CCSVI- going to Poland...after care in Canada

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

CCSVI- going to Poland...after care in Canada

Postby AllyCanada » Wed Dec 16, 2009 8:38 am

Hi All,

I am seeking some information or to gather all the patients that are on the list in Poland for the liberation procedure. We are going to need after care once back in our own country. Does anyone have someone set up for after care at this point. I realize that we will need to see a vascular doctor and because we are Canadians will need some sort of a referral from our GP's. I no matter what have to travel far as I live 8 hours north of Winnipeg in Flin Flin, Manitoba, I simply do not want to have to leave the country for a follow up. Any suggestions? concerns? As Canadians we have the 5 Health Care Act rights which are: public administration,comprehensiveness, universality, portability, and accessibility. Based on these rights we are intitled to have care in our own country if deemed nessecary. We can not get the procedure done here in Canada as there is no data deeming it nessecary but after we have the MRV/doppler and operation we ARE NEEDING after care as now we have had the surgey.

I would rather travel to lets say B.C. to see a doctor perhaps that will see more than one of us.

I have never psoted before so if there are any mistakes sorry

Alison
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Postby ComfortablyNumb » Thu Dec 17, 2009 6:02 am

I am waiting to get a date for the procedure in Poland and have told my G.P. of my intentions. What I am not clear on is what follow up we will need once we are back home. My G.P. is supporting my decision but needs to know what drugs, if any, will be needed and what type of post precedure testing will be needed. This is all new to our doctors in Canada so they need all the information for post care and this should be provided by the doctors doing the procedure.
Can anyone tell us what follow up care ( tests, medicines) will be required after the procedure is done?

Steve :roll:
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Postby ErikaSlovakia » Thu Dec 17, 2009 6:17 am

ComfortablyNumb wrote:I am waiting to get a date for the procedure in Poland and have told my G.P. of my intentions. What I am not clear on is what follow up we will need once we are back home. My G.P. is supporting my decision but needs to know what drugs, if any, will be needed and what type of post precedure testing will be needed. This is all new to our doctors in Canada so they need all the information for post care and this should be provided by the doctors doing the procedure.
Can anyone tell us what follow up care ( tests, medicines) will be required after the procedure is done?

Steve :roll:

Hi Steve,
as I inject Clexane I do not need any tests. I only asked my GP for 100 mg Aspirin prescription - I actually do not need any prescription but I wanted to inform her - I saved couple of Euro as I did not have to pay for it.
I think it would be good if somebody was able to do the Doppler - USG of your veins - that is the way how they check the bloodflow after the procedure. I am sure Dr. Simka will give you or other patients some good tips.
I brought all 60 Clexane injections from Poland, apart from that I take 150 mg of Aspirin everyday.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby ComfortablyNumb » Thu Dec 17, 2009 6:43 am

Thanks for the reply Erika and all your other informative posts. We newbies have all gained so much knowledge fromyour, and other pioneers posts.

How often do you have to inject Clexane and for how long will you have to do this?

I have had a Doppler done which confirmed CCSVI. I have 1/4 the flow in my left jugular and vetebral veins. I am having a hard time finding where I might get the venography locally so I will wait until Poland for that scan.

Thanks
Steve
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Postby ErikaSlovakia » Thu Dec 17, 2009 7:02 am

ComfortablyNumb wrote:How often do you have to inject Clexane and for how long will you have to do this?

I have had a Doppler done which confirmed CCSVI. I have 1/4 the flow in my left jugular and vetebral veins. I am having a hard time finding where I might get the venography locally so I will wait until Poland for that scan.

Thanks
Steve

I have to inject 40 mg of Clexane every day - 60 days after the procedure. I still have 16 injections. I do not feel any problems.
When I first saw the information that I have to do it I was like 8O .
At the end it is not a problem. I just must do it very, very slowly not to create more bruises.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby AllyCanada » Thu Dec 17, 2009 7:28 am

Hi,

I gave a little chuckle to the name "ComfortablyNumb". Yes Erika is right we will have to take blood thinners. I have read on other posts that a blood test to check your levels is required..not sure if this is for everyone. I also have read that a 2-3 month check for blood flow is required.

ComfortablyNumb where did you get your ultrasound/scan done? Maybe we could go to the same place for after care?
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Postby ErikaSlovakia » Thu Dec 17, 2009 7:58 am

AllyCanada wrote:Hi,

I gave a little chuckle to the name "ComfortablyNumb". Yes Erika is right we will have to take blood thinners. I have read on other posts that a blood test to check your levels is required..not sure if this is for everyone. I also have read that a 2-3 month check for blood flow is required.

