Re: CCSVI

[Guest guest]

Alison,

Are you still planning to do CCSVI. I am on the fence about it still, as for the

issues you mentioned. My particular fears are continual restenosis (having to go

back every couple months for treatments and eventually stents and possibly

worsening of the blockages) as well as if they use the gadolinium in the

Venogram (MRV), as I have sworn off foreign toxins such as gadolinium. Just

curious if you still want to get it done, as you seem to be a good researcher?

>

> The following is copied directly from her (Marie ) Facebook/Blog post.

Vascular doctors also have a huge task inside their own field independent of the

immune system question: How does a vascular doctor treat the issues he sees and

how does he know he got complete treatment? If the stenosis appears better on

venogram in the operating room, has this changed the blood flow in the deep

veins of the brain or just improved the blood flow locally where the stenosis

used to be? Most doctors providing angioplasty have no way of knowing anything

about the brain's blood flow even though they can be sure their repair has

opened up the stenosed area. There are technical questions too: Does the

interventional radiologist use high pressure balloons? What about large diameter

balloons? What about the degree of blockage that should be treated; does th IR

only treat stenoses when they are blocking greater than 50-70% of the vein

diameter? Are there some stenoses OK to ignore? And what about re-stenosis? Are

there areas that have pressure from outside the vein, like muscles or other

tissue that rebound and pinch the area down again soon after a first treatment?

Do such areas need stents? Or maybe restenosis merely means that the original

stenosis was not sufficiently treated and the problem regenerated? And is it

possible some kinds of stenosis need open surgery and resection of the damaged

area? In some ways doctors start over with a need to build a new experience base

when they start treating CCSVI. Siskin MD who was one of the earliest

physicians to treat CCSVI and now has hundreds of treatments under his belt says

that they initially under treated people relative to what they do now. He says

CCSVI " is a whole different animal " . Over time standards of practice will be

established and reliability of treatment will improve. Even then, sometimes

treatment will be incomplete because it is the nature of surgery and procedures

that sometimes the procedure doesn't go as well as hoped; every human being is

different and some people present a technically difficult challenge for the

surgeon or interventionalist. Also we know from heart angioplasty that sometimes

people just re-stenose too. As an example of CCSVI treatment evolving, my first

treatment in May of 09 revealed no problems in my jugular valves or azygous

though both high jugulars were stented for 90% stenosis. My second treatment

with a different doctor and different equipment revealed aygous stenosis and a

valve problem on the left. A third treatment a mere 7 weeks after the second

(there was a unique problem the second guy couldn't fix) revealed not only

additional azygous stenosis but a partial twist just after the azygous arch (a

special angle on the venogram the third guy used revealed this). There was also

a valve issue on the RIGHT never noted before. It is not that I developed new

problems, it is that as doctors share with one another the ability to detect

these anoamlies is improving over time. As another example, in my book I tell

the story of Dr Campalani, a heart doctor who has MS and was treated by Dr

Zamboni's team in '06. He has had two later treatments by the same team because

his valves have restenosed twice after the original procedure. Even Dr Zamboni

can't assure people of any kind of a permanent repair. At this point in time it

is still true that no one else can provide that kind of assurance to us either,

not any doctor (no matter his experience level) and not the researchers trying

to investigate CCSVI as the cause of MS and explain how these conditions are

related. Our individual bodies provide an additional area for uncertainty

because the venous malformations that present vary from one to another and each

person is unique. When we first started talking about this in Dec of '08, we

thought it would be easy to treat. In fact the first doctors to get involved

thought it would be straightforward too, but it isn't. Unfortunately the concept

of a simple repair is not only not true, but it may be a huge achilles heel for

the model. When someone is treated and doesn't see any impact, is it because

they got a doctor who missed their problem? Is it because this individual needs

a different kind of procedure? We have to understand that things are still being

learned. Thankfully we are on the path towards knowledge and understanding of

this issue. Research is going foward and doctors are stepping up to the plate to

contribute to the knowledge base. My book is still supposed to come out mid

April (www.ccsvibook.com) and it is expected to help. There is even a closed

forum for doctors to share with one another about things they have learned

regarding techniques and approaches that help in diagnosis and treatment of

CCSVI venous malformations. This forum already has several hundred participating

doctors. Those people who are stepping up to be evaluated for CCSVI and

contributing their data to a trial are part of this progress toward

understanding. Thanks to everyone who is participating!

