Last reply 6 years ago
Has anyone acually had CCSVI?

This continues to interest me, has anyone here actually had CCSVI England or abroad, I am yet to read of any real success stories, anyone had the jugular Dopla test?

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DJDsouza
6 years ago

I know of people that have had the treatment but in my opinion both showed no visual improvement.


chueykooh
6 years ago

Hi loulou, there is much debate weather vein restriction particularly in the jugulars is a cause of MS or in fact a result of MS. My personal opinion is that is a result of MS if there even is any correlation. A lot of people that have MS do not need CCSVI because they’re blood flow is ok and a lot of people that do not have MS have constricted veins and need CCSVI, so there doesn’t seem to be any “smoking gun” pointing in either direction. I know it’s expensive and insurance doesn’t pay for it and there are risks involved in the procedure that could lead to death. There are clinical trials going on now for it in the US so it will be interesting to see what they’re findings are.


jenko1972
6 years ago

Hi

I managed to get my local hospital to check out the veins(or was it arteries?) in my neck using an ultrasound machine. The advantages of having a doctor that didn’t know much and would say yes to anything. I was told I was the first person in my area to ask for such a thing. Anyway they found only a really small abnormality between the left and right side of my neck. The report said it was absolutely nothing to be concerned about. The upshot was in the meantime I had read that any surgery carried real risks so I gave up persuing this path.
Hope this helps.

Neil


jjll
6 years ago

My wife had the procedure to correct CCSVI performed in October 2010. We saw immediate and dramatic improvement in her MS symptoms. A year later, some of her symptoms gradually returned (but not as severe). She’s thinking about having the procedure done again. It is a safe, minor procedure done under mild sedation and it takes 1 to 2 hours.


loulou
6 years ago

JJLL can I possibly ask where she had the proceedure done, was it with the essential health clinic?
It is nice to hear some possitivity regarding CCSVI, I wonder why some symptoms have returned, does she know of any real success stories? I wish her great results if she has it done again


chueykooh
6 years ago

About half of people that have this procedure done will re-stenose within a year to 18 months. I have also wondered why this procedure doesn’t stop all of the symptoms of MS. It seems to help with dizziness, heat intolerance, and sometimes cognitive issues, but I have not heard of much other symptomatic relief. I wonder if CCSVI is a monster all of it’s own and people with MS feel better because like diet it addresses other health issues that are underlying? I am very curious to see clinical trial data on this. I would have it done if it is proven to be linked to MS but for me there is still too much unanswered. There are risks also, a blood clot could kill you. I’m not sure at this stage in my MS I would be willing to risk some of the possible complications. I am on the fence about CCSVI but I wouldn’t dismiss it either.


cameron
6 years ago

My friend had it and it IMMEDIATELY removed her severe fatigue. That has lasted but she has since developed neuropathic pain. It’s been suggested that this and some other symptoms could be relieved by orthodontic work (extensive) because scans and xrays have shown misalignment of the jaw (TMJ syndrome)which is causing pressure on some nerves and affecting the whole body. She’s been told this is not a new problem and she wonders whether the CCSVI brought it to the fore. This is highly inconvenient but she points out that before CCSVI she didn’t have the energy to do anything at all so overall she remains very satisfied.


dagmar
6 years ago

I have had CCSVI treatment twice at the Frankfurt University. It is an amazing procedure and I could do so much after the procedure and walk so much.
I onlu had venoplasty the first time and this only lasted 3 mos in 2010. I went back in 2011 and I had valvoplasty performed as the valves in MS patients are often defunct and he enlarged the valves in the jugulars and I was okay for a year yet I do think my blood is not flowing as well now but it is a big deal to get the proper doppler in Canada. I will either go back or go for a doppler shortly and this will tell me what I am dealing with as originally I had obstructions of 80% and 95 % of my jugulars and even if this did not effect my MS I wanted it fixed. Luckily it benefited my MS.


jjll
6 years ago

In reply to your inquiries, my wife, LL (Love of my Life) had the procedure done at Albany Medical Center Hospital in Albany, New York because, at that time, there was no facility in Pittsburgh, PA performing the procedure. We drove to Albany in October 2010 – LL had the procedure performed (2 hour procedure The Interventional Radiologist (IR)(GREAT DOCTOR)had previously admitted to us(by phone interview) that 33% of her patients saw little to no improvement post procedure, 33% saw moderate improvement and that 33% saw dramatic improvement post procedure. We were lucky – we saw MAJOR improvement immediately. Fatigue – GONE. Numbness – GONE. Spasticity – GONE. Urinary incontinence – GONE. MS Hug – GONE. Joint pain -GONE. Sexual numbness – GONE. The day after the procedure, we walked the equivalent if 14 city blocks at Niagara Falls and later we went dancing with her wearing her stiletto heels for the first time in a while. We wish that we could claim that CCSVI treatment is a permanent cure – but it wasn’t. We suspect that LL has had restenosis and will require CCSVI treatment again. Her numbness and mild fatigue have returned (to a lesser degree, and we’re considering having this simple procedure done again in Pittsburgh – now that it is now available here.

