clotted off jugulars

[Cece]

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.

[newlywed4ever]

bump

[LR1234]

My left vein is completed clotted after venoplasty

[Cece]

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?

[LR1234]

I'm on the blood thinners for life now but weirdly it helps my fatigue

[soapdiva884]

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????

[Loobie]

Oh man BJBC, is John always this difficult ? 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.

[LR1234]

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[Liberation]

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[soapdiva884]

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

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.

[Cece]

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.

[Liberation]

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[Liberation]

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[MarkW]

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

[ozarkcanoer]

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.

ozarkcanoer