This Is MS Multiple Sclerosis Community: Knowledge & Support

After reading a post, I decided to creat a section for the Medical Tourism Hustlers that say for $18,000.00 you can get on a list to get tested and have angioplasty done in India.

My questions are,

Why so much money?

What Doctor doing the research in CCSVI trained these Doctors in India?

Have they ever done a stent in a jugular vein?

Have they ever used the doppler protocol from Dr. Simka to find CCVSI?

With every "cure" here comes the hustlers.

Buyer beware.

That is SCARY to consider. Buyer beware big time...

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RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

Where did you see the Indian 'offer'Mohzi? Just curious!

Camilla

Camilla,

I have seen two recent posts (Dec 3 and 5) giving a travel agent's name, phone number, and web address that arranges tours to India in response to people looking for locations to have CCSVI diagnosed / treated.

These marketing ploys are a natural consequence of the interest in CCSVI. I kept my MS mostly a secret for years because of people pitching me one "cure" after another, all for a price.

I have initiated contact with the person mentioned about the medical tourism, because my first thought was to go to India for the surgery.

Medical tourism is big in Canada because we have very long waiting lists for surgeries such as hip replacement, knee replacement, even coronary by-passes and such. Many people go to India, Costa Rica, etc., because they can't bear the pain, or disability any longer.

If you are lucky enough to have insurance in the US, you can get Dr. Dake to do it. I suppose you would just have to pay for flight and accommodation. If you don't have insurance, it is reportedly $80,000. Maybe I have no sense of value, but I think that is more than a bit excessive for a day surgery.

Dr. Simka will cost $5,500 CDN - plus flight, hotel, etc. All told, you would be looking at at least $10,000 if you took a companion.

The India gig covers air fare for the patient (and I believe, a companion), a week's accommodation at a 5 Star hotel (ultra-luxury), visas, personal nursing 24 hours a day (in a hospital room that is actually a private luxury suite), travel insurance, medical complications insurance, transfer from your home to airport and back, transfer in India, surgery - for $18,000. I don't see that as being a scam, personally. Beach front resort in India, or winter in Silesia.... Tough choice.

Another thing is that the medical tourism in India funds free treatments for Indians who cannot afford it. If I do go to Poland, I will probably offer to pay for a Pole (with MS) who cannot afford it - not because I am rich, but because it's not always about money.

The Indian doctors are some of the best in the world - trained at Harvard, Guy's Hospital in London, Stanford, etc. The Apollo Group of hospitals in India is rated higher than Canadian or American hospitals by the WHO. I'm pretty sure that any vascular surgeon worth their salt could do the op. Indian tourist hospitals also have state-of-the-art equipment - better than anything we have in Canada (7T MRI, etc.).

I have been tentatively accepted by Dr. Simka, but I am still considering India.

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My name is not really Johnson. MSed up since 1993

I think it's important to provide the actual wait times experienced by Canadians so people can judge whether delays are different from their region. All wait times are public information, by province. You can search for BC's wait times by Googling "bc wait lists."

For neurosurgery at Vancouver General hospital (I couldn't see a better classification for this type of surgery), non-urgent procedures, wait times vary from half a week to 16 weeks, depending on your surgeon. These are average wait times based on the previous 3 months of data. You can find these times listed here: http://www.swl.hlth.gov.bc.ca/swl/swl_d ... &IEvent=NE

I think the more important issue is we haven't confirmed whether this procedure will be done in western Canada anytime in the near future. We have found a location (fee-based) in Vancouver for the testing -- it's the treatment piece we still need.

In my opinion, I have read lots of accounts on here where people have made repeated visits and frequent contact with Dr. Dake, so I think proximity and access to whoever does the treatment seems to be paramount.

Yeah I think I'd pass on this one too... I wouldn't even enquire about it.. They may just be fishing and next thing you know, your identity is stolen.

Although I have to admit that every Indian Dr. I've ever encountered have struck me as the most caring and compassionate folks...

Hey, if Dr. Dake gets the trial going quickly, we just might get treated for FREE...

Your first paragraph somewhat plays into my ideas surrounding costs and medical tourism. The $2Gs for testing at False Creek will not be covered (perhaps retroactively, with some hard lobbying). There will be a tax deduction, but that has a limit, and I can't really work much anyhow, and don't make tons of money. Hopefully that will change.

I don't particularly feel the need to get scanned before seeing Dr. Simka, as Zamboni has found stenosis in essentially 100% of those with CDMS. I have been CDMS for 16 years, and frankly, I can't wait for the ethics committees, etc., to get around to it. Along with my own observations, I am 100% with the stenosis idea. I think that I even know where they are.

Further, my GP (since fired) would not even do a requisition for scanning. I am working on alternatives through connections.

