CCSVI treatment available in the U.S.!

[Vivianne766]

Good luck to us all. It'll be good to know ........perhaps by the end of this week.

[thornyrose76]

What is the exact cost for everything? Get veins checked, angioplasty and stents?

[Cece]

What is the exact cost for everything? Get veins checked, angioplasty and stents?

I am going to Albany next week -- cost is $3000 venogram; $2000 balloon angioplasty; $2000 stent (if needed).

Cheers,

Sandra

I have heard these number from others as well. Dr. Siskin does not do mrv or doppler ultrasound so no expenses there. Venogram is done and if ccsvi is found angioplasty is immediately performed, so $5000 unless stents are needed. Very reasonable IMO.

[pklittle]

What is the exact cost for everything? Get veins checked, angioplasty and stents?

I am going to Albany next week -- cost is $3000 venogram; $2000 balloon angioplasty; $2000 stent (if needed).

Cheers,

Sandra

I have heard these number from others as well. Dr. Siskin does not do mrv or doppler ultrasound so no expenses there. Venogram is done and if ccsvi is found angioplasty is immediately performed, so $5000 unless stents are needed. Very reasonable IMO.

Under some circumstances, he does do ultrasound in his office. I had my procedure in the hospital, and an ultrasound the next day. Cost? I don't know yet.

[Cece]

I think he also does the venoplasty at the hospital if you are insured and at the clinic if uninsured, to keep costs down.

[FlashHack]

From page three of this thread. Sounds like it is worth repeating. As to procedures, I believe that his team is well over 100 by now.

Wow, this guy is working late. Dr. Siskin called again tonight at 7pm Pacific. So he is up calling us MSers at 10pm his time. impressive. He spent several minutes querying me about my MS diagnosis and symptoms. Next we discussed CCSVI and its diagnosis. Here are some points I found encouraging.

1. TESTING: Like Sclafani, Siskin believes that a catheter venogram is the gold standard for diagnosing CCSVI. For those of us traveling long distances to be treated (Canadians and west coasters), he doesn't believe we should be subjected to the vagaries of a preliminary MRV or doppler US.

2. EXPERIENCE: He (or his clinic?) has already performed 15 procedures. They have scheduled 60 more. Siskin estimated that my wait would be 2 months. He is very hopeful that that timeline will become shorter.

3. IRB APPROVED STUDY: As I think was said before, they are contemplating an IRB approved study, but that is a separate deal. They are treating people now and not waiting for a study.

4. INSURANCE: They have had success with billing insurance.

5. COST: For those having to pay out-of-pocket they will try to minimize costs by performing the procedure at their clinic rather than the hospital. At their clinic, the venogram runs approximately $3,000. Angioplasty adds another $2,000 (per?). Stents are $2,000 per. The hospital would be over $12,000 for the procedure, but there is less waiting using the hospital's facilities as opposed to the clinic.

Well, that is all I can remember. He was quite nice and patiently answered all my questions. I was very encouraged and almost feel like celebrating, but don't want to jinx anything.

[Drury]

I am a little confused.

If catheter venogram is the gold standard why would one need to have an MRV and doppler? I mean if its OK not to have them if you are coming from a long way away what would the benefit of having an MRV or doppler be?

I am sorry if this has been asked before.

Drury

[Cece]

I am a little confused.

If catheter venogram is the gold standard why would one need to have an MRV and doppler? I mean if its OK not to have them if you are coming from a long way away what would the benefit of having an MRV or doppler be?

I am sorry if this has been asked before.

Drury

Dr. Siskin does not have me scheduled for any testing beforehand. The ultrasound must be for afterwards, to check if the ballooning is holding.

[FlashHack]

This may have changed in the last two months (the information is that old). Since an MRV and Doppler are non-invasive, they have historically been preferred to discover venous abnormalities. That is, they were preferred before anyone knew anything about CCSVI. As IR docs get to know CCSVI and its connection to MS they are feeling more confident in going directly to a venogram. I think that is where Dr. Siskin is headed, but perhaps not two months ago.

