CaptBoo - Round 2

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

CaptBoo - Round 2

Postby CaptBoo » Tue Sep 04, 2012 3:23 pm

Just spent an hour typing up a full report. Hit the wrong button and now it's gone. Poof

Symptoms started getting worse starting late last summer. Fatigue was off-the-charts. Everything else going downhill fast. Got a re-do with Dr. Arata last week. Why Arata? IVUS. MRV. Experience. He found clear azygous, stuck valves on both jugs.

Result more energy, maybe a little better balance, broke a very healthy sweat today for the first time in a very long time. No complications from the procedure. On a blood thinner for a few months.

Maybe I try to write it all up again, probably not. But I'll answer any questions you may have about the procedure, the logistics, Synergy, insurance, Arata, etc.

Boo
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Re: CaptBoo - Round 2

Postby Cece » Wed Sep 05, 2012 7:26 am

That's great news, CaptBoo. And it's good to hear from you again! What did you have treated previously? I'm wondering if the azygous was treated and is holding up, or if that never needed treating. What do you think about the MRV, did it show the jugular stenoses accurately? I had an MRV done before my procedure and I would love to get a follow-up MRV done but I would not so much love paying for it. Does Dr. Arata use IVUS on both jugulars and the azygous no matter what, or is it only used if he is unsure about the diagnosis using flouroscopy?
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Re: CaptBoo - Round 2

Postby CaptBoo » Wed Sep 05, 2012 9:38 am

Hi Cece, been lurking but no news is no news.

Two years ago you remember I was Dr. Sullivan's first CCSVI. He said I had 40% stenosis in two places in my azygous, 40% in my left jug and 60% in my right. He ballooned all three. Improvements lasted almost a year. After an extremely stressful event last summer, it all went away and the elevator went down fast. I still cannot reconcile CCSVI improvements being affected by stress. My MS is progressive, so I'm not subject to relapses per se, but this hit me quick. How does stress cause webs on the valves of the jugulars?

I have not seen the MRV. Arata said he looked at it and sent it off to Dr. Haake for analysis. I will get a report in a few weeks. I don't know about you, but with the fog of travel, pre-procedure stress and post-procedure hangover, I don't remember what all Dr. Arata said in our 2 plus hours of talks. I'm sure it all was discussed, but... I have a telephone consult with him on Friday, and I'll bring it all up. Same story goes with the IVUS.

He did show me the venograms of all three (Dr. Sullivan did not and when I requested them, they said the computer that has them was sick with a virus.). The azygous looked big and healthy. He showed me that the blood below the valves was eddying and the valves were stuck in a mostly closed position (He offered no percentage). The after shots showed big and healthy jugs. I don't remember Dr. Sullivan mentioning valves. Dr. Arata said webbing was the cause of the malfunction and with the opening of the webbing he very seldom sees a reoccurrence of the problem. (He doesn't use the term stenosis or restenosis on most cases because he thinks most of the problems are with the valves and not an actual narrowing of the veins.)

As you may remember, I crushed my neck in 1988 and had C-4,5,6 fused. My first hint of a neurological problem occurred 5 years later. It has long been my contention that either the initial trauma or the subsequent surgery is to blame for my issues. I particularly wanted the MRV and IVUS because they may show something that has been so far been illusive. I asked Arata to be very mindful of this as he looked at the MRV and IVUS images. He said he saw no evidence supporting my theory. Maybe Haake will see something different.

I have been very interested lately in CSF flow. Besides the threads about it here, there was a Wall Street Journal article last week about "normal pressure hydrocephalus" and Alzheimer's. I am quite sure in my own feeble mind that my electrical problem is caused by a plumbing problem, either blood or CSF or both. I was told by the MRV tech that Haake can measure CSF flow.

Dr. Arata's new focus is on the Vagus nerve. It doesn't change the procedure, but he notices (and he has done a bunch) the CCSVI procedure improvements have to do with the autonomic functions controlled by the vagus, with is adjacent to the jugular. There is a video of a talk on that available on YouTube, just search for Dr. Arata

From what I've read, it seems most of your improvements are holding(?)
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Re: CaptBoo - Round 2

Postby Cece » Wed Sep 05, 2012 1:51 pm

I've read some of Dr. Arata's thoughts on dysautonomia. I also had improvement in sweating ability after the procedure, which is autonomic nervous system. Hard to know if it is neurological or caused by the vagus nerve being impinged upon as Dr. Arata suggests. Either way it is improved.

Yes, my improvements are holding! Sometimes they fluctuate and I get scared. But my energy is improved, my thinking is improved, my health is improved. At the end of the day yesterday, I stopped to realize how much more I'd done in a day than I could've done previously. There's no comparison.

How does stress affect CCSVI? Two thoughts would be that 1) it caused veins to constrict although I don't know how that would directly lead to restenosis; or 2) the restenosis had been happening gradually but the stress led to the MS worsening and that led to the restenosis being discovered.

Sorry to hear that there'd be any stress at all in your life. Smoother sailing ahead...
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Re: CaptBoo - Round 2

Postby CaptBoo » Wed Sep 05, 2012 2:39 pm

Glad you're holding steady Cece.

A note on Synergy. I can't imagine how they could make it easier. Orange County (John Wayne) Airport is just a few minutes drive from the hotel that Synergy provides as part of the package (Fairmont Hotel, very nice). The hotel provides transportation back and forth (a tip for the driver is probably expected). The facility is within an easy walk of the hotel. Typical California - big sidewalks, all handicap accessible for chairs and scooters. Ramps for those of us having trouble lifting the leg over a curb. Or the hotel will provide transportation. Besides the hotel, there are dozens of restaurants within a mile and the hotel will provide transportation. The beach is close and the hotel provides a shuttle.

The hotel is paid by Synergy and is included in their price, which is $8,000 plus $2,000 for MRV. My insurance paid 70% of the procedure and 0% percent of the MRV, so total to me was $4,400 . For airfare I had enough Southwest miles for me and the wife. The hotel gave her a ride to a grocery store so some meals came from there. The total for everything was probably around $4,650 (oh, plus the $100 the third party company charges for booking the hotel!).

This is what they do at Synergy, so the process is quite efficient. Everybody knows why you're there, who you are and what's going to happen next. The only complaint I can come up with is that I was the last case of the day. I was told to arrive at 9:30am. I wasn't taken back until 10:45. They hooked up the IV by about 11 and I had to lay there with a needle in my arm until 1pm before moving into OR. They could have called me, told me they were running behind and I could have stayed at the hotel watching TV or something. It's really just across the street, so it's not like I would have delayed them by getting stuck in traffic. Either way I would have been starving, I'm used to breakfast.
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