I Had the procedure done...could be a crock or...

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

I Had the procedure done...could be a crock or...

Postby Boopieup » Sat Oct 09, 2010 6:19 am

It's been a while since I've posted on here.
I had the "liberation" procedure done in April to my collapsed right jugular vein.

I went back again in May to get probed again because I got immediately worse. They pulled the plug before starting while I was on the table. I had PVCs happening too frequently apparently. In April, I didn't have any.

Two visits to the cardiologist later I got yet another probing September 1. The doctor said my vein was still open and had not recollapsed.

So now I'm a lot worse than I was before the procedure. If I had known any of this, I would have never agreed to do it in the first place. I had a very strong gut feeling that I should not have even thought about it but did it only to shut my husband up. I even went so far as having a neutral attitude. Truly there is something to be said about just leaving us MSers alone.

So here is my end thought. Either the "liberation" procedure does not work on me (it doesn't work for everyone) or the interventional neuroradiologist who did it has no idea what he's doing or somebody is full of sh*^!

This is the end of the road for me regarding CCSVI and the liberation procedure. I promised Andrew that I'd do it once just so I didn't have to hear about it anymore. Look where that got me. It made his job as a caregiver a lot harder. I believe the whole experience did me more harm than good. Did I mention that I got 4 bladder infections since April? A bladder infection happened every time I got catheterized and one in September showed up on its own.

So yep. I'm even more pissed off than I was before April but now I can't even stand up and be pissed off and am completely bedridden.
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Postby Ruthless67 » Sat Oct 09, 2010 8:53 am

Boopieup,

I'm so very sorry to hear that you are worse since the procedure.

We MS'ers are truly hoping for a miracle from the CCSVI angio procedure and albeit some see little to no improvement, from it, so then they hope, at the very least, to have no more progression.

But to get worse really does suck. I wish there was something constructive I could say to you and your husband.

I was just reading that Rici is finally going in to have his vein and valve fixed post his angio procedure.

We haven't heard from Oliver, Radeck in almost a year since his stent migrated, I hope he is recovering from that and getting stronger with each day and without further complications.

Boopieup, my heart goes out to you as well as my prayers.

I think the science is starting to mount up that there is a vascular issue associated with MS, so now the safest avenues of treatment need to be defined. Lets hope the trials that are starting will produce some more answers and guidelines for treatment.

Sincerely,

Lora
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Postby pklittle » Sat Oct 09, 2010 10:23 am

Boopieup, I am so sorry to hear you are doing worse since treatment. If you haven't already, please cut/paste your experience to the sticky "post here if ccsvi treatment did not help". Some of us are worse(me included) and I don't think anyone has a clue as to why. Results appear to be all over the board.
Good luck to you.
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Postby Cece » Sat Oct 09, 2010 11:26 am

Pklittle is right, the success stories we can find anywhere but these sorts of outcomes pop up and then understandably don't get retold.

I am so sorry to read this. I had read some of your saga here before. I can't help but hope that there was something missed, if the IJV is flowing well, maybe the azygous or May Thurner that wasn't even on the radar before June, but that's me speaking as someone entrenched in CCSVI theory. You sound like you are more than done and have paid a price for pioneering. Again I am so sorry. :(
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Postby Ruthless67 » Sat Oct 09, 2010 9:49 pm

Boopieup,

For what it's worth, I found what fogdweller had to say on another thread interesting and thought of you when I read it.

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Posted: Sun Oct 10, 2010 8:21 am Post subject:

--------------------------------------------------------------------------------

Cece wrote:
I vote for "elastic recoil."

It's a term drsclafani has used, I think it means exactly what you're describing.

I agree too that this is a very different sort of stenosis that arterial plaque build-up.


I suspect one reson definitley is elastic recoil, but we don't know yet. I slo suspect that the trauma that the vessel intima suffers when the balloon stretches it way beond its revious shape may result in "healing" or scaring that closes the vessel. In this way it may be similar to what they are seeing in arterial restenosis, and may even result in a person getting worse than they were before treatment. It is very important to start to get on top of this phenomena, especially if people start to get worse after tretment than they were before.

Maybe a series of balloons of gradually increasing size will be better. Maybe as small a balloon as possible to restore adequate flow to minimize trauma (Dr. Sclafani thinks probablly the biggest balloon possible without rupturing the vessel ... who knows yet?)
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Worse results

Postby Rosegirl » Sun Oct 10, 2010 4:46 am

I am so sorry to hear that you are worse off. While it's small comfort to you, could you tell us whether the doctor who treated you was experienced in treating CCSVI?

