Ella's adventures in Katowice

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

Postby kc » Thu Feb 18, 2010 5:21 pm

I have been checking here all day to see if you have posted any of Ella's results. I am praying for her.

After she has been liberated and has healed it would be great to hear from her also.

Ella I hope that this ms thing will just turn out to be a bad dream for you and that you will conquer the world.

kc
\
You will have had more life experience than someone who is 2xs your age. OK 5xs!!
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Post operative report

Postby Dovechick » Fri Feb 19, 2010 1:38 am

Hi all,
So here goes, probably too soon to say much about progress although I think her feet are warmer although she is not committing herself about them yet.
We had MRV done on Wednesday which to my untrained eye showed something wrong with her right Jugular as lookig at a slice through her neck there were 4 veins on the left and only 3 on the right. This was encouraging. When dr Simka came to do the doppler next day however there was no clear picture of the stenosis, he could see something was not quite right but no clear stenosis was showing up. He thought there might be something wrong with the Azygos vein but when he found out from Ella that she had RRMS and not PPMS, he said he would need to look at the MRVs before knowing how to proceed. He came back a little later and said that he would do the Liberation and would see what he could find under the Xray examination they use to carry out the procedure.
I got to talk to dr Simka when Ella had returned to the ward and he said he had found a severe stenosis very high up in the Right Jugular right next to her jaw which could not be seen by the doppler exam. He suggested that the lowish results from the trials at Buffalo may be due to this problem. which he said was one of the reasons it was important to carry out the complete treatment rather than just the doppler exam to get a complete picture of CCSVI in MS.
More reports as they come in.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby whyRwehere » Fri Feb 19, 2010 1:42 am

I'm glad he found a problem to fix, Dovechick, all my best to your daughter.
I would like to know, if he checked other veins, besides the jugulars and azygous, if you get the chance to ask him. I have a feeling we will be finding many anomalies, once we start looking everywhere (at least for those with less ability).
Thanks for the update.
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Postby costumenastional » Fri Feb 19, 2010 1:48 am

A million thanks. I hope you realize how important this info is.
I KNOW she will start getting better soon enough and when she does, dont forget to let us know.
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veins

Postby Dovechick » Fri Feb 19, 2010 1:51 am

The internal juguars and the Azygos veins are the ones that are important to the brain, other veins may affect other parts of the body but should not have any association with ms. There are two more Jugulars (external jugs) and other veins but they drain blood from the surface of the head, ie scalp and face and should not affect the brain.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Important information

Postby Dovechick » Fri Feb 19, 2010 1:57 am

Yes Costumen, I realise that this may be important information for people who have had a negative result from tests.
Ella had a balloon angioplasty (PTA) which we all know is not as intrusive as a stent but also not as reliable, so there still is a lot of uncertainty in this for her. The next couple of weeks will tell us whether we need to make a return journey to Katowice or not.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby costumenastional » Fri Feb 19, 2010 2:03 am

I understand completely. But the fact that dr Simka used the word "severe" before the word stenosis has to mean a lot.
Did he say if a stent placement is in sight in case of restenosis given the place it has been found?
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Re: veins

Postby whyRwehere » Fri Feb 19, 2010 2:03 am

Dovechick wrote:The internal juguars and the Azygos veins are the ones that are important to the brain, other veins may affect other parts of the body but should not have any association with ms. There are two more Jugulars (external jugs) and other veins but they drain blood from the surface of the head, ie scalp and face and should not affect the brain.


Well, I have to disagree a bit. My husband, as I've said, is missing parts of his sacral venous plexus. This had never been observed before by the treating doctor (IR) in her 15-20 years of investigation in that area. My husband also had the Jugular problem, but his lack of ability in urinating is probably more related to the sacral plexus issue. So, while fixing the jugular is great and helpful to his MS, it would be even better if we could fix more...
I say this because his feet are still fairly white and he has not experienced this return of warmth and circulation....
I would not say that he doesn't have MS, because fixing his Jugular has not corrected every problem, but that MS is not very definite...what people seem to have is CVI in different places, which is why each patient is so different...it isn't so clear cut.
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Postby Dovechick » Fri Feb 19, 2010 2:12 am

costumenastional wrote:I understand completely. But the fact that dr Simka used the word "severe" before the word stenosis has to mean a lot.
Did he say if a stent placement is in sight in case of restenosis given the place it has been found?


Yes both aneasthetist and Dr Simka said that... They are reluctant to introduce stents as long term issues are unknown, but will if liberation does not hold.
The clinic has a very good record of no side effects, so far and I think they want to hold on to that. You have to admire their integrity... Being slightly cynical one could say that there is money in it for them, but my cautious side says lets try the minimal intervention first. "You pays your money and takes your choice"... as they say in UK...
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby LR1234 » Fri Feb 19, 2010 2:19 am

Hey Michelle, Fingers crossed that the angioplasty does the job.

If you could post some stills of the procedure when you get a chance that would be great!

I was treated for a lower stenosis on the left jugular vein but there was questions about stenosis for me higher up.

I don't think Dr Ludgya/Simka were treating that high up before but maybe now they appreciate the need for it to be treated.

When I go back for my check-up I will see they think I need any more done.

I hope Ella is recovering well x
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Postby Johnson » Fri Feb 19, 2010 2:49 am

Thank you for the update, Dovechick. I very much appreciate the reticence of the Katowice crew to employ stents. I have a lot of trepidation for them in the long term. My hope is to get any veins opened up with balloon, and that the research, or at least the availability of treatment at home, kicks in before any restenosis might.

All the best to you all, and safe to home.
My name is not really Johnson. MSed up since 1993
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Postby costumenastional » Fri Feb 19, 2010 2:51 am

Dovechick i have to agree with what you said.
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Postby crocky » Fri Feb 19, 2010 3:10 am

Its great that Ella has had the liberation procedure - As everyone else on here, I'm glued to this forum, and the facebook page to find out all about how it is going to her - what improvements she feels etc.
So well done to you both to have got this far, and my very best wishes for the future. - Suzanne
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Postby ClaireParry » Fri Feb 19, 2010 3:36 am

I'm so pleased for Ella.

The team in Poland do show lots of integrity. In a way, it's reassuring that Dr Simka readily admits that Dopplers and MRV are not showing much, but a more invasive procedure does.

It's sad I think if people are having stenosis high up that are missed. What a shame.

Hope Ella is well. Congratulations on her 'Liberation' :D

Claire
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Postby sunlounger » Fri Feb 19, 2010 6:16 am

hope Ella will start having some improvements soon :D
please keep us posted
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