my info as I was fee001 and sunnee

I'm not sure if this is the right place to post but i figured i might get an answer to a question. august '10: i had a doppler ultrasound in Glasgow, uk. right & left jugulars when erect had restricted flow when supine both had mild stenosis but it was considered to be normal flow so no further steps were taken. july '11 i had a cerebral (including jugulars) CT venogram. again not enought evidence of stenosis was found so no further action has been taken. I want to believe very much in ccsvi enough to have started breathing O2 under pressure since August '10 every week which has noticeable (but shortlived) benefits. i found this study whilst looking for info on CTs (which is what the radiographer at my local teaching hospital wanted to use) http://www.ajronline.org/cgi/content/ab ... 169/6/1699 "CONCLUSION: Cerebral CT venography is superior to MR venography in the identification of cerebral veins and dural sinuses and is at least equivalent in the diagnosis of dural sinus thrombosis. CT venography is a viable alternative to MR venography in the examination of patients with suspected dural sinus thrombosis." MY QUESTION IS THIS what qualifies as stenosis in the 90%+ figures that IRs around the globe have been noticing in their MS patients? is it all operable stenosis, or not? any thoughts'd be great thanks
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deezll	Post subject: 2nd opinions? this ISN'T trolling Posted: Thu Aug 04, 2011 10:01 am
Getting to Know You... Joined: Sun Jul 25, 2010 3:00 pm Posts: 19 Location: cambridge UK	since my last posting the ccsvi folks in Glasgow had another look at my results from last year as they feel they have more experience 12 months on. here's a quote from the letter from them - "report: both IJVs demonstrate normal retrograde flow with normal venous expansion in supine position and relative collapse in erect position. No evidence of reflux. However both valves appear malformed. There is evidence of pooling of blood seen at the lower segments bilaterally with significant flow resistance. Vertebral veins are patent and also demonstrate normal retrograde flow with no evidence of reflux. Impression: the appearances are inconclusive of CCSVI. suggest an MRV for further evaluation." might anyone have any experience of this situation or any thoughts or opinions? thanks for your time
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Cece	Post subject: Re: imaging techniques Posted: Thu Aug 04, 2011 10:18 am
Family Elder Joined: Mon Jan 04, 2010 4:00 pm Posts: 8556	deezll wrote: "CONCLUSION: Cerebral CT venography is superior to MR venography in the identification of cerebral veins and dural sinuses and is at least equivalent in the diagnosis of dural sinus thrombosis. CT venography is a viable alternative to MR venography in the examination of patients with suspected dural sinus thrombosis." This is discussing the sinuses and cerebral veins, in or near the skull, which are not the veins of most interest in CCSVI. The jugulars are in the neck and the area of the valves, where maybe 75% of the issues are, are down at the base of the neck near the collarbone. Doppler ultrasound has been the noninvasive screening tool of choice, followed by MRV, with CT not being mentioned by the leading investigators. Invasive screening tool of choice may be venogram plus intravascular ultrasound. Hope this is helpful. I feel like I should add something critical of CCSVI since this is the critical thread. Hmmm. Quote: However both valves appear malformed. There is evidence of pooling of blood seen at the lower segments bilaterally with significant flow resistance. This would seem to be indicative of CCSVI. You don't know for sure until you have the minimally invasive procedure done. According to Dr. Dake's research, the MRV correlated to what was found on venogram 80% of the time which means 20% of the time it didn't. The venogram was thought to be the standard or the correct one, not the MRV, in the 20% where they differed.
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deezll	Post subject: VVVVV....vvve!! Posted: Thu Aug 04, 2011 11:06 am
Getting to Know You... Joined: Sun Jul 25, 2010 3:00 pm Posts: 19 Location: cambridge UK	thanks for reply CC. I have some more researches to do. i looked for somewhere to get dopplered. I stamped my feet to get seen by a radiographer who swore by CT I thought my next move was looking for MRV. Before i go and ask: do you know whether ccsvi centres routinely offer venogram AND mrv? thanks again for my introduction to venous 101!