I was part of a so-called study at Georgetown. It was ultimately canceled because -- so I've heard '' they weren't getting much in the way of positive results". The IR was extremely experienced. He had even done about 25 CCSVI venograms, but our pre-procedure meeting convinced me that he would be very conservative in his treatment. Since that was in July and Georgetown was the only game in town, I gambled. Luckily, I'm no worse off, but the only change is that my bank account is a lot lighter.

I'm looking to have a second procedure -- with someone local who's done over 100 venograms. Fortunately, I can afford to wait. Others can't.

I don't think we should trash doctors who don't get the results we hope for, but we need to see if there's a pattern that over-confident IRs who thinks veins are easy to deal with but doesn't have CCVSVI training are leaving us worse off.
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Postby erinc14 » Sun Oct 10, 2010 7:15 am

why are you "completely bedridden". i am quadriplegic and and am up everyday .
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Postby 1eye » Sun Oct 10, 2010 8:35 am

I agree that we cannot fault people for trying. Even if they charge a lot; it's expensive for everybody.

But I do think if neigh-sayers would just get out of the way, we could have a much better data-collection effort and understand this whole thing.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby concerned » Sun Oct 10, 2010 9:09 am

1eye wrote:But I do think if neigh-sayers would just get out of the way, we could have a much better data-collection effort and understand this whole thing.


I don't get how this is relevant.
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Re: Worse results

Postby Cece » Sun Oct 10, 2010 11:00 am

Rosegirl wrote:I don't think we should trash doctors who don't get the results we hope for, but we need to see if there's a pattern that over-confident IRs who thinks veins are easy to deal with but doesn't have CCVSVI training are leaving us worse off.

I agree with this, there is such a range among the doctors, from cowboy to cautious.

The cautious docs aren't off the hook completely, they can miss blockages that then continue the reflux and damage and MS progression.

But the cowboys frighten me more.

Boopieup, have all your procedures been done by the same doc?
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Postby ikulo » Sun Oct 10, 2010 11:51 am

Thanks for sharing Boopie. I am also worse off after the procedure, and it will take people like you who share the negative to give everyone the full picture.
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Postby hoodyup » Sun Oct 10, 2010 1:15 pm

I think Boopieup has left the building as far as this thread is concerned. She felt the need to express her feelings about the procedure and its results. She was in much better shape before the procedure than she is now. Is this due to the passage of time in which she would have been progressing anyway? Or is this due to some damage done during the procedure? Or is it due to the stress involved in going to a hospital, getting catheterized and having 4 bladder infections since April? What role does diet and exercise play in post-liberation results? Or..did the IR miss something critical like a valve that was being held open with the catheter thus showing no lack of flow? Are there other veins associated with CCSVI that aren't being addressed? What could explain the very positive week of improvements followed by a screaming headache and then relapse?

There are many questions this early in CCSVI and people like Boopieup have no energy to ponder them. My time is taken up with caretaker duties and work. It was nice to have hope for a while, but in our case I think the ship has sailed. She is not willing to travel or spend the mental energy to think about all the "what ifs." MS has ruined our lives. Why should she spend what few moments of mental clarity that she still has thinking about medical theories which have not panned out for her. So she plays Farmville 24/7 to forget her troubles. I don't blame her. Since September I have been without a compass to guide me. We just live day to day and try to deal with whatever life dishes out (like bladder infections, incontinence, weakness, spasms, constipation, PMS). Not a lot of fun, but the reality for lots of PPMSers and their caretakers. Even so, she is still thankful for the little things like being able to see (when it is still early in the morning) or the occasional "exercise" (for those who don't know -- go back and read her early posts :wink:)

I came to this forum in Sept of last year in search of a little support for my sorry ass. I found a lot more. I found a little refuge of hope based on lots of people's experiences and a lot of interesting science. Even though it has not been of any benefit to us I can say it is a lot more sound than the other crap we were sold on through the years. I think very highly of the people on this board, especially those who were there at the beginning doing the research. And Dr. Sclafani, who is working on being the patron saint of CCSVI. I hope you all understand if Boopieup or I are not as responsive to questions and posts on here as we have been in the past. I wish the best for those just going into this for the first time. Maybe you can benefit from our doctors gaining experience on us (we were our IR's 3rd CCSVI case). Thanks for reading this long post.
Andrew
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Postby SandyK » Mon Oct 11, 2010 12:35 pm

Andrew, I hope your wife has not given up. I don't have any personal experience to offer on the procedure but I am confident the answers will come. I am hanging my hopes on a doctor in Seattle to come through and start the procedures. I hope she will reconsider trying again.
Diagnosed 1994, Self EDSS is 6.5
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