AMEDS: WHAT INFO DO WE HAVE ON THEM?

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

AMEDS: WHAT INFO DO WE HAVE ON THEM?

Postby Liber8 » Sun May 09, 2010 5:12 pm

I am probably headed to AMEDS after they start treating. I am looking for honest opinions of them that are based from realiable information people have gotten on them. Like does EUROMEDIC have anything to say of the new clinic, OR have any of the Drs from EUROMEDIC been there to help train them, etc...
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Postby Asher » Mon May 10, 2010 4:51 am

Yeah Liber8, me too heading for EUROMEDIC as soon as they relies the list. To be honest I don't know much, but judging by their meticulous preparations they impress me as being pretty professional. Hope this is not just wishful thinking. Good luck.
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Postby JOJOB » Mon May 10, 2010 4:53 am

Things are moving but very slowly :D
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Postby Asher » Mon May 10, 2010 5:05 am

I prefer they move slow but in the right direction versus fast but misguided.
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Postby Liber8 » Mon May 10, 2010 7:32 pm

well it looks like they are going to open a second AMEDS clinic!! I would still like to know more about training etc...
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Postby Asher » Mon May 10, 2010 11:31 pm

2nd clinic? Where is this coming from?
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Postby Asher » Mon May 10, 2010 11:37 pm

Asher wrote:2nd clinic? Where is this coming from?


Yeah, I read it in the other AMEDS thread
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New Clinics - my perspective

Postby MarkW » Tue May 11, 2010 1:55 am

Hello All,
Where are we with CCSVI ?? Let's say that over 2 million people have MS around the world. This means at least one million will have CCSVI and will need de-stenosis. I trust that everyone agrees that less than 1000 have been treated so far. Doing the math(s), this says less than 1 in 1000 have been treated so far. The percentage says less than 0.1 percent of pwMS have been treated.
When agreeing to treatment for CCSVI everyone should appreciate they are in the position of an 'early adoptor'. (The chatroom calls them pioneers but that is not the usual business/scientific term). Assessing this risk is a personal decision. Are you a risk taker ? Do you always upgrade to the latest version of software ? Are you on Windows 7, or like, me still with XP ? To test and treat all pwMS will need many clinics. Its your choice to wait for an appointment in an experienced clinic or go to a new clinic much earlier (a year difference ??).
Hope this helps you to think about risk - there are no guarantees. Some people will not become more disabled if they wait, most pwMS will decline.
It is up to you !!
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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Re: New Clinics - my perspective

Postby frodo » Tue May 11, 2010 3:14 am

MarkW wrote:Are you a risk taker ? Do you always upgrade to the latest version of software ? Are you on Windows 7, or like, me still with XP ? To test and treat all pwMS will need many clinics. Its your choice to wait for an appointment in an experienced clinic or go to a new clinic much earlier (a year difference ??).


I thought the lastest version of software was the linux kernel 2.6 series...
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Postby Vhoenecke » Tue May 11, 2010 6:15 am

You are too funny Frodo!

I was in Poland being liberated, my brother travelled with me. After the procedure I said to him that if more women have MS by quite a large percent then why are there so many men here getting treated by a much larger percent than women? His response was that men are much more likely to take risks.

I guess I have that testosterone level that makes me a risk taker. I do have one other thing to note. I do not see angioplasty as being a procedure that is at the pioneer stage, it is just about 40 years old. The medical profession (neuros) and the MS Societies have givent this an unfair name. I have not regrets on going I only wish it would have happened 10 years sooner.

All the best!

Val
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Postby Liber8 » Tue May 11, 2010 6:50 am

I agree, angioplasty is not a risky procedure. Its done numerous times daily in the states. This next statement is only my opinion on myself, not others. For me it is obviously more risky to wait a year, or two, for treatment than to go to a newer clinic and have angioplasty performed. I am degrading slowly but surely. I trip more frequently, minor choking episodes, balance getting worse, etc... All of those lead to possible accidents in every day activities. Having a little Angioplasty sounds like a good option for me.

And just about any IR should not have an issue with performing Angio. It has been stated many times by many people that for an IR this is a relatively simple procedure.
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Postby Vhoenecke » Tue May 11, 2010 7:05 am

An IR does the doppler but vascular surgeon does the angio. I did have concerns out of Bulgaria that a patient was up walking around right after the procedure. In Poland (Euromedic) it was very strict that we lay flat for 5 hours and not move the leg they did the angio on. That patient in Bulgaria suffered BP problems after the procedure having to go back to the hosp many times was it linked to the getting up probably not but still I didn't like the sounds of that. I was scheduled to go to Bulgaria but got a cancellation to Poland and I am glad, was the 290th patient rather than the 3rd.

Val
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Postby Liber8 » Tue May 11, 2010 7:19 am

I am glad for you too :) With AMEDS I am more concerned on them finding it than their ability to treat it. Well, I do ? their experience they have with Stents. That is on my list of ? before I make the appt.They also say you have to lay still for 5-6 hours. The IR I spoke with here in MN does angios and puts stents in veins. He works at a vein clinic. He is not into the CCSVI thing but was good to talk to and wants me to update him as I move along after I get treated. He did look into it and I had a Transcranial done by one of his techs. NEG result, but I expected that. It was the first and only they had done. They called and spoke with Georgetown before doing it. So he did give it the Old College Try. Just to be clear HE DID SAY HE WOULD NOT BE WILLING TO TREAT CCSVI.
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Postby Asher » Sun May 16, 2010 11:19 am

Just got a mail from AMEDS:

Hello,
Thank you for registering with AMEDS Centrum.
If you received this message, it means that you have successfully registered with us.
On May 10th we have started the process of assigning dates for CCSVI examinations and treatments.
Each day we are contacting patients who registered with us, verify their contact information, collect additional data, assign dates for appointments.
Since the process is taking longer than initially expected and the number of registered patients is high, it can take a few days, maybe a week or so, before we can reach you.
Also, from collected information, we can already conclude that the maximum waiting list for some patients, who contacted us recently, can at this stage exceed four months.
This is why we decided to already initiate efforts aiming at starting the second clinic in August-September this year, so we can considerably shorten the waiting list.
In the meantime, we would like to apologize for any delay in contacted you and kindly ask you for your patience. We are doing everything we can to speed up the process.
Should you have any questions or concerns, please do not hesitate to contact us.

Best regards,

AMEDS Centrum team.
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