This Is MS Multiple Sclerosis Community: Knowledge & Support

Dear dr. Sclafani,

Just a brief questions about CCSVI procedure examination using Doppler USG based on Karen Marr's presentation. I'd like to know :

1. In her presentation, patient to be examined should use no steroids within 30 days before the exam. Now, i'm still using Rebif. Does Rebif have steroid in it? (i heard my MS friend told me that it has)

2. If i have venous valves obstruction or i have-a very thin n move so quickly-valves or no valves at all, maybe it's better for me to check for venous valve's confidence using valsava maneuver. Is it true?

I'm going to discuss it with my sonographer n dr. Priyo Sidipratomo, if he has time for me, in maybe this week or next week.

So, i'd be grateful if u could give me a quick reply.

Thank you very much. I'll be waiting for your answers.

_________________
Warm regards,
Linda

|For the joy of the Lord is your strength | A cheerful heart is good medicine, but a crushed spirit dries up the bones| God always leads us to where we need to be, not where we want to be|

Linda
the reason that Karen Marr was not using steriods was because of a research project. Thus no steroid receiving patients were part of the study. I do not think that steroids actually have anything to do with getting an ultrasound and would not worry about it.
Valsalva is not a good manuever when doing ccsvi ultrasound. it is looking for the wrong thing. gentle breathing is best.

say hello to my good friend. Remind him of our visit to the NYC world trade center a year or so before it was taken down by the terrorists. Tell him that the new trade center is going up now and will be ready for us at dinner in about 2 years.

good luck linda

_________________
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

we shall find out perhaps at ISNVD meeting in a couple of weeks

_________________
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

This is one I hope you can give some input to as well Dr S!

The big questions at last;

Marilyn FrouFrou >Michael Arata
Hi Dr. Arata,
Just wanting your expert opinion on extracranial vertebral veins in Ccsvi. Do you find they are tortuous in ppl with CCSVI as opposed to non CCSVIers?
I have scanned well over 2000 carotid + vertebral arteries (non msers that I know of) noticing most had fairly straight arteries and veins. In the msers I have scanned, I have noted tortuosity of the same extracranial veins and arteries - mostly veins.
Have you noticed this trend?? In some I've seen, they almost looked like varicositis of the GSV.
Reply;
Michael Arata Hello. I certainly have noted the collaterals and they are very tortuous.
Question;
Nigel Wadham Hi Dr and Marilyn, is there any indications what might cause this phenomenon?
At a guess or assumption it would be caused by a disease or infection process such as CPn infection or Lyme infection?
https://www.facebook.com/Dr.Arata/posts/431604103584002

Snowed in yet?
Take care...

This is incorrect. There is no steroid in Rebif. It is a subcutaneous injection of interferon beta-1a.

Here is the prescribing information.
http://www.emdserono.com/cmg.emdserono_ ... _19765.pdf


NHE

Dear NHE,

Thank u for your information. My MS friend knowed it from her neurologist in Germany.
Yeah i read in its box, it says it doens't contain steroid. Just wondering maybe her neurologist knows something the pharmaceutical company hide.

_________________
Warm regards,
Linda

|For the joy of the Lord is your strength | A cheerful heart is good medicine, but a crushed spirit dries up the bones| God always leads us to where we need to be, not where we want to be|

Dr Sclafani,

In your opinion is one jugular enough?

I have had multlple PTA procedures and stent placements to open up my left jugular, the longest it has remained open is three months. I have a large collateral that branches off right above the blockage. My IR is hesitant (and I agree) to stent over this collateral. I have good flow through my right internal jugular.

I believe that I am out of options, I haven't heard of many (if any) successful long term vein grafts, for the jugular.

Jim

Dear jim

sorry you have has such difficulties

it is difficult to give a really expert answer based simply on the history you provide and in the absence of images that show your venous anatomy and pathology.

As a general rule, if you have a large collateral, it is a good idea to preserve it although direct line flow is probably better and providing drainage.

