see the war that is taking place. It seems that the largest facebook ccsvi community has been infiltrated by spies. The protection of financial interests are nauseating. Perhaps it is also protection of ego, how such a simple theory can bring down an empire.

It appears now that as soon as someone states that they are officially testing and even worse treating the issue, they experience the wrath of the establishment and are forced to stop for variety of trivial reasons. I never imagined that the possibility of help for such a devastating disease be so suppressed. The internet has definitely changed the power/knowledge dynamic, yet even that does not include everyone.

Bottom line is that words do not matter, ask for this by other names, escape the grip of this industry that wants to give you poison and watch you slowly die in agony. "Venous blockage, venous stenosis, venous drainage, venous return" anything other than ccsvi, more importantly stick to angioplasty not liberation.

Meanwhile, i notice that i am standing better, with my entire foot. Balance is better, shakes and bladder functions improved. Perhaps this is anecdotal, but i am hungry more often.

Day 4

In an attempt to escape the listing of symptomatic improvements I will just say that it is like being a child again. I see on facebook other people who have done this and their excitement at being able to ride a bike, going for walks, and other seemingly normal functions for an adult. This whole experience has been a nightmare of sorts rarely imaginable.

Improvements come and the hope is just the continual path of improvements. I am not playing tennis or traveling yet, it is not a magic bullet and sadly I cannot move on and forget this nightmare, but perhaps with time.

Everything has a cause and the autoimmune theory seems to be the default go to explanation when something cannot be explained. I will update this blog with notable findings in the future.

Don't breathe, don't move

I had brought a stack of research to my Primary Care Physician and asked for a doppler ultrasounds based on the Zamboni criteria. He proscribed it and I went to a hospital to have that done. There were all kinds of strange sounds coming from the ultrasound but I did not see what I wanted to nor did the technician reveal any information. I was worried and on my next visit to my PCP he informed me that the resident radiologist at the hospital had provided a report that my carotid artery, among other misguided results was normal.

I asked for an MRV and brought the protocol with me this time. I handed the protocol to the technician and proceeded to have the all day long scans. Turns out that my PCP ordered MRIs as well as MRV, either way it took hours.

This time, I went to the hospital myself and retrieved the CD. Looking through it myself I knew exactly what to look for. Stenosis, of the right and left jugulars was quite evident to me and I was excited to go back to my PCP.

He called me few days later and told me that results came back normal. I objected that the results are far from normal and I would be happy to show him. He was interested how I, a regular citizen, knew what stenosis looked like. I told him I would show him.

I came to his office with my laptop and showed him the otherwise misdiagnosed MRV images. Wow, he said and told me that he would speak to the IR he recommended. This IR could have done the exams her self but she did not want to have anything to do with me. Anyway, I asked him for another IR to see and he gave me a name.

This IR saw me and questioned me on my MS, already eager to hand this off to an MSS. Hearing who I saw previously, he became excited that the doctor was one of the best MSS. No, I said, look at the images. He left the room and came back 10 minutes later and told me that the jugulars are fine. Unbelievable. He said that the right one is blocked but left one has flow, 1 is enough. Ok.

My mothers doctor recommended a Vascular Surgeon and my mother went to him with printed images of my MRV. Specific images that were most striking were chosen by me for this adventure and indeed the surgeon also said that it does not look normal but could be breathing but in either case a venogram, the gold standard, would be much more reliable. He sent the case over to his IR since for him this was to minor of a procedure.

The morning consult with IR consisted of him, stating that he heard of the Italian theory however he could not guarantee results. "We will go slow, lets look first," were his other comments. Surely fearful that this is not expected to produce anything serious.

I was prepped and wheeled over to the surgical room where I was further prepped. The doctor came soon and began. The needle did not hurt at all and the only sensation of pain was when the catheter reached my head. The crunch accompanying the minimal pain was evident as problematic. "Stenosis," he finally spoke out, "mark the time and get a balloon." A wonderful sound for someone reading the materials on a daily basis.

"Don't breathe, don't move," he said and the pain in my head increased, as my stenosis was high and in my head. "That's better flow," he said. I smiled while laying with the radioactive xray over me. He moved the catheter to my left and spoke out for another balloon, bilateral problems. He struggled with the left and even noted how beautiful the right one dilated.

A few more of "don't breathe, don't move," and it was all over. My and my mother's demand to check the azygos vein was probablu annoying but he took a picture of it and said its fine.

Neither the doctor nor the staff had ever seen this and thus were fascinated that the correlation was consistent with Zamboni elegant theory.

Turns out that one of the assistants trained with Dr. Dake in Virginia and knew more about this by studying Dake, still I was the first for him.