This Is MS Multiple Sclerosis Community: Knowledge & Support

[mags4short]

Well it is nearing the time for my second trip to Poland. I am going for a check up and procedure again if needed.

Do I need it again, I don't know, but I suspect that I do. The improvements that I had after my first have subsided. However, my balance is still better.

I will wait until I have the follow up before I say anything else, but I am hoping that I can have it again and have the same level of improvements once more.

Having experienced it once, I want more!!!

Will update later in the week.

Mags x

[malden]

Well it is nearing the time for my second trip to Poland. I am going for a check up and procedure again if needed.

Do I need it again, I don't know, but I suspect that I do. The improvements that I had after my first have subsided. However, my balance is still better.

I will wait until I have the follow up before I say anything else, but I am hoping that I can have it again and have the same level of improvements once more.

Having experienced it once, I want more!!!

Will update later in the week.

Mags x

My advice is (if you want an advice) don't go for second if you are not ready for third... or fourth. M.

[CCSVIhusband]

^ I don't think she asked for it, as she seemed pretty excited about going again (and the results she experienced the first time around) ... if you read her post.

There are no guarantees, and I'm sure she's aware of that, as she's been a contributor to the CCSVI discussion for a while now.

[malden]

...as she seemed pretty excited about going again

She seems frighten to me ... if I read her post.

There are no guarantees, and I'm sure she's aware of that, as she's been a contributor to the CCSVI discussion for a while now.

No guarantees?... I see. But why? You bought 5$ hairdryer and you registred the guarantee ...but not on 5000$ procedure?! M.

[CCSVIhusband]

...as she seemed pretty excited about going again

She seems frighten to me ... if I read her post.

There are no guarantees, and I'm sure she's aware of that, as she's been a contributor to the CCSVI discussion for a while now.

No guarantees?... I see. But why? You bought 5$ hairdryer and you registred the guarantee ...but not on 5000$ procedure?! M.

This is my last post in this thread ... but I'll make the point and leave since it is Mags' thread and I'm not going to hi-jack it.

I tore my knee up a few years ago wrestling.

I had it fixed (relatively minor knee surgery that gets done thousands and thousands of times a year).

A few weeks later, I severely injured my knee ... wait I thought the first procedure was supposed to fix everything?

There are NO guarantees! I could have gone in and they could have done the wrong knee, they could have cut my arm off ... a lot can go wrong.

There are NO guarantees in life. You breathe thousands of times a day ... what's to say on your next breath you won't happen to breathe in a a fly which by some odd coincidence has some new form of disease, that not only kills you but kills off 1/2 of the world's population.

Or ... you walk out of your house all the time, what's to say the next time you don't walk out you won't get hit by an asteroid. There are NO guarantees! There's risk in everything.

EVERYONE on this board should have read Dr. Zamboni's research to know that somewhere (the exact number escapes me) ... but somewhere near 50% of people who get angioplasty restenose and need follow-up procedures.

You keep making the same point ... and everyone on this board can see through it.

Where you got she is scared is beyond me ... I think she'd agree that's not the case.

[malden]

...as she seemed pretty excited about going again

She seems frighten to me ... if I read her post.

There are no guarantees, and I'm sure she's aware of that, as she's been a contributor to the CCSVI discussion for a while now.

No guarantees?... I see. But why? You bought 5$ hairdryer and you registred the guarantee ...but not on 5000$ procedure?! M.

This is my last post in this thread ... but I'll make the point and leave since it is Mags' thread and I'm not going to hi-jack it.

I tore my knee up a few years ago wrestling.

I had it fixed (relatively minor knee surgery that gets done thousands and thousands of times a year).

A few weeks later, I severely injured my knee ... wait I thought the first procedure was supposed to fix everything?

There are NO guarantees! I could have gone in and they could have done the wrong knee, they could have cut my arm off ... a lot can go wrong.

There are NO guarantees in life. You breathe thousands of times a day ... what's to say on your next breath you won't happen to breathe in a a fly which by some odd coincidence has some new form of disease, that not only kills you but kills off 1/2 of the world's population.

Or ... you walk out of your house all the time, what's to say the next time you don't walk out you won't get hit by an asteroid. There are NO guarantees! There's risk in everything.

EVERYONE on this board should have read Dr. Zamboni's research to know that somewhere (the exact number escapes me) ... but somewhere near 50% of people who get angioplasty restenose and need follow-up procedures.

You keep making the same point ... and everyone on this board can see through it.

Where you got she is scared is beyond me ... I think she'd agree that's not the case.

I's ok to for you to belive what ever they talk to you. But I am a diferent person, so I ask for a garantie. No guarantie - no deal. M.

[Cece]

Well it is nearing the time for my second trip to Poland. I am going for a check up and procedure again if needed.

Do I need it again, I don't know, but I suspect that I do. The improvements that I had after my first have subsided. However, my balance is still better.

I will wait until I have the follow up before I say anything else, but I am hoping that I can have it again and have the same level of improvements once more.

Having experienced it once, I want more!!!

Will update later in the week.

Mags x

good luck, Mags!

[Donnchadh]

snip

I's ok to for you to belive what ever they talk to you. But I am a diferent person, so I ask for a guarantie. No guarantie - no deal. M.

You want a guarantee? No doctor is going to give that kind of assurance, for any kind of procedure.

