CCSVI Treatment for Primary Progressive MS?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
KLM
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CCSVI Treatment for Primary Progressive MS?

Post by KLM »

Hi sorry if Im replicating (I did do a search and go to the newbie section first).

My sister has Primary Progressive MS, I have just been to see a consultant who does CCSVI, however he said he had little experience of doing CCSVI on primary progressive MS, although they have had some positive results for people with other types of MS, he had only done one operation on one patient with Primary Progressive MS and it had not not made any positive difference to the patient.

My sister has had MS for 14 years and has been so brave, CCSVI was our one hope, but its very expensive, it would be great to hear if CCSVI had benefited other patients with primary progressive? Or if other people with Primary progressive MS have tried it and it hasn't worked we also would like to hear, so my sister can make an informed choice.

If this has been covered elsewhere please point me in the right direction.

Thanks Kat
vesta
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Re: CCSVI Treatment for Primary Progressive MS?

Post by vesta »

Greetings:
I think PPMS originates primarily in degeneration of the spine, not a "reflux"of veinous blood into the CNS, and angioplasty would be a mistake. See my Thisisms.com post "Progressive MS and the Spine". Dec 2, 2014 under General discussion. upright doc discusses the issue on CCSVI-CCVBP. A good chiropractor with an advanced Cox table could well help your sister. upright doc can answer your questions. (Robni is a good example of someone with PPMS who is being treated with a Cox table after consulting with upright doc after unsuccessful angioplasty.)

Best regards, Vesta
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Robnl
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Re: CCSVI Treatment for Primary Progressive MS?

Post by Robnl »

Well, my angioplasty in 2010 did help...cognitive and mentally. But not physically.
So, in my opinion; angio could help, but only partly....there is more!
KLM
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Re: CCSVI Treatment for Primary Progressive MS?

Post by KLM »

vesta wrote:Greetings:
I think PPMS originates primarily in degeneration of the spine, not a "reflux"of veinous blood into the CNS, and angioplasty would be a mistake. See my Thisisms.com post "Progressive MS and the Spine". Dec 2, 2014 under General discussion. upright doc discusses the issue on CCSVI-CCVBP. A good chiropractor with an advanced Cox table could well help your sister. upright doc can answer your questions. (Robni is a good example of someone with PPMS who is being treated with a Cox table after consulting with upright doc after unsuccessful angioplasty.)

Best regards, Vesta
Many Thanks Vesta I will have a read and my cousin is a chiropractor so that is a very positive thing to read so far :-)
KLM
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Re: CCSVI Treatment for Primary Progressive MS?

Post by KLM »

Robnl wrote:Well, my angioplasty in 2010 did help...cognitive and mentally. But not physically.
So, in my opinion; angio could help, but only partly....there is more!
And thank you Robnl, that is also useful to know as my sister says her memory is now being affected. So any improvements in her condition who be wonderful but its good to be realistic and know what the limitations are.
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Robnl
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Re: CCSVI Treatment for Primary Progressive MS?

Post by Robnl »

If you live in the us, near NY, dr sclafani is the most experienced ccsvi-doc...
KLM
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Re: CCSVI Treatment for Primary Progressive MS?

Post by KLM »

Robnl wrote:If you live in the us, near NY, dr sclafani is the most experienced ccsvi-doc...
Thanks Robnl, but my sis lives way over in Ireland! :-)
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Re: CCSVI Treatment for Primary Progressive MS?

Post by frodo »

KLM wrote:
Robnl wrote:If you live in the us, near NY, dr sclafani is the most experienced ccsvi-doc...
Thanks Robnl, but my sis lives way over in Ireland! :-)
Anyway you should post your concerns in the Dr. Sclafani thread. He will know about the PPMS situations for sure.
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Re: CCSVI Treatment for Primary Progressive MS?

Post by KLM »

Ok Thank you Robnl I will
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Re: CCSVI Treatment for Primary Progressive MS?

Post by Cece »

Here's an abstract from Albany Medical Center:
http://tinyurl.com/b6t9mrv
Quote:
213 patients were treated during the study period. The study population consisted of 192 patients (mean age 48.5 years; 34% male and 66% female) for a 90% response rate (mean response time 109.4 +/− 39.6 days). MS subtypes included relapsing remitting (RRMS) (n=96), secondary progressive (SPMS) (n=66), and primary progressive (PPMS) (n=30). 189 patients (98.4%) underwent angioplasty (PTA) and 3 patients underwent PTA with stent placement (1.6%); 2.2 vessels were treated per procedure. In the 192 patients, the mean PHS and MHS changed from 43.2 to 52.4 (p<0.05) and from 57.1 to 65.2 (p<0.05) respectively. PHS/MHS improvement was seen in 77%/74% with RRMS, 59%/50% with SPMS, and 77%/70% with PPMS; these changes were all significant (p<0.05). However, SPMS patients were less likely than RRMS and PPMS patients to improve their PHS (p<0.05) or MHS (p<0.05). PHS/MHS improvement was seen in 74%/71% with <5 yrs since dx, 78%/78% with 5-10 yrs since dx, and 66%/60% with >10 yrs since dx; these changes were significant in all groups (p<0.05). However, years since diagnosis was not associated with change in PHS (p=0.239) or MHS (p=0.071).
There were 30 patients with primary progressive MS in this prospective nonrandomized study. Everyone was treated for CCSVI. Physical health improvement was seen in 77% of the PPMSers and mental health improvement was seen in 70% of PPMSers. Both RRMS and PPMS fared better than SPMS.
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Re: CCSVI Treatment for Primary Progressive MS?