JJ


dovechick
6 years ago

CCSVI is the CONDITION not the treatment. The treatment for CCSVI is called venoplasty although a lot of people call it angioplasty. Angioplasty usually means treatment to an artery and we are talking about treatment to a vein hence venoplasty. Venoplasty/angioplasty is as least as effective as the Disease Modifying Drugs prescribed to some people with MS, a lot less costly and a lot safer. Some 59 people have died from taking Tysabri (about 90,000 people take it) only three people have died from CCSVI treatment (because they did not get adequate aftercare and suffered from blood clots) out of about 30,000 treatments. If you do the sums you will see that 1 person in 1500 will die as aresult of taking Tysabri whereas one person in 10,000 has died as a result of CCSVI treatment.


jenko1972
6 years ago

For now then I’ll stick to my rice and cabbage.


chueykooh
6 years ago

Is there a higher or lower success rate for CCSVI between RRMS vs SPMS vs PPMS patients? I’m wondering if that might show some clues as to why some people notice improvements and some don’t.


dovechick
6 years ago

Chuekooh, whether people are RRMS or PPMS or SPMS does not seem to come in to it. There have been some wheelchair users have recovered completely and some people who only had mild symptoms have not noticed any improvement. The most common improvements have to do with fatigue, brain fog, bladder/bowel control and temperature regulation. There are a lot of questions that still need to be answered and the causes of vein narrowing could be at the bottom of the reasons why some people get good results and others don’t. There is some suggestions that some people might be suffering from vascular infections which might contribute to slow brain perfusion. See here for a summary explanation of that point: https://www.facebook.com/notes/ms-ccsvi-uk/protomyxzoa-rheumatica-a-protozoa-identified-by-dr-stephen-fry/10151918909540713


loulou
6 years ago

Dovechick, I guess you have just put the willys up anyone taking Tysabri now !!!

Chueykooh, thats a point actually, am going to look into that one

JJLL what a lovely comment about your lovely wife, can I ask was the proceedure expensive and will you have to pay again, the Essential Cealth clinic here am sure are ripping poor patients off! very wary of them indeed!


chueykooh
6 years ago

@dovechick Thank you for the link, there is a vast amount of speculation about the causes of MS. Many doctors believe the lyme bacteria in the Borrelia genus cause MS and the link you posted seems to go with the hypothesis of an infection of some kind. I am going to friend request you so I can send you a link to an article I think you might also find very interesting because at this point this link would be getting off the topic but I think you would like it. 🙂


dovechick
6 years ago

Regarding the cost of CCSVI treatment in the UK. I think if you compare the cost of angioplasty through private health services such as BUPA for example you will see that the cost of treatment is much the same where ever you get it. Private health care in the UK is expensive. I think that you can get the treatment in places such as Belgium and Poland for between £4000 and £6000 pounds. With regards to EHC the surgeon who performs the treatment is a well respected NHS vascular surgeon who would like nothing better than treating people on the NHS, however he has been forbidden by his Medical Director, to even refer patients that have consulted him for the ultrasound scan that would diagnose any problem.


gpeps
6 years ago

This is a fascinating topic. My knowledge of CCSVI and related venoplasty and angioplasty treatment is extremely limited, so thanks to @dovechick for her insight.

I do however think this conversation needs balancing. There have been a number of unfortunate incidents with Tysabri, however it’s important to state that clear links have been identified and progress made. There is now a JC virus test which helps determine whether you are JC virus positive or negative. As far as I am aware, all patients who have developed PML have been JC virus positive. Other at risk factors have also now been identified.

I am personally receiving Tysabri treatment so know more about the risks and benefits. I would advise anyone to speak with their neurologist about any concerns you many have and the treatment options available to you.

Thanks
George


jjll
6 years ago

LOULOU: Our medical insurance covered everything except our travel & lodging. The procedure was billed as “venoplasty of vein stricture”. Lodging was discounted at the hotel adjacent to Albany Medical Center Hospital because LL was considered to be an (out)patient. We inquired as to the cash price of the procedure for our MS friends who had no medical insurance and we were told that it would cost US$6800 at that time.


dovechick
6 years ago

@gpeps… My intention was not to put people taking tysabri in a state of panic. Neurologists know what they are doing and hopefully the JC virus test will reduce the number of people affected. Rather what I was hoping to do was put venoplasty for CCSVI in context. Many people have been told by their doctors that it is dangerous, in actual fact it is a lot safer that most of the DMDs and it is even safer than most angioplasty operations for other conditions, mainly it seems to me because the patients are younger and more cardio fit than the normal people receiving angioplasty. The sad thing about this is that the only reason pwMS are not treated on the NHS for vascular insufficiency (which CCSVI is) is because of their Multiple Sclerosis diagnosis.


