Alot of thrombosis going around lately.............

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

Alot of thrombosis going around lately.............

Postby soapdiva884 » Sat Mar 19, 2011 7:36 am

I am seeing so much talk about thrombosis and we are experiencing it ourselves. John formed a thrombosis after first procedure and second procedure could not bust through it.
My question is: there is thrombosis with and without stents, so that seems to be the most important issue at hand. So, what can be done to prevent this? John did Arixtra both procedures post for 20 days....another week of it for the second procedure.
The Arixtra does not seem to be the answer, so what now? God willing there is no thrombosis with this second procedure. But, we are just wondering what is the future of CCSVI if a whole lot of people are going to form clots that impede the flow altogether in the jugs?
The question at hand also is do we just keep doing these procedures if John will just keep clotting off? How many blockages can you have before things are really not working as they should and your making it worse? When do stents play into this?
It is so discouraging when you go through all of this and then your told that you have little to no flow in a jug, considering you had more flow pre procedure. Albeit not the right kind of flow, but you had flow before hand.
Any thoughts? Thank you!
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 Johnnymac » Sat Mar 19, 2011 8:43 am

this is definitely a concern of mine as well with my wife scheduled for her 1st procedure the first week of May. Please keep us updated on what you guys experience.
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Ask Questions & Demand Clotting Screen

Postby MarkW » Sat Mar 19, 2011 9:06 am

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 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 with 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

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Mark's CCSVI Report 7-Mar-11:
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Re: Ask Questions & Demand Clotting Screen

Postby Johnnymac » Sat Mar 19, 2011 9:30 am

MarkW wrote: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 screen has been performed before de-stenosis is performed.


What in the above posts could allow you to make this assumption? I can tell you that the pre-screening we have gone through was extensive, and includes blood testing before the procedure..in fact we were instructed to wait until we were within 30 days of the procedure to have the blood work done. I'd be willing to bet Diva and her husband were instructed the same.

Sorry if this response was in-appropriate but it felt like you were taking an unwarranted shot at me or Diva implying we aren't doing the right things for our spouses.
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Postby CureIous » Sat Mar 19, 2011 10:27 am

LR1234 wrote:I believe most of these clots are probably not due to clotting issues but to damage to the vessels. I have no clotting disorders and I have a totally clotted jugular (actually rather than clotted its now full of scar tissue)

I think just because you have no clotting disorder it does not mean you will not clot. (Even with blood thinners)


Unfortunately, I think you are correct. There's only so much that can be screened out prior to, and only so many meds to counteract, and only so many precautions that can be taken. Seeing how my body reacted when one infintesimally small fleck of metal got stuck in it at work, corneal scratch followed by an infection, inflammation, blurriness and all that, makes me wonder how stretching veins that drain the brain cause the body to go into overkill protection mode.... Regardless of the methods used. Injury is injury is injury.

Much to ponder before undertaking such things. Yes, it is incumbent upon patients to thorougly explore the information available, but then again, when grandma had her quadruple bypass there was no internet, how did patients educate themselves back then? They didn't for the most part other than office visit gleanings. We aren't medical professionals, and websites as far as I can gather, aren't diagnostic instruments and can't dispense anything other than information, but how much is too little, or too much? Hindsight's 20/20, every patient and Dr. is unique in their capabilities to grasp concepts and/or act on them.

But I'd hardly blame the patient in every circumstance, trying to predict how the body will react in a given situation is more art than science. Sometimes there's just no knowing.

Mark
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Re: Ask Questions & Demand Clotting Screen

Postby soapdiva884 » Sat Mar 19, 2011 11:13 am

Johnnymac wrote:
MarkW wrote: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 screen has been performed before de-stenosis is performed.


What in the above posts could allow you to make this assumption? I can tell you that the pre-screening we have gone through was extensive, and includes blood testing before the procedure..in fact we were instructed to wait until we were within 30 days of the procedure to have the blood work done. I'd be willing to bet Diva and her husband were instructed the same.

