CCSVI Treatment for Primary Progressive MS?

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CCSVI Treatment for Primary Progressive MS?

Postby KLM » Mon Dec 15, 2014 9:15 am

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
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Re: CCSVI Treatment for Primary Progressive MS?

Postby vesta » Mon Dec 15, 2014 10:28 am

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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Re: CCSVI Treatment for Primary Progressive MS?

Postby Robnl » Mon Dec 15, 2014 10:42 am

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!
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Re: CCSVI Treatment for Primary Progressive MS?

Postby KLM » Mon Dec 15, 2014 11:20 am

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 :-)
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Re: CCSVI Treatment for Primary Progressive MS?

Postby KLM » Mon Dec 15, 2014 11:25 am

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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Re: CCSVI Treatment for Primary Progressive MS?

Postby Robnl » Mon Dec 15, 2014 1:00 pm

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

Postby KLM » Tue Dec 16, 2014 7:14 am

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?

Postby frodo » Tue Dec 16, 2014 1:14 pm

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?

Postby KLM » Tue Dec 16, 2014 2:28 pm

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

Postby Cece » Wed Dec 17, 2014 8:19 am

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?

Postby KLM » Wed Dec 17, 2014 2:33 pm

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?

Postby Cece » Thu Dec 18, 2014 1:11 pm

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?

Postby KLM » Thu Dec 18, 2014 5:00 pm

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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