CCSVI treatment available in the U.S.!

[Cece]

Have you any proof of this assertion, pklittle? Elastic recoil causes a vein to retake its original shape. Nothing more. I think we are correctly discussing thrombosis as the situation in which angioplasty could cause a thrombosis which could worsen the veins. Again, aspirin or anticoagulants are effective at preventing thrombosis.

[pklittle]

Anyone opposed to stents needs to consider the possibility that their vein could be worse after angioplasty than before.

There have been virtually no reports of this. I am none too worried. Angioplasty is known to stretch the vein. Elastic recoil may bring it back to its usual position, but no further than that. The danger would be in a thrombosis forming, that could clot off the vein. I will be taking aspirin as a preventative method.

Really? Are you a doctor?

This is a thread to discuss Dr Siskin's service. I am telling you first hand that the Dr told me he decides to stent if the vein is worse after angio than before.

[Cece]

Your firsthand report is secondhand to me.

[pklittle]

Your firsthand report is secondhand to me.

Ok secondhand to you.

I suggest you ask the Dr yourself then. I have an email from him from when I asked him to clarify his use of stents prior to my "liberation" last month.

Since you are "none too concerned" because you are taking your aspirin to avoid clotting, I guess you're all set and can be assured you will not be faced with the possibility of stents.

[Vivianne766]

At this point I am willing to do anything. I am one step away from asking my roommate to poke me in the neck with a ...... oh, never mind.
I get sever pressure in my neck and chest sometimes head. Drinking red wine helps, but I can't do it any more, esp. at 4:00 am.
I don't know how much longer I can hang in there. God help us all.
... I'll watch some before after vid's. That always helps.

Hang on. Just think about it....a year ago we had no idea that "MS" was a vascular disorder.

Now we do.

A year ago, there was no diagnostic testing for CCSVI.

Now there is. A couple of great people are working on developing ultrasound, MRI, MRV imaging to help determine the problem. And the gold standard, venograms are being used today.

A year ago.....the only thing offered was snake oil phrama and destructive anti-immune suppressive therapy's by neuro's.

Now, admittedly only a handful, some IR's are pioneering a procedure which can actually CORRECT the situation. Yes, it's just at a early stage but so much has been learned already.

It will only get better as the word spreads and results come in from treated patients. There's a lot to do, true, but today there's a real basis for....

HOPE!

Donnchadh

YES YES YES You are right.
But a year ago my MS was not as BAD.
I can hardly do ANYTHING now.

[belsadie]

I think the point is that those accepting liberation are also accepting the possible risks that come with it. From what I can gather, people aware of this treatment are very well versed in the research and reported outcome so far. We are, contrary to our being classified as "desperate and "hiding our head in the sand", very knowledgeable and have done the research. No-one is unwilling to entertain the possibility of negative outcomes. It just will not deter us from seeking treatment that just might offer a whole lot more than shoulder shrugs and instructions on how to inject ourselves.
We have already been guided toward drugs that don't perform as promised, enrolled in clinical trials with the possibility of killing us {hyC}. and put up with the BANG-BANG of those MRIs! We are not faint of heart and will now decide what risks we are willing to take.
No one has a gun to our heads. However, there are times when I do feel like I'm being held hostage,not only by the MS but also those who are taking care of our medical needs.
All I ask is to get out of my way and take the roadblocks down,

[Trish317]

I think the point is that those accepting liberation are also accepting the possible risks that come with it. From what I can gather, people aware of this treatment are very well versed in the research and reported outcome so far. We are, contrary to our being classified as "desperate and "hiding our head in the sand", very knowledgeable and have done the research. No-one is unwilling to entertain the possibility of negative outcomes. It just will not deter us from seeking treatment that just might offer a whole lot more than shoulder shrugs and instructions on how to inject ourselves.
We have already been guided toward drugs that don't perform as promised, enrolled in clinical trials with the possibility of killing us {hyC}. and put up with the BANG-BANG of those MRIs! We are not faint of heart and will now decide what risks we are willing to take.
No one has a gun to our heads. However, there are times when I do feel like I'm being held hostage,not only by the MS but also those who are taking care of our medical needs.
All I ask is to get out of my way and take the roadblocks down,

Very well said!

