CCSVI in Bulgaria
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sisterofms
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pinksapphire
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did you get ballooned or stented? a friend here got liberated a few weeks back, felt improvements for a few days, then back to the same old.costumenastional wrote:Colapesce, of course i remember honey
I am so glad you are doing better girl... i really hope the best for us all. Keep in touch please, i have a good feeling for you ;) After all, you were totally blocked!
Pmouse keep us in the loop friend. I wish every new day will be better for you.
For me it s weird. I am trying to check on myself all the time and i get dissapointed so i decided to keep on living as i can. I have been noticing very subtle changes but i aint gonna say anything cause i am just not sure about anything.
the pesky blockage that took 3 min of ballooning to open had already shut back down, as verified yesterday by MRV.
i wonder if you're having a similar issue .. in fact how many of the liberations out there haven't taken, but the patients think somehow ccsvi wasn't really their problem after all.
can you get checked while you're under warranty?
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costumenastional
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balloon it was for me. and i dont think that there is restenosis cause some subtle improvements are comingdrbart wrote:did you get ballooned or stented? a friend here got liberated a few weeks back, felt improvements for a few days, then back to the same old.
the pesky blockage that took 3 min of ballooning to open had already shut back down, as verified yesterday by MRV.
i wonder if you're having a similar issue .. in fact how many of the liberations out there haven't taken, but the patients think somehow ccsvi wasn't really their problem after all.
can you get checked while you're under warranty?
i ll let you know when i am positive. anyway, i ll have a doppler in a couple of months to see how is inside there and probably a venography. i have a ccsvi dx now. i ll find a way to do it somehow without traveling abroad ;)no, in california. our little ccsvi-bayarea support, fund-raising and amateur radiology group of folk are trying lots of avenues, including going through [mostly] regular channels.colapesce wrote:It's only been 1 week for me but the improvements are still there. Did your friend go to Bulgaria? If mine close then I'll go back and do it again (she says with no money in pocket
it hasn't been easy, and the attitude of VS and IR vs neuro has been astonishing, although as in most places neuros jealously claim dominion and often manage to gum up the works.
bulgaria, albany ny, san diego, and arizona (assuming we can supply papersss) are all in people's travel plans at the moment. people are anxious to get into dr dake's next study, although nobody wants to be in a control group (we want a study where control vs study means staying on the crappy MS drugs or not).
anyway, back to my friend, the VS involved is very interested and we wonder if he's going to ask to re-balloon just to track how he feels vs when his vein re-constricts. he surely has a stent in his future, but this seems like a good chance to learn something.
this whole business of immediate dramatic improvement (and in what cases to expect it) really needs to be understood. if someone doesn't see immediate dramatic improvement, do they have more serious permanent damage, or did the venography not find all the constrictions?
Hi
I am new to this forum.
First I would like to thank every one for the information.
I read carabboo's post about the cost the cost of diagnosis, I have spoken to the doctor in Dubln who performs the dopple ultrasound and asked if the results would be acceptable in Bulgaria she yes. the cost is 195 Euro
All the best
Whisky
First I would like to thank every one for the information.
I read carabboo's post about the cost the cost of diagnosis, I have spoken to the doctor in Dubln who performs the dopple ultrasound and asked if the results would be acceptable in Bulgaria she yes. the cost is 195 Euro
All the best
Whisky
I am in Bulgaria now. I have just had my operation.
They do a doppeler examinatiojn first. The doppeler is only an indication of stenosis, it will not show everything, and it can also indicate stenosis, when there isn't one.
My doppeler indicated moderate stenosis, in one of the jugulars, and moderate in azygous.
When they did venogram, az was blocked with 90%, that could not be opened by balloon, so I now have one stent. One jugular was 50% blocked, and the other was 90% blocked, both jugulars were done with ballooning.
It isn't the doppeler examination that costs €3000, it is the venogram, that you indeed need to do a proper examination. They charge €2000 for the operation unblocking the stenosis, and they charged me the cost of the stent. €500 for the stent, so a total of €55oo
Anyway I am still very dizzy, but I feel better, legs stronger, not as tiered, more energy, just feeling better, been told I look better as well. I am very happy with the operation and hospital trreatment. Bit of language problems, but all together very happy.
They do a doppeler examinatiojn first. The doppeler is only an indication of stenosis, it will not show everything, and it can also indicate stenosis, when there isn't one.
My doppeler indicated moderate stenosis, in one of the jugulars, and moderate in azygous.
