Monday, March 21, 2011

CCSVI - Round Two: Treatment Day

My worst nightmare was coming true.

Everyone kept introducing themselves and telling me their names. Didn’t they know that the name-remembering part of my brain didn’t work, doesn’t work, never has worked, even before MS started eating away at my central nervous system? The staff at Albany Medical Center probably realized this and took great delight in tormenting me. I think the name-remembering part of my brain must share space with the joke-remembering part, because although I possess flawless comedic timing and delivery, alas, I cannot remember a joke to save my life.

Seriously though, everyone associated with the Albany Medical Center, on this day of my second CCSVI treatment, was courteous, professional, competent, and because they've completed over 500 of these procedures, well-practiced. The check-in was quick and efficient (yes, you read that correctly). Once I was in the prep room the nurses crawled all over me, preparing me for the procedure. This included changing me from my street clothes into a johnny, lifting me from my wheelchair into the hospital bed, and getting an IV started in my notoriously skittish arm veins. I noticed that they each wore identical blue pants and blue tops, in order to further name-confuse me. Obviously, everyone got the memo. Well played, nursing staff.

At one point I asked Kim to take a photograph of me, in my hospital bed, for the blog (see above). The nurse snapped, "No time for that! You need to help him fill out these papers. You want him to be ready in time, don't you?" This nurse made it her singular mission in life to ensure that I was appropriately and promptly prepared. I know it's not because she feared retribution from Dr. Siskin if she underperformed, he’s such a mild-mannered guy, but because she simply cared about doing the job right. I liked her and feared her a little at the same time.

At 11 o'clock, as scheduled, I was wheeled from the prep room into the procedure room. A group of new people started telling me their damn names, but this time they upped the ante. The staff not only had the same pants and tops on, but they also had identical hats and masks, for the sole purpose of making the name game that much more humiliating for me.

Angulus venosusI was positioned comfortably on the procedure table, and instructed in the nicest possible way to essentially “not move a muscle.” They began administering the sedative through an IV. I felt sleepy and relaxed, but not loopy. I remember much of what was discussed and what transpired. Before I knew it, the catheter was threaded up into my left internal jugular vein. Then began the first of many sequences over the next 80 minutes where I was instructed to “hold your breath and don't move.” During these times the contrast dye was injected into some part of my venous system, and a series of high-speed images was captured to determine and record how well the dye (and therefore, the blood) flowed through that particular section of vein.

The medical team operated like a well-oiled, yet compassionate and friendly machine. Here’s one little example: I always received the instruction to "hold your breath and don't move" directly from Dr. Siskin. But I'm guessing that, sometime in the first hundred or so of these CCSVI treatment procedures, they realized that sometimes Dr. Siskin becomes so engrossed in what he sees on the image monitor that he forgets to tell the patient to resume breathing. So it was the responsibility of one of the identically clad nurses in the room to tell me that I could breathe again, in those 25% or so of instances where Dr. Siskin was otherwise mentally engaged. I’m very glad that whats-her-name was there.

There was one significant difference between how I felt during this procedure compared to how I felt during my first procedure in Brooklyn, last March. During that initial treatment, I was never really conscious of the balloon expanding, or if I was, it was a mild sensation. On several occasions during this most recent CCSVI treatment, I would characterize the balloon expansion as, at least very temporarily, a bit painful. I grimaced a couple of times. Dr. Siskin offered to increase the dosage of sedative, to numb the pain, but I declined (I think). I hesitate to even mention this, because the last thing I want to do is worry any MS patients who are on the fence about whether to have CCSVI treatment or not, but I think it might be germane to my story, and this is why. Because I experienced more discomfort, perhaps the veins were more robustly ballooned, and will remain open for a longer period of time…or maybe not.

Scheme showing relative positions of primary l...During, and immediately after the procedure, I was made aware of the general results. I'll share that level of detail with you in this post. After I was fully recovered from the sedative, Dr. Siskin sat with me and gave me a thorough accounting of what had transpired. I will share that detail with you, including images from the procedure, in subsequent posts.

Dr. Siskin ballooned the valves in the lower part of each of my two internal jugular veins and in the arch of the azygos vein, similar to what Dr. Sclafani had done last year. Additionally, he identified a flow restriction a few inches higher in my left internal jugular vein, which was position sensitive. That is, in a “head neutral” position, there is almost no flow passing through that vein. However, when I turn my head 90° to the right, blood flows freely. Dr. Siskin believes that a muscle is impinging on the vein in one position, but not in another. This problem was not treated, but we do have some options to consider going forward. More on that later.

Wait! I’m now remembering one of the recovery nurse’s names. I think it was Gail. She was planning to visit Maine this summer. Wait! I’m remembering something else. Stop me if you’ve already heard this one. A neurologist, a rabbi, and an MS patient are sitting at a bar one day…
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  1. Mitch, it's Kim from Cape Eliz (ME) w/ prog.MS - we chatted a couple of year ago & i've been lurking around since then. I hope round 2 is successful. Prayers your way.

  2. Hi Mitch, I too have PPMS, for 20yrs now. I had the CCSVI procedure on3/10/11. I have not seen any results yet. Like you, I can't and won't sit around and wait for a cure. I'm ready to do it again as soon as I can. This time, I'm taking my time and having the second procedure with the best, once I find him. I can't wait to hear how your feeling. Best of luck!!!

  3. So I'm they do this procedure and look into people's vein's, do they collect info that fills in the gaps as to why? Why are the veins blocked? Does the blocked vein look similar to other damaged blood vessels that they've seen. can your procedure provide clues for cause? I read once that there is a link between MS and the virus that causes mononucleosus. Could a virus like that from earlier in one's life have damaged these?
    Chris campbell

  4. You didn't finish or I couldn't open the rest after the joke about the 3 sitting @ the bar. I / We're ALL anxious to hear from you. Nicely organized thoughts.
    & for the comment be for mine "Anonymous" I've read a Dr.'s comments & she said "our bodies are filled with Virus's". fyi I've also had Mono.
    Good Day

  5. Thanks to everyone for commenting. Chris, most flow restrictions are thought to be congenital malformations- birth defects. But there is much still to learn about CCSVI causes and consequences. There is a link between MS and the Epstein-Barr virus, and I did have mono shortly before I got MS, but it seems unlikely that the EB virus causes venous stenosis (vein restrictions).

  6. Hello Mitch! I was in Albany the same day you were and teated by Dr. Siskin. Hopefully he is back from Chicago. I can't wait to read your next post! MS has had me for 20 years ,but my Detroit doctor can't seem to decide what kind! EB may be the infectious part of the 3 pronged "cause" for any disease. My sister had mono,optic neuritis but no MS! She didn't live in a chemically toxic location as did I. MANY questions.

  7. Thanks for sharing a idea....Great post and informative
    CCSVI Cancun