Okay, folks, here's the skinny on my experience undergoing the CCSVI "Liberation Procedure", and the results obtained from it. For those unaware of what CCSVI or the Liberation Procedure are, please click here .
On Wednesday morning, March 10, my wife and I arrived at Kings County Hospital promptly at 7:45 AM, quite the improbable feat considering my intense loathing of the early morning hours. The hospital is about a one hour drive from my apartment in Manhattan, so we had a car pick us up at 6:45 AM (egad!). I somehow managed to get some sleep the night before, which was important because I had a long day in front of me.
Since my power wheelchair weighs about 300 pounds, making it impossible to transport in vehicles not specifically designed to handle such contraptions, we had to use my manual chair to get my gimpy ass in motion, which I despise (I feel like it renders me completely helpless). Because of the impending procedure, I had to stop taking the powerful anti-inflammatories that help keep my Avascular Necrosis in check, and the pain in my joints was intense. Riding in the uncomfortable manual wheelchair only made it worse.
Although I was considerably anxious, the trip to the hospital was made gratefully tolerable by our Egyptian cab driver, who was extremely intelligent and engaging. Our conversation allowed me to exercise my esoteric knowledge of ancient Egyptian gods, goddesses, and religious beliefs, which I rarely get to do in the course of a normal day (or week, or month, or decade), and telling tales of Isis, Osiris, and Horus went a long way towards taking my mind off of the potentially momentous events of the day to come.
Upon our arrival at the hospital, we took our place in the pre-op waiting room, and waited. And waited. And waited. I did my best to keep anxiety from taking root, trying some breathing exercises and meditation, attempting to stay in the moment and all that crap I like to spout off about, but still the butterflies kept churning away. We were finally called at 10:30 AM, and Karen and I were led to the changing area, where my godsend of a wife helped me out of my civvies and into the usual flattering hospital garb, complete with shower cap hat and rubber soled socks. We then again resumed waiting, until they finally carted me off to the surgery staging area around noon.
In the staging area, I conferred with some of the doctors and staff who would be assisting in the procedure, and Dr. Sclafani and I once again discussed that our expectations of finding anything significant were rather low, since my disease presentation is so atypical as to call my diagnosis into question , and my initial CT scans showed only one small area of stenosis high up in my left jugular, in an area that would be hard to address. I told Dr. Sclafani that I would prefer that he err on the side of caution, and he assured me that this was his intention from the get-go. I'll take this opportunity to sing the praises of Dr. Sclafani, who is an accessible, compassionate man that strove to make me a full partner in the process, and who respected and answered all of my questions and concerns in a professional but truly friendly manner. In short, Dr. Sclafani a very good man. I'm very lucky to have found myself in the care of some exceptional doctors who are also terrific human beings, including my primary neurologist, Dr. Saud Sadiq.
At about 12:30 PM, I was taken into the operating room, and gingerly made my way onto the operating table, with the help of a nurse and two orderlies. An IV was inserted into a vein in my left hand, and I believe the IV was attached only to a bag of saline, as I don't think I was sedated at all during the procedure. I may be wrong, but if there was any sedation, it was quite mild, as I was awake and alert throughout the entire process.
After sterilizing the location that the catheter would be inserted (my upper right thigh, adjacent to the groin area), I was given lidocaine injections in the area to numb it up in preparation for the catheter insertion. The lidocaine injections stung a tiny bit, but weren't really bothersome. Soon after, the procedure began, and the catheter was inserted into a vein in my upper thigh. The actual insertion was painless; all I felt was pressure and some tugging in the area.
The table I was lying on was integrated into an articulated x-ray machine, which changed position almost constantly as the catheter made its way through my vascular system and into my right jugular vein. Dye was injected into the vein via the catheter, so that blood flow could be tracked via x-ray. When the dye was squirted through the catheter, I could hear it as it filled the vein. Kind of strange, but nothing to freak out about. As soon as the dye filled vein was imaged, Dr. Sclafani literally said, "Wow!", and announced that I definitely had CCSVI. The blood in the right jugular was hardly flowing at all, and was blocked by a malformed, very large valve that was stuck almost shut. This seriously impeded blood flow, and forced blood to reflux back into my brain.
Dr. Sclafani tried to open the valve with a balloon device attached to the catheter, and each time he inflated the balloon it kind of felt like my ears were popping, very similar to the feeling you get in an airplane on final descent. He tried to open the valve three or four times, but with only limited success, and does not expect the valve to remain open for very long.
Next, the catheter was fed into my left jugular, and again dye was injected. This time, the x-ray images showed my blood flow to be perfectly normal, and the blood vessel showed no sign of stenosis.
