My MRV pics -- please see and help!

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My MRV pics -- please see and help!

Postby Camilla » Wed Mar 03, 2010 3:50 am

Hi all!

This is a link to my MRV image.

Negative report -- but I haven't given up! This is the start for me. Would love expert comment. After Manoj's experience, ready to go to India for surgery! Have links there, and in Pakistan.

http://s802.photobucket.com/albums/yy30 ... ploadshare

Thanks all

Camilla
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Postby costumenastional » Wed Mar 03, 2010 4:19 am

Camilla, the picture is quite small, but even if it wasn't i couldnt say much since i am not a doctor.
What i can say, is that even it s a good thing you wont give up, we must all have in mind that CCSVI is not panaceia for all of us. At least, not yet prooven as such.
I personally havent been tested yet, and to be honest, my fear of a negative result is one of the main reasons. Another reason is the fact that diagnosis of CCSVI may be very difficult in some cases, or may come throught diagnostic procedures that may vary from patient to patient.
Consider this just a gentle reminder please, that trying to get a stent or a baloon angioplasty whatsoever may lead to mistakes, loss of money or whatever.
Having said that, (it was just like talking to myself, please dont get me wrong), i hope that a doctor will be able to diagnose stenosis for you eventually and i will be waiting to hear the best possible news.

I wish you best of luck.

http://www.thisisms.com/ftopict-10492.html ;) sounds familiar?
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Postby Camilla » Wed Mar 03, 2010 4:40 am

Thanks Costume -- your advice is good, and I have every intention of going carefully!

The images get bigger if you click on them!

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Postby Camilla » Wed Mar 03, 2010 4:45 am

This may be a better, bigger image!


http://s802.photobucket.com/albums/yy30 ... postupload
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Postby costumenastional » Wed Mar 03, 2010 4:46 am

You are most welcome.

Something tells me that going carefully will lead to the best possible results.

Take care.

And yes, this is a lot better! It doesnt look like the IJVs i am used to see though. Everything looks tiny. I think there is a lot more to check for them to characterize your case "negative". I can see the collaterals but the actual IJVs are not well visible. I hope other users, more capable can correct me or should i say i hope not? ;)
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Postby CureOrBust » Wed Mar 03, 2010 5:03 am

Camilla, I had a recent MRV, and was given a disk with similar software. The radiologist did not notice any stenosis (or comment on it at least).

I went through every series, looking at every image within the series, making note of every veins full path. I found the stenosis. I think anyone trying to find something in the MRV, would most likely need to do the same. Also, on my first MRV, even Dr Dake looked through every image in every series, and he didn't see anything. Now, I think its hard to miss!
Latest: http://i81.photobucket.com/albums/j212/CureOrBust/005954F5.png

Previous:
http://i81.photobucket.com/albums/j212/CureOrBust/FrontOnMRV2.jpg
http://i81.photobucket.com/albums/j212/CureOrBust/SideOnMRV2.jpg

The view I found mine on was by flicking through radial slices which basically imitated rotating the view. As many have found, from one view, it all looks good, from another something is not quite right.

In the image I did find it, the two images that followed became a mess of interference from nearby veins. In otherwords, it was almost the case that the other viens hid the stenosis, I was lucky that one shot was close to the perfect angle. The stenosis itself may be worse from another angle, but it may be hidden from view by the other veins. All just my non-medically trained view.
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Postby GuRu » Wed Mar 03, 2010 8:23 am

Hi Camilla!
You did you MRV in Karachi???????????
GREAT, one more Country in the Race.................
We must learn our limits. We are all something, but none of us are everything.
GuRu
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Postby manojag22 » Wed Mar 03, 2010 8:45 am

Camilla,

Please let e know if you need any help in Mumbai, India

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Postby Camilla » Wed Mar 03, 2010 10:31 pm

Yes Guru, I did! I live in the UK but had no luck here. Karachi has an Aga Khan Hospital, one in Nairobi too -- but I need someone to look at the images for me! Have also asked a vascular surgeon friend (in the UK) to have a look, but he couldn't see stenosis immediately.

Manoj ji, Adab! Thanks for your offer and congratulations on your procedure. I hope it works for you. I am currently considering options -- if someone finds stenosis, India could be one of them. I will be in touch with you on your outcome etc and will consult you if I need help.

Cheers to all

Camilla
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Postby CureOrBust » Thu Mar 04, 2010 2:52 am

I do not live in the UK, so have not been following it too closely. However, have you investigated the place posted in this thread?

http://www.thisisms.com/ftopicp-93074.html#93074
http://www.essentialhealthclinic.com/website/index.php/clinic/ccsvi/ccsvi-newsletter.html
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Postby Camilla » Thu Mar 04, 2010 4:51 am

Thanks Cure -- yes; they don't see stenosis. Also consulting a vascular surgeon who 'believes' in CCSVI.

Yes, my experience is a bit like yours. A negative, but is it reslly one? Am going to have a closer look at my images!

Cheers

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Postby Camilla » Sat Mar 06, 2010 2:54 am

One vascular surgeon wants to do a venography -- thinking about wether to go for one.

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Postby CureOrBust » Sat Mar 06, 2010 2:21 pm

Has anyone attempted performing an Ultrasound on you yet? The fact you are hesitating on the venography would imply you don't like its invasive nature.
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Postby Camilla » Sat Mar 06, 2010 9:34 pm

Yes -- a bit hesitant on that. Trying to find someone who can do a decent ultrasound, following Zamboni.

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Postby CureOrBust » Mon Mar 08, 2010 5:08 am

Don't worry, I'm avoiding a venogram as well!

As for duplicating Zamboni's, it appears a hard thing to get right without the specific training. I actually got a neurologist to duplicate all the tests (he specialised in stroke, so it might be an avenue for you to follow). An interesting thing I noticed is that down in Melbourne, here in Australia, a Radiologist does not perform the TCD (which most shy away from), but a seemingly simply area and flow measurement of the jugulars. Below is the results from one such study; it would seem a lot easier as a starting point, and appears to have shown some abnormalities for MS patients.
http://www.thisisms.com/ftopicp-95399.html#95399
Code: Select all
RIGHT                            SUPINE                 ERECT
IJV AREA (mm2)                   259   (N 69 143)        21   (N 9 25)
IJV DOPPLER VOL (ml/m)          1009   (N 430 970)      903   (N 0 170)
VERTEBRAL AREA (mm2)             9.4   (N 7.8 13.4)       1.2 (N 8.3 15.5)
VERTEBRAL DOPP. VOL (ml/m)      21 42  (N 20 60)         58   (N 90 330)

LEFT                             SUPINE               ERECT
IJV AREA (mm2)                   69    (N 69 143)       4.5 (N 9 25)
IJV DOPPLER VOL (ml/m)          289    (N 430 970)    159   (N 0 170)
VERTEBRAL AREA (mm2)              3.7  (N 7.8 13.4)     3.3 (N 8.3 15.5)
VERTEBRAL DOPP. VOL (ml/m)       12    (N 20 60)       42   (N 90 330)
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