Friday, April 9, 2010

Kuwait to offer controversial MS treatment

Avis Favaro, CTV News
Kuwait has become the first country in the world to offer a controversial treatment to all its patients with multiple sclerosis who have blocked veins in their necks.
CTV News has confirmed that Kuwait's minister of health has given interventional radiologists in the country the go-ahead to use the state-financed medical system to begin treating patients who have blocked veins and abnormal blood flow in their necks.
According to a theory proposed by University of Ferrara's Dr. Paolo Zamboni in Italy, and first broadcast on CTV's W5 last November, many patients with MS have blocked veins in their necks and chests. He calls the condition CCSVI, or chronic cerebrospinal venous insufficiency.
He theorizes that the blockage prevents blood from draining properly, sending it back to their brain, a problem that could contribute to the immune response that marks MS.
The theory has generated a lot of interest in Kuwait, which has high rates of MS, particularly among women.
In a telephone interview with CTV, Dr. Tariq Sinan, an interventional radiologist and an associate professor at the Department of Radiology in the Faculty of Medicine at Kuwait University says the health ministry will allow radiologists to begin treating MS patients who have CCSVI, starting next week, as part of an ongoing study.
The Kuwait News Agency KUNA also reported the development, quoting the chairman of the standing committee for co-ordination of medical research at the ministry, Dr. Youssof Al-Nesf, as saying: "The presentation meets the legal, moral and scientific criterions specified by concerned organizations, including the World Health Organization."
The decision is based on research by a team headed by Sinan who studied 12 MS patients in March. All of them had CCSVI and were offered what Zamboni has dubbed the Liberation Treatment. The treatment is a vein version of angioplasty, in which a small balloon is inserted into a blocked vein to force it open.
(No stents were used in the procedures, a practice some doctors around the world have tried and one that Dr. Zamboni does not endorse.)
Sinan says all of the patients saw improvements in their MS symptoms, with some noticing "dramatic" results.
"On one day, on March 3, we did three patients. Two had dramatic improvements on the table and started crying because they couldn't believe what they were feeling," Sinan reported.
He says patients with more severe MS reported fewer improvements, but did notice feeling less stiffness and more energy. Those with less severe disease, reported up to 90 per cent improvements in their fatigue and numbness in their hands and leg.
In one case, the patient couldn't see from one eye and started to be able to see," Sinan reported.
Sinan said he's confident the results he saw were not the result of the "placebo effect," a phenomenon in which patients fool themselves into feeling better by an otherwise ineffective treatment.
"If this is a placebo effect and I have MS, I would want this placebo effect," Sinan said.
"It is amazing the kind of improvements the patients say they have. It cannot all be attributed to placebo. Not being able to see and then being able to see, better bladder control, end of foot drop -- that cannot be placebo."
Last week, Dr. Sinan says a group of neurologists petitioned the country's ministry of health to stop the treatments. Their concerns – shared by other MS specialists around the world -- is that the link between blocked veins and MS has not been proven, and that the treatment could be dangerous. They have called for more studies.
But after review, and submissions from physicians and patients, the decision was to allow the treatments, which will be covered by the state-financed medical system.
The procedure will not be performed to treat MS per se but to treat only "improper blood flow" in the veins.
"So we say this is a vascular problem in the neck. Patients, when you dilate the veins, they feel better. We don't have to talk about MS or the link to MS," said Sinan.
Patients will be warned that the procedure is experimental, and the potential risks of venoplasty will be detailed in consent forms. Patients who agree to treatment will be part of an ongoing study that will be done in cooperation with a Kuwait neurologist.
The team will use ultrasounds and magnetic resonance venograms to scan the neck veins, as well as MRIs to track changes in the brain, including the appearance of MS-related lesions.
Doctors hope to treat 10 Kuwaiti patients a week, beginning next week.

LWDLIK- Great news. Though I did, initially, think it was another controversial MS treatment they might be offering and that really piqued my interest...

