This Is MS Multiple Sclerosis Community: Knowledge & Support

Hello from Poland!

I had my Doppler ultrasound yesterday, the hands of Dr. Simka, and came away a very happy bunny indeed! Leading up to it I was absolutely terrified that he wouldn't find anything, and so relieved when he did I didn't ask half the questions I should have!

What he found was not stenosis, but a membrane across each of my jugular veins nearly blocking them (Dr. Simka's words). He replayed the ultrasound image for me of the right jugular vein, which is worse than the left he said, and the image was a cross section of the vein so the vein was a circle and the membrane was a curved line bisecting the circle, so I think what he was saying was that the blood only had the smaller part (about 20/25% of the vein is my guestimate) to go down. He said it was definitely congenital, and could be easily fixed by piercing the membrane with a catheter and maybe ballooning. He's going to send me an appointment in January for an MRV and the procedure. The MRV to reconfirm the diagnosis, check the extent of the membrane structures and check that there's nothing else untoward.

I'm so happy I could nearly fly home! But thinking of the wind chill factor I think I'll wait for the plane...

Has anyone else had or heard of membrane structures in the veins?

All the best
Nees x

AShh, what great news!! ( almost doesn't seen the right thing to say!!).

It's great that something has been found. My fear is the same as yours was. Please let then find something!!

I don't mean to be rude, but how much did this cost all in all?

I can't wait to go myself..

Claire

Congrats!
I think a membrane and a valve is the same thing.
I, and couple of other patients had/have problems with a valve in their jugulars.
Erika

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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

What terrible spelling. End of a long day..........

Glad he found a problem. I know what you mean, I too was terrified he would find no problems.

Erica, he made a definite distinction between the inverted valve on one side and a membrane on the other. I could see on the scans they were different problems.
Both fixed now though.

Hi Nees,

First, congrats! (is that what you say in these situations?! haha)... I'm glad that they found something and that it will be treatable! woohoo!

I'm curious, was the doppler ultrasound the first test you had? Or did you have a MRV before this? I'd like to get tested, but just not sure whether I should start with MRV or try to do a doppler ultrasound. unfortunately I can't make it to anyone that has experience with the ultrasound, so wondering whether it's better to start with the MRV first..? thoughts?

Oh, thank you, now I know more.
We really learn every day new things:D
Erika

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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

The doppler ultrasound was the first test I had. I'd e-mail Dr. Simka and that's what he suggested.

The costs so far have been flights and hotel. I haven't paid for the medical treatment yet, I guess that will be at the end, and I don't know how much that's going to be... Sorry if that's not much help.

But go for it!

Wow nees!! what fabulous news this is.


Now that is interesting. I thought the European docs were all using doppler to localize where the problem was and not MRV at all.

cool

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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

Well, all/many doctors use Dopplers but there is big difference between me and Bill Gates. Only one thing is the same, we both use PC.

After Dr. Simka I had 4 Dopplers in Slovakia - all negative - but I wanted to explain the doctors the problem, now they know me and I can send them many interesting e-mails.
I had 2 CTs with contrast - nothing.
I had 1 MRV with contrast - nothing.
I was not disapointed because I knew it.

I hope many new members will read this.
Erika

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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

Congratulations, Nees

Are you RR SP or PP -MS??

thats great news Nees

This is the cost break-down sent to me by Dr. Simka this morning:

An average cost of liberation operation is 5000 US$ / 3500EUR / 5500 CAD$

MRV 150-200 EUR

Doppler 50 EUR

I would happily pay 10x that - even if it would take me years to pay it off. What price for health?

I'd happily mortgage my house to have my daughter get the procedure done... And from what I gather it is costing a lot less in Poland than it is in the states. Which is just as well because the NHS is not covering the cost at the moment and we can't get private medical insurance that will pay for treatment for pre existing conditions at any cost.

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Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.

@dovechick: you'll love Poland Good luck!