Not 100%

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby CureOrBust » Fri Jul 10, 2009 5:58 am

zap wrote:(PS - I can't recall who had the 'weird' MRV scan done, with all the brain veins highlighted instead of the jugulars, but they may have been accidentally scanning for CVST? (See http://radiographics.rsnajnls.org/cgi/c ... uppl_1/S19)
That was me who posted the MRV showing all the minor vessels (can't find that post now :? )
I have since revisited the CD provided with all my scans. I viewed the last sequence of images (there were quite of few sequences, one for MRI, one enhanced, one rotated one way etc etc etc), obviously for the first time :oops: . Anyhow, it contained a more distinct image of the major veins in my skull. I was trying to find the original post to post this image. I will do it on the weekend. Image
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Postby mrhodes40 » Fri Jul 10, 2009 6:02 am

What is really good about all this is ....................

let's say that 90% of us have this--or even smaller make it 60%.

If they can fracture out that many of us, they can start research on the remaining group without the interference of all of the CCSVI findings muddying the waters. They may finally get somewhere with MS research on the remaining group---assuming there is a heterogenous MS causation and there is a large group left over

what a blessing to find a good chunk of us and get us out of the pool.

cure-dake told IG 6000 images in an MRV he showed me a picture of what he needed to show the issue in me--i don't think anyone can blame you for not knowing exactly which one to put up on here! :wink:
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Postby LR1234 » Fri Jul 10, 2009 6:47 am

......
Last edited by LR1234 on Tue Mar 06, 2012 12:28 am, edited 2 times in total.
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Postby daniel » Fri Jul 10, 2009 6:49 am

CureOrBust wrote:One of the items that concerned me, was with one of the guys who had the stents placed by Dr Dake, one of the abnormalities were only identified during the operation, when he had a "poke about". ie the MRV, which is currently considered our "gold standard" on finding stenosis, did not find this stenosis; its fallible. "Luckily" the patient had another issue, which DID show up on their MRV, and hence Dr Dake performed the procedure; providing an opportunity to find the other stenosis. What if someone's abnormalities were all just like this persons "hidden" issue?


I remember reading about that at TIMS... was it Holly (peekaboo) that they found the azygous vein had issues but didn't come up on the scans?.. I can't seem to find the thread..
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Postby mrhodes40 » Fri Jul 10, 2009 7:03 am

Marie can people have RRMS with no enhancing lesions??? I always thought if your MRI does not enhance you have a progressive form yet I have def remitted most of my sx from last ghastly attack
I am not ao doctor of course and you should ask him but enhancement is when the Gd crosses the BBB at the site of a lesion, which essentially means it is active and there is inflammation.

Progressive forms tend to have no inflammation, but it seems possible to me that you could have RRMS and stable lesions that do not enhance at a given time because they are not active between relapses, but I am not the right person to ask on that for definitive answer. Lesions and their enhancement or not, development or not etc all seem not to be related to disability because you can actually have stable appearing lesions and progress anyway... or no progression and enhancing "silent " lesions. They almost seem to be -dare I say it-unrelated! It is possible to have severe MS and NO lesions. not everything is known

I still think this is all good even if it is confusing for some time in the beginning here, I ay again if they can discover a big chunk of us have CCSVI then more resources can go to the remaining pathology and it might finally get somewhere.

It also may be true that better imaging techniques down the road will tell more too..............

7 tesla MRI shows a lot we can't see otherwise, might it be better than venograms in a 7 tesla MRV??? time may tell many things here
Last edited by mrhodes40 on Fri Jul 10, 2009 7:07 am, edited 1 time in total.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby CureOrBust » Fri Jul 10, 2009 7:04 am

mrhodes40 wrote:cure-dake told IG 6000 images in an MRV he showed me a picture of what he needed to show the issue in me--i don't think anyone can blame you for not knowing exactly which one to put up on here! :wink:
If it was that reason, it wouldn't be so bad. But it simply was a case of me finding the first thing that looked like vessels through the head, and I stopped looking any further on the CD... I only found it when I reviewed the CD again when making a copy for Dr DAke.
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Postby peekaboo » Fri Jul 10, 2009 7:46 am

Cure - Don't be hard on yourself...good news is there are more appropriate images waiting for Dr D to review.
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Postby whyRwehere » Fri Jul 10, 2009 11:20 am

Speaking of Tesla, I notice Google has commemorated his birthday. Having looked him up, I found out that people viewed him "as a mad scientist"....because he thought of things outside the box no doubt....died poor at 86.....people are lovely.
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Postby patientx » Fri Jul 10, 2009 12:32 pm

LR1234 wrote:
would like to try Revimmune but have no enhancing lesions. Marie can people have RRMS with no enhancing lesions??? I always thought if your MRI does not enhance you have a progressive form yet I have def remitted most of my sx from last ghastly attack.


We had this discussion a while back, and the consensus is that lesions will show active enhancement for only about 6 weeks. It seems almost like a crap shoot that you will catch them while they are enhancing. So to me it seems silly to use this as a measure in clinical trials, but I guess the enhancement is proof that there is still inflammation going on.

