This Is MS Multiple Sclerosis Knowledge & Support Community

Sending best wishes to BooBear and to FlashHack. Can't wait to hear of your results.

This CCSVI treatment is really progressing and I certainly hope that lots of data and information is being recorded and that it will cause "some people" to take note. As I read these posts I have a better understanding of how many people are affected by MS and what they are suffering. I so wish that EVERYONE could be treated and have great results. But I am very thankful for the progress and knowledge that been available to this point.

Forward, March, I say to the CCSVI treatment and liberation.

Guider

[quote="val57gal"]I had my treatment in California. I don't know anything about IRB approval, but my dr said clearing blocked veins is standard IR treatment, so he had no qualms about doing it.

I had to pay for my MRV, but since it showed a blocked vein we could get insurance authorization for a venogram.

Venogram/IVUS/angioplasty performed by Michael Arata MD of Newport Beach/Costa Mesa, CA. Dr. Arata has given me explicit permission to post his name here.[/quote]

Val - Please check your PM.

Thanks,

Steven

I'm out of the hospital and still feeling a bit woozy from the "conscious sedation" that Dr. Siskin uses during the procedure so I won't make any attempt to judge my symptom changes. I had mine done at Albany Medical Center and we stayed across the street at the Garden Hilton.

I will post more detail once I get home and any "placebo effect" has worn off ( ), but Dr. Siskin ballooned mild stenoses in both IJV's at the juncture with my subclavian vein. A "significant" stenosis in my azygos was also found and ballooned. So chalk up one more for the correlation between CCSVI and MS.

One thing that I did ask, was how long his waiting list was. (He replied that they have 700-800 people on their list. They are trying to do 90-100 people every month (in addition to all the regular work they were doing before he decided to enter the CCSVI struggle). He seems quite the pragmatist (a compliment) and not necessarily interested in all the academic posturing and high-minded classification. Just the kind of Doc you would expect to eschew the IRB process and go straight for treatment without a trial.

For those living on the West Coast, take heart! Dr. Siskin has an IR friend in Seattle that he is working closely with to do follow-up scans. This doc is considering doing the procedure in the future, but is not yet ready to commit.

That's all for now. After having the procedure and experiencing how simple and painless it was it makes me all the more angry with the neuros who are opposing this.

Flash,

Congrats!!

Best wishes,
~Pam

Flash,

thanks for the informative report. happy recovery.

Sending you prayers and good thoughts for complete healing, Flash. I hope my darling man is seen sometime in the next few months.

Wow. Congratulations Flash. Wishing you continued improvements and health. Liberation to us all.
Trish I hope u get to see the doc' very soon.

Is BooBear next ?

Vivianne766 wrote:Wow. Congratulations Flash. Wishing you continued improvements and health. Liberation to us all.
Trish I hope u get to see the doc' very soon.

Thank you, Viv. It's not me who needs to see him. It's my darling man. He was diagnosed with PPMS in June 2007. His condition has started to get alot worse.

I pray that everyone who wants to can be tested and treated for CCSVI. I hope you see the doctor soon, too, Viv.

Hugs!

Flash - I am so pleased to hear your report . Please take care for the next few days and allow your body to adjust. Will watch for further reports.

Trish - I certainly understand your concern for your husband and I too pray that he will soon receive his call. Can you believe it? 7-800 on a waiting list? Certainly goodness the higher ups will have to take notes as he continues doing the procedure and more are being liberated. I wonder how many he has actually done so far.

Red tape is hard to accept and deal with. God bless everyone. Hope those waiting will soon get a call.

Guider

Guider wrote:Flash - I am so pleased to hear your report . Please take care for the next few days and allow your body to adjust. Will watch for further reports.

Trish - I certainly understand your concern for your husband and I too pray that he will soon receive his call. Can you believe it? 7-800 on a waiting list? Certainly goodness the higher ups will have to take notes as he continues doing the procedure and more are being liberated. I wonder how many he has actually done so far.

Red tape is hard to accept and deal with. God bless everyone. Hope those waiting will soon get a call.

Guider

Thank you, Guider. He isn't my husband (yet). lol! Because of when he made his first call to Dr. Siskin's office, in May, I'm hoping he's on the lower end of the waiting list. The positive thing is that the doctors learn more with each procedure that they perform. I'm grateful to all the brave, determined people going first. They're really pioneers.

Trish, check your PM

Try again.

CCSVIhusband wrote:Trish, check your PM

I checked but there's nothing there.

Trish 317 - You say his initial call was in May?? My son's call was the first week in June. Can you remember when Flash's first call was? I'm just wondering how this waiting list is moving along. Of course when you hear of someone getting done it makes you even more anxious to get your own appointment, doesn't it? Waiting is very difficult for us.

God Bless,
Guider

CCSVIhusband wrote:Trish, check your PM

Try again.

Got it.