>

> Marie , RN is the author of The Comprehensive CCSVI Reference for

Practitioners and Patients and is available online and at Amazon.com

>

[Guest guest]

Yes. I have financial issues, dependency on others and geographical limitations

or I would have done it by now! I'm working towards that goal. The risks do not

even come close to the certainty that doing nothing will not help! I will not

do another MRI because of the gadolinium but this situaton offers results that

you don't get with an MRI. I would do it if there was no other way! No stents.

>

> Alison,

> Are you still planning to do CCSVI. I am on the fence about it still, as for

the issues you mentioned. My particular fears are continual restenosis (having

to go back every couple months for treatments and eventually stents and possibly

worsening of the blockages) as well as if they use the gadolinium in the

Venogram (MRV), as I have sworn off foreign toxins such as gadolinium. Just

curious if you still want to get it done, as you seem to be a good researcher?

[Guest guest]

No, SSDI and it is funded by the state. I haven't found CCSVI in New Mexico yet

and that's where I have use it. My mom will lend me the money but I want to

earn as much of it as I can first. Also, someone has to take me there and it

won't be easy for them. Az. is where I want to go and it's a long drive from

here. It isn't impossible, just difficult.

>

>

> are you on Medicare? I understand Medicare covers it.

> Arlene

> Re: CCSVI

[Guest guest]

And besides, Medicare will only cover it if a doctor accepts that for payment.

Few do.

> > are you on Medicare? I understand Medicare covers it.

> > Arlene

[Guest guest]

'I think because for myself personally I am fearful of CCSVI and scheduled to

have it next month that I am looking for reasons not to proceed, so I find

them.'

'Hence, I will likely cancel my appt as it seems in my head and heart I am not

ready for it. '

Alan, how can you be this scared? On its own, it will NOT end your life or make

it worse - remember that with all your negativity, stress, fear and ngativity,

you will make your situation get worse very rapidly!

The procedure is a chance to have a 'do-over' and to regain your strength and

drive......and to wake up with a smile and with determination again - or for the

first time.

Get positive and enthused and banish all your negative thoughts and outlooks!!

' When I feel the slightest exta symptom I am ready to stop using the patch.

That is just the way I am wired--a worrier, perhaps contributes/contributed to

my getting MS in the first place.'

So, now that you see your limitations and their link to having ot you to 'MS',

maybe you should remember that your hypochondria-style fears of 'worsening

symptoms' will only lead you down the weak path of negativity and dreary

thoughts and words to a far worse place. You have so much anger in you - harness

that and turn it into drive and passion. Use it to push yourself and to fix this

problem that you recognise yourself with all your fear based thoughts and

attitudes.

Remember that any treatment will struggle to help a body whose mind is set

against being healed - be careful that you haven't decided to be 'sick'. Once

someone gets to that point (where their lives are based on their being unwell

etc), it can be hard to even think of being well or to take the steps to get

well.

I look forward to the day that you are sending constantly positive and strong

messages of 'good news' regarding your treatments and improvements!

I really hope you can push the fear to the back of your mind and move

confidently forward towards wanting to be well regardless of the uncertainties -

just push yourself forward into it and take the leap off the edge!! We'll all be

here waiting for you at the bottom of the cliff with large and welcoming smiles!

'What we do in life, echoes through eternity.'

MARCUS AURELIUS (121 - 180 A.D.)

To: mscured

From: alansamston@...

Date: Fri, 8 Apr 2011 03:40:27 +0000

Subject: CCSVI

Janet,

I'm sorry-I didn't mean to worry you with that article.