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Cece	Post subject: Posted: Thu Aug 04, 2011 11:36 am
Family Elder Joined: Mon Jan 04, 2010 4:00 pm Posts: 8556	I've been to Dr. Cumming in MN, who primarily tests by doppler ultrasound but can do Haacke protocol MRV, and Dr. Sclafani in NY, who tests by doppler ultrasound. You're in the UK so I am not as familiar with the ccsvi clinics over there. The CCSVI IRs are finding very high percentages of CCSVI in MS patients, in the 90 -99 % range. I was comfortable just going for the procedure even if I'd had no pre-imaging at all. It's the only way to know for sure. IMO.
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deezll	Post subject: Posted: Thu Aug 04, 2011 12:40 pm
Getting to Know You... Joined: Sun Jul 25, 2010 3:00 pm Posts: 19 Location: cambridge UK	thanks very much for all your input, I'll find a more appropriate place to post now
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fee001	Post subject: CCSVI treatment may NOT be your answer Posted: Sat Aug 13, 2011 11:45 pm
Family Elder Joined: Sat Jun 25, 2011 3:00 pm Posts: 370 Location: Notts England	Hi! I think everyone knows that I believe that misdiagnosis is very possible as so many crossovers which I have looked into to elliminate from my particular case, hughes, lupus, lymes, m.e. etc the possible epstein barr link. The conclusion that I came to is the reason why I cant walk, couldnt co ordinate with a walking stick, couldnt stay on my feet, had no resistance in leaning or holding onto things these are my facts (so cese no need to comment ok) unless you think I lie. I am NOT ok. Over a ten year or more period my spine has twisted due to a tiny bone being out. I see the body as a piece of engineering, and if this (the Atlas) is a fraction of a mm out it renders the whole system useless. CCSVI and its treatments yes WILL aleviate certain issues particularly blood circulation and also have a placebo effect as regarding nervous tension/stress related isues that effect mobility. If you are LIKE me misdiagnosed on a possitive MRI (again my FACT) and you have mobility problems, spasm, tremor or l,hermittes, circulation issue, vision issues . Then your Atlas could be misaligned. In my opinion CCSVI treatmets will NOT if you Atlas is misaligned, get you out of your wheelchair ok, it aleviates a SYMPTOM does NOT do anything else. CCSVI treatmentsa are not relevant to me or anyone similar ok, it is NOT the be all and end all ok. And newly diagnosed must be so overwhelmed by the incessant banging on about one size fitting all, because life isnt like that, varients do happen,mistakes DO happen. Debate discussion and a pondering over perhaps several different issues is good and healthy. But will NOT happen when the obsession with CCSVI treatments exists. The narrowing does happen but allow others to explore alternative, else we learn nothing. OK my last post completed Thanx Fiona _________________ I do my own research, and find my own answers Its good to talk
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HarryZ	Post subject: Re: CCSVI treatment may NOT be your answer Posted: Sun Aug 14, 2011 3:15 pm
Family Elder Joined: Tue May 25, 2004 3:00 pm Posts: 2129 Location: London, ON, Canada	Quote: CCSVI treatmentsa are not relevant to me or anyone similar ok, it is NOT the be all and end all ok. And newly diagnosed must be so overwhelmed by the incessant banging on about one size fitting all, because life isnt like that, varients do happen,mistakes DO happen. Debate discussion and a pondering over perhaps several different issues is good and healthy. But will NOT happen when the obsession with CCSVI treatments exists. The narrowing does happen but allow others to explore alternative, else we learn nothing. OK my last post completed Thanx Fiona I don't think those who responsibly deal with CCSVI's possibilities state that it is the be all. Some people have benefited greatly from it, others minimally and others not at all. Sound familiar when it comes to the various treatments for MS? The kind of patient that is obsessed with CCSVI is likely the same kind of patient that is obsessed with taking Tysabri or any other medication. You can't paint everyone with the same brush. We also see MS patients being misdiagnosed often since it can be such a difficult disease to diagnose. Its initial remitting and relapsing nature just add to this problem. Can you imagine what a MS patient must feel like that gets a wrong diagnosis, takes one of the immune system altering drugs for a period of time and then is told you don't have MS?!! It is obviously very important that a patient gets an accurate diagnosis of MS before beginning any treatment. Harry