Of course it's your prerogative to remain untreated and suffer the consequences. Or you could do your due diligence, study the options, and give "informed consent" and hope you have made the correct choice.

There's no guarantees in life-you are not buying a car.

Donnchadh

[NHE]

Hi Mags,

Well it is nearing the time for my second trip to Poland. I am going for a check up and procedure again if needed.

Do I need it again, I don't know, but I suspect that I do. The improvements that I had after my first have subsided. However, my balance is still better.

I will wait until I have the follow up before I say anything else, but I am hoping that I can have it again and have the same level of improvements once more.

Having experienced it once, I want more!!!

Will update later in the week.

Good luck with your trip! I hope that you can regain the improvements that you had from your first treatment.

NHE

[NHE]

I's ok to for you to belive what ever they talk to you. But I am a diferent person, so I ask for a garantie. No guarantie - no deal. M.

I don't recall that any of the approved MS medications come with a guarantee. The Avonex that I took certainly didn't.

NHE

[mags4short]

Oh dear, what happened here?

Malden,

Thanks for the advice, but I do not need it. I was and am fully aware that there are no guarantees with this procedure. I went in May knowing that it was not a cure, I hoped that my MS stablised and did not progress. I also hoped that I may experience some reduction in my daily symptoms.

When I had the procedure I was satisfied that I was doing all I could to help myself, that was a great feeling after years of frustration and feeling that I was on a slippery slope and there was nothing I could do about it.

If I look back at my journey since finding out about CCSVI I can say that I have been liberated quite a few times already...

Firstly for the first time since being diagnosed over 10 years ago I was given hope with regards to my MS. The hope spurred me on to read as much as I could and I made the informed decision to follow my gut feeling, it all made so much sense to me. (Liberation 1).

Secondly, Once I had decided that I wanted to follow this route I was on a high but was brought down to earth with a bang once I found out how much this was going to cost. I tried to find someone in the UK who was willing to perform the procedure and I was met with a dead end. I was totally deflated and the frustation was overwhelming. However, my lovely family stepped in and said that they would cover the cost if I was sure that this is what I wanted to do. (Liberation 2).

Thirdly, once I had made the decision and was given the financial resources to follow it, ( something that I am well aware that other MSers do not have the privilege of, and that saddens me deeply), I made an appointment with my Neurologist to keep him informed. Only to be told that I was making a big mistake, that he was against the idea, and basically that I should not go. After listening to his advice I informed him that it was my body and I was willing to take the risk. I thanked him for his concern and told him that I would keep him updated. That in itself was so liberating! For once I was able to make my own decision regarding my own health. (Liberation 3).

I went to Poland in May with a feeling of hope and dread. Hope that this could help me in some way and dread thinking that they may perform the tests and tell me that I did not have CCSVI, what then?? They did the test and confirmed that I did and that feeling of dread lifted, there was something they could do!! (Liberation 4).

The following day I had the procedure, I was nervous but excited at the same time. The sense of expectation was quite exhilarating, what did the future hold, this was something I had not felt for a long time with regards to the MS. I was not disappointed in the days/weeks that followed. I experienced a reduction in many of my everyday symptoms and had more energy than I knew what to do with. My balance was 90% better. My head was clearing, my tremour was less, my feet and hands were warm. This brought home to me just how much the MS was affecting me and I could feel improvements! ( Liberation 5).

Slowly over the past 6 months or so I have been noticing that I am experiencing more fatigue and my head is not as clear as it was. This was something that I was aware could happen, but hoped that it would not. Although I did feel down about it for a short while, I was also aware that the same options were available to me. I made the follow up appointment and am going again on Wednesday. My family have come to the rescue again and are funding the second visit, for which I am truly thankful. Again I have hope and am excited about the future. (Liberation 6).

That said, I think that this may have to be my last trip as I cannot expect my family to keep putting their hands in their pockets. Hopefully, this trip will keep me going until the procedure is available here.

Although this is a long winded answer, I suppose I can sum up by saying that I am going for the second, fully aware that there are no guarantees and although I cannot afford a third or fourth I would have the procedure done every month if it was available, accessible and near to home.

Unfortunately this is not the case yet. I say yet, because I truly believe and hope that there will come a day when this is available to all. I just hope that the experiences of those of us who were willing to take the risk in these early days will be of benefit to those who come after us.

As you can see, this has been a rollercoaster of a ride for me and those close to me so far. I do not know what is around the corner, I just hope that it is one of those steep inclines and not one of those stomach churning dips. We will see...


Mags x

[mags4short]

good luck, Mags!

Thanks Cece x

[CenterOfGravity]

Thank you Mags for that wonderful post and for demonstrating how it isn't necessarily hard to swat at a fly. Best of Luck with procedure #2!

[Coolcatcarrie]

Very well said Mags and all the very very best for your 2nd procedure! Carrie

[nagsy]

....As you can see, this has been a rollercoaster of a ride for me and those close to me so far. I do not know what is around the corner, I just hope that it is one of those steep inclines and not one of those stomach churning dips. We will see...
Mags x

Hope procedure number two does you well if needed.

Cheers,

Pinda
PS One of the panel at the Glasgow conference said that having the procedure redone during the 6 month period (+- 1 month) is probably the best time to have it done. Something to do with the fact that the vein walls will not have hardened completely yet.