I have been liberated!!!!!!!!!!!!

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

I have been liberated!!!!!!!!!!!!

Postby Donnchadh » Thu Mar 18, 2010 6:28 pm

Arrived back home after a three hour liberation procedure.

Tired; will give more details tomorrow.

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Postby ozarkcanoer » Thu Mar 18, 2010 6:29 pm

Absolutely fantastic Don !!! Tell us all the details when you are able.

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Postby prairiegirl » Thu Mar 18, 2010 7:05 pm

Wow-- more and more postings of completed procedures. All the very best in your recovery!
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Postby walcat » Thu Mar 18, 2010 7:25 pm

Awesome!!! I'm so happy for you!
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Postby costumenastional » Fri Mar 19, 2010 12:30 am

biiiiiiiiiiiiiiiiiiiig smile :) :) :) !!!!!!!!!!!!!!!!
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Postby shye » Fri Mar 19, 2010 1:13 am

Fantastic!! Looking forward to your post-op posts. Rest well.
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Postby bluesky63 » Fri Mar 19, 2010 5:10 am

I'm so happy for you! :-) I hope your recovery is smooth. Looking forward to the details when you feel ready . . . :-)
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Postby Vhoenecke » Fri Mar 19, 2010 6:00 am

Great News! :D
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Postby Donnchadh » Fri Mar 19, 2010 6:35 am

Here's how the liberation procedure happened. I arrived at the hospital at 8:00am, with the actual procedure scheduled at 10:00am. I woke up at 2:00am, I was so anxious and excited I couldn't sleep. I took a Plavik pill for the first time at 6:00am: the doctor's nurse had sent the Px ahead of time. I am going to have to take it for 30 days, as an anti-clotting agent. Just a precaution.

My younger brother drove me there, and accompanied me until I was accepted. The first stop was with the insurance lady. I have Medicare because of my disability status. At this point, I have no idea whether Medicare will cover this procedure or not, so it fits the day's whole feeling of "the old WWII movie where the soldier is posed at the door of the airplane, just before he jumps, hoping that the parachute will indeed open."

Next they took a blood sample (for what wasn't explained), met the head nurse, answered a few basic health questions, went to the bathroom, changed into hospital gowns, and then waited. Was called up, placed on a mobile hospital bed, and was rolled into the operating room. I was then shifted onto the actual operating table. The actual x-ray machine was a half sphere shaped device about 2 feet wide, with the flat side facing me.
There were four large monitor screens where the x-images were displayed. On the side was a large table with all kinds of medical stuff.
The x-ray half-sphere was mounted overhead on a circular arch, which enabled it to be shifted back and forth. So it could get images on the left, right sides or be centered over me. The analgesiast asked me if I was allergic to contrast dye or other drugs. I said no, but I have learned from past experiences I am very sensitive to drugs. Whatever they are supposed to do, they do to me. She was very good; I was sedated just to the point that the procedure was tolerable, but I was fully aware of what was going on. I was very curious about what was going to happen so I didn't want to be buzzed-off.

I was shaved in the groin area, prepped with an "anti-bug" wash, had hand supports added to both sides of the table so they could rest comfortably. It was important to not to move my body so they could get sharp images. The doctor arrived and went over the procedure quickly.

The IR positioned himself on my left hand side; from there he could observe the live x-ray images in front of him from the monitors on the other side of the operating table. He had access to my left hand side groin area to insert the wire.

The first part of the procedure is essentially taking a series of venograms. Took numerous images of my azygous veins, and neck veins. Told not to breathe while they took x-ray images. The overhead lights on the ceiling were turned off and on repeatedly. The staff went back and forth.

The actual procedure started with examining my azygous vein because I was diagnosed as PPMS and Dr. Zamboni claimed 90% of the time, there were problems there. It was a bit of a surprise when the doctor, an interventional radiologist, said that it looked fine-no evidence of anything wrong there. I felt "disappointed" and started to wonder if I had CCSVI after all.

The turning point when it was the internal jugular veins turn. The doctor stated "you have a stenosis" it was an exciting moment in that the CCSVI theory did apply to me. I think the doctor was as excited as I was in that he did locate the problem.

Next was a lot of scurrying around by the staff; the wire was inserted (I don't know at what point because it was painless-the only thing you feel is the hand pressure of the doctor as he pushes or pulls the wire. You do not sense the wire inside yourself or the veins. I was told that the interior of the veins do not have pain sensors). The doctor had a wide range of types (brand names?) and sizes of balloons to select from, which was great because it turned out that a long one was needed.

The balloon procedure felt like when you have your blood pressure taken. It builds up pressure and does cause some discomfort. I must have a relatively high pain tolerance because it didn't brother me to the point of complaining. The doctor warned me before he inflated the balloon, and asked about the pain level. Most of the time, I said 2 or 3.

It turned that there were stenosis high up on both the right and left internal jugular veins. I could feel the balloon pressure behind my ears, especially on the left side. The doctor said it was very constricted.
I couldn't hold my silence anymore and during a lull, I asked the doctor if he said any collateral veins present near the stenosis. He said yes; more about this later.