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cheerleader	Post subject: Posted: Sun Aug 14, 2011 4:46 pm
Family Elder Joined: Mon Sep 10, 2007 3:00 pm Posts: 4696 Location: southern California	There are thirty different forums on this webpage as to how to treat MS. No one forces anyone to read the CCSVI forum. You have free will. Frequent the other forums, Fiona. Join the many discussions on misdiagnosis of MS and atlas alignment, read Dr. Flanagan's book...and as NHE suggested on the duplicate of this post in the CCSVI forum, here's the link to pubmed where you can read the latest in MS research. http://www.ncbi.nlm.nih.gov/pubmed/ cheer _________________ Husband dx RRMS 3/07 dx dual jugular vein stenosis (CCSVI) 4/09 dual stents placed 5/09 CCSVI in MS
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rainer	Post subject: Posted: Mon Aug 15, 2011 7:40 pm
Family Elder Joined: Thu Jan 17, 2008 4:00 pm Posts: 367	Only one of those forums has 88000+ posts though. Just sayin'
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civickiller	Post subject: Posted: Tue Aug 16, 2011 12:11 am
Family Elder Joined: Thu Feb 04, 2010 4:00 pm Posts: 526 Location: Hawaii	ive always said Upper Cervical Care should be done before ccsvi surgery, but thats also assuming you have MS and not lyme disease or something. maybe you wont need the surgery
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fee001	Post subject: Posted: Tue Aug 16, 2011 6:14 am
Family Elder Joined: Sat Jun 25, 2011 3:00 pm Posts: 370 Location: Notts England	Civickiller You have got my attention. I was off but now back, a womans perogative to change her mind. That tiny little top bone can cause a multitude of probs throughout our system of nerves muscles etc. The brain is the heaviest organ of the body, if the cervical spine is weak, we have no power to keep it upricgt. Not a problem for me now, but have had a couple of shiners where I've just careered forward, headfirst to the floor, ouch! I have decided today to now re-enter the NHS system to access physio etc along side private chiropractic treatment, I will have to keep my mouth well and firmly shut, but I will use the system to my advantage. I am now holding all the cards, but just cant show my hand yet. But I will do, sooner or later. Where as a few weeks ago I thought that I was totally alone, you have proved to me I'm not. There is more us out there, we will find them 2 getha Fiona
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Lyon	Post subject: internet racing ahead of the scientific evidence Posted: Sun Nov 06, 2011 9:05 pm
Family Elder Joined: Wed May 03, 2006 3:00 pm Posts: 6063	.. Last edited by Lyon on Sun Nov 20, 2011 12:17 pm, edited 1 time in total.
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Sunnee	Post subject: Re: CCSVI treatment may NOT be your answer Posted: Mon Nov 07, 2011 10:07 am
Family Member Joined: Mon Oct 17, 2011 2:53 am Posts: 85	If my children were diagnosed today, I would insist on them getting their necks assessed. Then I would also insist that they were tested for Lupus, Lyme disease, Hughes Syndrome and Candida Sunnee
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sou	Post subject: Re: internet racing ahead of the scientific evidence Posted: Mon Nov 07, 2011 10:10 am
Family Elder Joined: Sat Dec 20, 2008 4:00 pm Posts: 582 Location: Greece	It works the other way, too: "scientific evidence racing behind the internet " We definitely need better scientists. They don't understand that by offering "solutions" like interferon, they have lost their credibility. How can they convince somebody that the blocked veins, that can be seen, do not exist while interferon has a positive impact in the course of MS? I wonder... _________________ Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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