Can these CCSVI problems be treated/fixed?

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

Can these CCSVI problems be treated/fixed?

Postby adamt » Tue Jul 13, 2010 11:37 am

Dr Sclafani kindly looked at my Catheter venogram images, and he noticed the following things:

1. right and left jugular veins at confluens stenotic - look narrowed as they enter the chest
2. questionable mid-azygous abnormality, possible stenosis
3. may thurner - a narrowing of the left iliac vein
4 lumbar vein hypoplasi - the veins that drain the lower spine, are poorly developed


Does anyone know if these issues can all be resolved by balloon angio?

if not, what treatments are available?

- when i had a catheter venogram i was told my veins were just like a healthy person, with no problems!!

thank you
User avatar
adamt
Family Elder
 
Posts: 304
Joined: Thu Mar 11, 2010 4:00 pm

Advertisement

Re: Can these CCSVI problems be treated/fixed?

Postby Cece » Tue Jul 13, 2010 11:45 am

adamt wrote:Dr Sclafani kindly looked at my Catheter venogram images, and he noticed the following things:

1. right and left jugular veins at confluens stenotic - look narrowed as they enter the chest
2. questionable mid-azygous abnormality, possible stenosis
3. may thurner - a narrowing of the left iliac vein
4 lumbar vein hypoplasi - the veins that drain the lower spine, are poorly developed


Does anyone know if these issues can all be resolved by balloon angio?

if not, what treatments are available?

- when i had a catheter venogram i was told my veins were just like a healthy person, with no problems!!

thank you


You are (sort of) in luck with #3. May Thurner is a recognised condition that any vascular doc should be able to treat. They treat it with ballooning and stenting. Since it is nowhere near your heart or brain, the stents are not controversial the way they are in CCSVI. I would get that treated asap!

#4, lumbar vein hyperplasia, has no treatment at this time.

#1 and #2 would need exploration by catheter venogram again. Maybe by a different doc, with more ccsvi experience? Not that such docs are easy to find. Yes, ballooning may work on these or some docs would choose to use a stent. Ballooning was shown by Dr. Zamboni to work in 50% of ccsvi cases so the odds are split.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
Cece
Family Elder
 
Posts: 9022
Joined: Mon Jan 04, 2010 4:00 pm

Correction Required

Postby MarkW » Tue Jul 13, 2010 1:52 pm

Cece wrote:
"Ballooning was shown by Dr. Zamboni to work in 50% of ccsvi cases so the odds are split."
This not a correct statement. The early work of Prof Zamboni showed that restenosis of IJVs was common at around 50%. The balloon venoplasty protocol has not been tested over time in a large number of patients. We do not know success rates or restenosis rates/times yet.
Kind regards,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
User avatar
MarkW
Family Elder
 
Posts: 1151
Joined: Thu Oct 19, 2006 3:00 pm
Location: Oxfordshire, England

lumbar vein stenting

Postby hwebb » Tue Jul 13, 2010 2:07 pm

Lumbar veins have bee stented by some doctors in the USA:

http://www.jvascsurg.org/article/S0741-5214(06)01013-5/abstract

I have a hypoplastic azygos...but the only needed to balloon the hairpin- curvy bit to restore blood flow. Maybe your lumbar vein only needs one area treated too (thought the whole thing is hypoplastic)?
User avatar
hwebb
Family Elder
 
Posts: 356
Joined: Thu Nov 26, 2009 4:00 pm
Location: Melbourne, Australia

Re: Can these CCSVI problems be treated/fixed?

Postby adamt » Wed Jul 14, 2010 5:54 am

thank you for all the replies, this is helping me learn more :)


Cece wrote:
You are (sort of) in luck with #3. May Thurner is a recognised condition that any vascular doc should be able to treat. They treat it with ballooning and stenting. Since it is nowhere near your heart or brain, the stents are not controversial the way they are in CCSVI. I would get that treated asap!



thanks Cece,

I will ask my GP to see if he will treat this on the NHS,

Only problem is how will i get him to do this

i have never had deep vein thrombosis, so how will i get him to treat me for May Thurners?

Also the radiologist in Germany said :
Narrowing of the iliac vein is a special indication and also for the lumbal vein
this can only be fixed in special sessions



Can i first get balloon angio of the jugulars and azygos in Germany, then back in England get the left illiac and lumber veins ballooned/stented, on the nhs?

thanks
User avatar
adamt
Family Elder
 
Posts: 304
Joined: Thu Mar 11, 2010 4:00 pm

Postby CCSVIhusband » Wed Jul 14, 2010 7:09 am

You don't need a DVT for May-Thurner to be treated. I'd go get that treated straight away (especially if you have azygous problems) because all you're doing by waiting is allowing blood from the legs that can't get to the IVC through the Iliac to flow through the azygous system (which has problems and is smaller and can't hold as much blood).

Then I'd worry about the jugulars/azygous being treated elsewhere ...
User avatar
CCSVIhusband
Family Elder
 
Posts: 474
Joined: Sun Jun 27, 2010 3:00 pm
Location: Pittsburgh, PA USA

Postby adamt » Thu Jul 15, 2010 1:08 am

CCSVIhusband wrote:You don't need a DVT for May-Thurner to be treated. I'd go get that treated straight away (especially if you have azygous problems) because all you're doing by waiting is allowing blood from the legs that can't get to the IVC through the Iliac to flow through the azygous system (which has problems and is smaller and can't hold as much blood).

Then I'd worry about the jugulars/azygous being treated elsewhere ...


ok, before i go to my GP, is there anything i have to sy to get him to test/treat me for May Thurners and the lumbar vens?

as the doctor who tested me for CCSVI was an Interventional Radiologist and mis diagnosed me as negative CCSVI
So im nt sure if showing them the images from the catheter veno would be sufficient
User avatar
adamt
Family Elder
 
Posts: 304
Joined: Thu Mar 11, 2010 4:00 pm


Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service