I had my ccsvi procedure on Saturday!

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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I had my ccsvi procedure on Saturday!

Post by Coolcatcarrie » Fri Jan 21, 2011 10:49 am

I had my treatment in Scotland and the whole experience was extremely positive! Every single member of the team at the clinic were really really great! The surgeon was so genuine, calming and kind!
I had my azygous and left and right jugulars ballooned successfully. I have been told to rest for a week and I am already seeing improvements, I am 27 and my walking has been badly effected by ms! My legs which were really stiff are not now! They are like jelly because they have got no muscles! Heehee! It feels so good that things are changing! I dont use a wheelchair but I do use a mobility scooter for clothes shopping and walks! So I need to get leg muscle building and me and my husband have ordered a recumbent exercise bike! Also I have for ages been really really chilly with freezing feet! Well already that's changed! I haven't had the fire on once and the house is a normal temperature! Gary my husband is amazed because I normally have him suffering with the heat in here! No more freezing feet in bed either! I also for years have had a red/blue right foot (the side that really struggles and I have right drop foot) now it's normal colour! Apart from two toes which are nearly there bless them!
I haven't tested properly my balance yet because I am chilling! Lol! My right foot drop is quite bad - I use an electric foot drop stimulator - I am sooo hoping that given time this will improve - what do u reckon? Any experience with that?
A little while ago I gave up beta interferon in place of ldn and I probably wont be seeing my neurologist again! I have found a great doctor at the essential health clinic and I will be going to see him Instead. I also have a great physio and I will be seeing her soon.
All in all it has only been 5 days and I am feeling great about the future and excited about rebuilding my physical self! Oh yeh I've got pinky cheeks too!
Carrie x

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Post by pairOdime » Fri Jan 21, 2011 11:06 am

Wonderful news Carrie....your excitement comes through in your report. Here's to further healing and continued improvements.
It's a paradigm shift

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Post by charlie656 » Fri Jan 21, 2011 1:36 pm

Encouraging news, thanks for sharing!

Im up in Aberdeen :)

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Post by Cece » Fri Jan 21, 2011 1:51 pm

Congrats, Coolcatcarrie!

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Post by SaintLouis » Fri Jan 21, 2011 1:55 pm

That's wonderful! Thanks for sharing.

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Post by prairiegirl » Fri Jan 21, 2011 2:39 pm

Great to hear of your positive results; best to you for continued improvements!

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Post by garyak » Fri Jan 21, 2011 3:39 pm

good for you - please keep us updated periodically, best of luck, gary

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Post by blossom » Fri Jan 21, 2011 4:58 pm

i am always excited and happy to hear of people this helps. the best healing thoughts sent your way.

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Post by NotFound » Fri Jan 21, 2011 8:50 pm

SO great to hear Carrie! May you get better and stronger every day!

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Post by CD » Fri Jan 21, 2011 10:18 pm

I love good news Carrie. I had the CCSVI procedure 6 weeks ago and after the healing part, you see improvements that you forgot you even had a problem with. It's truly a miracle how it works over time.

I hope you see more and more improvements. Good luck to you.

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Post by mags4short » Sat Jan 22, 2011 12:51 am

Congratulations Carrie!

I hope that things continue to improve, keep us updated.

Mags x
Alone we can do so little, together we can do so much :)

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Post by Luvsadonut » Sat Jan 22, 2011 1:00 am

Wonderful news Carrie, I'm awaiting news from
Scotland regarding a date after I was scanned in Sept. My symptoms are similar to yours but probably not as severe, could you tell me if your valves were malformed and if so how did they treat them. I'm sure your improvements will continue and good luck with everything.
Thanks for the update also.

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Post by EJC » Sat Jan 22, 2011 2:04 am

Great news Carrie, the staff there are excellent and make you feel very comfortable.

Post updates for us and don't worry if you have to odd bad day or two, it's part of the healing process as your body is simply not used to it's new blood flow.

Emma had a three day period where we thought she was starting to relapse, but on the fourth day she was more than back to normal and showing further improvements.

One month on Emma is showing improved strength and stability in her legs, we ordered a Cross trainer which arrives this coming Monday - actually that's more to keep my ever expanding waist line from expanding further! But we figure Emma can get some use from it too.

Your legs will improve slowly as you gradually reverse the muscle atrophy...it fells like nothing is happening, then you suddenly realise you're climbing stairs in a way you haven't for a couple of years....

The improvements are tiny and incremental and that's exactly how it needs to be.

I'm just delighted to read another happy Edinburgh patient.

Keep the clinic updated with your results, they are very interested in collating as much information as possible.

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Post by Coolcatcarrie » Sat Jan 22, 2011 2:10 am

Thank u so much everyone for your lovely messages!
Sorry lovesadonut I'm not sure about my valves, I know that my 3 veins were v stenosed and Mr Reid was really happy with how it all went! :-) it was all a big rush cos I was scanned back in August but I managed to get a cancellation on Saturday (on Friday) so it was literally rush rush and great cos I had no time to worry about it and off we flew from Bristol on Fri night! X

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Post by homefront » Sun Jan 23, 2011 2:34 pm

Hi Carrie

we were next to you and Gary in the waiting room at Edinburgh. I posted on the 'EJC liberated' thread to say that we had seeen nothing so far but having said that, my wife, Annemarie, does seem to have rosier cheeks and may have slight vision improvement.

So glad that you are seeing improvements already. We hope they continue for you.

Peter & Annemarie

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