Stenosis

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

Re: Stenosis

Postby Cece » Wed Apr 25, 2012 8:20 am

dania wrote:I just had another CT 64 slice scan yesterday and I am sending the images to my cardiothorassic surgeon by email. I completely trust his judgment and that he will be able to accurately interpret the images.

That is great news, dania. Can't believe your doctor can be in charge of follow-up despite the distance. I hope that CT scan shows two healthy free-flowing veins.

Ragesht, keep us posted on what you find out when you get imaging or the procedure done! I would suggest going with EHC over a local cardiovascular doc if the local doc has not diagnosed or treated CCSVI before. There is a risk of not having everything diagnosed, being undertreated and a risk of vein injury with doctors inexperienced with treating CCSVI no matter how experienced they are at treating other vascular issues.
drsclafani wrote:
Cece wrote:Dr. Sclafani is right about IVUS and venography. But remember that IVUS+venography is invasive, so this is done as part of the procedure itself. If you are looking for noninvasive imaging to help decide if you want to go ahead with the procedure, I would still recommend getting a doppler ultrasound done.

cece, the question asked what was the best way to see stenoses

I should've gone with just the part about Dr. Sclafani being right? :)

Since the doppler does not always accurately diagnose CCSVI, if a person comes back negative for CCSVI, it is still worth pursuing the procedure itself. And the best procedure is venography+ivus. Otherwise there will be stenoses that go undetected and therefore untreated. But we've got ragesht pointed toward EHC, where IVUS is used but, if my memory serves, high pressure balloons are not used. So that is a different conversation, on the safety and importance of high pressure balloons.
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Re: Stenosis

Postby dania » Wed Apr 25, 2012 10:02 am

Cece, the aftercare I am receiving from the whole team at Excel is incredible. All of them, From Dr H to Tina, a nurse with MS who answers all your questions, are unbelievable. They care. And do not drop you once they have treated you. Having been treated by "too many", this was by far, the best care I have ever gotten.
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Finding Stenoses

Postby MarkW » Thu Apr 26, 2012 1:25 am

Cece wrote:Dr. Reid at EHC is up in Glasglow.
MarkW, if you see this, is there anyone closer?

Hello All,
Aalst in Belguim is closer to London than Glasgow or Edinburgh. You can drive to Belgium (car goes on boat or train to cross the Channel for NA readers). The down side is language, the Scots speak nearly the same language as a Londoner, most Belgians don't.
Mr Reid is a Consultant Vascular Surgeon and consultant surgeons use the title Mr in the UK. MrR has used IVUS for 15 years (mainly in arteries) so I would say he knows how to use them and read the pictures.
Please follow Prof Sclafani's advice - to find all stenoses get a catheter venogram and IVUS in combination. Other methods may miss some stenoses, so why take the risk??
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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Re: Stenosis

Postby ragesht » Sun Apr 29, 2012 4:51 am

Ok you good guys, and I know in the end I will decide my fate, your frank opinion on my situation.
2002 skiing accident, snow boarder out of control crashed into my hind right buttock.
I dusted snow off and started skiing and did so for the rest of the week.after a few months I developed a very minor limp in the affected right leg, the limp got steadily worse, complaint to doctors led to diagnosis of torn medial meniscus, had that sorted. 2006 , suffered prolapse disc perhaps due to limping, doctors sent me to a neurologist as I complained of feet tingling after prolapse, diagnosis is RRMS. Today walking is an issue, and my neurologist has classed me as PPMS, that my friends is the only major complaint, very little else. 
I am thinking ccsvi, as along with all the above issues, few years ago my right foot turned cold and remains so much colder than the other, please help me with me your thoughts, I need to get better it's getting to me, appreciation in advance as I know I will get your opinions.
Thank you,

RT
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Re: Stenosis

Postby ragesht » Wed May 02, 2012 2:43 am

Hi, this is very unlike you guys not to have a opinion, this is true, i am living this, any thoughts please.

thank you,


RT
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Stenosis in trunk veins ??

Postby MarkW » Wed May 02, 2012 3:31 am

Hello Rageshit,
Only comment is to repeat that veins in your trunk need to be checked. A small percentage of MS cases are triggered by injury, could be true for you, maybe not. My thought: get a complete diagnosis of CCSVI syndrome, lumber veins?
Kind regards,
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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Re: Stenosis

Postby drsclafani » Wed May 02, 2012 7:57 am

ragesht wrote:Ok you good guys, and I know in the end I will decide my fate, your frank opinion on my situation.
2002 skiing accident, snow boarder out of control crashed into my hind right buttock.
I dusted snow off and started skiing and did so for the rest of the week.after a few months I developed a very minor limp in the affected right leg, the limp got steadily worse, complaint to doctors led to diagnosis of torn medial meniscus, had that sorted. 2006 , suffered prolapse disc perhaps due to limping, doctors sent me to a neurologist as I complained of feet tingling after prolapse, diagnosis is RRMS. Today walking is an issue, and my neurologist has classed me as PPMS, that my friends is the only major complaint, very little else. 
I am thinking ccsvi, as along with all the above issues, few years ago my right foot turned cold and remains so much colder than the other, please help me with me your thoughts, I need to get better it's getting to me, appreciation in advance as I know I will get your opinions.
Thank you,

RT

RT
I generallly lurk and answer questions on my thread but thought I would weigh in

first, let me say how sorry I am that this has happened to you. I see many patients who simply cannot understand how or why they developed this awful disease. But you have and it doesn't really matter how or why.

What matters is to get grounded and focused on the long haul of managing this disease. Diet, exercise, emotional support and a positive attitude are important. There are no efffective medications for ppms yet. Ccsvi treatment. is reported to show some clinical improvement in symptoms such as weakness,fatigue,numbness, memory and other cognitive challenges, balance and other dysfunctions but we do not yet know how significant a role it may
play in prolonging time to disability.
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com
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Re: Stenosis

Postby Cece » Wed May 02, 2012 9:17 am

I am thinking ccsvi, as along with all the above issues, few years ago my right foot turned cold and remains so much colder than the other, please help me with me your thoughts, I need to get better it's getting to me, appreciation in advance as I know I will get your opinions.

I hope you are able to get better, and avoid getting worse.
Cold feet may be due to dysfunction of the autonomic system. When people get warmer feet after the procedure or the ability to sweat comes back, that's probably due to an improvment in the autonomic nervous system.

The trauma might have had something to do with when your MS showed itself, but it seems likely that CCSVI is present all along and MS is encroaching subclinically and at some point it tips over to being clinical. A skiing accident or a transatlantic flight or childbirth or who-knows might be part of what tips it over, but it was going to happen anyway. Chronic outflow obstructions of the cerebrospinal drainage is not good for us.
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Re: Stenosis

Postby David1949 » Wed May 02, 2012 9:34 am

ragesht

Here's my suggestion: Just listen to Dr. Sclafani.
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Re: Stenosis

Postby ragesht » Sat May 26, 2012 5:52 am

hi guys, here I am with my feed back, doppler scan conducted by EHC Glasgow, as recommended by your good selves. The result was Negative, there is no stenosis visible as per Dr. Zamboni's procedure, Vik Fernandao conducted the scan in Glasgow, very nice learned chap, according to him I am one of the 7% who does not have stenosis, whom he has scanned. I was impressed by the professionalism of the team.
I have hope my feed back helps, for me its put my mind to rest as of CCSVI. I am sure some of you may like to give me some further help.

I really appreciate this, if you are here looking for answers, this is the place!!

thank you,

Ragesh
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