This Is MS Multiple Sclerosis Community: Knowledge & Support

First of all, Arizona Doppler rocks. They are highly professional and know exactly what they are doing. Nicole did a fantastic and thorough job of examining my veins and explaining what she saw.

If you have MS and are skeptical about whether ccsvi is real, you really should get a Doppler exam from someone qualified in the Zamboni protocol. It's not that expensive (mine was $540) and once you see your own veins and valves on the screen you will be in a much better position to say whether it's real or not, trust me.

Unfortunately, I still have ccsvi. 2 of 5 criteria. Possibly one more criteria when I get the final report. Even though I have 3 stents in my jugulars, I have abnormal valves and reflux on both sides. At this point I kinda figured that was going to be the case. I also have very little flow on the left side although the stents are open. So that's a mystery. It appears the stents
aren't doing enough for me, although I still need to talk to my doctor about it. Some of my symptoms have worsened over the last 17 months as well.
As for where to go from here, I'm not sure, but I thought you stent owners
should know. So there ya go.

Hi Rokkit!
I might have similar problem. I have one stent in my left jugular because my valves were inverted. I had Doppler as well as control venography in January. The doctors (prof. Simka + one more doctor) did not see any big problem.
I am also worsening - not dramatically but I am weaker. I can walk, talk or do something simple but less then a year ago.
I personally cannot do anything more. I just keep myself calm as much as I can. It means minimum talking, walking, being in cold, dark room so I can at least walk around the house a little.
I simply wait for more scientific research. Maybe I will have to wait 1 year may be 10 years or maybe...
Flow in my left jugular was slower during my follow ups. If I discover something I will certainly let you know.
Btw. headaches are still killing me
Erika

_________________
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse

rokkit

it is challenging to interpret the post treatment ultrasound. in fact, there has never been anything written on it. For example, after angioplsaty and after stenting as well, the valves are not present, or functional. Certainly when stents are placed they keep the valves open. So it would seem intuitive to me that reflux should be expected.The difference might be that because the veins have flow rather than obstruction that reflux is different and does not constantly flow backward but may flow forward and backward. And that might be better.

i will bring this issue up at the consensus panel on ultrasound in bologna next sunday.

btw

that price seems very high to me. test takes about 40-90 minutes to perform and interpret at most.

Thank you for thinking about my situation, Dr. Sclafani. My stents aren't in the valves, they are well above them. The tech showed me the valves on the screen and how they flapped in a dysfunctional manner rather than opening like they should.

Erika, I don't know what to say. Don't give up. Every month brings more understanding for the doctors.

Rokkit, thanks for sharing.
I'm going to have my first US done here in Charlotte soon. I am 17 months post treatment. I am still doing really well, but I'm interested in seeing the flow on Doppler.
Erika, I still battle headaches too. Mine may be related to a neck problem, but you never know.
I wonder how many of us have had follow ups with US and what the results were?

_________________
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.

Just one thing. I had four Doppler follow ups by prof. Simka and one venography also at Euromedic. It was not exactly the same. I mean there is some difference between Doppler and venography. I also had one MRV (Haacke protocol) 77 days after the treatment. As there was no paper written about patients like me we (patients and doctors) must simply learn new things.
If there is no problem I will have regular MRI of my brain and C spine in Slovakia soon.
Erika

_________________
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse

magoo

please share with me what is found
for the life of me, i just do not know what to expect. now that i have my own tech and US unit, it is just a m atter of time before i have the necessary experience

s

I would think that we could look at the results in studies on jugular vein insufficiency (the other kind), to see what to expect, if indeed that is the condition in the post-ccsvi-treatment jugulars. From what I remember, there is reflux of a shorter duration than what is seen in CCSVI.

I would be interested in what is said on the matter in Bologna.