UPDATE- Found this 'Kuwait CCSVI=MS starting community to MS Liberation research and treatment' page on on Facebook [link]

13 comments:

  1. This is simply wrong... They basically agreed to do it cause of public pressure, yet nothing is scientifically proven. I asked about it for a friends daughter, and a neurosurgeon friend among others said that she should wait and see some tangible results first... truly sad that politics is getting evolved in medical procedures.

    But what is sadder, is that you have not found me an Eggs Benedict place yet :)

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  2. It's a tough call. I have a feeling there will be more than a few willing to try.

    Regarding the eggs you really need a slab of ham in there to make it really well :O) You're are not going to find that in a restaurant here.
    How about breakfast at Fauchon a nice asparagus omelette and yummy French pastries?

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  3. They are booked, 10 cases a week for the next year... and how did those people make the call to get the procedure? Well human nature and desperation can explain that, but letting them do it without the science to back it up is really sad...

    HAM?! 7aram :) and there are other meats that can be used... or no meats will be OK as well.

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  4. Found it!!! Eggs Benedict at Au Bon Pain (branches in Avenues above Dean and Deluca or Bida'a restaurants next to Tumbleweed)
    It was on the specials board today at Avenues, sounded good but I had the BBQ chicken pannini which was great (grilled chicken, jalapeno mayonnaise, caramelised oninons, BBQ sauce, fresh asparagus and cheddar cheese on focaccia:)
    Eggs Benedict- Smoked turkey, hollandaise sauce, egg on a bagel or bread of choice KD 1.500.
    Mission accomplished I hope :O)

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  5. As someone who suffers from MS I think it is a fantastic development. The risks of venoplasty are relatively low in comparison to the potential benefits. I am not surprised the neurologists are petitioning the government of Kuwait to stop funding the treatment as it encroaches on a disease that they have, up until now, had a monopoly over. Pharmaceuticals are NOT happy about CCSVI as it signals a potential end to a VERY profitable cash cow (i.e. MS patients are typically put on life long drugs that only reduce attacks by 1/3).

    For those commenters who suggested that offering this procedure is irresponsible, please open your eyes and read up more on CCSVI before posting negative comments about it!

    I am currently based in Dubai and will be enquiring about the possibility of having the procedure performed in Kuwait.

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  6. Hi Anonymous, Sorry to hear that you are also suffering from MS. I'm glad that you found the article interesting. If I can help in any way with your enquiries please feel free to email me LWDLIK@gmail.com.

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  7. Hi LWDLIK, thanks very much for your very kind offer. Do you know whether the treatment is only available to Kuwaitis or is it offered on a private basis as well for foreigners?

    From your response, I take it that you or someone close to you suffers from MS. I am sure you are already aware of this forum but just in case, here is a forum that is frequented by those who have undergone or are contemplating treatment for CCSVI: http://www.thisisms.com/forum-40.html

    My other half and I read it regularly and it gives us great hope!

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  8. Hi Anonymous, I have a niece who has MS and so was on the look out for new treatments. As she's a Kuwaiti this question of yours did not arise. Will try to find out for you. Pls send me yr email and I'll get back to you when I have something. Thanx for the MS forum on CCSVI I'm sure we'll find it very helpful.

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  9. Hi Anonymous, I can't believe the people you find on Facebook. Have msgd Tariq Sinan's FB page with your enquiry. Yes he's on Facebook! There is also a new link in the post above for his MS/CCCSVI Kuwait Facebook page so go check it out looks very interesting. Kim x

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  10. I know this is an old article, but do you know if this is still done? I am also UAE based but would be willing to travel to Kuwait if this procedure is available for expats.

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    1. Hi Anon from UAE, try the FB link above or try this email sam_kabbani@yahoo.com.
      Good luck!

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    2. Thank you for your fast response, I shall email now! Thanks again :)

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Always great to hear from you :O)