I will be sure to ask him when I (God willing) see him this coming Monday.

[Drury]

Thank you Cece and FlashHack,

We live closer and have an appt in August for MRV, Doppler and consultation prior to procedure which is why I am asking. I just do not understand why it is not necessary to have these done if you live much further away? and I wondered what the benefit is to have them done?

FlashHack,

All the very best for Monday.

Drury

[thornyrose76]

This may have changed in the last two months (the information is that old). Since an MRV and Doppler are non-invasive, they have historically been preferred to discover venous abnormalities. That is, they were preferred before anyone knew anything about CCSVI. As IR docs get to know CCSVI and its connection to MS they are feeling more confident in going directly to a venogram. I think that is where Dr. Siskin is headed, but perhaps not two months ago.

I will be sure to ask him when I (God willing) see him this coming Monday.

Let us know how that goes and what he says

[Trish317]

Hello,

The CCSVI procedure is not FDA approved and thus it can not be performed in the USA or Canada yet. All these doctors in the US are doing this procedures under the table, and once they get caught they shut down their operations. Majority of these doctors (or Hospitals) don't follow the guidelines and protocols set by Dr. Zamboni to save time and money, and patients end up getting the worst treatment for their MS. The patients thus get stuck with serious complications and they can not even contact the doctor if his/her clinic is shut down.
The Liberation treatment should be done under the guidelines set and applied carefully. Follow-ups are essential and thus doing it (where and when) is serious considerable option.
Even for patients who is traveling outside, make sure the hosting hospital is JCI approved (Gold-Standard Hospitals). As I researched some Medical tourism companies are doing such packages for liberation, but always stay on the safe side and ask questions.

I don't know where you are from but everything you said in your first paragraph is incorrect.

[Vivianne766]

Hello,

The CCSVI procedure is not FDA approved and thus it can not be performed in the USA or Canada yet. All these doctors in the US are doing this procedures under the table, and once they get caught they shut down their operations. Majority of these doctors (or Hospitals) don't follow the guidelines and protocols set by Dr. Zamboni to save time and money, and patients end up getting the worst treatment for their MS. The patients thus get stuck with serious complications and they can not even contact the doctor if his/her clinic is shut down.
The Liberation treatment should be done under the guidelines set and applied carefully. Follow-ups are essential and thus doing it (where and when) is serious considerable option.
Even for patients who is traveling outside, make sure the hosting hospital is JCI approved (Gold-Standard Hospitals). As I researched some Medical tourism companies are doing such packages for liberation, but always stay on the safe side and ask questions.

I don't know where you are from but everything you said in your first paragraph is incorrect.

I must agree w/ Trish.
... Oh and what does FDA got to do with CCSVI ?

[mangio]

are you speaking for a medical tourism company?

[Trish317]

Hello,

The CCSVI procedure is not FDA approved and thus it can not be performed in the USA or Canada yet. All these doctors in the US are doing this procedures under the table, and once they get caught they shut down their operations. Majority of these doctors (or Hospitals) don't follow the guidelines and protocols set by Dr. Zamboni to save time and money, and patients end up getting the worst treatment for their MS. The patients thus get stuck with serious complications and they can not even contact the doctor if his/her clinic is shut down.
The Liberation treatment should be done under the guidelines set and applied carefully. Follow-ups are essential and thus doing it (where and when) is serious considerable option.
Even for patients who is traveling outside, make sure the hosting hospital is JCI approved (Gold-Standard Hospitals). As I researched some Medical tourism companies are doing such packages for liberation, but always stay on the safe side and ask questions.

I don't know where you are from but everything you said in your first paragraph is incorrect.

I must agree w/ Trish.
... Oh and what does FDA got to do with CCSVI ?

I don't know what happened to his post but he's definitely wrong. There are wonderful doctors here in the US performing the testing and treatment following protocols. There are wonderful doctors in Canada who want to perform the testing and procedure but can't.

We just need to keep reaching out and presenting the research to our local doctors. Performing a routine angioplasty is neither unsafe nor illegal.