I think made an excellent point that article is just one " expert

opinion " and this procedure is very new and there are many expert and non-expert

opinions out there that difffer.....

[Guest guest]

I can understand the fear. It isn't just about the health risk issue, it's

about putting all of your eggs one basket and dropping the basket. If CCSVI

doesn't have the desired effect, what's left? This could leave a hopeless

feeling. But in truth, it isn't the only solution. It is a good one for some

people and a not for others. The fear is finding out that you might not be one

of the people who get any benefit from it. Life is full of risk.

> Alan, how can you be this scared? On its own, it will NOT end your life or

make it worse - remember that with all your negativity, stress, fear and

ngativity, you will make your situation get worse very rapidly!

>

>

>

>

>

>

>

[Guest guest]

I understand the fear too - I got on the table with the same 'fear' that

everyone else has before something new like this. We'd be silly if we didn't

have that fear, but we do have to remember that if we REALLY believe in

something and if we've done all the research and TRULY believe that it makes

sense, then it makes sense to just do it without all the worrying about it or

rehashing the fears over and over, building it up to be some sort of 'boogeyman'

in our heads.

I knew there was something wrong with my veins - call it gut-feeling if you

like, but I too was fearful that my scans wouldn't sow anything.

I chose to go with the Esntial Health Clinic because of a number of things, but

mostly because they were local and just as importantly was the equipment they

were using. They use what Zamboni & his team use - when someone is told that

they don't have any stenosis, I always tell them to go somewhere else where they

REALLY know what they're doing.

There are a lot of people who haven't known what they were doing when testing

people for CCSVI and have wrongly told people that they didn't have it.

Thankully those people have gone elsewhere and have been dxd with the problem!

I believe that all of this takes having some guts and I think that all of we

who've had our files marked with those dreaded letters have to have more

intestinal fortitude than the 'healthy' do.

I love to hear of everyone's successes and progress - I know what it's like to

have what some less knowledgeable see as 'limited' or 'minimal' success with

CCSVI. It's not limited - it just takes hard work. I work out and ride for the

majority of my days now. I'm rebuilding my life as I always knew I'd have to.

CCSVI gives us the chance to work hard to get back what we probably took for

granted beforehand (as do most people anyway). When we go to get the scans, we

should make sure that where we're going is a place that can give us a dx we can

believe in.

That's my advice in regards to what you're saying about fear of not 'having it'.

Most of us do - the EHC's findings thus far have shown over 90% from what I've

seen.

'What we do in life, echoes through eternity.'

MARCUS AURELIUS (121 - 180 A.D.)

To: mscured

From: alpdesigns1@...

Date: Sat, 9 Apr 2011 12:09:26 +0000

Subject: Re: CCSVI

I can understand the fear. It isn't just about the health risk issue, it's about

putting all of your eggs one basket and dropping the basket. If CCSVI doesn't

have the desired effect, what's left? This could leave a hopeless feeling. But

in truth, it isn't the only solution. It is a good one for some people and a not

for others. The fear is finding out that you might not be one of the people who

get any benefit from it. Life is full of risk.

[Guest guest]

The precise reason why I have never gone for LDN. I want a safety net.

I thought the same of CCSVI and then thought hang on, that is false logic, if

something were to help me, what not try it.

Janet

To: mscured

From: alpdesigns1@...

If CCSVI doesn't have the desired effect, what's left?

[Guest guest]

Alan I didn't 'degrade' you and I am sick of you taking offence to what I say.

I was just giving you some direct feedback about your attitude because with the

negative outlook, you're not doing yourself any good.

As I've told you before, I am NOT being nasty or anything like that - you are

being overly sensitiv and are choosing to take my words as aggressive and nasty.

I'm always very direct - I'm Australian, and we tend not to mince words.

I've been very supportive of you and hve tried to help you see things in a more

positive light - the constant negativity is very draining though and sometimes

has a negative effect on other members of the group which I'm sure you hadn't

realised until Janet let you know.

