Follow Up Doppler

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

Follow Up Doppler

Postby ClaireParry » Thu Nov 04, 2010 7:24 am

I've just seen Dr Ludyga for a follow up Doppler.

I'm slightly disappointed to say the least. My MS is worse than it ever has been and I really was pinning my hopes on that both my veins have collapsed again.

However, it would seem that the right vein has an 'ok' flow but he sees something on the right that may indicate something not being right. He feels it warrants another venogram to have a look and that will be tomorrow.

Just wasn't the cut and dry result I was looking and may be I will be one of those who don't benefit from this :cry: This is just me being overly emotional. I did get benefit 1st time round for sure.

Anybody elses experience greatly received

Claire x
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hi,

Postby blossom » Thu Nov 04, 2010 9:08 am

hi, hope your doc gets this figured out and you start getting better again. we all know there is something to this by the mixed results we all got. but i just hope they can figure out the puzzle soon. my results and hearing stories like yours makes me sad and i know it's hard to stay positive. but, i guess all any of us can do is hang in there and try not to give up. does it ever get easier? keep us informed and the best to you.
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Postby Billmeik » Thu Nov 04, 2010 9:09 am

what were the numbers on the two sides? 500 is what the goal is. Are you close?

I did meet someone with 800 on both sides who was having ms stuff...
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Selective Venogram

Postby MarkW » Thu Nov 04, 2010 9:17 am

Hello Claire,
I suggest you make sure all your major veins are checked with a catheter and x-rays. I was checked/ballooned for 3 (three) hours. Stenoses are being discovered in new places so you need a full check for peace of mind.
Best wishes,
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
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Postby esta » Thu Nov 04, 2010 10:03 am

hi claireperry
ohhhhh, things are never what we figure they should be, are they!! then this. dr ludiga is the best there soooooo lets hope he finds something worthy of changing so you'll get better. i can only wish all the best for you and can hardly wait for your next post...
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
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Postby moochsid » Thu Nov 04, 2010 10:43 am

Hi Claire
We are in the same boat just having seen Dr Ludyga today with exactly the same hopes and results. We are in Angelo hotel and Iza is having a venogram tomorrow. I contacted you some time back when we were here in March and missed you by a day back then. Kevin
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Postby ClaireParry » Thu Nov 04, 2010 2:41 pm

Thanks Blossom, Esta. I hope something comes of this so much.

Billmeik, didn't think to look at the numbers :roll: To focused on whether I needed an op or not.

Mark - will def ask if they will check all necessary veins. I really want this done properly.

Kevin - can't believe we're here at the same time. I guess we'll see you at the hospital tomorrow. Hope Iza is feeling ok with her Doppler results. It is disappointing when the positive results have gone not to get a clear cut answer. See you tomorrow,

Claire x
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Postby xia » Tue Nov 09, 2010 3:48 am

Hi Claire!
I hope you eventually got a good outcome from your visit to Poland. Let us know how you are doing...
I hope Iza is doing well too.
Take care
xia x
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Postby Astrid1961 » Thu Nov 11, 2010 2:37 am

I have a question, Dr Simka told me that doppler gives just indication of the problems, only the angiography will show what is wrong.
But how can a check up doppler be enough to see if there is restenose or other problems?

Astrid
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Postby esta » Thu Nov 11, 2010 11:31 am

Astrid, the ck-up doppler shows how the flow is workking. it shows if the vein is doing its job. it shows if it is blocked or running slow. you can hear it and see it.
i saw and heard it all the day after my stent was inserted. when i get another follow up, it should be the same.
cheers
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
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Postby moochsid » Sat Nov 13, 2010 6:15 am

Hi Xia
How you doing.Just got back from our revisit to Katowice.
Hi Astrid
I just posted on the blocked stent thread re Doppler scans variability.
Kevin
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Postby ClaireParry » Sun Nov 14, 2010 1:41 am

Hi,

For me the improvement is very little if any. I'm not completely despondent however, I believe my jugs are open as my spasticity seems to be a little improved, may be for me the improvements are longer coming.......

I do feel as someone mentioned in an earlier thread, under treated. Despite asking before the op for ALL veins to be checked including Azygous, Iliac and Vertebral I don't believe they were. Just re-ballooning of my jugs.

I will def go to the South of England EHC to check for patency - but will seriously think re more surgery until I can see a clear and comprehensive diagnostic path being followed, pref here in the UK.

Xia - its good to see you here - How are you?

Kevin - how is Iza? I hope she's well?

I really hope to post with some improvements soon!!!

Claire x
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Postby xia » Tue Nov 16, 2010 9:20 am

Hey Claire and Kevin!
All is good here, my clots are being treated with warfarin, which isnt too bad.
Working hard with my physio so hopefully should be gaining strength...
I hope you and Iza are making progress and more importantly enjoying life! :)
Take care guys
xia
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