This Is MS Multiple Sclerosis Community: Knowledge & Support

thanks bas for letting us know--
all best wishes with the corrective procedure!

My stent was blocked two weeks post op as well. I was put on heavy blood thinners and two weeks later Doppler showed blood flow inside my stented left jugular vein.

thanks for all your input.

i will keep the zinc and other stories in mind but will sort out the vein situation first.

Reyton thx for your story on your blocked stent and the good results.

we are all together in this.

I'm very curious how long the people with blocked stents were on anticoagulants (Plavix, Warfarin , Heparin etc).
Dr. Kostecki prescribed 14 days of 60mg of Clexane once a day for 14 days, 75mg of Plavix once a day for a year and 150 mg ASA once a day for life. I've been reading other posts in the forum in which people state they are on anticoagulants for 4-8 weeks.
I wonder if this is why there are blockages? I know it takes the stent a while (I've heard 1-6 months) to be incorporated into the vein and I assume it is still rough until it has been covered by the endothelium.
This seems like a logical place for a thrombosis to start.

so sorry to hear about this. please keep us informed. We need to understand how this happened and how to find the problem when the stent is only narrowed and not clotted.

were you on anticoagulation?
had you had a doppler surveillance study
where was you stent placed, both which institution and which part of your jugular?
you will no doubt have an attempt at thrombolysis to dissolve the clot, followed by angioplasty of any in-stent stenosis.

please tell us how things go

bas,

My stent is in the lower IRJ and was placed by Dr Ludyga in Poland in Nov 09. It was 3cm long. In April 10, Prof Thompson in Melbourne found difficulty pushing the catheter through the stent and he ballooned it to improve blood flow. A subsequent doppler test revealed a repeat blockage. Prof Thompson then performed a second treatment to again improve blood flow through the stent. The problem he found was not blood clotting but pressure from outside the stent forcing the vein closed. Prof Thompson applied 400lb angioplasty to the stent to open it up - note that 30lb pressure is applied to a car tyre. In the process, he changed the shape of the stent from 3cm long to a shorter 1cm long, stubby, wider and stronger stent to resist outside pressure - he called it 'wedding ring' shape.

Moral of the story - CCSVI treatments are not one-off events and cases will vary enormously. Fine-tuning will be required and each case needs to be looked at on its merits.

Political statement - the neurological study approach to the CCSVI-MS link by dopplers or singular treatments is daft and makes little sense given my experiences.

Phil

The theory of CTNVS/CTOS is based on the idea that muscles are compressing the veins/arteries and causing valve malformations.

Dr Sclafani, if you are still reading this thread please can you look into this theory as maybe CCSVI and CTNVS together can solve the MS puzzle.

Thanks for all the work you are doing, BAS I hope the dr's can sort this out for you asap.

Thansk for sharing your story Phil, How are you doing these days?

L x

400lb ??

After finishing with the 9 days of daily injections, Dr. Simka advised me as follows:
1. No need for blood tests, neither clopidogrel nor aspirin change the results of routine blood clotting tests; such tests are need in the patients on warfarin and similar drugs
2. 8 weeks of clopidogrel (Areplex) is enough, longer recommendations are routine in the patients with underlying vascular pathology (arteriosclerosis, for example) - not your case.....

In summary: clopidogrel + omeprazol - 8 weeks; aspirin - long-term (until a contraindication occurs)

Marian Simka

Thanks to Pauline for her info, but I think I'll follow Kostecki's instructions. as he's doing a research project, changing the medication and dosage might affect his results.

I'm kind of with KPW on this one. I assume he has prescribed this for a reason. He used to work with Simka before taking on the research project, so I'm sure he's aware of Simka and Zamboni's protocols.

Most of us Stanforders (leaving some wiggle room for error there) were on various forms of anti-coagulants until our follow up scans 2 months post-op. On mine you could clearly see the stent surrounded by endothelial lining, so no more anti-c's.

I've wondered a bit when people say they got sent home with no thinning regimen as this seems to be s.o.p. for stents of any variety.

I know the cocktail changed over time but for me it was warfarin/coumadin and plavix for month one then warfarin for month following then follow up scan then aspirin daily.

Just to reiterate what's been discussed on here frequently, the difference between the plavix and warfarin, is that plavix makes your platelets nice and slippery just like aspirin but a much higher factor. Warfarin works on your blod clotting factors in the liver and reduces them that way. Put the two together, you'll have some pretty slick stuff in your veins. I know in Europe and elsewhere they have many different varieties of thinners.

So just to keep in mind that there are two different things at play with these meds, some meds make stuff slippery, some alter your blood chemistry/coagulation/Vitamin K factors at the source.

Mark.

_________________
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

where are you bas?
Hope all is okay--
Please let us know how things went with the attempt to relieve the stent problem--

Ok here we go.

Just a short history rehearsel first: was checked for ccsvi in Katowice late March where both jugular veins turned out to be almost non existent. Zero flow in the far too narrow jugs.

Righthand jug could be opened up but collapsed almost immediately so was stented with a 10 X 1 cm Medtronic stent. Left jug could not be approached from inside so an attempt as made to get in through the outside of my neck. A small cut was made to get acces. Pretty painfull but just bearable. They had to stop this action after 2 hours in the ops theater because of excessive bleeding.

So went home with the advice to return for another attempt in 2 month time. I was prescribed Fraxiparine 0,6 ml once a day for 7 days, Clopidogrel 0,075 daily for a year and life long Aspirin.

Positive experiences were the "usual" improved blood flow in hands and feet, no more blue toes. Legs much less spastic and much less pain from the "MS hug" which was a big releave.

A while later it turned out that a hospital nearer my home was starting ccsvi treatment so I decided to see if they might be able to open the left jug which seemed more attractive then another journey to Poland.

By the time I had my appoiment there my spasm and pain were back just as my cold hands etc. Dr Roel Beelen quickly established that the stent in my right jug had no flow at all. It was just filled with clotted blood......

I am now happy to report that 2 days ago the stent was succesfully opened up. It turned out to be quite a job which needed more time and tools then estimated. The loosened debri was sucked away on the spot.

After the stent was opened up and the flow restored he had a succesfull go at my left jugular. Now have a flow of 200 ( 200 what ? ) on both sides.

There wil be a close follow up as he will see me by the end of the month. Medication for the time being: Fraxiparine 6 ml twice a day.

I will keep you posted.

And did the improvements came back?

Thank you for sharing