Alot of thrombosis going around lately.............

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

Re: Adjusted Prescription ?

Postby Cece » Sun Mar 20, 2011 11:43 am

MarkW wrote:The patient could need medication pre-procedure; different medication dose post procedure; long term checks and/or medication.

Yes, far as I can tell, since the anticoagulant regimen post-procedure is so up in the air and all doctors are doing different things, in the real world are they actually going to do anything different based on the results? Right now they don't know what the standard should be.
Having tests pre-procedure also gives a baseline for comparison.

I agree with this. It however also implies more follow-up than patients are getting. It's "destenose and adios," isn't it? 8O
Family Elder
Posts: 9300
Joined: Mon Jan 04, 2010 4:00 pm


More Follow Up

Postby MarkW » Sun Mar 20, 2011 12:18 pm

Yes Cece more follow up will be needed for some patients. I am not concerned that there is no standard regime as there is no standard MS patient !

You would be surprised at the difference in approach between doctors in giving drug treatment for the same disease in similar patients. Cynics say its all about big pharma and the drugs rep, too simplistic by far.

My objective is to ensure a medical doctor is involved in patient care, not just the IR/surgeon important as they are.

Mark Walker - Oxfordshire, England. Retired Pharmacist. 16 years of study about MS.
CCSVI Comments:
User avatar
Family Elder
Posts: 1167
Joined: Thu Oct 19, 2006 3:00 pm
Location: Oxfordshire, England

Postby Liberation » Sun Mar 20, 2011 1:29 pm

LR1234 wrote:I believe most of these clots are probably not due to clotting issues but to damage to the vessels. I have no clotting disorders and I have a totally clotted jugular (actually rather than clotted its now full of scar tissue)

I think just because you have no clotting disorder it does not mean you will not clot. (Even with blood thinners)

Did xou get stent? Where did you have the procedure done?
User avatar
Family Elder
Posts: 339
Joined: Fri Jan 07, 2011 4:00 pm

Postby Liberation » Sun Mar 20, 2011 2:46 pm

No stent, very aggressive ballooning....Bulgaria. (Biggest regret of my life at the moment as I feel so rotten) Hoping to feel better again soon.

I really hope things will get better for you. I am also getting upset about the lack of care after the procedure. We are paying way too much for something which is in a trial. I was told by an IR in East Europe that the real cost of a CCSVI procedure in this region (including Poland) including testing and IR's salary is not more than USD 1,000. He said that everything above that is extra profit and he thinks it is not fair.
How did you find out that your jugular got full of scar and not just an elastic recoil happened? How narrow your jugulat was before the treatment? Did you go back to bulgaria? Do you get any treatment? Would not a scar should heal as a wound does on our body? Did your symptoms continued deteriorating as they did before the operation or got really different? My neurologist told me that any operation cause a stress for our body and it is not good for MS patients if we accept autoimmunity.
User avatar
Family Elder
Posts: 339
Joined: Fri Jan 07, 2011 4:00 pm


Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)


  • Related topics
    Last post

Who is online

Users browsing this forum: No registered users

Contact us | Terms of Service