bas wrote: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.
Please do. Thanks for the update, sounds good so far. Good luck! The Fraxipine is an anti-clotting agent per my astute google search, fyi for everyone else. Interesting it is indicated for DVT in the legs. Legs, neck, all veins right?