EJC Liberated in Edinburgh 27/12/2010

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

EJC Liberated in Edinburgh 27/12/2010

Postby EJC » Mon Dec 27, 2010 8:32 am

Today Emma undertook her Liberation procedure at the Edinburgh Clinic in snowy Scotland.

As I type this she is still in the recovery room but I've already had a chat with the surgeon, Dr Reid.

They found the following:-

Right jugular - malformed valve, opened using a baloon - normal flow restored.

Left Jugular - malformed valve, plus the entire jugular vein itself malformed, at least half the normal diameter. Dr Reid treated this vein but was reluctant to overtreat, flow has been increased but not to the rate preferred. This is a little wait and see. It's also difficult to predict how this particualr vein would effect things as technically it's not "stenosed" but has actually formed at a reduced size than would normally be expected.

Azygos - A very significant narrowing found at the top of the azygos, again this was balooned and the flow relief in this particular area was not far off "removing a cork from a bottle" - this was quite significant. The dramatic flow change could not be overstated enough by Dr Reid.

We have yet to have another chat with the surgeon this afternoon, I will take notes and post more information as I get it. I'll also post updates initially on a daily basis noting any improvements the Emma has.

All of the malformations found are considered congenital, although this can only be summised rather than being absolute fact it is a reasonable assumption in the eyes of Dr Reid.

I have my fingers crossed.

Emma decided this morning to stop injections of Copaxone.

The procedure itself took around 90 minutes. Follwed by a further 30 - 60 minutes in recovery depedning on the amount of anesthetic required.
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Postby L » Mon Dec 27, 2010 8:39 am

Great news!
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Postby CCSVIhusband » Mon Dec 27, 2010 8:39 am

Good report EJC ... best wishes during the recovery.
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Postby pairOdime » Mon Dec 27, 2010 9:01 am

Yes, excellent news....hoping for good results & improvements.
It's a paradigm shift
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Postby ErikaSlovakia » Mon Dec 27, 2010 10:16 am

Congratulations! :)
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 sunlounger » Mon Dec 27, 2010 10:28 am

great news thanks for the update
You might find that you’re not lost
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Postby HappyPoet » Tue Dec 28, 2010 6:50 am

Wonderful news! I'm extremely happy for her and you and will be hoping she has many symptom improvements.
Happy New Year!
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Postby soapdiva884 » Tue Dec 28, 2010 8:30 am

Yaaaaaaaaaaay for Emma! I can't wait to hear about how she is doing!
Boyfriend dx'd 6-6-06!!! RRMS............CCSVI procedure done on Nov. 13, 2010 and March 7, 2011 by Dr. Sclafani!
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Liberation +1

Postby EJC » Tue Dec 28, 2010 10:56 am

I'll post updates periodically.

Emma has been diagnosed RRMS since 1997 with signs as early as 1995 with hindsight. Her EDSS pre op was 6.5.

Emma has suffered with Optic Neuritis and has residual eyesight problesm to a point where she had to give up driving earlier this year.

She injects Copaxone daily and takes 40mg of Seroxat daily for the depression.

With someone who has had MS for this period of time we're not expecting miracles or life changing developments overnight, and you're encouraged to have this mindset by Dr Reid.

However, here we are 24 hrs after the procedure.

Emma was pretty tired last night and today, she did a lot yesterday and the drugs take their toll.

Dr Reid suggested Emma continues with the Copaxone so she has done, however he was very keen for her to get off the Seroxat, she'll get off this slowly but has immediately dropped the dose to 20mg.

Upon waking this morning Emma displayed the following obvious improvements:-

Noticeable eyesight improvement, very noticeable
Warm hands and feet (both of which are usually ice blocks).
After a walk down the hotel corridor Emma's gait and general walking was far more controlled and she didn't once feel as though here knee was about to give way for curtsey.

We went out to get Emmas hair done in the afternoon and after a bit of walking around Toni & Guys plus two shops and a restaurant she was out of energy again and the improvements had undone themselves for the day.

It will be intersting to see how she feels after a second nights sleep.

We are removing the dressing this evening, that's not the easiest thing in the world, for those of you undergoing this procedure I would strongly suggest a wax or shave in the relevant areas! Dressing removal then becomes far less uncomfortable as the enitre dressing is self adhesive.

Regular updates will follow.
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Postby Cece » Tue Dec 28, 2010 11:02 am

Congrats to her on the improvements!!
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Postby EJC » Tue Dec 28, 2010 11:27 am

Thanks Cece, it was a surprise as we were not expecting anything right away.

However as the improvements had already undone themselves by the end of the day, the big tell tale is what happens after another nights sleep. Then after a weeks time.

The difficult part for me is to keep myself from constantly asking if she feels any better.

It's also very difficult to remain objective depsite wanting to see so much improvement quickly!
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Postby CD » Tue Dec 28, 2010 1:04 pm

Best of luck to Emma. I pray her improvements keep getting better. Eyesight is so important, I hope that keeps improving too. Don't overdo, veins need to heal after being stretched by balloons.
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Postby Loobie » Wed Dec 29, 2010 4:57 am

This is good to hear EJC. I hope she just keeps surprising you!
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Postby HappyPoet » Wed Dec 29, 2010 9:40 am

EJC, you must be filled with joy!

It's fantastic to hear of such good news upon a liberation. Both motor and sensory improvements! Wow! Both above-the-neck and below-the-neck improvements! Wow!

Tears of happiness for Emma filled my eyes when I read of her improvements with her vision, the importance of which we all know cannot be overstated.

Thank you for the updates on Emma which are greatly appreciated, and I hope you can keep them coming our way. Please tell Emma that many of us are pulling for her and are keeping her in our prayers.
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Liberation +2 days

Postby EJC » Wed Dec 29, 2010 11:06 am

Liberation +2 Days.

Pretty similar to day one actually, Emma awoke and had very clear improvements in eye function and motor functions, She isn't sleeping particularly well, but then neither am I and we're both currently putting that down to being in unfamiliar hotel beds.

However over the course of the day as Emma tired the improvements receded.

We travel back home tomorrow by car (440 miles) which will take pretty much all day. So we expect that to be exhausting.

We had a check up today with both Mr Reid (surgeon) and Mr Velu (anaesthetist) whilst they were in between procedures.

This was more a chat on how things had gone than a specific consultation as such. It was suggested Emma take 75mg Aspirin daily to help as a blood thinner. I actually take these for a different reasons and use the enteric coated (don't dissolve in your stomach) pills available in Boots at the pharmacy counter for £2.99 for 56 tablets. So they will suit Emma just fine.

We asked why Mr Reid considered Emma should continue with Copaxone. The answer to this is as much to do with continuity as any other reason. We don't want to undertake the liberation procedure and stop the drugs at the same time as it's then quite difficult to attribute any positive (or negative) results specifically to the procedure itself.

Short term (next week or two) Emma needs to take things easy, but then we need to get a rehabilitation program organised. This isn't as easy as simply joining a gym but needs to be more physio orientated in the same way an accident victim with muscle wastage would be brought back to health. At present we have no idea what Emma's capacity will be for this, it's something we'll have to take as it comes.

It was good to see some familiar faces at the clinic today (that's other patients not staff!).

So hopefully we should have a few more posters in the near future explaining their own experiences.
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