CCSVI treatment available in the U.S.!

[thornyrose76]

I called and left my name and number. Is there an email address and if so what is it as I didn't see it at there website? Given that I left my name, number and other particulars about a week ago, when can I possibly expect a call back and who calls, do they just ask for your medical history? Basically when and what can I expect, I'm getting really anxious and worried?!

[JCB]

If you look at previous posts on this thread (page 23) you will find an email address in the letter from the clinic. You can expect your first call in about a week (guessing). They will ask general info. questions, then you wait again. I am in the "wait again" portion of this process.

Good Luck

[Vivianne766]

It's been almost seven weeks since my first callback (June 2). I did receive the email so now it is just waiting time. 700-800 and 100 a month means at the most (at the current time) it will be 7-8 months... not too shabby for something most docs are not on board with in the US.

I think you are in the first 200. Also Trish.
That's just my guess. We'll see.

[longman111]

Maybe this will help

I called 6/22/2010

Received callback on 7/1/2010 asking for general info; name, dob, etc.

Email received 7/13/2010

Will get a call from the doctor when it is my wifes turn to be scheduled. They are only scheduling out 4 months. After the doctor calls there is a final call setting up the appointment.

[Trish317]

I am in there too, after Boo and before BadCopy.

Any my daughter and I have Aug 5 appts!!! All prayers & positive energy accepted

Sending prayers and positive energy!

[newlywed4ever]

Thank you, Cece, Trish317 & Rokkit - and back at ya! (even tho that sounds flippant, I mean it from the heart!). Rokkit, you are correct - I have PPMS (never had RR or SP) and daughter has RRMS. I was gratified to see (somewhere!) that Dr Siskin is going in from the left and I will certainly request that. My daughter (age 32) is opposed to stents - I'm not....

[Rieja]

I think you are in the first 200. Also Trish.
That's just my guess. We'll see.

Aye, we will see. As I stated before, I am just posting dates so that others get a sense of timeframe. It would be "nice" to get a number though. Like you are #247 on our waiting list. <shrug> at least I know I am on a list

[CCSVIhusband]

Rieja ... check your PM s...

[pklittle]

Thank you, Cece, Trish317 & Rokkit - and back at ya! (even tho that sounds flippant, I mean it from the heart!). Rokkit, you are correct - I have PPMS (never had RR or SP) and daughter has RRMS. I was gratified to see (somewhere!) that Dr Siskin is going in from the left and I will certainly request that. My daughter (age 32) is opposed to stents - I'm not....

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

[Cece]

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.

[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.

[eric593]

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

Why would angio make it worse?

[Donnchadh]

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

[Trine]

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

Why would angio make it worse?

It does happen with angioplasty. LR1234 posted on another thread that her veins thrombosed after her second angioplasty.


Hi All,
I am writing as I promised I would report the good and the bad (even though I feel like disappearing for a while until everything is fixed)
Basically I went for a second procedure in Bulgaria (first was in POland in Jan). The reason I went to Bulgaria was because I had a major attack of vertigo. (could have been inner ear/could have been MS, the jury is out) either way I wanted to try and improve it.
Had both jugular veins ballooned plus the azygous vein on the 1st July.
Developed severe pain in left jugular vein and had pain in chest with breathing probs (both of these have subsided now to a minimum)
Anyway new doppler has revealed left IJV totally thrombosed, they are not sure yet whether parts of it have collapsed. Either way it has no flow at all:(
Not sure if anything can be done about it at this time, not sure yet if the dr's in the UK are willing to help me "fix it".
Symptom wise I have no major changes to report. I actually think the blood thinners I have been on for the past 5 days are keeping that feeling of pressure in my head at bay as it feels ok at the moment and I don't feel too MSy.

There are risks to ballooning, my stenosis was mild and now I have made the situation so much worse with this treatment. I was feeling very ill prior to the procedure so I wanted to be treated.

Dr's in Bulgaria have offered me free treatment to rectify but according to a dr in the Uk touching a clot so near the heart can be dangerous as parts can break away.

So not sure what is going to happen next, praying my MS won't get worse.
Also hoping everything can be fixed.
Thought I would let you all know

[pklittle]

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

Why would angio make it worse?

It is possible that stretching the vein can make it recoil* and actually be more narrow than it was.

*editing.. "recoil" is my word choice for describing the vein's reaction of not staying open. My doctor said angio can actually result in a vein being worsened, which I assume means more narrow than it was.