Post by KLM »

There were 30 patients with primary progressive MS in this prospective nonrandomized study. Everyone was treated for CCSVI. Physical health improvement was seen in 77% of the PPMSers and mental health improvement was seen in 70% of PPMSers. Both RRMS and PPMS fared better than SPMS.
Thank you Cece, that has just brought me to tears, but for the best possible reasons, That is fantastic to hear that 77% percent of improvement in CCSVI in PPMS, I will be passing everything i learn from the forums to my sis, unfortuately she can't type nor read any more,

I think the option of trying a chircoprator or cranial osteopath to start might be a good start to see if it can bring improvements as its cheaper and something she hopefully an access at home, and access fairly immediately, while I do more research here. travel and accomodation for treatment will in themselves be complicated, but at least it sound like she has some options, thanks again. No one in he medical profession that is directly working with her have told her any of this... much appreciated, very best wishes. K
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Re: CCSVI Treatment for Primary Progressive MS?

Post by Cece »

Your sister has my best wishes as she fights this disease. I like the Albany study because of the strong results (77%) but also because it was conducted by Dr. Siskin and Dr. Mandato who have done hundreds of CCSVI procedures.
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Re: CCSVI Treatment for Primary Progressive MS?

Post by KLM »

Thanks again Cece it really means a lot to read this and have some positive news to tell her , all the best to you to x
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Re: CCSVI Treatment for Primary Progressive MS?

Post by eric593 »

In reference to the link that Cece provided, I don't even think the Albany group is performing CCSVI procedures any longer, I can't find any reference to CCSVI on their website anymore. I believe, while they may have found short-term improvements in some of their patients early-on on self-reported measure (which are not very reliable and prone to placebo), they have not found sufficient evidence that CCSVI treatment helps MS to continue treating patients. I think their clinical trial was cancelled as well. You might want to contact one of the doctors there and ask him/her directly what their impression of CCSVI and treatment are now after a few years and many more patients treated. They might have a different view than they did when they published that report.

Sorry to be a downer, but it is important to consider ALL information before undertaking the risks and costs associated with the procedure, especially on someone that is already ill. My advice is to keep an open and skeptical mind when you read information and read ALL perspectives and information before considering it. There are cases of serious harm resulting to individuals who undertook the procedure, including cases of death. If there is any merit to it, which many studies dispute, it is still in the experimental stage. Evidence of any sustained benefit from the procedure, including quality of life self-reported improvements, appears to be waning and not growing, as more time passes and more information is gleaned.
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Re: CCSVI Treatment for Primary Progressive MS?

Post by 1eye »

I agree with Eric that it is important to consider all information. There has been a concerted campaign to discredit any information that disagrees with the view that CCSVI is of any benefit to people who have MS, however I have not seen any evidence that "evidence is waning". Evidence either exists or does not, it does not change like the moon. Activity in gathering evidence is hard to gauge. There certainly is less money being spent in high places (except for press releases), but I think the most intelligent and courageous researchers have not slowed down. There is considerable money being spent on CCSVI research by people who are not afraid to go where the investigations lead. The papers being published may not even reference CCSVI because of the bad odour of the campaigners, but the facts they are uncovering must be acknowledged.

As examples, user 'brocktoon' (Sethi et al) 2014 paper and MRI research has shown that people with MS are more likely to have jugular stenoses and low blood flow in their jugulars, and there has been recent interest in NPH (normal pressure hydrocephalus). It is not obvious what the connection to CCSVI from NPH is, unless you consider that jugular drainage is crucial to cerebro-spinal fluid drainage, and that MS symptoms may include NPH as a subset. NPH sufferers have symptoms that are all present in MS. The enlarged third ventricle is common to both, and can be treated by improving cerebro-spinal fluid drainage.

The fact that the Albany group cancelled their intended trial has more to do with politics than medicine. It was being conducted in Canada, and it was not American enough for the FDA. I was treated for CCSVI in Albany, had many improvements, have some still, and would do it again, under the right circumstances. Dr. Sclafani was not doing the procedure then.

The deaths have been used irresponsibly as a propaganda tool, and neither of them were very recent or the direct consequence of the procedure. In one case it was a trap waiting to be sprung (use of stents, blood thinners, and pressure changes on an aircraft contributing to an existing blood condition and probably causing an aneurism unrelated to CCSVI), and in the other case it was more like refusal of the Canadian medical establishment to provide medical assistance in the event of a procedure complication because the procedure took place out of the country.

I have "SPMS", which the Albany report said was a worse bet than either "RRMS" or primary progressive. My brother was treated for HPH (high pressure hydrocephalus) with a shunt in his jugular vein nearly 50 years ago. He has grey hair, but no sign of HPH.

You will possibly hear more (possibly a good variety) on this forum from other CCSVI patients. Your choice. Good to be informed.
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