[bmk1234]

I had a face to face (and phone discussion on this topic) with a certain Dr. and yes, before the procedure I was told that the vein can end up in worse shape - than before the angio. In this scenario I was told they would need to stent it. I was also told by the Dr. he has had this happen a couple of times.
Just the facts.
bmk

[Cece]

I had a face to face (and phone discussion on this topic) with a certain Dr. and yes, before the procedure I was told that the vein can end up in worse shape - than before the angio. In this scenario I was told they would need to stent it. I was also told by the Dr. he has had this happen a couple of times.
Just the facts.
bmk

Thanks bmk, I appreciate your weighing in on this.

edited to add: And a thank you to pklittle as well. This is 'big' information. I am considerably less confident that I can avoid stents at all costs at Dr. Siskin's.

[eric593]

Thanks for that info, pklittle and bmk. Important to know.

[pklittle]

Thanks for that info, pklittle and bmk. Important to know.

Eric and CeCe, you are welcome.

Thanks to bmk for confirming what I said about the Dr's criteria for the use of stents.

There is so much to consider when signing up for this. I am one of the unfortunate ones who gained no benefit.....but looking on the bright side, I did not have any complications, did not get stents and am not on blood thinners.

[BevB]

I need to vent. This woman I know who has an appointment on August 6th in Albany is going to be the death of me (It's a good thing I rarely see her. She called approx 3 weeks before my June 1st call to the clinic but that's a whole other issue. While (what is the waiting list 7-800) wait anxiously sitting by the phone praying the call will come as our MS symptoms progress on a daily basis, she is now considering cancelling her appointment. August 6th is what about 3 weeks away. I feel like screaming to make up her mind so that they are able to fill her spot with someone who would appreciate it. She is considering other things which is fine for her. Testing Trial here in Canada a new drug for RRMS if that's what she wants fine but don't hold up the line, don't wait until it's too late to fill your spot.

For others who are considering cancelling please don't wait until it's too late for your space to be filled.

I apologize for this post, but I had to get this off my chest as well as to plead to those considering cancelling to do so in a timely manner so that others can benefit. Thanks

[NotFound]

I need to vent. This woman I know who has an appointment on August 6th in Albany is going to be the death of me (It's a good thing I rarely see her. She called approx 3 weeks before my June 1st call to the clinic but that's a whole other issue. While (what is the waiting list 7-800) wait anxiously sitting by the phone praying the call will come as our MS symptoms progress on a daily basis, she is now considering cancelling her appointment. August 6th is what about 3 weeks away. I feel like screaming to make up her mind so that they are able to fill her spot with someone who would appreciate it. She is considering other things which is fine for her. Testing Trial here in Canada a new drug for RRMS if that's what she wants fine but don't hold up the line, don't wait until it's too late to fill your spot.

For others who are considering cancelling please don't wait until it's too late for your space to be filled.

I apologize for this post, but I had to get this off my chest as well as to plead to those considering cancelling to do so in a timely manner so that others can benefit. Thanks

They will not accept "giving up the spot" for somebody else. They will only shift the line one person ahead in the order already scheduled. So one person giving up would only "shift the line" ahead by a few hours.

I tried when I gave up my spot.

[Cece]

They will not accept "giving up the spot" for somebody else. They will only shift the line one person ahead in the order already scheduled. So one person giving up would only "shift the line" ahead by a few hours.

I tried when I gave up my spot.

Good to know...but I don't think they are shifting all appts forward when a cancellation happens? They are scheduling someone new on the list into that spot, so someone who might've had to wait for a few months suddenly gets an early spot. This happened to someone posting here in June, I think.

[hope410]

I tried when I gave up my spot.

Just curious, why did you give up YOUR spot?