To the second paragraph - this is a big concern for me as well. What if something goes sideways? I guess medical complications insurance can help, but who will we turn to in Vancouver, or Victoria if a stent causes a problem? Who will monitor our blood viscosity if we need to be on heparins?

I think that we need to get away from the MS thing, and approach it as a venous thing. I am going to a drop-in clinic this week and and going to complain about the possible thrombosis in my leg, and ask for a referral to a vascular specialist. Once I get there, I will ask about my jugs. If I get nowhere with that, I'm off to Poland, or whatever. I would much prefer to stay close to home to have it done though. Stanford is "close", but I don't have $80Gs

As to the wait lists, I only commented on that from what I have heard in Canadian media, and from people I know. I know as well as you must that our health system has been gutted, and is just limping along. It may well be possible to get neuro-surgery fairly expeditiously, but the more common the procedure (and less life-threatening) - knees, hips, etc., the longer the wait. I personally know a few people that need hips and knees, and they are waiting. That is where the medical tourism comes in.

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My name is not really Johnson. MSed up since 1993

IMO medical tourism has it's place. In CCSVI it is way too early, unless trained by Dr. Zamboni, Dr. Simka, Dr. Zivandov and a few others. CCSVI very difficult to read and only a few people in the world are trained to read it.

Therefore, I would have alot of questions to ask. Medical Tourism will come for CCSVI, but I would personally be very hestitant, unless it was one of the doctors with lots of experiance that has been working with Dr. Zamboni. Even then I could care less about the five star hotels and beaches mentioned in the medical tourism post.

I would agree with that mohzi.

I certainly have a lot of questions to ask - even of Dr. Simka. I would so much prefer to stick close to home.

I am going to call Ms. Sayeed tomorrow (her office is just a few miles from me), and ask her a lot of questions. I want to know about what the Dr.s know. The thing that comes to mind, is that Dr. Simka's Doppler protocol has been given to a private pay clinic here in Vancouver. The first person is being scanned tomorrow here. So, if they can learn, the Indians can learn. My understanding is that it is the scanning that is esoteric, more than the surgery. As I wrote before, any vascular surgeon worth their salt ought to be able to do angioplasty/stenting.

I am calling Ms. Sayeed to find out who to talk to in India, and what they know. I would not buy her package, as I couldn't give a fig about 5 Star either. A clean guest house suits me much more. I would also want Business Class seats for a flight to India, and not cattle class. I have priced out tickets for less than $4,000 to go around the world Business Class, stopping in India (or Poland, or both...). My wife and son will be going with me - whether Poland, India, or here in Vancouver.

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My name is not really Johnson. MSed up since 1993

I agree Indian doctors can be great!

Mohzi's point about the training is valid though. I wonder if they use the doppler or MRV -- and while they can definitely learn, I question how easy it is to 'see' stenosis. Zamboni himself thinks the technician needs to try out the doppler on 100 normal people -- before an MS person, so obviously complex.

I am in the UK, so India is a fairly viable option for me. Do let me know what Ms. Sayeed says about the docs! Will also use some of my own contacts in London and India and get back.

Camilla

Thank you Johnson, I would appreciate hearing the outcome of you conversation with Mrs. Sayeed.

Jewelia

My opinion only........

If you want a holiday, India is a good place go. I can recommend it.

For CCSVI health issues, I'd be talking to the likes of Zamboni, Simka and Dake - not a Canadian travel agent.

Doppler readings and CCSVI assessments/techniques are more of an art than science, as I have learned from my CCSVI experiences in Ferrara, Melbourne and Katowice. It will take a while before the Indians master it, unless one of the above 3 gentlemen is inclined to set up a visiting clinic there.

Phil

I've bumped this up because Johnson derided my comments in a new related thread.

Johnson - it's OK by me if you and others want to spend heaps going to India. I was only trying to be helpful. As I've outlined, if people like Zamboni, Simka and one of Melbourne's leading vascular surgeons found difficulty drawing a line through my CCSVI problems, I wouldn't expect much in the short term from India.

Phil

Phil - I can't see where I derided comments made by anyone, but I am sorry if that is your perception.

I did write that I thought that it was "myopic (short-sighted) and unfair" to accuse someone offering an option to the difficulty (for some of us) in finding diagnosis and treatment of being a "hustler" and a "travel agent", and I stand by it. That is my opinion. I believe those comments to be more than derisive, I believe they verge on slander. Again, I'm not saying that is slander, I am just relating my own feeling about it. I'm not sure if that is the comment that you refer to (or even if it was you that made the "hustler" comment), but I don't feel that I have treated anyone with derision. I am always careful to offer my beliefs and understandings as my own, and I am always careful in my language to be diplomatic and equitable.

Let us not get into arguments about any of this, please. We all want relief, and I believe that we are all working towards finding avenues for that relief. I have the utmost respect for any who treat others with respect, and that includes you Phil.

Peace.

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My name is not really Johnson. MSed up since 1993