Sorry if this response was in-appropriate but it felt like you were taking an unwarranted shot at me or Diva implying we aren't doing the right things for our spouses.


Extremely extensive testing and exams along with bloodword pre and post procedure. ALONG with knowing full well what is going to happen and what could happen. I would hope that NO ONE is having procedures done without

QUOTE: having a full discussion of their cardio-vascular family history and knowing that a blood screen has been performed before de-stenosis is performed QUOTE

That was certainly not the case with John!

I just wanted peoples take on thrombosis and find out what others think about multiple procedures and the risk of thrombosis.
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 soapdiva884 » Sat Mar 19, 2011 11:17 am

Johnnymac wrote:this is definitely a concern of mine as well with my wife scheduled for her 1st procedure the first week of May. Please keep us updated on what you guys experience.


I sure will.............and I will be thinking of you and your beautiful wife and hoping for the best outcome possible.
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 » Sat Mar 19, 2011 12:27 pm

If it's the same blood test within thirty days that I had, that is just the test for serum creatinine. That is to make sure the kidneys are functioning and can clear the contrast dye used in the procedure.

Both Dr. Arata and Dr. Sclafani have said or been quoted here at TIMS saying that blood screening tests for clotting disorders are not needed before the procedure. These tests are not done for other patient populations before they undergo angioplasty or venoplasty. The number of people with clotting disorders is a very small minority. BUT if you have a known clotting disorder, much more care should be taken by the doctor before during and after the procedure, in my opinion based on some of the outcomes we've heard.

e Arixtra does not seem to be the answer, so what now?

I wish Arixtra had prevented it. You said that John experienced worsening at 6 weeks, so maybe 3 weeks of arixtra isn't enough? People go on Plavix for longer, I think, not sure. Or maybe lovenox is a better anticoagulant. I wish we had the answers already, I am nervous not knowing who will sail through the procedure and who will have these sorts of complications.

But, we are just wondering what is the future of CCSVI if a whole lot of people are going to form clots that impede the flow altogether in the jugs?

I hope the future is that the doctors figure out how to stop it from happening to anyone.
The question at hand also is do we just keep doing these procedures if John will just keep clotting off? How many blockages can you have before things are really not working as they should and your making it worse? When do stents play into this?
It is so discouraging when you go through all of this and then your told that you have little to no flow in a jug, considering you had more flow pre procedure. Albeit not the right kind of flow, but you had flow before hand.
Any thoughts? Thank you!

He can't afford to clot off that other jugular or the aygous.....
You've got follow-up care lined up?
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No Criticsm Personal Intended Johnnymac

Postby MarkW » Sat Mar 19, 2011 3:14 pm

We should all realise that using balloons and stents in pwMS is not a well documented procedure. This is a novel use of artiel angioplasty. Veins and arteries are different.

Have a full discussion of their cardio-vascular family history and know that a blood screen has been performed before de-stenosis is performed. An anti-coagulant regime is not the same for everyone.
This is more difficult if you are travelling great distances for your CCSVI treatment. Reduce risk if you can by asking questions.

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 MegansMom » Sat Mar 19, 2011 4:23 pm

There may be other things to consider besides clotting or hypercoagulative states. PwMS have other significant differences besides the blockages.

PwMS have very high Endothelin1. Hundreds of x normal.
I mentioned this in another post that cited the in vivo study- quite funny- it was in a journal of neurology. This polypeptide is a very powerful vasocontrictor . I am wondering if patients should get their levels Pre-CCSVI venoplasty?

E1 rises with hypoxia, reflux flow and hypoglycemia ( the vessel senses that it needs to squeeze tighter to get what it needs)- those conditions in the endothelial wall signal to the body that the vessel ( veins and arteries,et al) to increase E1 to shore up the vessel- it's the body's compensatory mechanism.
E1 causes vessel and valvular fibrosis and hypertrophy- and it's potent- like a drug-
We have to combat this by increasing NO ( nitrous oxide) production
Or get the E1 level down.

