This Is MS Multiple Sclerosis Community: Knowledge & Support

Dr. Makris is limited time wise by the size of his existing practice, which is mainly treating dialysis patients. When I talked to him, he had teated 9 CCSVI patients and was booked into June. Never hurts to ask Jackie what the schedule is.

Donnchadh

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Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

I just found out that my insurance was billed over $26,000 for the doppler, venogram and procedure. I was told with insurance it would be a little more than the $7500 for self pay. If my math is correct that is over 3 times as much. I hope my insurance does not give me any issues if I have to have the procedure again soon.

I finally got the Explanation Of Benefits from Medicare and a revised invoice from AAC. Apparently they had to re-submit twice.

I will let anyone on Medicare know what the charges were (and codes used), but don't want to disclose it publicly. PM if interested.

Needless to say, it was mucho less then what is charged to insurance companies. I wonder if they raised their prices?

Shame, MS patients already have enough to deal with-now have to figure out how to come up with big bucks for a procedure that comes with no guarantee's.

Donnchadh

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Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

Gilenya, the latest and greatest ms drug, is being introduced at $48,000 per year.

Are they giving any guarantees?

Brian

Yes it's guaranteed not to cure you.

What I was trying to say was that a CCSVI procedure doesn't come with a guaranteed 100% success rate. Some have dramatic improvements, some have none. A very few are, regrettably, worse off. These results reflect the widely varying physical problems with the veins-I suspect each case is unique.

I am convinced that the vast majority of causes for CCSVI are indeed congenital in origin but a very small percentage (5%?) were caused by trauma.

And it is disheartening that the procedures are expensive, especially considering that many MS patients aren't wealthy. But then we are entering the broader health care debate raging here in the USA, and frankly I don't have the answer for that. What would be a fair payment to the doctors, hospitals, pharma while still being affordable to the patients????

For my own personal situation, choosing to be treated was the correct decision. I was one of the lucky ones.

Now compared to the latest and greatest "MS" autoimmune drug, which isn't meant to (nor is capable of) correcting any CCSVI conditions, the venoplasty procedure is a bargain. Producing very expensive urine, perhaps?

Donnchadh

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Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

I just received a nasty PM from Dr. Nero Oligist threatening legal action concerning my criticism of "MS" drugs.

see:

http://www.thisisms.com/ftopicp-158894.html#158894

Donnchadh

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Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

I believe you're protected under the First Amendment regarding satire....

http://www.firstamendmentcenter.org/spe ... ody_satire

I have decided to switch to the original thread so as to keep everything in one place.

Here's my comments concerning the follow-up ultrasound:

QUOTE

The sonogram technician is named Colleen, and she was very competent.
Overall, the testing took about a hour. She started by having me lie flat (supine position), and carefully breathing though my mouth. She placed the ultrasound probe at the base of the venous confluence (near the collar bone) on the right hand side and carefully worked her way upwards.
Later, she switched out the ultrasound probe to a trans-cranial version and then placed it just below my cheekbones in order to examine the vertebral veins.

After the right side was completed, she moved the ultrasound machine to my left side and repeated all the steps.

Then I was tested again sitting upright for all the sames sites (right and left sides, down and up the veins).

I asked her how many CCSVI patients she has done now and she said about 25. Colleen went to Brooklyn to learn Dr. Sclafani's (based on Dr. Zamboni's) protocol for a week. She is using the exact same techniques.

So, for us in the mid-west, it is entirely feasible to have a "real" CCSVI ultrasound test. I was impressed how through and efficient she was.
She answered my numerous questions.

UNQUOTE.

I have since received a copy of the technician's report. Here's the findings:

"The right internal jugular vein measures 5.2 mm in the J2 segment and 7.1 mm in the J1 segment. The left internal jugular vein measures 6.6 mm in the J2 segment and 7.6 mm in the J1 segment. This was performed in the supine position. There is reflux identified in the internal jugular veins bilaterally both in the supine and upright position. The vertebral veins fail to demonstrate any significant reflux in the supine or upright position. The deep cerebral veins fail to demonstrate reflux except for the left deep cerebral vein, which displays reflux in the upright position. I see no abnormalities of the valves. The delta sign is a positive number bilaterally."

