Should I wait?

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

Should I wait?

Postby SandyK » Fri May 21, 2010 5:26 pm

I am getting my dates squared away for Poland in June/July of this year. My concern is after care and/or restenosis. I won't get health care until July of 2011 and I can't afford to go back to Poland to fix or recheck. This is such a huge decision for me that I am feeling overwhelmed. Getting this procedure has been on my prayer list for so long and now that it's here I am getting cold feet.

I'm getting married in August of this year and I have visions of walking to the minister and Brian without the arm of my daughter or the use of a cane. Is that blinding me from being patient? I am going to explode with anxiety!
Diagnosed 1994, Self EDSS is 6.5
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Postby judipom » Fri May 21, 2010 5:58 pm

Sandy--I have been going through the exact same thing. Congratulate yourself on being a prudent and thoughtful individual! I don't think anyone knows what the right answer is here. Certainly,many people have seen great benefit, some have seen little or no benefit, and a few have had complications and have seen a worsening of symptoms. I too have been holding a vision of myself being able to do things that I can't do. I'm nervous because all my docs will be 6 hours away in DC, never mind in another country. I've contacted a vascular surgeon at Duke Univ. which is close to where I live, he at least in the loop about CCSVI should I come back and have complications. Are there any vascular surgeons closer to home that could serve as back up for you if need be?

I've had MS 13 years and have jumped on different therapies hoping for a cure before (bee sting therapy for one), at this juncture the best I can say is that we just don't know at this point if treating CCSVI is a lasting therapy. I think only time will tell, unfortunately for us, we don't have lots of time to wait.

I think it's wise that you are not going into this naively. While the procedures are considered relatively low risk, they still have risk. Please know that you are not alone in this dilemma. Judi
RRMS Diagnosed 1997
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Postby Donnchadh » Fri May 21, 2010 6:15 pm

First of all, this is an intensely personal decision for you and ultimately yours alone to make. There's the financial dimension (cost, insurance, etc.). Is there anyone local who could treat you?

As someone who underwent the liberation procedure, and unfortunately experienced re-stenosis, that's a real concern. Dr. Zamboni's landmark study indicated that 55% of the treated patients developed re-stenosis by the end of 18 month study. But he doesn't use stents, only venoplasty (balloon procedure).

From what I have read of patients narratives from Poland, they are getting enough practical experience to know when a stent is necessary, so I would personally take them at their word and go for it.

Hope the best for you.

Donnchadh
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Postby Vhoenecke » Sat May 22, 2010 7:42 am

Been liberated, been to Poland and would advise you to go if you have a date. I would like to suggest that you take a prescription for antibiotics incase you get a UTI. Also get a bottle of cranberry pills from the health food store and start taking them before and during your stay to help prevent the infection. It seemed to me those that got catheters got infection. I did not need catheterization because I could walk to the washroom. Hope you are well and just be excited about your trip. Great people are in Poland and they genuinely care about us.

Val
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Postby esta » Sat May 22, 2010 8:54 am

OMG sit and wait - it's not in my vocabulary. i just got engaged too, even as old as i am, what possible reason would stop anyone from stopping the progression of this dreadful disease, i think that alone would make one not hesitate. the financial costs should be so secondary, thinking of a future no matter, is paramount..
Poland is a wonderful experience, (yes i took antibiotics with me and used them), i hoped for stents, got balooning, and if i restenos i would return in a heartbeat...nothing should stop you from envisioning a disease free future!
esta
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Postby Lyon » Sat May 22, 2010 8:58 am

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Last edited by Lyon on Mon Nov 21, 2011 3:57 pm, edited 1 time in total.
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Postby PCakes » Sat May 22, 2010 9:05 am

must be getting harder to be true to your conviction...

Posted: Wed May 12, 2010 1:11 pm Post subject:

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

W00T! He's coming home this afternoon. Stents look good, left side is still weird above the left stent (like it was in November), but the actual stents are great and so is bloodflow. No reflux, jugulars are working. NO NEW LESIONS, no enhancement, no progression --this is huge. Jeff had over 20 lesions at diagnosis 3 years ago--his neuro will compare his new MRI to his old one to see if there is lesion healing (too many for Dr. Dake to compare)

He'll try a no caffeine regimen to see if he can get some headache and whoosh relief (still an issue). Dr. Dake may go in again above that left stent someday in the future and try a roto-rooter routine, but that's for another day.
The good news is, Jeff's got f-l-o-w!
yippee-
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Postby Lyon » Sat May 22, 2010 9:21 am

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Last edited by Lyon on Mon Nov 21, 2011 3:57 pm, edited 1 time in total.
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Postby esta » Sat May 22, 2010 9:25 am

pcakes thx
lyon, i must have read it somewhere...
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Postby PCakes » Sat May 22, 2010 9:35 am

Lyon,

You are truly a train wreck.. and now you have held my attention for too long.. dammit..

Sandy.. profound apologies for stepping on this string.. my post of Cheerleader's quote was truly meant to help. Good luck!
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Postby Cece » Sat May 22, 2010 9:46 am

SandyK, best of luck with your decision...you say you are getting cold feet, I hear that's one of the first things to improve after liberation. :) :)
"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 » Sat May 22, 2010 10:48 am

Lyon wrote:
esta wrote:what possible reason would stop anyone from stopping the progression of this dreadful disease, i think that alone would make one not hesitate.
Just for clarification, there NO evidence that having the operation stops disease progression.


I am SP MS and I experienced rapid improvement until my IJ veins re-stenosis, but I am sure that Lyon will point out that my statement isn't proof.

On the other hand, I actually underwent the liberation procedure and he hasn't so I probably know a hell of a lot more about it then he does.

As soon as my IR gets IRB approval, I'm going back for stents. I will go in a nano second; it's a no brainer.

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Re: Should I wait?

Postby Lyon » Sat May 22, 2010 12:24 pm

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Last edited by Lyon on Mon Nov 21, 2011 3:56 pm, edited 1 time in total.
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Postby SandyK » Sat May 22, 2010 9:26 pm

Update for those that don't know...I'm going for it. I have to take the chance, otherwise I'll always wonder.

I also wanted to say thank you to Lyon. He makes me irritated a lot but I took great comfort in what he said and I felt like he gave me some things to think about. I appreciate it very much.

When I get my confirmed date you'll all hear me scream it!!
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Postby Trish317 » Sat May 22, 2010 9:47 pm

SandyK wrote:Update for those that don't know...I'm going for it. I have to take the chance, otherwise I'll always wonder.

I also wanted to say thank you to Lyon. He makes me irritated a lot but I took great comfort in what he said and I felt like he gave me some things to think about. I appreciate it very much.

When I get my confirmed date you'll all hear me scream it!!


Sending you prayers and strength, Sandy.

Sometimes some of the things that Lyon writes irritate me, too. Not his questioning of CCSVI but the stuff between other members. Of course, it always "takes two to tango". But, for what it's worth, I was very touched by the things he said in his last post.

I haven't been here very long. I joined awhile ago and came back looking for information about CCSVI. My purposes were self-serving. I want something that will help the man I'm in love with.

But it's impossible not to become emotionally involved with everyone who's touched by this insidious disease. Doctors aside for a moment, we're all on the same team. We may look at things differently but we all want the same thing.....health and happiness for ourselves and/or our loved ones.
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