I have also heard the thing about no enhancing lesions meaning progressive disease. My guess is that this is a little mis-interpreted. The lack of enhancement COULD be a sign that there is no more inflammation, so the MS is/has become progressive. But given the enhancement only lasts 6 weeks, you can't say this definitively. At least let's hope so - I haven't had any enhancing lesions on my MRIs.
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Postby patientx » Fri Jul 10, 2009 12:40 pm

whyRwehere wrote:Speaking of Tesla, I notice Google has commemorated his birthday. Having looked him up, I found out that people viewed him "as a mad scientist"....because he thought of things outside the box no doubt....died poor at 86.....people are lovely.


Tesla was pretty brilliant. He was right using AC for power transmission, while no less a giant than Edison insisted on DC. But Tesla had some pretty kooky ideas later in life.
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Postby LR1234 » Fri Jul 10, 2009 12:48 pm

......
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Postby Sharon » Fri Jul 10, 2009 1:17 pm

Daniel wrote
CureOrBust wrote:

One of the items that concerned me, was with one of the guys who had the stents placed by Dr Dake, one of the abnormalities were only identified during the operation, when he had a "poke about". ie the MRV, which is currently considered our "gold standard" on finding stenosis, did not find this stenosis; its fallible. "Luckily" the patient had another issue, which DID show up on their MRV, and hence Dr Dake performed the procedure; providing an opportunity to find the other stenosis. What if someone's abnormalities were all just like this persons "hidden" issue?


I remember reading about that at TIMS... was it Holly (peekaboo) that they found the azygous vein had issues but didn't come up on the scans?.. I can't seem to find the thread..


Just to clarify......Holly's insurance would not pay for an MRV of the asygous vein --it paid for MRV's of the jugulars only. She never had an MRV of the asygous. Once in the procedure, Dake looked at the asygous vein -- that is when he found the blockage.

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Postby javaneen » Fri Jul 10, 2009 5:08 pm

IG - my heart goes out to you right now. Try to stay strong and positive. This is all happening for a reason. I hope that you will be able to find the strenght inside of you to make good of all this. I agree with what Marie is saying in all of her posts. This is just the beginning....you have truly taken one for the team here. We will all continue to pray for you, for answers, for health and for happiness.
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Postby CureOrBust » Sat Jul 11, 2009 4:52 am

Sharon wrote:Just to clarify......Holly's insurance would not pay for an MRV of the asygous vein --it paid for MRV's of the jugulars only. She never had an MRV of the asygous. Once in the procedure, Dake looked at the asygous vein -- that is when he found the blockage.
Sorry if I misread the post. :oops:

Was there anyone so far that had a blockage that was scanned in the MRV, but only found during the procedure? or has the MRV been faultless to our knowledge?
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Postby Islandgirl » Sat Jul 11, 2009 6:57 pm

I'm back from Stamford, and ready to report. I want to thank Marie for keeping you all informed as much as possible when I was there. I couldn't ask for a better friend. I thought I could borrow a computer, but it was not possible. I also wanted to thank all of you for the kind notes. It is a big decision and the support helps. I read this thread and will try to anwser any questions I come across.

As you all know I don't have stenosis, not even one. What a shock. All the many Dr reports that I sent to Dr Dake including 4 very fancy Neuros, and 3 MRI"S which showed typical MS lesions in the brain. He was sure I would have stenosis. I spent 2 hrs in that awful MRI tube with terrible left side neck, shoulder and back pain, ugh. When I got to his office we discussed my options. He said I was different, that on a bell curve I was not like the usual MS patient. I told him more of my history and I will share it with you. I have had a history of viral diseases from
childhood, herpes simplex as a child, Mononucleosis as a teenager, Epstein bar as a young married, Transverse myelitis in my 40's and finally in 1990 diagnosed with MS. He has found one other man with similar symptoms. This man needed a little stent repair so Dr Dake thought for sure he could do something for me. We went to surgery, 90 mins on the table and we were done. When I went for the post-op visit, he said I was clear, no stenosis, he could do nothing for me. I couldn't even register what he was saying. He is a wonderful man. He wanted so badly to help me. If every doctor was as compassionate. Then he made another MRI appt to check my entire spine for nerve pinching. After that MRI later in his office, he showed me the results of all my MRI's, they were perfectly clear, I saw no stenosis. He also said that the herniations in my neck and small MS plaque at C5-C6 should not be causing me pain. I came home. We will stay in contact because I am sure there are other people like me out there but obviously I have to go in another direction.

Again to describe my condition in case anyone out there is like me. I am a high functioning woman. I have a family history of celiac disease including my two daughters and my grand-son in showing signs. One of my daughters has sticky blood syndrome too. All my lesions are in my brain mostly the left side, some very big ones, and one small plague at C5-C6. I have never been tested for celiac disease but it looks like that is where I will be turning my attention. Gluten Ataxia is a strong possibility since the lesions mimic MS lesions and symptoms and it can cause the usual fatigue symptoms. There is a specialist who has written a book on it who is with Kaiser Perminenta in Portland Or. My daughter said google Kiaser celiac mononucleosis. I haven't gotten that far yet. LR1234 I will write you a personal note. Thanks to all. Islandgirl
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