So, here's my own personal understanding of my situation. I suffered a severe ladder accident back in 1990, with a resulting neck injury. There was a MRI taken in 1992 showing lesions in my brain and spinal cord, along with herniated neck dics C5-C6. So I knew that I had spinal cord and brain damage from the accident but back in 1990 no one had heard of possible associated vein damage.

Wanted to add: prior to my accident, I was in great shape and had absolutely no neurological symptoms or problems of any kind.

For the next three years, I was tired every day. I suspect that during this lengthy recovery period, a massive network of collateral veins were forming. Both the IR's who did the first and second procedure noted that the sigmoid sinus was considerably narrowed. The sigmoid sinus is directly above the top of the internal jugular vein, and it drains directly into the IJV. Because there were bilateral stenosis at this location in the IJV, the sigmoid sinus was non-functional and the site of reflux. The collateral veins essentially just bypassed the stenosis sites.

So the good news is that the two pairs of stenosis (one bilateral pair high up on the IJV, the other pair at the confluences) have been opened and they are staying open. The bad news is that the sigmoid sinus is still narrowed and the collateral veins are draining most the of blood. Reflux I suspect is caused by the collapsed sigmoid sinus. There is no current medical intervention possible for treating the sigmoid sinus.

Symptom wise, some of my previous problems have completely vanished, others lessoned, and a few unchanged. Nothing is worse.
My iron removal protocol seems to help control the remaining symptoms,
but I will never be completely normal as long as the sigmoid sinus remains narrowed.

Donnchadh

_________________
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

Update 8 July 2011: I had to cancel my second ultrasound appointment because I still haven't received the Medicare Explanation of Benefits statement for the first ultrasound test.

I cannot afford the financial risk of being liable for a non-covered procedure, so have to forgo further testing until I receive notification from Medicare.

I asked how many procedures Dr. Makris is doing now and was told only about two a week; mostly because of his volume of dialysis patients.

Donnchadh

_________________
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

Are you feeling well? Any loss of improvements, that sort of thing?

My condition has stabilized; at the very least I am no longer getting worse as was the case before my late December 2010 procedure. My younger brother recently told me that he observed I was rapidly getting worse before that procedure but didn't want to say anything to me about it before. As someone who has been diagnosed as Primary Progressive since 1990 (and told I was un-treatable by the neurologists), at this point a rapid decline would normally be anticipated.

However, I have finally accepted the fact (emotionally and psychologically) that I need a walker to help with long distances. It helps with balance issues and to help counteract spastic leg movements.

I am following my iron removal protocol along with an exercise program. It consists mostly of using an exercise bike; started at only a quarter of a mile and I am now up to two miles a day. My leg muscles had really atrophied from lack of use. CCSVI has so many negative feedback loops: because its hard to walk, you minimize walking, that in turn causes leg muscles to weaken, making walking even harder.

My upper body strength is not bad for a 63 year old man; it's walking that is my main limitation.

I notice that the severity of my symptoms is definitely related to how hot the weather is; I am much better on cooler days.

I really need to lose weight but that is difficult because the CCSVI induced whole body inflammation seems to cause a craving for carbohydrates. Again, another vicious circle.

Mentally, my mind is much clearer post-procedure.

I am absolutely convinced that the CCSVI procedure was a life-saver for me; unfortunately the problems in the bilateral sigmoid sinus could not be addressed. I still have reflux arising from those regions, and the collateral veins are still carrying the venous blood around those sites.

On a positive note, the four treated IJV areas of stenosis have maintained their openings, and there have been no clotting problems. I still take 81mg of aspirin daily.

I feel that after three separate procedures, done by three different IR's, I have pushed the boundaries of current CCSVI practice and now must simply await any further advances in treatment.

Donnchadh

_________________
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!