Someone needs to be doing research about this piece of the puzzle. Maybe it's not important but researching it should not be over looked. IR's seem focus on the plumbing and clotting and scarring because they are used to normal people with normal E1 levels. The neuro's are not really on board. We need some more vascular guys that are up on the endothelial cellular chemistry.
Cat (Catherine Somerville on FB)
MegansMom
My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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PwMS are Special

Postby MarkW » Sun Mar 20, 2011 8:25 am

One of the differences between pwMS and average people - thanks for the info MegansMum. The problem I see is that no one knows what is different between pwMS and average people, or what it means for venoplasty.

At the risk of being more boring than usual:
"Human beings are different so there is no one post venoplasty drug regime that should be given, each should be tailored to the individual. PwMS seem to have unusual CV/blood profiles compared with the general population..........."

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 cheerleader » Sun Mar 20, 2011 8:59 am

CCSVI Alliance will be putting up pre and post venoplasty recommendations on our site very soon. We recommend blood coagulation tests prior to any procedures. These include d-dimer, SED rates, or INR. Not all will be available, but this is a very important discussion to have with IRs before procedures. General practitioners are able to perform these blood tests. (Dr. Dake started doing the d-dimer after the second patient showed hypercoagulation issues.)

This is why local treatment and an ongoing relationship with an IR are essential. Venoplasty patients need to have pre and post care. Venoplasty is not an appropriate procedure for medical tourism, or a one-time procedure. Patients need an ongoing relationship with a doctor, as a heart patients has with a cardiologist.

Another difference in pwCCSVI vs. normals is the shift in from collagen I to collagen III in the jugular tissue. This collagen is stiffer, more likely to thrombose or restenose than normal vein tissue. The collagen shift is activated by inflammation and hemodynamic changes, and is seen in other venous diseases, like varicose veins.

Some of the new IRs coming on board do not discuss this, or say it is of no importance. But for those advocates and patients that have been following this research for over 2 years, we understand the importance of an pre and post testing. We hope the doctors will establish a standard protocol for venoplasty and follow up in the very near future.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Cece » Sun Mar 20, 2011 10:09 am

cheerleader wrote:We recommend blood coagulation tests prior to any procedures. These include d-dimer, SED rates, or INR.

I can see where this is a good idea. An ounce of prevention rather than a pound of cure, post-venoplasty. But what would the doctor do differently based on what the blood coagulation tests show?
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Postby Johnnymac » Sun Mar 20, 2011 10:13 am

cheerleader wrote:These include d-dimer, SED rates, or INR.


thanks for the terminology here, I'll make sure to ask Courtney's GP about these tests as well when we do the creatinine level tests.

I'm currently trying to find an IR in Dallas for follow-up visits and consult with the doc doing her procedure so that we have someone local for after-care. If anyone has recommendations of an IR in the DFW area please send me a PM.
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Adjusted Prescription ?

Postby MarkW » Sun Mar 20, 2011 10:34 am

Cheerleader wrote:
We recommend blood coagulation tests prior to any procedures. These include d-dimer, SED rates, or INR.

Cece asked:
I can see where this is a good idea. An ounce of prevention rather than a pound of cure, post-venoplasty. But what would the doctor do differently based on what the blood coagulation tests show?

MarkW answers:
The patient could need medication pre-procedure; different medication dose post procedure; long term checks and/or medication.
Having tests pre-procedure also gives a baseline for comparison. Getting a family cardiovascular history may give clues for more tests/caution.

The tests performed and medication prescribed could vary according to geography. Your medical doctor will prefer some tests/drugs over others.

I hope you get the message that 'one size (regime) does not fit all'. You must ask questions before venoplasty not after.

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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