3 Months Post Lib. Proc. In Bulgaria. WAY MORE DISABLED

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

3 Months Post Lib. Proc. In Bulgaria. WAY MORE DISABLED

Postby Chris1967 » Thu Jul 29, 2010 1:50 pm

I am obligated to share this. Fact: I am so much more disabled since this operation the difference is unreal and very miserable. I am extremeley depressed. Way less function in hands, feet, shoulders ache, everything aches...type even less now. I do not come on here any more, it is very very depressing. My arms legs, fingers...everything is dramatically worse

You better be prepared for this possibility if you are going anywhere in the hopes of helping yourself. This had to have something to do with my rapid demise

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Postby Trine » Thu Jul 29, 2010 1:56 pm

Did you have any improvement initially or was it downhill from the start? Have you had a check up of your veins to see if maybe you've re-stenosed? Maybe they didn't check something and missed your problem?

I'm so sorry to hear your situation and hope you get some real answers soon.
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Postby TFau » Thu Jul 29, 2010 1:57 pm

I'm so sorry to hear that. Thank you for posting and letting us know.
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Postby shye » Thu Jul 29, 2010 1:59 pm

so very sorry to hear this Chris-
sending much light....maybe they missed something? Can you get checked somewhere else?
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Postby Lyon » Thu Jul 29, 2010 2:01 pm

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Postby BooBear » Thu Jul 29, 2010 2:03 pm

I am sorry to hear that, too, Chris. And the word "sorry" seems to offer such little comfort.

I, too, would encourage you to get checked somewhere else. It seems counterintuitive that allowing proper blood flow would make you worse on its own...maybe your DMDs (if you are on them) are interacting with any blood thinners you are on??

Again, I am so sorry that you are going through this. I think I speak for everyone here when I say that I wish it was different for you, but I thank you for sharing your story because it is important.
Three veins angioplastied.  One renewed life.  
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Postby selkie » Thu Jul 29, 2010 2:19 pm

Where did you get treated, Chris? Sorry if I missed that in another post.

How awful - they must have missed something it's such a new procedure. Can you get checked somewhere close to home? I'm so sorry - wish there was more to offer. Hope you can find help somewhere...

And please don't feel you shouldn't be honest about your experience. We all need to hear the truth about what can happen, good and bad. We're all looking for the truth, not just to get well.

best, selkie
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Postby jimmylegs » Thu Jul 29, 2010 2:36 pm

chris that is really crap news. please do get some local follow up if are not already taken care of.

if you have never tried nutritional therapy and become interested enough to have a go at this from another angle, just PM me.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Postby cheerleader » Thu Jul 29, 2010 2:53 pm

I'm so sorry. I hope you can be seen by medical professionals in your area. LR gives great advice.

Here's a thread you started back in January regarding going to Poland. I know this doesn't help you, but I've really been trying to make sure patients have follow-up care and that they stay home for treatment...here's what I said back in January---

I know I sound like a broken record (that reference gives away my antiquity), but we need to find local interventional radiologists and vascular surgeons in our own home towns. This is the only way. Bring the research to your local universities. Book conferences with IR doctors, e-mail as many IRs as you can. There will be more research coming out in the next month, which will help. wishing you the best, Chris, truly. I'm sorry.

to all reading this thread. Please , stay at home. Get treated by doctors that can follow you, monitor your INR/PT time, keep an eye on you.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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Postby Frank » Thu Jul 29, 2010 3:11 pm

Dear Chris,

I'm very sorry to hear about your exacerbation.

I really dont mean to sound anyway cynical, but a noteworthy (and on the long term maybe even positive) point might be that your (before liberation) established MS symptoms got worse form the angioplasty treatment.

So it seems as if blood flow is related to your established MS symptoms.
My point then would be that while something went seriously wrong with the surgery it would sound reasonable to me that with a proper correction of blood flow you might be able to reverse the exacerbation (after liberation) and maybe even have a positive influence on the (before liberation) established MS symptoms.

All the best!
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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Postby prairiegirl » Thu Jul 29, 2010 4:07 pm

I feel so sorry for what you are going through. Hopefully, there will be some answers for you in the near future. Thanks for posting this-- and good luck to you. Hang in there!
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Postby dania » Thu Jul 29, 2010 5:05 pm

Chris I can definetly empathize with you. I too had the procedure in Bulgaria June 23. Had some immediate improvements. Nothing earth shattering like getting out of my wheelchair but enough to improve my quality if life, such as spasticity gone above the waist and a reduction of 50% below the waist. Vision was now HD with vibrant colours. Able lift both arms straight above my head. Brain fog gone. Tinnitus gone. Core body strength and arms and fingers stronger. But after 1 week it all disappeared and my condition got worse than ever. I returned to Bulgaria 3 weeks after the first procedure. They discovered that the stent had blood clots and that vein had stenosed beyond the stent. The other 2 veins were now 99% closed. Worse than the original stenosis of 70% and 80%. Had the second procedure July 14. And nothing happened. The disappointment was overwhelming. I was so much worse than before I had started this whole process.
It has now been 15 days since the last procedure and I see some improvements. My vision is fantastic again. Brain fog gone. Tinnitus gone. But the things I would like to see change such as the muscle spasms that cover about 90% of my body all the time are still there. I am still weaker than I was before both procedures. I hope these will improve with time.
Maybe your veins did what mine did and closed up more. I read this has happened to others. The only way to find out is unfortunately to go back and get it checked out. Zamboni did say 50% restenosed but it is now becoming evident that the restenosis could be worse than the original.
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Postby cheerleader » Thu Jul 29, 2010 5:13 pm

is there are blood thinning regimen in Bulgaria? Coumadin, warfarin, heparin? What are they giving patients after to keep INR in range and stop clotting? The Stanford group was on plavix, aspirin and coumadin...and had to be monitored for pro thrombin time once home.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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Postby hannakat » Thu Jul 29, 2010 5:21 pm

Thank you so much for posting Chris...(also dania)... It's important that we remember the risks involved. I've heard the percentages of how many improve or don't improve but have not heard what the percentage of worsening.

I do hope you are able to be re-evaluated. It sound like that is part of the puzzle. Wishing you relief from this.....
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Postby Cece » Thu Jul 29, 2010 5:37 pm

LR1234 had mentioned heparin. She thought maybe between the night nurses and day nurses they mixed up and didn't give her the heparin, if I recall correctly. This was Bulgaria, also if I recall correctly.... ;)

Best of luck chris, if it is a thrombosis that should be evaluated, take care....
"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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