clotted off jugulars

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

Postby Cece » Wed Jan 26, 2011 8:25 pm

Patient gets liberation therapy abroad struggles to find followup care.
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McGregor, 53, had his first venous angioplasties in June in Bulgaria. For six weeks afterward, his symptoms improved dramatically, Alisa said. His energy returned and he could speak clearly.


"It was just like somebody snapped their fingers and he was back," she said in August.


His condition declined, however

"The vascular on-call doctor at Royal University Hospital said they wouldn't treat us, that we need to go to the MS Clinic or see an MS doctor," said Alisa.[...]"They wouldn't even check the jugular veins because they believe veins really don't even have anything to do with MS. . . . Really, I just want Watson's jugulars checked for clots. I just can't see that that's such a huge issue. And probably they would if he hadn't had this treatment. That's what really (upsets me)."
When I sent all the CDs (with Watson's information) to the doctor in California, he phoned back and said it was a blood clot, likely blocking the stent," Alisa said.


"When we went there, they couldn't even get the scope through the stent, and the blood clot's on top of it, so they chose to leave it there. . . . They said it was probably safer just to leave it."

This family has now travelled and paid for three CCSVI procedures, with a clotted stent as a result. :(
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Postby newlywed4ever » Sat Jan 29, 2011 6:39 pm

bump :(
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Postby LR1234 » Wed Mar 16, 2011 8:17 am

My left vein is completed clotted after venoplasty
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Postby Cece » Wed Mar 16, 2011 8:29 am

What a bind you are in, LR1234. I wish this hadn't happened. If there is a clot, would you go back on the blood thinners?
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Postby LR1234 » Wed Mar 16, 2011 9:17 am

I'm on the blood thinners for life now but weirdly it helps my fatigue
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Postby soapdiva884 » Wed Mar 16, 2011 9:36 am

Johns left jugular clotted after his first procedure and Dr. Sclafani could not get through during the second procedure, so he went through the neck and still could not get through. That made for a long painful day for John and Dr. Sclafani I might add!
Very sad situation for everyone experiencing this. And this was with Arixtra for 20 days. He did mention that some people have a natural clotting disorder that requires more than Arixtra. I just hope Johns right does not clot off like his left, then what????
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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Postby Loobie » Wed Mar 16, 2011 12:00 pm

Oh man BJBC, is John always this difficult :wink:? You know I'm kidding and only do so since I know how much of a card John is. I wish you guys the best. I hope that's not what they find in my stents in my upcoming appointment.
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Postby LR1234 » Wed Mar 16, 2011 2:54 pm

.......
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Postby Liberation » Wed Mar 16, 2011 4:17 pm

I am really sorry to hear that some of you had problems with clotting. Dr Code, a Canadian doctor with MS who went through the CCSVI procedure wrote the following n his blog:
"In contrast to this, interventional radiologists recognize that angioplasty of veins is a relatively safe procedure because it deals with a low-pressure system. In addition, plaque hardly ever occurs in the venous system and if a blood clot should occur it travels to the heart and is pumped to the lungs. In the lungs small blood clots are dealt with routinely and create no major troubles. Once again neurologists have described blood clots to the lungs as a devastating and potentially lethal outcome of CCSVI angioplasty. However, the risk of serious blood clots to the lungs is almost completely due to large blood clots from the leg or pelvic veins. These are large enough to restrict or almost eliminate the heart function and so represent a large risk factor. The size of the blood clot generated from the jugular or azygos veins is relatively minimal and has very little acute risk to stopping heart function. If one looks at concerns of some neurologists we realize their anxiety is somewhat misplaced. We must remember to compare apples to apples and oranges to oranges."
When I was reading this I was not afraid as much of this problem as I am now when I see several people facing thrombosis and clotting. I am wondering if this is mostly due to stens or ballooning or the inadequate chose of anticoagulant regimen. Any view on this?
How can thrombosis or clotting be detected for sure?
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Postby soapdiva884 » Wed Mar 16, 2011 4:59 pm

Loobie, you are too funny! Yeah I know exactly where your coming from and I pray that your appt. goes well and there is no clotting too.

LR1234, John is not feeling well. He has no improvements from this second procedure. He seems to be rapidly progressing now. He is on Arixtra still, 11 more to go, I count because I give them to him and hate it. LOL He did have his other jugular ballooned this last time and Dr. Sclafani says his azygous is fine 8O

Liberation, thrombosis was detected in John by u/s and then when Dr. Sclafani could not get through there during the second procedure-we knew for sure.

It is so disheartening and makes me question, just how many procedures can you go through and just how many clots can you endure before you say "enough is enough"??? There must come a time when you have to give up on the unknown and reevaluate things. We have not gotten there yet.
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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Postby Cece » Wed Mar 16, 2011 5:38 pm

Liberation, I read that as Dr. Code reassuring that clots that happen to travel aren't going to do damage to the lungs. We've heard from two patients who've had pulmonary embolisms as a result of a clot from the venoplasty procedure and if memory serves they both recovered well. The big concern that I and others here have is not if a clot travels but if a jugular clots and it solidifies in the jugular making the jugular no longer functional.
It is so disheartening and makes me question, just how many procedures can you go through and just how many clots can you endure before you say "enough is enough"??? There must come a time when you have to give up on the unknown and reevaluate things. We have not gotten there yet.

I would have a hard time accepting it too if there is anything left to try. Is there any hope at this point in time for the vein to recanalize and have flow again?

I am more optimistic about the future potential of vein grafting after Nunzio explained it better.

I wish there was no need for this thread and that no one else would end up here. :(
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Postby Liberation » Thu Mar 17, 2011 12:47 pm

Thanks Cece. How can it be monitored regularly whether there is thrombosis, clotting? I would assume that those doctors who are not trained for CCSVI can not notice this by Doppler. They would not take blood tests either in every two weeks. So, what can be done? I would really value dr Sclafani's opinion on the risk of thrombosis, clotting and the way it can be monitored and treated if it occurs.
Another question is the intimal hyperplasia. What is the risk of this? I would think not enough time went by to say too much about the experiences, but other veins have been ballooned many times in the past to have a clue about it.
Is there anyone who has experience with dr Sinan (dr Tariq) and knows something about his results and the problems that occured there?
Can it be checked before the operation if someone is prone to clotting?
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Postby Liberation » Sat Mar 19, 2011 6:51 am

I've just read in a different thread that dr Arata said that thrombosis after CCSVI treatment is anatomic and not due to clotting disorders. Anyone has a guess what does he mean? It would be important to know when we run a greater risk in terms of thrombosis.
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Ask Questions & Demand Clotting Screen

Postby MarkW » Sat Mar 19, 2011 10:16 am

Same message again folks:
I get pretty exasperated when I read that patients are allowing surgeons/IRs to undertake balloon venoplasty or stenting without having a full discussion of their cardio-vascular family history and knowing that a blood clotting screen has been performed before de-stenosis is performed.
Human beings are different so there is no one post procedure drug regime that should be given, they should be tailored. PwMS seem to have unusual CV/blood profiles compared to the general population. You (the patients with MS) must take responsibility for asking questions.
Read CCSVI Alliance and other info before walking blindly into de-stenosis.

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby ozarkcanoer » Sat Mar 19, 2011 11:53 am

I recently (March 16) had my second CCSVI treatment by Dr Ziv Haskal. He discovered that the stent in my left IJV is completely occluded with SCAR TISSUE. He said that scarring and stents is not uncommon. A doctor cannot tell from any kind of imaging what the nature of an obstruction is, whether it is a blood clot or scarring. He also said that no amount of blood thinner will prevent scarring.

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