Friday, April 1, 2011

CCSVI - Round Two: The Details

imagesOn March 16, 2011, I was treated a second time for a condition called CCSVI, which is thought by some to be associated with multiple sclerosis. My first treatment was on was on March 17, 2010. To read about that earlier procedure, click here.

The purpose of this post is to share some of the details about the 2011 procedure, performed by Dr. Gary Siskin at the Albany Medical Center. To read all of my posts about this recent treatment, click here.  Remember that in a blog format such as this the most recent post is at the top, and the oldest post is at the bottom.

Dr. Siskin first threaded the catheter from the right common femoral vein into my left internal jugular vein (LIJV). He injected contrast dye into the vein and captured x-ray images of how the dye behaved (flowed).  This procedure is called a venogram.  When performed by an experienced interventional radiologist, a venogram produces a simulation of how blood flows through veins. In a healthy internal jugular vein (IJV), when lying in a supine position (I was flat on my back throughout this procedure), the blood flows from the brain down the IJV toward the heart. In this procedure, since the catheter is threaded up from the heart to the top section of the IJV, the dye should flow down the IJV directly along the path of the catheter. In the video, below, the catheter is indicated by the red arrow.

However, in my LIJV no dye flows back down the internal jugular vein as it should. Instead, the dye flows mostly upwards toward the head and then down an alternate vein called the vertebral vein. If CCSVI theory is correct, then this is problematic. Click on the video below to see how the contrast dye, and therefore my blood, flows in my LIJV.
Notes on watching the videos in this blog post:
1.  Each video loops through the dye release process 3 times
2.  To enlarge the video, click on the YouTube logo in the bottom right corner of the video
LIJV, head neutral, pre-angioplasty

Based on the location of the flow obstruction in the LIJV, Dr. Siskin suspected that there may be something outside of the LIJV impinging on the vein, preventing normal blood flow in the proper direction. He asked me to turn my head 90° to the right, and then he repeated the venogram. The video below shows how contrast dye flows relatively well down the internal jugular vein, instead of down the vertebral vein, with my head in this position. But also note that at the location of the red arrow, there remains a flow restriction at the lower part of LIJV. This is the location of a valve that is often (theoretically) problematic in MS patients. In fact, in my 2010 procedure this valve was balloon dilated, but apparently did not remain dilated. A venous restriction is sometimes referred to as a stenosis, and a failure of a dilated stenosis to remain open is called restenosis. Please watch the video below.

LIJV, head turned 90 deg, pre-angioplasty

With my head still turned 90° to the right, Dr. Siskin inserted a balloon, 4 centimeters long and 14 millimeters in diameter, and dilated the valve section of my LIJV. The first image below shows how the vein resists the balloon at initial inflation, and the second image shows how the balloon eventually overcomes the stenosis and fully dilates. Dr. Siskin kept the balloon fully dilated for approximately 2 minutes.

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Dr. Siskin repeated the imaging after dilating the vein (with my head still turned). The red arrow in the following video indicates where the dilation took place. You can notice improved flow in this section of the internal jugular vein, as compared to the previous video.

LIJV, head turned 90 deg, post-angioplasty

However, I can't go through life with my head turned 90° to the right. Therefore, although he was able to treat the restriction in the lower part of my LIJV, when my head is in a neutral position I will still see little or no flow through that vein because of whatever is impinging on it. Dr. Siskin believes that a muscle is pressing on the vein in one position but not in another. He was unable to treat this condition. There might be some treatment options, but none are conventional, proven, or obvious. I will discuss this further in the next post. In addition, since these are normal structures within the neck that are impinging on my vein, I can’t even be sure that this type of compression is responsible for the symptoms I am experiencing.

Dr. Siskin then directed the catheter into my right internal jugular vein (RIJV) and repeated the venogram process. He saw much better flow in the right than in the left, but still noticed some stenosis at the area of the valve, so he dilated that valve with a balloon 4 centimeters long and 16 mm in diameter. See the image below. Dr. Siskin’s team has found that many patients have a dominant internal jugular vein, which means that one side is larger in diameter than the other and therefore carries more blood flow. In my case, perhaps fortunately, the RIJV is the dominant jugular vein.

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Dr. Siskin then assessed my azygos vein, which is one of several veins that drains blood from the spinal cord. He did not find any obvious stenosis, but noted imperfect flow, and had some difficulty threading the catheter through a section of the azygos referred to as the arch. This is where a valve is present in many people. He therefore dilated the azygos arch, using a balloon of length 2 centimeters and diameter 10 mm. The angioplasty was performed 3 times so that the entire arch could be treated. A balloon of 2 cm in length was used so that the azygos arch was not distorted as much as it would have been if a 4 cm balloon was used. See those images below.
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Dr. Siskin also inspected a vein in my pelvis for a condition called May-Thurner Syndrome, which he determined I do not have. See image below. In fact, Dr. Mandato, who is Dr. Siskin’s partner, just presented their paper on May-Thurner Syndrome at the Society of Interventional Radiology meeting, which stated that May-Thurner Syndrome does not occur more often in MS patients than in the population as a whole. Therefore, they no longer routinely check for this in the patients that they are treating.


In my next post I will reflect on how I feel the process went. Did it work? How (and when) will I know? Was this worth it? Will I ever do it again?
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  1. Very interesting! Thanks Mitch.


  2. I don't know if it can be of any help, Mitch, but there is a doctor in Chili who claims that he treats CCSVI by removing escalen muscle or the first rib in order to give more space to the jugulars. They call the condition Sindrome de operculo toraxico. The doctor's name is Raul Poblete and there is a FaceBook site named SOT y CCSVI Chile. Jorge Mashini who holds the site got the procedure done last year.

  3. Mitch Thank you for your update.

  4. Thanks for the info, Mitch. Here I go with the questions again -- can you imagine what I was like in school??
    Are you conscious during the procedure?
    Is there any pain involved?
    While it's becoming more and more recognized as a treatment approach to MS, does insurance cover the procedure?

    Looking forward to reading about your results.


  5. Muffie,

    With Dr. Siskin the patients have conscious sedation. So I was awake, and I remember most of what went on, but it's a little blurry. There is a little pain involved sometimes when the balloon is fully expanded, but it is brief and no big deal. Regarding insurance, I would not say that CCSVI treatment for multiple sclerosis patients is a covered expense, but most practitioners have decent success getting insurance to cover the procedure by focusing on the fact that they are opening veins that are closed, and it's difficult for an insurance company to argue that this is a bad thing to do.

  6. Hi, I wish my ins covered some of it, they paid hosp 51g's and I paid 4, it might not be as much as 51, but it took all of my savings, I feel like 30-40% better, dizziness is my biggest issue! You have to wait 3-6 months to have procedure done again after 1st time. I'm hoping to feel even better next time around, the procedure doesn't hurt except a lil uncomfyness in ur neck when they blow up balloons:) I'm in Hudson Fl. Ted17 Thanks...