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

[TFau]

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

We are also in south central Ontario - if I may ask what hospital did u get the testing done at????

Yes, please, comfortablynumb, please tell us where you got your testing done. We're in Oakville, and I thought no one was doing the testing in the GTA.

Thanks,
Theresa

[fiddler]

But Mark, didn't I read somewhere that Dr. Zamboni found no difference in longer term results between people who continued with MS drugs and those that didn't... or did I misinterpret something? It would be something to discuss with my neuro when I see her before I go to Poland, but I'd like to do a little research on it before we meet.
...Ted

[pgm1]

Hi to all

I was wondering if anyone from Canada has gone to Poland and how it went and if there was extra Hospital costs?
And of course anything Else would be great.



Thanks so much
Pam

[ComfortablyNumb]

Hi All,

Sorry for the slow reply, still enjoying the holidays. I had the Doppler Ultrasound in Orangeville hospital, but am told now that they will no longer be doing it there since it still testing and contraversial.

Sorry

Steve

[pgm1]

Hi AllyCanada

I am on Dr.Simka's list for March,no day yet i hope to hear soon.
Do you have a date yet?
I go to my GP tomorrow to see what she has to say and to talk about after care.

Pam

[AllyCanada]

Hi Pam,

I have no set dat yet, just that I am on the list for April 2010. So hopefully will get a date soon.

[dunkempt]

Yes, some weeks ago I was told probably March for test + procedure in Poland - but no promises!

No promises is fair enough - I’m pretty sure Dr Simka's schedule is tighter and more complicated than mine... especially since I was asking to make a double-booking with a relative who also has MS.

But I’m afraid the wait has already been a test for my well-known, Zen-like composure.

My wife and I were in Krakow and few years ago and thought that the old city was nearly the most pleasant place in Europe. She made me promise I’d spend a day or two there on the way back at the lovely Hotel Saski. Maybe pick her up an amber lamp or something in the market...

But that was when I thought I was only going in and out for testing. Assuming I do get booked in for the procedure as well, my notions for scheduling will likely be re-arranged.

I must say I was still slightly doubtful about this course of action - until I saw the neurologists from my MS clinic explaining to a meeting of their patients why CCSVI is probably not that big a deal and even if it is, everyone should just be cool and wait for, oh, five or six years. Which was *another* test for my famous, Zen-like composure...

Lucky I only saw it online.

(that's at http://www.hsc.mb.ca/msclinic if you're interested)

-d[/url]

[tellit]

I was diagnosed in the early 90s - remiting/relapsing
I just saw my nuerologist for a yearly assessment and asked about the
liberation treatment. He does not recommend it for several reasons.

- There is no supportive research on just what a stent does in a vein opposed to an artery. They cannot definatively predict that a stent will stay where it is inserted. Will it migrate or worse break through the vein? You cannot reverse this process without major surgery.

I have a blood disorder for wich I have to take coumadin everyday with all the side effects and potential bleeding out if I have an injury. And because of MS I am unsteady and clumsly and I always have alot of bruises.

For two of my neurologist's patients who had the liberation treatment this has become a reality because aspirin is not enough to thin the blood adequately One looks like he has been badly beaten with bruises all over, the other is suffering hair loss and brittle nails.

My neurologist said when we have this proceedure done (involving a stent in the vein) = as MS patients we are adding a whole new list of problems to the ones we already have. He said both his patients say the "feel better" but their symptoms and clinical tests remain the same as before they got the treatment. He also said that even if this stops the symptoms at best case scenario, the damage done prior is not reversable.

His advice to me was to read every piece of clincal postings that Dr. Zamboni has published and not to simply go on the anecdotal evidence. I truly hope this is what it is supposed to be, but if I wasn't already on Coumadin, I would not like to have to be on it for the rest of my life . I don't think they have properly warned people of this side of the liberation proceedure. I really urge people to take a breath and research it.

[thornyrose76]

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

I live in Winnipeg and I've talked to my GP regarding the fact thatg I intend tio get checked and if found to have a problem, get the angio. Basically I was told that I would be on blood thinners forf life, and aspirin too. If I have a problem I guess I'lll go to emergency oir he'll refer me tgio a vascular doctor? I am saving so that I can have a follow up check in Barrie or False Creek. What are your plans?

[Vhoenecke]

Dear Telit,

Glad of your thoughts but why would a neurologist know anything about a vascular condition I think I would want to have my veins opened if they are narrowed. Why don`t you as a vascular guy, you might get a better response. He doesn`t lose money if you get better like your neurologist would. When they finally figured out I had MS I was sent to emergency with stroke-like symptoms(vascular) that tells me that this is a vascular condition. How weird , that neuros never figured that out. i guess they were to busy prescribing DMDs

Val

[tellit]

Dear Telit,

Glad of your thoughts but why would a neurologist know anything about a vascular condition I think I would want to have my veins opened if they are narrowed. Why don`t you as a vascular guy, you might get a better response. He doesn`t lose money if you get better like your neurologist would. When they finally figured out I had MS I was sent to emergency with stroke-like symptoms(vascular) that tells me that this is a vascular condition. How weird , that neuros never figured that out. i guess they were to busy prescribing DMDs

Val

Hi Val
I would defer to a neurologist because MS is a neurological disease and he would track progression of MS or lack of it. My neuro is the head of the department and therefore has the backing of other departments such as vascular and other disciplines. His response is borne of brainstorming with his coleagues in Canada. They are adamant that there is not alot of data to support long term claims. I just hope that this procedure actually works to stop the progression of MS. Zamboni himself has conceded it is not a cure.
Having said that the road to diagnosis for MS to start with is ambigious. They always look for everything else first it seems.
I know if I didn't have to be on Coumadin or similar for life, I would not choose to do so, which is what most have to do when they get the procedure. Just be informed is my cautionary tale here. Good luck

[Mechanicallyinclined]

I had angioplasty on my jugulars and azygos. I was on clexane for 3 days .Plavix for 14 days after that. Aspirin for a year. Perhaps it is different if you have a stent , but that is the extent of my blood thinners.
My procedure was done not done in Poland though.

[tellit]

I had angioplasty on my jugulars and azygos. I was on clexane for 3 days .Plavix for 14 days after that. Aspirin for a year. Perhaps it is different if you have a stent , but that is the extent of my blood thinners.
My procedure was done not done in Poland though.

Hi Mechanicallyinclined

There is a definitive difference between just having the angioplasty or venoplasty as opposed to venous stent. Your treatment is standard procedure with any major operations these days to prevent clots from forming.

As I mentioned before it is not that procedure my neurologist is concerned about. He did say that in both his patients (he did not do the procedure, they both had it done in India) the venoplasty did not work so the surgiccal team automatically inserted stents without waking the patients to ask them if that is what they wanted. They had to make their minds up before the venoplasty if they did not want a stent. They were not really given much information about that posibility. The problem is the research into what a stent does in a vein. They know what one does in arteries which are stronger and a different physiology than a vein. Veins have valves which can be irreparably damaged if a stent migrates to it. Also the stent procedure is not reversible.

[thornyrose76]

Wake them? Am I missing something here?

[Mechanicallyinclined]

I would hope that these people knew that stenting was a possibility before they went into the procedure at this specific place. Most procedures I know about, the patients are awake during the procedure. To stent or not to stent? You should be going into a proedure educated so you know the pros and cons.