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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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CD
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PostPosted: Sat Jun 11, 2011 11:26 pm 
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OC,
I was told my left three stents were occluded recently by my IR. I have been running out of money for procedures. (two)

I went on a higher dose Aspirin on my own. That was not on my IR's protocol. My thyroid ultrasound dr said I have a partial occlusion, :?: as seen on his US of the left Jugular vein. Hmm

Now my Vascular surgeon, who only does my carotids annually, said he sees flow in the stents. Slow but flow, maybe have another Venogram by my treating IR to be sure who is right. (sigh)

Now three doctors, three different reports. Each has the knowledge, and the new color Doppler, only one is my IR.

I think head turning has a lot to do with seeing flow, or not. Muscles can stop the flow turning the head. The Vascular doc thinks the stent is narrower on top from outside forces near top of neck below ear, but not by much.

What to do?
CD

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CCSVI Procedure December 2010
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dania
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PostPosted: Sun Jun 12, 2011 8:41 am 
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What to do? Good question with no easy answer. But if your stents are occluded with blood clots I would think you should be on an anticoagulant like Coumadin etc. Not just asprin. Ask your doctor.
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Cece
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PostPosted: Sun Jun 12, 2011 8:57 am 
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dania wrote:
What to do? Good question with no easy answer. But if your stents are occluded with blood clots I would think you should be on an anticoagulant like Coumadin etc. Not just asprin. Ask your doctor.

dania is correct, an anticoagulant works differently than an antiplatelet, which is what aspirin is.

CD, there is no way to get ongoing care covered by insurance or Canadian health care (are you in Canada)? It sounds to me like you need ongoing care for the complications you are experiencing with the stents. :(

If it's intimal hyperplasia regrowth, the treatment is to put a stent inside the stent; this is necessary or it just keeps growing closed.

If it is clotting, the treatment is either manual clot removal or being put on Coumadin and 'wait-and-see' if it dissolves on its own.

Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
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Nunzio
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PostPosted: Sun Jun 12, 2011 2:53 pm 
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You should consider seeing Dr. Sal Spagnolo from Monza, Italy.
He operate open sky and 2 days ago operated on a lady with bilateral occlusion of 90% of the IJV.
He replaced them with the saffenous vein taken from the leg and apparently the patient is doing very well already. below is the original news in Italian.
Quote:
RISULTATI ECCEZIONALI, A SEI ORE , SOSTITUZIONE DELLE DUE GIUGULARI DA PARTE DEL PROF. SALVATORE SPAGNOLO
VI ANNUNCIO, RISULTATI ECCEZIONALI SU SONIA CAPOZZOLI, AMMALATA DI SM, CON DUE GIUGULARI CHIUSE OLTREIL 90% !!, che sono state sostituite, dal prof. Salvatore Spagnolo, policlinico privato di Monza, dopo 3gg di ricovero, per analisi sangue_urine... PERFET...TE!! intervento eseguito, Sostituzione Giugulariiii, tramite vena safena gamba, con la paziente che poteva_voleva anche alzarsi, a distanza di sei ORE, DAL RISVEGLIO INTERVENTO, AVVENUTO NELLA MATTINATA DI IERI 10/6, MA NON CONCESSO!!per motivi precauzionali. POST INTERVENTO,: miglioramento NOTEVOLE DELLE FORZE!, ripreso a Sognare dopo 15 anni!, RICORDANDOSI IN TOTO, TUTTI I SOGNI, rifiuto di antidolorifici! perché si sente bene, ha ripreso a mangiare e bere a 18h da intervento, senza avvertire sensazioni di nausea o vomito, miglioramento notevole memoria e sviluppi calcoli matematici, formicolio sparito o quasi, gli occhi sporgenti, sono RIENTRATI!!, speriamo che il tutto venga filmato e con le analisi perfette possa essere oggetto futuro di studi ulteriori.Mostra altro
Di: Francesco Paolo Ruggieri