But why do you keep stenosing (or, is it occluding?)? Is there stenosis at the skull base between the dural sinus and the internal jugular vein? Was the stent placed early in your treatment and possibly unnecessary to begin with? Have you had strong intimal reaction to the stent leading to stenosis caused by intimal hyperplasia? Have you been on continuous anti-thrombin A and antiplatelet medications?

I like the collaterals. They are better than nothing. is there any evidence of stenosis or valve disease of the collateral? Does it run through your thyroid gland? If so, how is your thyroid function?

You say that your right internal jugular is fine. That is good. was it ever treated? is the larger of the two vessels? Have you had IVUS of that vein to assure yourself that it is optimally opened? What about the other veins that contribute to cerebrospinal drainage such as the azygos and hemiazygos veins, the left renal vein and the ascending lumbar vein? Are they open without stenosis? That is very important. Which of your transverse sinuses is largest and is there asymmetry of their drainage?

Finally, and most importantly, how are you feeling? Have you received benefits from the treatments at any time? Which benefits persist and which have deteriorated? What type of MS do you have. If you are progressive, has your progression slowed down or sped up? If you are relapsing remitting, have you seen more or less relapses since your treatments?

There is many other considerations when addressing a complex problem like yours. I have illustrated some of the issues that come to mind in order for a treating physician to make a treatment plan in your current situation. The answers to these questions probably will lead to more questions but in the end a plan can be formulated.

Sorry for the long winded and indefinite opinion but as you can see it is not a simple answer.

_________________
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

Dr. Sclafani,

Lot's of good questions, I don't have many good answers. I believe that the large collateral may be the reason I keep stenosing. The veinous blood is taking the path of least resistance, and there is not enough blood traffic to keep it open. I was a fairly early adopter and travelled to Albany, NY in Sept of '10, that was when the first stent was placed.

I have primary progressive MS, my symptom relief from the PTA includes:
- Lack of heat intolerance (to a point)
- Ability to Focus
- Alertness
- I can touch my nose again (with right hand)
- Energy level

I have progressed minimally since Sept. '10. I have had PTA in both jugulars, Azygous and renal veins. Was only put on Plavix after first procedure, since then I have experimented with Coumadin, Arixtra plus others to no avail.

We have not looked at the ascending lumbar vein. Thyroid function is fine.

The fatigue, alertness and clear headed thinking are the first symptoms to rear their ugly head.

If I can figure out how to post my images, I will.

Thanks

This is discussed in the Forums FAQ thead.

site-support-f2/topic5284.html#p40760

Dear dr Sclafani,

Thank u. I've met dr Priyo Sidipratomo today. And he's so excited about CCSVI after hearing your name. He'll contact u to know more about the procedure. I wish u could help him. Cause he promise to help me.

Thank u for your help.

_________________
Warm regards,
Linda

|For the joy of the Lord is your strength | A cheerful heart is good medicine, but a crushed spirit dries up the bones| God always leads us to where we need to be, not where we want to be|

Linda. It is a very small world when an incidental mention of where you live led to my mentioning prijo's name that led to a conversation between him and you that led to me instructing about treatment techniques of ccsvi.

I will share some knowledge and hopefully spread good treatment techiques to one of the largest countries in the world. Your courage to write may help many.

_________________
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

I have a question and I hope you will be able to help me.
In 2010 and 2011 I've had jugular angioplasty of my both jugular veins and the azygos vein, and now, again, I have restenosis on all of them. The angiography finding from 2011 is that the right jugular vein is 60% clogged, the left jugular vein is 80% clogged, and the azygos vein is 70% clogged.
The indication was stenosis of both jugular veins, discovered with Doppler (TCD). I've had CCSVI treatment. Please, don't throw away this message after you read this. I've been working as a vascular nurse for 20 years now, and I am familiar with the circulation of arteries and veins. Unfortunately, I have this disease, and I'm sure, from my experience, that everything is connected to the bad vein circulation and anatomical malformations.

Now I am suggested to implant a stent, but as much as I am informed, there aren't any stents for jugular veins right now.

In summary, my question is are there any researches at your clinic regarding jugular veins, or stents for jugular veins? Do you perform stent implantations for jugular veins at your clinic?

Thanks for sharing your knowledge. I would also be interested to know if / how he takes your suggestions on IVUS.