Re:

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

Re:

Postby ozarkcanoer » Wed Jul 14, 2010 5:20 am

I assume the thrombosis in the left IJV wasn't there in January ? Does this mean that having the procedure in January may have caused this ? I am so sorry this has happened and am sending all my hopes for some help for you. You say you feel pressure in your head. That is one of my ongoing symptoms and one that is very hard to explain to my doctors.

Thank you for letting us know. We need to know the whole story not just the happy endings. But surely there will be a happy ending for you.

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Postby Blaze » Wed Jul 14, 2010 5:26 am

What a bummer. I agree with ozarkcanoer. Thanks for sharing that information. We all need all the information we can get--even it it isn't what we want to hear!

Take care.
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Postby costumenastional » Wed Jul 14, 2010 5:39 am

How come Bulgarians are not afraid to fix it? Aren't they afraid also?
And why did they balloon both your jugs 5 months after your first angio..
Were they really that bad? I mean, your vertigo doesnt mean that you restenosed by itself.

Anyway, this is bad news altogether. Thank you VERY much for posting this LR.
Please, stay in touch. This is most important.
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thanks

Postby LivabirdsHubbie » Wed Jul 14, 2010 5:49 am

Thanks for the update, hope things turn around for you.

I am taking my wife to Bulgaria in October, we had treatment in Poland in april but we are not convinced they looked at the azygos that well and as she has PPMS we think it is worth the trip.

All the best
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Postby HappyPoet » Wed Jul 14, 2010 6:10 am

Oh you poor thing... I'm so sorry this has happened. Starting this thread must not have been easy for you, but I thank you very much for sharing your situation.

Sending healing thoughts to you***

Best wishes,
~HappyPoet
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Postby EJC » Wed Jul 14, 2010 6:38 am

That's just terrible news.

Is there an explanation to how or why the thrombosis formed?
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Postby shye » Wed Jul 14, 2010 6:57 am

So sorry to hear this LR-- sending much light to you...
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Postby TMrox » Wed Jul 14, 2010 7:28 am

Hi,

Sorry to hear that you had your IJV thrombosed.

In one of your posts about your first treatment in Poland you had commented:
I then sent my scans to Dr Dake. He saw that both my jugular veins were pancaked flat at C2 and a further occlusion was seen in the lower left jugular

I went to Poland to be treated by Dr Simka and he saw the problem with the left lower jugular it was obvious but did not see the stenosis that Dr Dake had seen high up. I did mention it but he didn't think it was relevant or too risky to treat (not sure)

http://www.thisisms.com/ftopicp-89662-.html#89662

So I'm wondering, whether the problem that Dr Dake spotted on your jugular and that Simka did not treat could be related to your now thrombosed jugular.

Were you on blood thinners after your first treatment? I've read in Dr Sclafani that he regretted not to give blood thinners to some of his first patients treated with angioplasty. Apparently in one case the vein thrombosed and was lost forever (although it was quite sick to start with).

Also, have you been tested for thrombophilia? I think I had mentioned to you that I have been tested for that condition (propensity to develop thrombosis) as it has been reported it can cause my neuro condition (transverse myelitis). I was negative for thrombophilia, which was a relief so there were less chances of developing complications after the angioplasty.

Rox
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Postby cheerleader » Wed Jul 14, 2010 7:31 am

This is terrible. I am so sorry it happened. It's very important that you share this, as hard as it is. Thrombosis is a real risk of angioplasty. It sucks that it had to happen, and I'll be praying for an answer...sometimes the anticoagulants are enough to "melt away" a new clot...hoping for that in your situation.
hang in there, and keep us posted.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby silverbirch » Wed Jul 14, 2010 7:53 am

So sorry to hear this I know how this delays your plans.

Bulgaria- on the reformed MS there is a Dr who had procedure done and a vein in his leg put in his neck.
Would this be an option for you ?

Hey PM me if you fancy a coffee & chat

Silverbirch
Last edited by silverbirch on Wed Jul 14, 2010 3:49 pm, edited 1 time in total.
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Postby eric593 » Wed Jul 14, 2010 9:41 am

So sorry this has happened to you. Such a good reminder that our veins can be finicky. Please please please feel like you can come here and share. This is YOUR SUPPORT forum too and you absolutely should come to receive support from others. This place needs to be open to learning about all the risks and possibilities, and it's because of brave people like you talking about your experiences that we can. It can't be "all good, all the time" if that doesn't reflect reality. It is a disservice to all not to hear ALL the experiences.

I wish you nothing but the best. I experienced vertigo and it's not fun. I understand why you wanted to try to "fix it" asap. It's a nasty feeling.
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Postby Vhoenecke » Wed Jul 14, 2010 9:53 am

Thanks so much for sharing this information. We must all know that we do have risks and we appreciate you letting us know your plight. Bless you and I hope things turn around for you.


Val
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Postby pklittle » Wed Jul 14, 2010 12:19 pm

I am so sorry to hear this! Thank you for sharing.
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Postby coach » Wed Jul 14, 2010 1:10 pm

so sorry to hear of your difficulties. Sending prayers up for you.
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Postby selkie » Wed Jul 14, 2010 3:06 pm

I am so sorry to hear this. I hope the doctors can help - so sorry that it is so difficult to know what to do. Will hope to hear things improve for you.
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