still sad about scan results

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

still sad about scan results

Postby burntsienna » Mon Oct 10, 2011 6:21 am

About a year ago I was scanned for CCSVI and there weren't any blockages found, so the recommendation obviously was to have no angioplasty. It took me a little while to get over my disappointment but then just put it out of my mind and moved on. However, I'm feeling a bit blue today after a recent relapse has left my mobility much worse off and I've been struggling to make the transition to using a wheelchair. So of course my mind is wandering back to my scan that showed my blood flowing freely with no problems. . . what are the chances that that would be different now?? :sad:
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Re: still sad about scan results

Postby NHE » Mon Oct 10, 2011 6:44 am

What type of scan did you have, ultrasound, MRV, or... ?


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Re: still sad about scan results

Postby burntsienna » Mon Oct 10, 2011 6:49 am

i'm pretty sure it was doplar ultrasound. The scanner said that if that had showed anything then I would go on to have an MRV, but it didn't.
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Re: still sad about scan results

Postby dania » Mon Oct 10, 2011 7:37 am

I know of some that the ultrasound showed nothing, but when they did the venogram the found narrowing. The only way to definitely know is with a venogram. If you have MS you can be sure you have a problem with your veins.
Last edited by dania on Mon Oct 10, 2011 7:54 am, edited 1 time in total.
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Re: still sad about scan results

Postby Cece » Mon Oct 10, 2011 7:43 am

Did the person doing your ultrasound have experience with CCSVI scans? I'd encourage you to try again. You're in the UK? I have heard good things about EHC clinic, if that would be a possibility. MRVs are not part of the diagnostic process these days, for most IRs. It's a Zamboni-protocol ultrasound, then straight to the procedure.
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Re: still sad about scan results

Postby scorpion » Mon Oct 10, 2011 10:26 am

I'd encourage you to try again.


If at first you don't succeed try try again.
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Re: still sad about scan results

Postby 1eye » Mon Oct 10, 2011 10:41 am

I'd encourage you to try again.


If at first you don't succeed try try again.


If at first you don't fricasee, fry, fry a hen.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Re: still sad about scan results

Postby burntsienna » Mon Oct 10, 2011 10:59 am

Cece wrote:Did the person doing your ultrasound have experience with CCSVI scans? I'd encourage you to try again. You're in the UK? I have heard good things about EHC clinic, if that would be a possibility. MRVs are not part of the diagnostic process these days, for most IRs. It's a Zamboni-protocol ultrasound, then straight to the procedure.


Yes they did. Trained by Zamboni at the EHC... That's where I went for the scan in September 2010.

scorpion wrote:
I'd encourage you to try again.


If at first you don't succeed try try again.


That would be great. . . if I had ANY money to throw at it! Alas, I really really don't!
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Re: still sad about scan results

Postby civickiller » Mon Oct 10, 2011 12:57 pm

i recommend seeing a Upper Cervical Care Dr. to see if you could benefit from this kind of care

checkout the chiropractor forums on here or you can search upper cervical care and view through it
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Re: still sad about scan results

Postby Cece » Mon Oct 10, 2011 1:23 pm

Why not call EHC to see if they feel they've improved on their technique? A year ago, everyone was less experienced. They could also review the imaging that was done to see if they would still consider it CCSVI-negative. The other thought is that the association between CCSVI and MS is high but it may not be 100%. Or, if a person is negative for CCSVI, it is possible that MS is a misdiagnosis and perhaps Lymes or Hughes disease or other differential diagnoses need to be considered.

I suppose if treatment is out of the question, it doesn't really matter if the CCSVI diagnosis is correct or not.

Were you asking if your veins themselves would have changed, so that it was a legitimate negative-for-ccsvi scan then but could be positive now? My understanding of CCSVI is that it is primarily of congenital origin, since birth, and that it precedes MS, so whatever condition your veins were in a year ago would be the same condition they are in now. However there are neurologists who think it is a valid argument to say that the MS may come first and the CCSVI second, as a reaction to inflammation or dysregulated autonomic nervous system-caused narrowing of the veins or whatnot.
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Re: still sad about scan results

Postby jimmylegs » Mon Oct 10, 2011 4:17 pm

burnt, sorry to hear you're not feeling well.

2 questions:
a) do you have a supplement and diet regimen, and
b) have you had all your bloodwork done, to ensure the various nutritional etc aspects of ms are corrected? (such as d3, b12 (b-complex in general), magnesium, zinc, selenium, vit e, ferritin, uric acid, fatty acids, protein energy, hemoglobin, etc etc etc?)
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: still sad about scan results

Postby cathyb » Tue Oct 11, 2011 2:18 pm

I am in no way telling you what you should do, but the doppler does not show problems with the azygos. Just sayin maybe you should ask about that part of it. My biggest problems were with it and I feel GREAT these days. Seriously.

:)
Good Luck!
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Re: still sad about scan results

Postby DrCumming » Wed Oct 12, 2011 4:59 pm

burntsienna wrote:About a year ago I was scanned for CCSVI and there weren't any blockages found, so the recommendation obviously was to have no angioplasty. It took me a little while to get over my disappointment but then just put it out of my mind and moved on. However, I'm feeling a bit blue today after a recent relapse has left my mobility much worse off and I've been struggling to make the transition to using a wheelchair. So of course my mind is wandering back to my scan that showed my blood flowing freely with no problems. . . what are the chances that that would be different now?? :sad:


my 2 cents...

i have personally done over 200 neck US. i find that i am somewhere between 60 and 80% right when compared with venography and IVUS. i do not US as a tool to decide to or not to proceed with a venogram. the false negative rate is too high.
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