Just try to be less negative and just keep your mind on your research and the

facts - banish the negative thoughts and attitude and I'm sure you'll get good

result from CCSVI.

'What we do in life, echoes through eternity.'

MARCUS AURELIUS (121 - 180 A.D.)

To: mscured

From: alansamston@...

Date: Sat, 9 Apr 2011 13:36:21 -0700

Subject: Re: Re: CCSVI

Just because I was willing to admit I am a worrier does not give you or

a right to degrade me.

You will all be happy to know I am leaving this group.

Goodbye

[Guest guest]

Wow! I think this was taken out of context.

> So if what your wrote above is true of me ---that fears lead to MS and

> anger leads to MS, I guess the same can be said of you, since you have MS

also.

> Maybe you should go to Preacher's School since you seem to love preaching and

>

>

>

[Guest guest]

I'm not sure whether I should bother answering this but Alan, using personal

comments about my framily is pretty low when I haven't attacked you at all -

I've simply been direct in regards to trying to help you get rid of yor fears

and negativity which can only have a negative affect on your physical being.

You're obviously feeling very vulnerable and quite terrified and so are taking

everything at its worst and as something it's not.

I'm being tolerant right now and continuing to try to do the right thing by you

but I would ask you to keep your personal shots to yourself.

You don't know me, you don't know my family or the circumstances and issues

involved in any of my family unit - it also is NONE of your business and is

certainly pretty pathetic to use against someone who has never tried to briong

your prsonal situation into anything.

I have been trying to help you, you have twisted everything in your head to make

a drama out of nothing - I think maybe it's time to take a few deep breaths and

just calm yourself. It comes across that you're really working yourself into a

really fearful state over very little.

Try to remember that most of the members of this group are here to help each

other and think in very similar ways in regards to what helps the body heal -

most of us have the shared opinion that the mind has a big affect on healing.

Try to clear your head of anger and fear - that way you'll be able to stay as

you are mobility-wise which you have said is the most important to you (which we

all completely understand).

'What we do in life, echoes through eternity.'

MARCUS AURELIUS (121 - 180 A.D.)

To: mscured

From: alansamston@...

Date: Sat, 9 Apr 2011 13:42:34 -0700

Subject: Re: CCSVI

________________________________

To: MSCured <mscured >

Sent: Sat, April 9, 2011 7:05:18 AM

Subject: RE: CCSVI

.....

So if what your wrote above is true of me ---that fears lead to MS and

anger leads to MS, I guess the same can be said of you, since you have MS also.

Maybe you should go to Preacher's School since you seem to love preaching and

you have admitted nobody in your family believes anything you say. The preaching

school might help you be better at expressing yourself and obviously preaching

is your passion where you can put YOUR anger.

[Guest guest]

Just to put the record straight (even if it is immaterial now) I had no fear

about the article.

I make my own decisions about whether or not to read the plethora of anti-CCSVI

stuff or just info on restenosis which I'd rather not know about - my body

doesn't want to know! Anyway, CCSVI treatment has been around for far too

little time to see if everyone restenoses. While the going is good, I choose to

stay positive.

So now we can all get on with trying to heal ourselves.

Janet

From: alansamston@...

Subject: Re: Re: CCSVI

,

I wrote the previous email to Janet to apologize to her for any fears I may

have put in her mind in regard to the article that I posted that claimed

" restonsis will happen " in everyone.

[Guest guest]

There are always going to be naysayers. Attitude and care are crucial in ALL

situations, MS related or not. You can't always expect the worst or you will get

it. It is a self-fulfilling, destuctive prophecy. Hope for the best and prepare

for it. You will be fine!

Alan did so much in the short amount of time that he has been diagnosed with MS

that not much would have had a chance to make a difference. You can find any

information that you want to believe on the Internet.

Besides, you've already had your veins opened and you are a witness to the

results. Personal experience trumps the article.

While the going is good, I choose to stay positive.

> So now we can all get on with trying to heal ourselves.

> Janet

..