back to Poland because of restenosis...

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

back to Poland because of restenosis...

Postby alby » Fri Jun 04, 2010 7:02 pm

Has anyone been back to Poland or anywhere else because of restenosis? Were you reballooned or stents were used second time around? Any improvement? I have the feeling that my ballooned jugulars are renarrowing again!!!! :cry: :cry: :cry:
I was in Poland in febtuary and all went good :D :D :D , but now I'm not sure if my jogulars are as open as they should be, with more than 50% chance of narrowing again :( :( , it's hard to know.
User avatar
alby
Family Member
 
Posts: 87
Joined: Wed Dec 30, 2009 4:00 pm

Advertisement

Postby Richardk » Fri Jun 04, 2010 9:05 pm

Hi Alby

Your question is on my mind as well....while my improvements were minimal at best, its hard to tell if there has been restenosis, and I am debating returning to Poland after 6 months for a followup...there is discussion of the issue in Parliamentary committee here, and it may be better to stay put and see what transpires here

Richard
User avatar
Richardk
Family Member
 
Posts: 59
Joined: Mon Dec 07, 2009 4:00 pm
Location: Vancouver BC

Postby Vhoenecke » Fri Jun 04, 2010 9:08 pm

One of my FB friend's wife had restenosis as she was one of the first 20 patients done in Poland. She was good for 3 months then had restenosis. Her husband wanted to check out Bulgaria. There they found way more than the original stenosis and she is doing very well.

Val
User avatar
Vhoenecke
Family Elder
 
Posts: 332
Joined: Sat Dec 12, 2009 4:00 pm
Location: Rosetown, Canada

Postby Cece » Fri Jun 04, 2010 9:31 pm

Vhoenecke, that is really interesting...I wonder how many liberated patients still have some missed stenosis! Glad to hear she is doing well!!
"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
Cece
Family Elder
 
Posts: 9012
Joined: Mon Jan 04, 2010 4:00 pm

Postby alby » Fri Jun 04, 2010 10:03 pm

Vhoenecke wrote:One of my FB friend's wife had restenosis as she was one of the first 20 patients done in Poland. She was good for 3 months then had restenosis. Her husband wanted to check out Bulgaria. There they found way more than the original stenosis and she is doing very well.

Val

i am thinking of doing something about it, as you said maybe bulgaria this time. maybe stentstoo. when i weigh the risk and benefit, it pays to do stents, i think.
User avatar
alby
Family Member
 
Posts: 87
Joined: Wed Dec 30, 2009 4:00 pm

Postby alby » Fri Jun 04, 2010 10:05 pm

Richardk wrote:Hi Alby

Your question is on my mind as well....while my improvements were minimal at best, its hard to tell if there has been restenosis, and I am debating returning to Poland after 6 months for a followup...there is discussion of the issue in Parliamentary committee here, and it may be better to stay put and see what transpires here

Richard

richard, even though canada is moving faster, i don't think i can afford to wait, if i didn't do it to begin with, i don't know where i would have been.
User avatar
alby
Family Member
 
Posts: 87
Joined: Wed Dec 30, 2009 4:00 pm

Postby TMrox » Sat Jun 05, 2010 5:38 am

Hi Alby,

I had the liberation treatment in March 2010 (not in poland). I had a balloon angioplasty and was told of the 50% chance of restenosis that Zamboni found in the jugular veins. So my doc and I agreed the following:

Having a doppler exam one month after the angioplasty (this came back normal)

Having a venography six months after the angioplasty (i have already my appointment for this September).

In case of finding restenosis then to have another balloon angioplasty and have a doppler exam months later. If there is restenosis again, then using the stents.

I've been felling great. So I hope there is no need to have another angioplasty.
User avatar
TMrox
Family Elder
 
Posts: 263
Joined: Tue Jun 01, 2010 3:00 pm

Correct Course of Action

Postby MarkW » Sat Jun 05, 2010 7:44 am

Congratulations TMrox you are following the recommended course of treatment. Prof Zamboni said (14 April) to re-balloon if re-stenosis occurs. The problem for most people is that they do not have a co-operative Dr to do the check ups, you are in a good position.
General point - re-stenosis is determined by Doppler or other approved diagnostic tool, not by patient self diagnosis. Our MS is too variable to allow anyone to 'feel' re-stenosis.
Best wishes,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
User avatar
MarkW
Family Elder
 
Posts: 1149
Joined: Thu Oct 19, 2006 3:00 pm
Location: Oxfordshire, England

Postby TMrox » Sat Jun 05, 2010 4:10 pm

Hi Mark,

We have communicated today on a different matter re brits going abroad for CCSVI testing. I'm the one with Transverse Myelitis and not MS.

I'm confident that my vascular surgeon had suggested the most reasonable plan of action. However, at my own co$t.

Unfurtunately as you know I could not get the much needed neuro and vascular follow up tests in the UK.
User avatar
TMrox
Family Elder
 
Posts: 263
Joined: Tue Jun 01, 2010 3:00 pm


Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service