When they did venogram, az was blocked with 90%, that could not be opened by balloon, so I now have one stent. One jugular was 50% blocked, and the other was 90% blocked, both jugulars were done with ballooning.
It isn't the doppeler examination that costs €3000, it is the venogram, that you indeed need to do a proper examination. They charge €2000 for the operation unblocking the stenosis, and they charged me the cost of the stent. €500 for the stent, so a total of €55oo
Anyway I am still very dizzy, but I feel better, legs stronger, not as tiered, more energy, just feeling better, been told I look better as well. I am very happy with the operation and hospital trreatment. Bit of language problems, but all together very happy.
<div>I have lived with ms for 8 years. The last year has been hell, I've gone from shite to even worse every single month, until my liberation in May. </div>
I'm scheduled on June 11. Am I ok to arrive on the day before and leave on the 15th?
Also..does anyone know the easiest airline from JFK in New York City? Least walking between terminals in Europe??
Do they give valium, or something like that before the procedure...I'm really nervous...crazy...right??
Also..does anyone know the easiest airline from JFK in New York City? Least walking between terminals in Europe??
Do they give valium, or something like that before the procedure...I'm really nervous...crazy...right??
Thank you caraboo
If I'm not mistaken its not long now before it is your turn
burg, it is very normal to be nervous. i had the nurs holding my hand, during the procedure, but then she had to work
They used local anasthetic in the joint where they went in, but the gave me som systemic iv pain killer that made me less nervous as well. I don't think that was very long lasting, as they topped up a few times during the op. The procedure was not pain free, but it was not to bad either, quite uncomfortable, but not to bad.
I think you will be all right leaving on the 15th, that is 4 days after procedure, you get discharged after 2 days.
Before procedure, you can't eat or drink for 8 hours. After procedure you have to wait for 20 minutes.
2 hours after procedure you are not allowed to move your hip joint where they went in. They got it taped down, and for 2 hours they put a weight on. You have to stay in bed.
For next 12 hours you can move, but not really leave your bed, as you are on an iv drip, that you can not move with. (maybe this is just if they have used stents, not sure) it is blood thinner, heparin. They disconnect you if you need to use the loo, or if you need to walk a little bit, but you are not allowed off the ward.
They draw blood every so often to check coagulation, and blood values. They seem to offer very good and professional care.
If they use stents you need to stay on blood thinners for 6 months. The meds were not expencive.
Good luck to you
If I'm not mistaken its not long now before it is your turn
burg, it is very normal to be nervous. i had the nurs holding my hand, during the procedure, but then she had to work
They used local anasthetic in the joint where they went in, but the gave me som systemic iv pain killer that made me less nervous as well. I don't think that was very long lasting, as they topped up a few times during the op. The procedure was not pain free, but it was not to bad either, quite uncomfortable, but not to bad.
I think you will be all right leaving on the 15th, that is 4 days after procedure, you get discharged after 2 days.
Before procedure, you can't eat or drink for 8 hours. After procedure you have to wait for 20 minutes.
2 hours after procedure you are not allowed to move your hip joint where they went in. They got it taped down, and for 2 hours they put a weight on. You have to stay in bed.
For next 12 hours you can move, but not really leave your bed, as you are on an iv drip, that you can not move with. (maybe this is just if they have used stents, not sure) it is blood thinner, heparin. They disconnect you if you need to use the loo, or if you need to walk a little bit, but you are not allowed off the ward.
They draw blood every so often to check coagulation, and blood values. They seem to offer very good and professional care.
If they use stents you need to stay on blood thinners for 6 months. The meds were not expencive.
Good luck to you
<div>I have lived with ms for 8 years. The last year has been hell, I've gone from shite to even worse every single month, until my liberation in May. </div>
Sophia, Thank you so much...I see you just had the op...I hope and wish you the best..a quick and easy recovery...most of all, a return to pre MS health.
what is the basic schedule..start to finish..doppler, then venogram, length of proceedure..time completed..
also, am i nuts, but i would prefer stents..I'm afraid that my veins will restenose. I've always had problems with my veins when it came to IV's ..
They are called travelling veins cause they move so easily.
Did you stay there before and after, or a hotel off premises.
Please take care of yourself!! I'm rooting for you!!
what is the basic schedule..start to finish..doppler, then venogram, length of proceedure..time completed..
also, am i nuts, but i would prefer stents..I'm afraid that my veins will restenose. I've always had problems with my veins when it came to IV's ..
They are called travelling veins cause they move so easily.
Did you stay there before and after, or a hotel off premises.
Please take care of yourself!! I'm rooting for you!!