These are some of the actual images taken during my venogram. The first two images show the abnormal right vein and the normal left vein. Notice all the fuzzy grayness on the left most image (right IJ). those are all the collateral veins trying to drain the right side through the vertebral vein. Unfortunately, even the vertebral vein is malformed and doesn't drain properly. The second image from the left is the normal left side and you can see uniform size and no collaterals. The third image is a close up of the abnormal valve, ( it's the gray area between the two areas of black ). Finally the image on the right is a view of the inflated angioplasty balloon.
The final step in the procedure was to explore my azygos vein, which is located in the chest and drains blood from the spinal cord. The catheter was manipulated into the azygos, and when the dye was injected, a small area of stenosis (narrowing) which was restricting blood flow was detected at the very bottom of the vein.
The azygos vein is a very twisty vessel, with lots of nooks and crannies. Unfortunately, the area of stenosis that was detected in my azygous was located in a very hard to reach part of the vein, and despite numerous attempts with different types of instruments, Dr. Sclafani could not access the site of the stenosis.
At this point, the procedure had already lasted over 4 1/2 hours, and the lidocaine that was used to numb the area of catheter insertion started wearing off. Suddenly, things started to become quite painful. I stupidly tried to gut it out for a while, trying to be the "Zen Warrior" that I like to imagine myself, but after a few minutes I realized I was being a "Zen Idiot" and alerted the doctors to the situation. After a few more lidocaine shots, the pain abated, and the procedure continued.
Trying his best to get at the area of stenosis in my azygos, Dr. Sclafani continued to try different instruments and tools in an attempt to reach the stenosis and balloon it open. This part of the procedure was not very pleasant, as I could feel the catheter snaking around inside my chest, creating an uncomfortable sensation of pressure that made me feel like I was having difficulty breathing. After exhausting his entire bag of tricks, Dr. Sclafani finally had to give up and leave the azygos stenosis unaddressed.
At this point, almost 5 1/2 hours after it started, the procedure was over. The catheter was removed, and pressure was applied to the area in which it had been inserted for about 15 minutes. When it was determined that the insertion point was no longer bleeding, I didn't even need a Band-Aid, and I can't even see where the catheter went in.
I was then wheeled into a room to recover, but since I hadn't been sedated, there really wasn't all that much to recover from. Karen appeared by my side, which gave my spirits an immediate boost.
Dr. Sclafani soon came in to explain his findings, which were that the right jugular was seriously occluded, and that although he tried with limited success to balloon it open, he didn't feel that it would stay open for very long. The options for addressing the abnormal valve that is causing the blockage are either the insertion of a stent, or a more traditional surgical procedure in which my neck would be cut open and the offending valve cut out. Neither of these options is particularly appealing, as Dr. Sclafani and I agree that until stents are designed specifically to be placed in the jugular vein, the risks involved in stenting the jugular are largely unknown and could be considerable. He suggested that the traditional surgical procedure might be the best option.
As for the obstruction in my azygos vein, Dr. Sclafani thinks that there is an instrument that he didn't have on hand during my procedure which he could use to reach the area of stenosis and balloon it open. This obstruction should remain open after ballooning, so we might decide to do another catheter procedure sometime in the near future.
After it was obvious that I had come out of the procedure in good shape, I didn't even need to spend the night in the hospital. Karen and I stayed in a local hotel, so that we didn't have to make the trip back to Manhattan, since we needed to visit Dr. Sclafani again the next morning.
Dr. Sclafani is going to consult with other doctors who are working on CCSVI, and determine the best approach regarding the two areas of abnormality he found in my CNS vascular system but had to leave largely unaddressed. We are still on the cutting edge of medicine when dealing with CCSVI, a theory that is still in its infancy, and there is much that needs to be learned.
In short, the procedure was a "successful failure", in that we successfully determined that I do have significant abnormalities in the vascular system associated with my central nervous system (a very important discovery), but those abnormalities unfortunately could not be remedied during the procedure.
As usual, I just can't seem to do anything "easy". While I now know that I do have significant blockages in my jugular and azygos veins, the scientific community still isn't sure that such blockages could be responsible for neurodegenerative damage such as is seen in my case. It stands to reason, though, that having such significant blockages in blood flow can't be doing me any good, and now that I know that I have these abnormal blockages, I would definitely like to get them fixed.
Dr. Sclafani is going to consult with my neurologist, and, I hope, with the neuroimmunology team that has been tracking my case at the National Institutes of Health, so the coming days and weeks should be filled with some important decisions and revelations.
Stay tuned, I'll keep updating Wheelchair Kamikaze with all of the latest news...