Search found 2068 matches

by mrhodes40
Mon Jan 18, 2016 6:38 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Notes from CureIous' at Stanford
Replies: 353
Views: 69320

Re: Notes from CureIous' at Stanford

Wow Mark! I am so sorry to hear that your stent moved. I am glad that you have good help locally and hope that if a retrieval is necessary it is handled easily. I am also sending good thoughts and prayers your way. I long for the day when treatment, monitoring, and review of our status is unquestion...
by mrhodes40
Fri Nov 04, 2011 10:27 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!
Replies: 93
Views: 12254

Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

yes absolutely; Tucker's stuff is awesome and adds to the theoretical basis for the CCSVI hypothesis--with time things will be made clear, but it will take dedicated researchers and time to really solve it. congestion vs reflux may be a moot point, if the real problem is an intraluminal defect like ...
by mrhodes40
Fri Nov 04, 2011 8:25 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!
Replies: 93
Views: 12254

Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

Cece said "If the reconstructed jugular was the size of my right jugular, that might work all right on its own." This is a real area where CCSVI doctors are challenging the status quo and really trying to find answers re: what is really necessary. Traditionally it was thought that since the cerebral...
by mrhodes40
Thu Nov 03, 2011 2:53 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!
Replies: 93
Views: 12254

Re: Mayo Clinic Vein Reconstruction Surgery for CCSVI !!

This is marie- Hi! :-D I am rarely here these days but sammyjo sent me a link to this thread and I thought I'd add something re:vein replacement after I read it. VEIN RECONSTRUCTION IN THE LIVER https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1422571/ In this one people with neck cancer had radical nec...
by mrhodes40
Tue Apr 26, 2011 4:31 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Are patients distorting the science?~Marie Rhodes
Replies: 32
Views: 6554

Well put Cheer--thanks. I am rarely here because I am busy and things like this thread are a time sink, but I do want to clarify a few things. First, my op-ed was intended as a comment on how patient involvement has changed the current discussion. It wasn't a dissertation, nor do the rules for such ...
by mrhodes40
Wed Aug 18, 2010 8:22 pm
Forum: Regimens
Topic: Marie's Stents CCSVI
Replies: 180
Views: 38832

It's OK Laura. :D I agree that the big problem is the fact that people do not have the details of what to do yet and others are demanding double blind trials..its amazing. it is like demanding a double blind trial of a drug still in development to see if development should continue. :?
by mrhodes40
Sun Aug 08, 2010 9:00 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: DrSclafani answers some questions
Replies: 8342
Views: 1638276

What an incredible career move! Thank you very much for making such a sacrifice for all of us folks with MS. I hope you find a good place to practice medicine Dr Sclafani! Marie
by mrhodes40
Wed Aug 04, 2010 5:36 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Notes from CureIous' at Stanford
Replies: 353
Views: 69320

I am really ha[ppy for you Mark! What an incredible picture! A one year anniversary is a wonderful incredible milestone. I am impressed with your way of celebrating, nice! 8) :D :D
by mrhodes40
Tue Aug 03, 2010 7:59 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: myelin and ccsvi
Replies: 10
Views: 2112

Schelling did talk about it, I think about page 32 of his book or so... link is on the research thread we also discussed it in about march of 09 at length in the big thread somewhere. bottom line oligodendrocytes die...when they die myelin dies too and as Sou points out then the scavengers come to c...
by mrhodes40
Tue Jul 27, 2010 5:58 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Report on the 7/26 Sclafani CCSVI Symposium
Replies: 36
Views: 8035

Nice post Marc! You are smart and on it as usual... I am sorry to hear you were sick. I am so glad you are back and on the mend! I hope it is s uneventfl recovery. It makes me wonder how much real information can be derived from a 30 person study such as the one at Buffalo. It would seem to make sen...
by mrhodes40
Wed Jul 21, 2010 12:29 pm
Forum: Regimens
Topic: Marie's Stents CCSVI
Replies: 180
Views: 38832

Well well well. The local MS neuro has gotten to my second opinion guy in the meantime. He is apparently going around to local vascular guys and giving inservice education. Now my second opinion guys knows all about this "CCSVI nonsense" direct from our resident NMSS expert. He begged me to understa...
by mrhodes40
Wed Jul 21, 2010 9:23 am
Forum: Regimens
Topic: Gibbledygook's stents
Replies: 125
Views: 35792

How awesome the spasms are going again! the spasm thing is so weird--why did it get better? how did stents fix that so much for us? strange Mixed feelings about bioness vs walkaide. I got the bioness it worked better with my walking style, it has a piece that goes in your shoe and when your heel sta...
by mrhodes40
Mon Jul 19, 2010 9:34 am
Forum: Regimens
Topic: Gibbledygook's stents
Replies: 125
Views: 35792

Alex I am so relieved for you and your little Arthur. you came through! God bless you all! I hope you begin to feel better now and can follow up on your own health. :D :D :D Keep up your shoulder exercises; my accessory nerve regenerated but it still needs ongoing trapezius exercises to keep the sho...
by mrhodes40
Tue Jul 13, 2010 10:21 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Zamboni Protocols
Replies: 6
Views: 2328

http://www.bentham.org/cnr/openaccessar ... /006AG.pdf

This is Dr Menegatti's and Dr. Zamboni's duplex ultrsound protocol--the dopplers