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dania
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PostPosted: Sun Jun 12, 2011 3:03 pm 
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I contacted Dr Spagnola. All 3 veins 100% occluded. He asked for my reports which were sent and he never responded. I have sent him follow up emails, still no response.
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dania
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PostPosted: Sun Jun 12, 2011 3:08 pm 
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Nunzio wrote:
You should consider seeing Dr. Sal Spagnolo from Monza, Italy.
He operate open sky and 2 days ago operated on a lady with bilateral occlusion of 90% of the IJV.
He replaced them with the saffenous vein taken from the leg and apparently the patient is doing very well already. below is the original news in Italian.
Quote:
RISULTATI ECCEZIONALI, A SEI ORE , SOSTITUZIONE DELLE DUE GIUGULARI DA PARTE DEL PROF. SALVATORE SPAGNOLO
VI ANNUNCIO, RISULTATI ECCEZIONALI SU SONIA CAPOZZOLI, AMMALATA DI SM, CON DUE GIUGULARI CHIUSE OLTREIL 90% !!, che sono state sostituite, dal prof. Salvatore Spagnolo, policlinico privato di Monza, dopo 3gg di ricovero, per analisi sangue_urine... PERFET...TE!! intervento eseguito, Sostituzione Giugulariiii, tramite vena safena gamba, con la paziente che poteva_voleva anche alzarsi, a distanza di sei ORE, DAL RISVEGLIO INTERVENTO, AVVENUTO NELLA MATTINATA DI IERI 10/6, MA NON CONCESSO!!per motivi precauzionali. POST INTERVENTO,: miglioramento NOTEVOLE DELLE FORZE!, ripreso a Sognare dopo 15 anni!, RICORDANDOSI IN TOTO, TUTTI I SOGNI, rifiuto di antidolorifici! perché si sente bene, ha ripreso a mangiare e bere a 18h da intervento, senza avvertire sensazioni di nausea o vomito, miglioramento notevole memoria e sviluppi calcoli matematici, formicolio sparito o quasi, gli occhi sporgenti, sono RIENTRATI!!, speriamo che il tutto venga filmato e con le analisi perfette possa essere oggetto futuro di studi ulteriori.Mostra altro
Di: Francesco Paolo Ruggieri

Where did you get this info?
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Cece
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PostPosted: Sun Jun 12, 2011 4:13 pm 
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Nunzio wrote:
He operate open sky and 2 days ago operated on a lady with bilateral occlusion of 90% of the IJV.

90%! This is something I was wondering, if this would be possible with the 'valve to ear' occlusions we sometimes hear about. Very interesting information. We've heard from more doctors than just Dr. Sclafani that they are not optimistic about this procedure...perhaps I am just optimistic about everything, plus have not seen the risks yet.

Here in the US there was a patient in Florida saying her/his IR was willing to do this surgery, plus there is Dr. Mehta who is a vascular surgeon who has talked about it his CCSVI Alliance video but has not to my knowledge done one.
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CD
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PostPosted: Sun Jun 12, 2011 11:01 pm 
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The Vascular surgeon's report used the words, "There is presence of Neointmal Hyperplasia in the Left Internal Jugular Vein, with Venous flow within the stent indicating partial patency.

"The stent distally seemed to have some stenosis of external compression. Further evaluation by Venogram is recommended."

What is Neointmal Hyperplasia?

If I don't take the Aspirin I get Dizzy, go figure.

I did the shots and Warfarin for three months. I was told I could stop at three months. I went on Aspirin myself because that is what Dr Siskin uses now, only he uses low dose.

I am in the US, New York and Brooklyn are about one hour or so away.
My medical ins was out of network, and non par to Albany's medical ins. So I had to pay cash. I am to go back in Sept. for US/and or another Venogram I guess.

I had one stent, and next procedure two more stents, because of clots. I don't think this is clotting this time, is it? I tried to look it up.

I put it to Dr Sclafani's thread, but he past it by, so I took it down and deleted it. He is so, so busy with his cases. I understand.

Anyone know? Thanks for your help so far. Ideas wanted!
CD

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CCSVI Procedure December 2010
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Cece
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PostPosted: Mon Jun 13, 2011 6:36 am 
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Are any of the other possible IRs in the area in-network? Dr. Sclafani, the doctor at Columbia, the AAC doctor in New Jersey or the VAC doctor in NJ?

Neointimal hyperplasia is the same as intimal hyperplasia. That's when the stent irritates the vein and stimulates regrowth inward. A stent can be placed to try and stop it.

External compression is a harder one to solve. Is it bone or muscle or something else compressing that one?

So when you were treated in Albany, you paid for the first procedure and then with the clotting, was it full price again for the second procedure the next day? Oy.
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CD
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PostPosted: Mon Jun 13, 2011 8:55 pm 
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Thanks Cece.

I would think the stent irritates the inside of the vein with inflammation, therefore Aspirin helps with the swelling of the inflamed inside of vein.

My fear is that another stent inside the last one would do the same thing, cause swelling and inflammation.

First procedure I was only given Plavix. It didn't work in time. the second procedure to put two more stents inside the last one, was for clot busting with tPA and the stents, then 10 days of shots, then Warfarin.

Another stent would be more of the same. I have flow now so maybe the aspirin did that. Will it remain this way or get worse, that is the question?

I am so on the fence about this. :(

I feel great, so why get treated a third time and chance full occlusion?.. this is my mind talking to me. :?

Ozark, what are your plans? Are you going to wait, or try to get the blockages cleared?
CD

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Where there is a will, there is a way. "HOPE"

CCSVI Procedure December 2010
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Nunzio
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PostPosted: Tue Jun 14, 2011 4:53 am 
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dania wrote:
I contacted Dr Spagnola. All 3 veins 100% occluded. He asked for my reports which were sent and he never responded. I have sent him follow up emails, still no response.

Hi Dania, from the USA you can call him at 011390392810575.
Possibly have somebody that speaks Italian with you.
I know he is very busy and he is training other vascular surgeon in the procedure, but I am sure he will answer you.
Good luck

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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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