I lost count of how many times the balloons were inflated and collapsed; first on the my right hand side and then on the left hand side. By the time he was finished on the left side, I was getting tired. I think that in the future as this procedure becomes commonplace (or if a particular patient really doesn't want to know what's going on), the dulling agent could be increased. But I really wanted to know what was going on and wanted to avoid any post-operation sickness. I hadn't eaten anything since lunch (corned beef) the day before so my stomach wasn't bloated.

Finally it was over. The staff shut everything down. I was shifted back to the mobile hospital bed, by having a whole body panel placed beneath me. The IR greeted me and we talked. I was absolutely STUNNED to see a venogram on the monitor for the first time. (During the procedure, I couldn't see the live images because the x-ray machine largely blocked my view.)

The right vulgar vein was extremely narrowed very high up. To the inside, paralleling this vein, was a massive series of collateral veins. They looked like a rat's nest: some were small, other's thicker. Completely irregular and essentially they were my only means of draining blood from my head. Sobering when you realize that they shouldn't be there in the first place. The left side was even worst. I am hoping to get images from the IR later. This result was 100% consistent with my history of head/neck trauma from twenty years ago.

The last step was to be taken to a recovery room for resting flat on my back for four hours. The main concern was that the incision wasn't bleeding. After that, the nurse made me get up and walk up and down the hall to check if everything was OK. My brother had arrived, and I was taken by wheelchair to his car. Back home in about a hour; ate a pizza and stayed in bed. Slept soundly.

Because I didn't stay at the hospital overnight, I wasn't officially admitted so this was considered a "day surgery." Figure that saved me a thousand bucks!

More later. I am hoping that by relating my experiences in detail, the fear will be taken out of undergoing this new procedure. I have no doubt that in the future this will be a routine procedure, and the next step for patients diagnosed with MS.

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Last edited by Donnchadh on Wed Mar 24, 2010 5:38 am, edited 10 times in total.
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I nsurrance info for medicare

Postby jak7ham9 » Fri Mar 19, 2010 6:51 am

Hey Don if you got opertaTion from Sclafani I will tell you how get approval and payment from medicare. You should have gotten precertified but lets see what I can come up with. What state are you in?
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Re: I nsurrance info for medicare

Postby Donnchadh » Fri Mar 19, 2010 2:42 pm

jak7ham9 wrote:Hey Don if you got opertaTion from Sclafani I will tell you how get approval and payment from medicare. You should have gotten precertified but lets see what I can come up with. What state are you in?


No, he didn't perform the procedure. It was done in northern Illinois. I was the second patient to have the CCSVI liberation procedure done by an interventional radiologist here.

I have referred another Illinois MS patient to him in the hopes the IR will take up the case.

I would appreciate any help with dealing with Medicare. I don't know what this will cost me yet.

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Postby ozarkcanoer » Fri Mar 19, 2010 2:47 pm

Don, Thanks for telling us about northern Illinois ! It's not too far from St Louis where I am. It gives me a warm feeling that people are being liberated close to home.

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Postby Cece » Fri Mar 19, 2010 6:37 pm

Amazing!! You went so quick from new on the site to liberated!! I am scheduled May 5th in NY with Dr. Sclafani. It is helpful to be reading these descriptions of the process. So the only things that hurt are the actual incision and then the ballooning? Is it like a headache, with the ballooning?
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby Donnchadh » Fri Mar 19, 2010 7:22 pm

Cece wrote:Amazing!! You went so quick from new on the site to liberated!! I am scheduled May 5th in NY with Dr. Sclafani. It is helpful to be reading these descriptions of the process. So the only things that hurt are the actual incision and then the ballooning? Is it like a headache, with the ballooning?


The actual incision for the wire was painless. My understanding is that the vein is located, a local pain killer is injected before the incision is made. I didn't even notice it. The scar is only about a third of an inch; it's really minimal. (ETA: ladies, the scar location is below the bikini line; no one can see it).

The "pain" of the ballooning is like the squeeze you get in the arm when someone takes your blood pressure. A sensation of pressure building up; it's uncomfortable. If it bothers you, the attending nurse can give you more sedative. Everyone's pain tolerance is different. I wanted to be aware of what was going on, so opted for minimal sedation. It's not like a headache; you feel the balloon only in the place it's inserted. Because my stenosis was located very high up (right behind the ears), it might have been more noticeable because it was in a very tight area between the skull and the skin. If the stenosis was in the neck area, it might not have been quite as painful.

ETA: the actual length of time each balloon expansion lasted I am guessing lasted for about 10 seconds? or so. When the balloon collapsed, the discomfit also faded away. Because I had such extensive network of collateral veins, the IR made repeated balloon expansions in the attempt to collapse them. The idea was to restore normal vein drainage through the jugular veins.

Compared to dealing with MS for twenty years, I would choose liberation again in 0.009 nanoseconds.

Get liberated!

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Last edited by Donnchadh on Tue Mar 23, 2010 7:27 pm, edited 2 times in total.
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Postby WeWillBeatMS » Fri Mar 19, 2010 7:43 pm

Thanks for sharing all of these details with all of us Donnchadh. It does help to hear exactly how it goes down. I have met with an interventional radiologist in South Florida who is interested in doing the procedure for MS patients but wants to be cautious, meanwhile I'm ready to do this thing!
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