Just do not forget there is a differance between Coumadin - oral and Clexane - injections.
With Coumadin you must go to check your INR. With Clexane you do not have to.
There are more threads here regarding Clexane and Coumadin. You should check it.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby ComfortablyNumb » Thu Dec 17, 2009 8:38 am

Thanks Erika.
I am not concerned about the needles. I have been on the ABC drugs 9 years now so needles are nothing new. Were you given a choice between Coumadin and Clexane?

Ally,
I am in south central Ontario andhad my test done in a local hospital here. I am just an hour away from Torontoso I figured I could get any tests I needed there.

Cheers :D
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Postby ErikaSlovakia » Thu Dec 17, 2009 9:51 am

ComfortablyNumb wrote:Thanks Erika.
I am not concerned about the needles. I have been on the ABC drugs 9 years now so needles are nothing new. Were you given a choice between Coumadin and Clexane?

Ally,
I am in south central Ontario andhad my test done in a local hospital here. I am just an hour away from Torontoso I figured I could get any tests I needed there.

Cheers :D

Not really but Dr. Simka has explained me very well advantages of Clexane. E.g. it does not have any side effects. Moreover Clexane is not expensive here in Europe. I have never tried Coumadin but I am glad I have Clexane. I am also glad I do not have to explain any doctor in my little town why I take bloodthinners and that I need to check my INR. Now I do not need to meet any doctor actually. Maybe you will have the choice as you can get Coumadin in Canada.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby ComfortablyNumb » Thu Dec 17, 2009 10:14 am

No Doctors! Then Clexane sounds like the right choice to me. :lol:

Were you on any of the ABC Meds for your RRMS prior to the procedure, and if so did you stop them after?

Steve
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Postby ErikaSlovakia » Thu Dec 17, 2009 11:07 am

ComfortablyNumb wrote:No Doctors! Then Clexane sounds like the right choice to me. :lol:

Were you on any of the ABC Meds for your RRMS prior to the procedure, and if so did you stop them after?

Steve

I was / am on LDN only. I started last November. I had to stop 72 hours before the procedure. As I was not on any painkillers like morfium and I really did not have any problems at all except for some bruises I started my LDN 3 days after my procedure.
I was once taking oral cortison - very small dose but my attack got much worse, I was swallen, had terrible stomachache - I really wanted to dye at that time. I stoped with the pills after 16 days and started to feel better.
I had I think 4 times IV Cortison in hospital 5 days - 4500 mg. First I felt worse but after couple of weeks better. So I am not even sure it helped. Lucky me I did not have such strong side effects as from the oral one.
I plan to start with EGCG (Teavigo) in 10 days.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby vendredi5h » Thu Dec 17, 2009 4:31 pm

ComfortablyNumb wrote:Thanks Erika.
I am not concerned about the needles. I have been on the ABC drugs 9 years now so needles are nothing new. Were you given a choice between Coumadin and Clexane?

ComfortablyNumb, as a blood-thinning drug permanent user, I would recommand to take Clexane (Innohep here in Canada) if you're not affraid of needles. No INR testing trouble. I do take coumadin because I don't want to inject every day for years. But I have to strictly keep my green vegetable intake very constant if I want to keep each INR testing a while apart (between 2 and 8 weeks depending of my INR stability). A disadvantage of Innohep is the price: maybe 10$/day, versus 0.30$/day for Coumadin. These prices are before any assurance deduction... and just to get an idea since it's not the same everywhere.

HTH

Yannick
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Postby ComfortablyNumb » Fri Dec 18, 2009 4:06 am

Thanks for all the info folks. I guess there's alot of decisions to be made.

Thank's for making them a little easier.
Steve.
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Postby BT » Thu Dec 31, 2009 11:27 pm

ComfortablyNumb wrote:Thanks Erika.
I am not concerned about the needles. I have been on the ABC drugs 9 years now so needles are nothing new. Were you given a choice between Coumadin and Clexane?

Ally,
I am in south central Ontario andhad my test done in a local hospital here. I am just an hour away from Torontoso I figured I could get any tests I needed there.

Cheers :D


We are also in south central Ontario - if I may ask what hospital did u get the testing done at????
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Disease Modifying Drugs after CCSVI procedure

Postby MarkW » Fri Jan 01, 2010 5:13 am

Prof Zamoni's patients remained on their Disease Modifying Drug after the procedure he performed. There is no published evidence for stopping the drug immediately after the procedure.

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
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