This Is MS Multiple Sclerosis Knowledge & Support Community

Jugular wrote:

Lyon wrote: ...The world is watching and while objectivity is needed, it's nowhere to be found.

We are CCSVI. Resistance is futile.

I ain't no see see esvee aye. I'm a Canadian, and I don't have to see somethin to know it's stupid...

Annbanan.
If you're feeling worse after more than a few days, maybe you can start with your general practioner, and go from there for more testing. I know there's no liberation treatment and follow-up being done in Canada, but if you're having complications, one would think that is something doctors there should be able to address.

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1eye wrote:I ain't no see see esvee aye. I'm a Canadian, and I don't have to see somethin to know it's stupid...

Of course you aren't see see, I am see see!

Sorry Ann. Keep us updated.

patientx wrote: Apparently, if you have the liberation procedure, and feel worse, it's a pyschosomatic effect, from being around those worse off.

Sounds possible. Something like nocebo. But people who have clots and restenosis will tell you what the benefits were. And what they have lost. Coincidence? Placebo? Not on your life.

I know there's no liberation treatment and follow-up being done in Canada, but if you're having complications, one would think that is something doctors there should be able to address.

Wrong. I had follow-up. I just couldn't get it locally because a few who should remain nameless think they have the Capital of this country all sewed up tight but never can. Elections are coming. Local, provincial, and federal. PwCCSVI have votes.

I'm in Canada. I've been told that we can go to a hospital and be seen by a specialist if we have concerns. There are also private testing sites available to be tested to see how your veins are doing.

Have you checked out these avenues? Do you have a gp you can talk to about your concerns? It is not that we're without care here, we just can't access diagnosis or treatment of CCSVI here. Beyond that, I think we have available care if needed, don't we? Did you plan beforehand for aftercare?

Sorry you've had such a bad experience. A very good caution for those early in the MS process that sometimes it's better to wait until doctors have a chance to learn more about what they're doing and we have a better idea of what we're dealing with.

Hi Annbanan,
Some people have had bad reactions to the blood thinners. In effect, their blood was too thin with an excessively high INR. Please contact your doctor to get checked out as soon as you can.

NHE

That's very sad.

From the poll here approx. 10% are not satisfied with the outcome.

So there is much to learn.

RalfD

scorpion wrote:[You assume right away that when someone does worse after treatment it is due to restenoses.

I agree.

scorpion wrote:The other possibilty is that the liberation procedure has no therapeutic value and can, like any surgery, make people feel like crap.

No one ever said it works for all. But I can hardly imagine that it works for no one.

Another possibility would be that altered flow dynamics in your CNS are giving you some serious trouble until your body gets used to a whole new situation. Hopefully it will soon enough.
Even though I feel for you since it wasn't all good for me either right post op I remind you that it s only been a few days. Get some serious rest and give it some serious time before you seek angioplasty again. This procedure harms the inner sheath of the veins even without stents.

Good luck and please stay in touch.

costume, you say this procedure harms the inner sheath of the veins even if you don't get stents. do you know if that harm will eventually correct itself? or is it like scar tissue from other surgeries it can worsen? do you know if there is anything one can do for themselves naturally to help restore the health of the inner sheath?

I 've read about all kinds of stuff regarding this matter. My impression is that apart from some drugs with protective role as far as veins are concerned such as Daflon, it's a matter of luck for now. It comes down to how aggressive the ballooning might have been, the individuals veins and stuff that have nothing to do with nutrition. At least not in the short term.

Leaving stents out and presuming clots have been avoided for a few months I dont see a reason for vein tissue not being able to recover up to a satisfying extend. Vascular surgeons don't either, or else they would not perform angioplasties in general.

Anyway, one thing I can tell you for sure is that Petrov didn't advise me to eat certain foods. He didn't think smoking would change things either.

Hi Ann. I feel and understand what you are going through. I am going through the same. I posted my experience, titled The Possible Negative Outcome Of Treatment. I am so much worse and the pain when I had none before. I had it done twice (in Bulgaria) and tried a third time (in Albany NY) but all 3 veins are completely closed and the doctor could not get the catheter in to balloon. The third attempt was on Oct 12. And it is interesting that with this third try I did not get worse in any way. The doctor did not do any ballooning with the third attempt.
I suspect that perhaps with those of us that get worse it might be due to a reaction of our veins with catheter ballooning. I also suspect your veins must be more closed than originally. And the only way to know for sure is another venogram. Contact the doctor and let him know.
I am feeling a little better now, but it has been 3 months since the last angioplasty. It looks like I have developed more collateral veins.

Sorry to hear that you are not doing as well as you could be. I beleive time needs to sort things out.

One of the things that may be happening as I believ it has happened to me is that with the new flow, your collateral vein growth may be shutting down, which may have been serving you well (mild MS may be characterized by a good but not adequate Collateral structure ??)

As your new flow takes over things I beleive will come around. This seams to be happening to me nicely although I still have some issues that challenge me things did bounce around for the first two or three weeks with some pretty bad episodes.

My recommendation is to stay the course, ensure you stayon the drugs perscribed and give it a soldi 3 months !!

Gordon

Oh Ann, you poor thing. I'm so sorry that this has happened to you and that you're not feeling well. Since everything regarding CCSVI has already been said, I'll offer another perspective -- you might want to explore some other avenues of help alongside waiting/watching for doctor appointments and new developments regarding CCSVI.

People with diagnosed and suspected "MS" have had MRIs ordered to check for lesions, but for many of these people, spinal X-rays, to check for structural problems that cause nerve/vein/artery impingement and/or compression, have not ever been ordered. If you've never had spinal X-rays taken, now would be a good time to ask your doctor to order them.

One avenue to explore regarding neuro symptoms caused by structural spinal problems (as shown on X-ray) is chiropractic medicine. The thread CCSVI and CCVBP was started by Dr. Flanagan (uprightdoc) and is chock full of important information. When you are able, after you've rested, you might want to read through the thread, most especially if you ever have had injury/trauma to your neck/back, such as whiplash, for one example.

You deserve to see if chiro, specifically upper cervical spine adjustments of the Atlas (C1) and Axis (C2) vertebra, might be right for you. It certainly won't hurt to ask Dr. Flanagan for his opinion on your case.

I hope you start feeling better ULTRA-SOON!

Going off of what Gordon said, someone once raised the concern that the ballooning could damage or clot off the entrance to a collateral, and that this could be one way for people to have things worsen post-procedure. It was up in pkilittle's thread, I have wondered since reading that if it could be true.