No stenosis; BUT malformed valves/reflux...

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

No stenosis; BUT malformed valves/reflux...

Postby jay1508 » Sun Aug 22, 2010 5:42 am

...this is the conclusion of my Doppler done at EHC in Glasgow.

I'm trying to find anyone who has had a similar situation and had treatment for it. Did they use angio? stents? where was it done? was it done by the regular CCSVI team or did a specialist (VS possibly?) do it?

Trust me to be different, but I'm struggling to find anyone who is/was in the same situation! Hope someone out there can help me please??
TIA
Jay
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Postby Daisy3 » Sun Aug 22, 2010 5:56 am

What did the team in Glasgow suggest that you do?
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Postby ErikaSlovakia » Sun Aug 22, 2010 8:02 am

Hi Jay!
I think my case has been the same. I had malformed/pathological valve in my left jugular. I was only the second patient in Poland (Dr. Simka´s team).
I had reflux because of it. I am RRMS since 1996.
I got a stent but my case is not finished yet completely. Dr. Simka made a Doppler 77 days after my procedure and found out that my blood flow is very slow.
I felt better the first 33 days - I had more energy.
However my nerve pain disappeared 8 months after my procedure.
He will check my veins in October again.
I would do it again. I strongly hope doctors have more knowledge and experience and there will be some more help for 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
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Postby jay1508 » Sun Aug 22, 2010 10:35 am

Hi Daisy - Dr G says that it can be treated but there's nobody doing the procedure in the UK yet and he said that the waiting list for the procedure will be organised that the more straightforward ones will get done 1st, which is understandable! I just wanted to get some idea of what might be in store wrt valve issues.

Hi Erika - Thanx for your post; it does sound like you had a similar problem, glad to hear that you have had some relief :) How long ago did you get treated? I haven't put myself on any other waiting lists, as going abroad would be a logistical nightmare for me (single, disabled mum of 2!) And EHC are very hopeful that someone will be doing the procedure before the end of the year. I hope they have gotten more experience that you can benefit from. Can I ask what improvements you've had and what your symptoms were before?
Bests to u both
Jay
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Postby ErikaSlovakia » Sun Aug 22, 2010 12:23 pm

jay1508 wrote:Hi Erika - Thanx for your post; it does sound like you had a similar problem, glad to hear that you have had some relief :) How long ago did you get treated? I haven't put myself on any other waiting lists, as going abroad would be a logistical nightmare for me (single, disabled mum of 2!) And EHC are very hopeful that someone will be doing the procedure before the end of the year. I hope they have gotten more experience that you can benefit from. Can I ask what improvements you've had and what your symptoms were before?
Bests to u both
Jay
x

Hi Jay!
I had my procedure in Poland November 3, 2009 - you can also see it in my signature.
You can find here more about my symptoms: http://www.thisisms.com/ftopic-8346-day ... sc-15.html
I would say I feel as bad as last year this time but I do not have any nerve pain - I do not take any Carbamazepin anymore.
I will know more in October. I must repeat again I felt better the first 33 days after - I had more energy (my fatigue was better).
You can also read my story: http://www.thisisms.com/ftopic-8640-0.html
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
ErikaSlovakia
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Joined: Wed Jul 29, 2009 3:00 pm
Location: Slovakia, Europe

Postby garyak » Sun Aug 22, 2010 1:05 pm

Hi Jay, 4 weeks ago I was tested at Hubbard foundation in San Diego. They found reflux in both IJVs and possible reflux in my azygous ( but there was too much noise on the MRV to tell for sure ) but doppler ultrasound was not done. I just got back from BNAC in Buffalo where they found on doppler I had reflux in the supine ( lying flat ) position in each IJV but not when sitting upright. It also revealed I had an abnormality called an annulus in one IJV and another abnormality they referred to as a hyperechoic structure in the other IJV. They recommended in Buffalo I have a catheter venogram to investigate further which I'm scheduled for sept 20 in san diego.
The MRV in both clinics showed me to have the opposite of narrow internal jugular veins - bigger than ave with no stenoses .
I will post my procedure experience in a month.
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Postby Daisy3 » Sun Aug 22, 2010 2:47 pm

Were waiting for an appointment from EHC. It has been a while actually, but not heard anything from them...

At least someone in the UK is setting up treatment. I hope they resolve yours soon!
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Postby jay1508 » Sun Aug 22, 2010 3:15 pm

Thanx for your replies guys, it's good to get some feedback! :)
Erika, it's bedtime here now, but I shall follow up on your links tomorrow; thank you for sharing.
Thank you also Gary for sharing your scan results so far, it'll be very interesting to see what treatment gets offered, I look forward to reading about your journey next month.
I know the EHC are very busy behind the scenes Daisy, so I'm sure your appt will be coming thru soon - let us know when it does! Dr Gilhooly did a 3 hour chat room session thru MSRC on Wednesday; hopefully the transcript will be on their site in a week or two; it was very interesting - things ARE happening in the UK, just not as fast as we'd like eh??
Bests to u all
Jay
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