mmmark
6 years ago

Great conversation here. Thanks all!


tiltawhirl
6 years ago

Hi all! 🙂 SPMS Dx’d in 2011, but symptomatic for almost 2 decades, looking back on my history. Past 6 years walked with a cane and used a chair for long distances. Extreme fatigue, foot drop, pins and needles in both feet and hands, extreme depression, bouts of incontinence, heat intolerance, balance and co-ordination problems, brain fog, trouble with my swallowing reflex, and lesions on the brain in multiple MRIs seperated by time and space meeting the McDonald criteria for Dx of MS. No spinal lesions. I had never taken any disease modifying drugs, and had been following the progress of the whole CCSVI treatment over the past few years. Since I was getting worse and there was no other options, I decided to give the procedure a shot. I went in as an atheist and skeptical of a positive outcome. Boy was I shocked when I started to feel my legs normally again ON THE TABLE! Let me be clear that I am aware that my results are not typical, and certainly on the best outcome end of the spectrum. It is 3 months post treatment and all of my improvements are holding. The only symptom that hasn’t changed is trouble with swallowing occasionally. But otherwise I couldn’t be happier with my outcome. Proof is in the pudding, and I can verify 100% that my results are not some sort of placebo effect. If you have any questions please let me know. All the best to everyone. 🙂

http://www.youtube.com/watch?v=kiOteGvgoBI

http://www.youtube.com/watch?v=gnfu9O1xL1s

tilt


loulou
6 years ago

Hi Tiltawhirl
I have watched your videos with much interest as this is a subject I am so very interested in,
would you possibly be able to tell me how much this treatment cost you?
Yours is the first real story I have “watched” and thought “wow”


tiltawhirl
6 years ago

Hi Loulou,
One of the reasons I chose the Doctor that I chose was because he had specific experience in the use of IVUS(intra-venus ultrashound) which allows the physician to get a better picture of what is going on inside the vein, which venography alone sometimes does not allow. The angioplasty was $7k which included a pre-procedure consultation and complete assesment with dopler ultrasound. The use of IVUS was an additional $2k, but absolutely worth it. IVUS allows the physician to choose the correct size of balloon based on internal measurements of the vein wall diameter. This allows for complete treatment of the vein without ‘over-stretching’ and causing potential damage to the vein walls. So in total the cost was $9k including tax. I am Canadian and since the procedure is not available here I paid out of pocket. You have to factor travel and accomodation costs into the equasion as well. For the record, I have no financial ties to my physician or the company that provided my treatment. I would recommend being thorough in your research. Anyone that tells you it is a cure and that for sure you will have benefits is to be avoided. About 30% of the people that have the procedure see positive results. It’s too early to know why this is, and as I mentioned, I expected no results. I just happened to be one of the fortunate ones.

tilt


2bonnie
6 years ago

Hi Tiltawhirl,

I’m so glad that your CCSVI venoplasty has worked for you. If you don’t mind me asking, where did you have the procedure done?

Many thanks,
Bonnie


tiltawhirl
6 years ago

Hi Bonnie,
Although I am posting this in a public forum, I want to make it clear that I am not pushing or promoting any one specific physician. It’s important that anyone considering treatment do their own research first before moving forward, since results are mixed, as I have stated before. That said, as mentioned I have no financial ties to my physician what so ever, and this recommendation is from my own personal experience.
Dr Sclafani is located in Brooklyn NYC. I went with him because of his experience in the number of procedures, combined with his knowlege and use of IVUS when determining balloon size for venoplasty. Also, he is VERY accessable as a physician. It isn’t uncommon to send him an email at 9pm and to have him respond within 15minutes! Dr Sclafani is the ‘real deal’ and always emphasizes that he does not treat MS, but CCSVI. He is also very upfront about the potential side effects or complications, as well as stating that it does not work for everyone. So he never made any promises that were motivated to get more patients through the door and on the table. Now after the procedure he is very good with follow-up and is still available to answer any questions whenever I need or want. You can’t put a price on that kind of accessability IMO.

If you have any other questions, please let me know. I am happy to answer.
All the best as you continue your quest for answers and potential relief from this horrible disease.

kind regards,
tilt


tiltawhirl
6 years ago

Edited to add: I spent the morning riding the 2 largest coasters in Canada. Hooray, I didn’t stroke out!;) Leviathan x 3 and Behemoth x 10. I am now off of the anti-coagulants that were prescribed post-procedure to prevent clotting and/or thrombosis, so it looks like I am in the clear from that perspective.

tilt


loulou
6 years ago

Tiltawhirl……”riding the 2 largest coasters”??? you dont mean surfing surely!!!!!!!


tiltawhirl
6 years ago

lol, nope!

See for yourself

Leviathan

Behemoth

Good times!

tilt

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