RE: Unresponsive to Angioplasty (for CCSVI)/Also comment on caffeine

[Guest guest]

Hi ,

I am very sorry to hear that as of yet the CCSVI has not led to improvements for

you. I hope it still will. May I ask where you had it done?

You are probably aware of the ThisIsMS CCSVI site. There are all kinds of

threads there of people with a wide range of results, including some who felt

worse or the same after the treatment. Perhaps there are threads about people

for whom it took a while to help. If you can't find the page let me know and

I'll send you the links.

On a different note I just wanted to mention that I don't believe caffeine is

good for the body. However when I treat myself to caffeine on occasion it wakes

up my brain and my body. On days I feel like dead weight, if I take some

caffeine it often really lifts that feeling of extreme fatigue and also I am

much more able to exercise when I take caffeine. However, I don't see it as part

of a healing/detox treatment and I think it is probably more negative than

postive long term based on my research. I just take it as a " pick me up " on a

very fatigued/sluggish day.

________________________________

To: mscured

Sent: Sun, December 5, 2010 6:16:58 PM

Subject: Unresponsive to Angioplasty (for CCSVI)

 

Hey all,

On Dec 3rd I underwent the angioplasty for CCSVI. I had less than 50% blockage

on both JV's and no blockage on Azygos. During the procedure I felt some loss of

numbness in my right hand. Brain fog was a little less as well. In post op I

felt my constipation had gotten less as I have had to assist BM's daily and felt

like I really had to go. Same with urination. I cath to urinate and it really

felt like I had to go. Alas when I tried I had to assist BM and cath to urinate.

That afternoon I felt like I was able to walk a bit faster and had more balance.

Unfortunately the next day I woke with a headache and stiff neck which was

expected. I wasn't expecting the numbness in my hand to return and my brainfog

and trouble walking returned. My constant daily dizziness which had subsided

post op had come back too.

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[Guest guest]

I have heard (but I don't know how true it is) that there are (Naysayer)

neurologist/Big Pharma plants on ThisIsMS which is giving an untrue reading of

how CCSVI has really been for everyone.

That is countered by the, I am sure, many YouTube miracle videos that are not

real but just from people who want to see their name in lights.

All I am saying is to use caution when viewing any of those sites if you don't

know the person first- or second-hand.

Janet

To: mscured

From: alansamston@...

Date: Sun, 5 Dec 2010 16:39:12 -0800

Subject: Re: Unresponsive to Angioplasty (for CCSVI)/Also comment on

caffeine

Hi ,

I am very sorry to hear that as of yet the CCSVI has not led to improvements for

you. I hope it still will. May I ask where you had it done?

You are probably aware of the ThisIsMS CCSVI site. There are all kinds of

threads there of people with a wide range of results, including some who felt

worse or the same after the treatment. Perhaps there are threads about people

for whom it took a while to help. If you can't find the page let me know and

I'll send you the links.

On a different note I just wanted to mention that I don't believe caffeine is

good for the body. However when I treat myself to caffeine on occasion it wakes

up my brain and my body. On days I feel like dead weight, if I take some

caffeine it often really lifts that feeling of extreme fatigue and also I am

much more able to exercise when I take caffeine. However, I don't see it as part

of a healing/detox treatment and I think it is probably more negative than

postive long term based on my research. I just take it as a " pick me up " on a

very fatigued/sluggish day.

________________________________

To: mscured

Sent: Sun, December 5, 2010 6:16:58 PM

Subject: Unresponsive to Angioplasty (for CCSVI)

Hey all,

On Dec 3rd I underwent the angioplasty for CCSVI. I had less than 50% blockage

on both JV's and no blockage on Azygos. During the procedure I felt some loss of

numbness in my right hand. Brain fog was a little less as well. In post op I

felt my constipation had gotten less as I have had to assist BM's daily and felt

like I really had to go. Same with urination. I cath to urinate and it really

felt like I had to go. Alas when I tried I had to assist BM and cath to urinate.

That afternoon I felt like I was able to walk a bit faster and had more balance.

Unfortunately the next day I woke with a headache and stiff neck which was

expected. I wasn't expecting the numbness in my hand to return and my brainfog

and trouble walking returned. My constant daily dizziness which had subsided

post op had come back too.

Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use

..

[Guest guest]

Those results (below) are rather discouraging. It is what I have been trying to

say to balance those who are, I believe, overly positive about the success of

CCSVI. Folks, we have to accept the fact that at this point the CCSVI procedure

does not work for everyone and there is a hit-or-miss component to it.

>

> Well from experience, my wife has now had two visits to Euromedic for a stent

and angioplasty, we have met 9 people who had treatment on the same day or

surrounding days. Only one (Ginger from Canada who updates on You tube) has had

any real improvement, at least four have re-stenosed whilst the others have had

some slight improvements that have since dissipated but have not to my knowledge

been re-scanned so I don't know what their status re re-stenosis is.

> These are real people who post on ThisMS and are definitely not backed by

multinational conglomerates.

[Guest guest]

Hi All

Alan, I really disagree I'm afraid.

I am yet to read something which shows that a person in this group who has had

the procedure is 'overly positive' about CCSVI.

Most who are yet to have it are asking questions and (I hope) doing a lot of

their own research on top of what suggestions and facts/figures they get from

other members of the group.

I would hope that every member of this group has taken note of the dozens of

times over the last few years where it has been given in black and white that

NOT EVERYONE will have outstanding results from the 'CCSVI procedure' due to too

much damage having been done.

I feel terribly sorry should anyone choose NOT to listen to the calming and

realistic recommendations for temperance and realism. Any person who goes into

getting the procedure done, imagining that they'll be 'cured' and renewed into

exactly where they were before 'MS' changed their existence, will be terribly

disappointed.

I stand by the fact that each person's situation will be different and someone

who has 'RRMS' and expects to have HUGE success may find that it's not the case

in THEIR situation. Each individual will have different results as each person

has a different amount of damage done, and a different type (location/extent

etc) of damage which has been done.

Restenosis is something which may happen - that is a given. When we use our

intelligence, we see that Diet, exercise, and recommended 'MS' supplements will

help keep our chances of restenosis at a far more minimal level. When we also

think about what is in our blood which thickens blood, we can see that stress is

a big assistant to stenosis. It is best to not stress about restenosis.

The doctors who are the leaders in the CCSVI field have found different

percentages of restenosis in their numbers of patients. Zamboni's figures given

were highest and Zivadinov's much lower.

The figures are still being collated and as this is a 'new' thing, I think we

will learn more about the connections and facts as they are reported.

I will find out whether I have restenosed when I have my check-up in May - until

then, I will be being sensible and just remaining calm about it whilst sticking

religously to the BBD, LDN and the supplements.

I can't and won't tell people what they should do to stop or minimise their

stenosis - all I can do is recommend people stick to the BBD, stay very calm and

stress-free regarding restenosis and keep on what has worked best for them up

'til now.

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

MARCUS AURELIUS (121 - 180 A.D.)

To: mscured

From: alansamston@...

Date: Wed, 8 Dec 2010 18:17:19 +0000

Subject: Re: Unresponsive to Angioplasty (for CCSVI)/Also comment on

caffeine

Those results (below) are rather discouraging. It is what I have been trying to

say to balance those who are, I believe, overly positive about the success of

CCSVI.

[Guest guest]

My husband was treated in August for CCSVI and had great results which started

to go away after a couple of months. He was found to have restenosed and was

retreated last month. He has PPMS. He now can sleep through the night without

body twitching and legs jerking. His fatigue is gone, he can tolerate the heat

again, and his mood is so much better. No more angry outbursts that happened

several times a day prior to having this done. Now he loses his temper about

once a week, which was what he was like prior to MS. He also has had dreams

again. Just being able to sleep can do wonders. It did not restore his strength,

but he has had gains in strength. It didn't fix everything, he still battles

horrible pain, but it did make some things much better, got him off 4 different

medications for sleep, fatigue, twitching. We went to San Diego and it was

covered by our insurance. They have treated 125 patients and 17 have reported no

changes. We went with the hope of stopping progression because nothing else

could offer that and so far it has, everything else we consider a bonus and we

love our bonuses

Amy Junes