Please verify your CCSVI testing facility

[Lanie]

It is very important for patients to verify qualifications and exam protocol training prior to getting a CCSVI Ultrasound Doppler exam. My name is Lanie. I am a certified CCSVI vascular sonographer at CCSVI-Atlanta. I was recently asked to review images from a patient in the mid-west that supposedly had a “CCSVI” Doppler Ultrasound. The patient was told they were negative for CCSVI even though the images taken did not cover any of the 5 Criteria under the Zamboni protocol. The patient report did not list any relevant information that would be useful in a diagnosis of CCSVI. In actuality, this patient paid for an exam, left with the wrong diagnosis and is now making an appointment to have a full Zamboni protocol exam at our facility. Please ask about the exam and where the sonographer was trained for this specialty. Some facilities are applying a standard carotid artery approach to view the jugular without the full understanding of what needs to be evaluated to diagnose CCSVI. I want to help other patients avoid this in the future.

[Trish317]

Thank you for posting this, Lanie. Would the same thing apply to a follow-up ultrasound to determine if restenosis has occurred?

[Donnchadh]

It is very important for patients to verify qualifications and exam protocol training prior to getting a CCSVI Ultrasound Doppler exam. My name is Lanie. I am a certified CCSVI vascular sonographer at CCSVI-Atlanta. I was recently asked to review images from a patient in the mid-west that supposedly had a “CCSVI” Doppler Ultrasound. The patient was told they were negative for CCSVI even though the images taken did not cover any of the 5 Criteria under the Zamboni protocol. The patient report did not list any relevant information that would be useful in a diagnosis of CCSVI. In actuality, this patient paid for an exam, left with the wrong diagnosis and is now making an appointment to have a full Zamboni protocol exam at our facility. Please ask about the exam and where the sonographer was trained for this specialty. Some facilities are applying a standard carotid artery approach to view the jugular without the full understanding of what needs to be evaluated to diagnose CCSVI. I want to help other patients avoid this in the future.

Could you list specifically what a CCSVI ultrasound exam should contain?

Donnchadh

[Cece]

Thank you, Lanie, for joining and sharing this advice. I agree that the best ultrasounds are full Zamboni protocol by someone who has received training in the Zamboni protocol and who has experience with it.

Because of the high assocation between CCSVI and MS, if a patient has received a CCSVI diagnosis even by someone less experienced, it is probably an accurate one. A patient such as Lanie describes, who was told they did not have CCSVI, needs to be evaluated thoroughly before such a statement could be made, IMO.

[CaptBoo]

Just want to vouch for Lanie. She tested me pre-procedure, found three of five. Then tested me a month post procedure and found no reflux, consistent with how I feel. She's BNAC-trained in Zamboni protocol. She is professional and thorough. I hope everyone here will welcome Lanie to our little family. Lanie, please check in often and lend us your expertise.

Responding to your post in another thread, I am now five months post-proedure. Balance and fatigue issues are a thing of the past. The left leg still has some issues, but I feel great.

Boo

[thornyrose76]

Where in the Mid-West did this individual get an improper dopplar ulitrasound, out of curiosity?

[WeWillBeatMS]

Thank you for posting this information Lanie. I also had the testing done at a place in South Florida that was really new to CCSVI about a year ago. The technician did not detect CCSVI and I dropped off TIMS and was quite depressed for a while. It's only been in the past few weeks that I have been corresponding with people in TIMS and facebook's CCSVI page that I have been enlightened that there are lots of negative reports given for CCSVI that later show to actually have it.

WeWillBeatMS

[Lanie]

Thank you for posting this, Lanie. Would the same thing apply to a follow-up ultrasound to determine if restenosis has occurred?

Trish317,
When our patients come back post-treatment for follow up they are compared to their baseline study. If a patient did not have a quality Zamboni protocol exam prior to getting treatment & feel they are restenosing a full protocol will evaluate them at THAT time for CCSVI not necessarily for "restenosis". If there is a stenosis it will be seen & documented following protocol.

[Trish317]

Thank you for posting this, Lanie. Would the same thing apply to a follow-up ultrasound to determine if restenosis has occurred?

Trish317,
When our patients come back post-treatment for follow up they are compared to their baseline study. If a patient did not have a quality Zamboni protocol exam prior to getting treatment & feel they are restenosing a full protocol will evaluate them at THAT time for CCSVI not necessarily for "restenosis". If there is a stenosis it will be seen & documented following protocol.

So, in other words, a standard ultrasound wouldn't be good enough to detect restenosis? I'm asking because my darling man had the CCSVI procedure done by Dr. Mandato, in Albany, in September, and had a follow-up ultrasound, in December, somewhere near his home in Iowa. The technician was not CCSVI trained and told him that the veins were fine. Before the CCSVI procedure, his neurologist agreed to send him for an MRV. He was told then that his veins were fine. Well, Dr. Mandato found over 50% stenosis in both jugulars, and azygous. All three veins were angioplastied.

My concern is that he actually has restenosis but he's been told everything is fine.

Thank you for becoming a member of TiMS and adding your expertise to help us all learn more.

[Lanie]

Thank you for posting this information Lanie. I also had the testing done at a place in South Florida that was really new to CCSVI about a year ago. The technician did not detect CCSVI and I dropped off TIMS and was quite depressed for a while. It's only been in the past few weeks that I have been corresponding with people in TIMS and facebook's CCSVI page that I have been enlightened that there are lots of negative reports given for CCSVI that later show to actually have it.

WeWillBeatMS

WeWillBeatMS,
Your comment is exactly why I posted today. Some of my patients first went to a facility where they had a 15-20 minute scan and were told they were negative for CCSVI. Other patients were told they had a CCSVI doppler ultrasound and come to find out the area of interest for CCSVI was not even evaluated. This should not be allowed to happen. Patients don't have time & money to waste getting a possible incorrect diagnosis. There is training and certification for this specialty and it should be known that you can NOT apply a carotid artery doppler ultrasound protocol to the venous system evaluating the internal jugular, vertebral veins or deep cerebral veins. The full Zamboni protocol can take approximately 2 hours. Please make sure where ever you choose to go it is being done correctly.

[Lanie]

It is very important for patients to verify qualifications and exam protocol training prior to getting a CCSVI Ultrasound Doppler exam. My name is Lanie. I am a certified CCSVI vascular sonographer at CCSVI-Atlanta. I was recently asked to review images from a patient in the mid-west that supposedly had a “CCSVI” Doppler Ultrasound. The patient was told they were negative for CCSVI even though the images taken did not cover any of the 5 Criteria under the Zamboni protocol. The patient report did not list any relevant information that would be useful in a diagnosis of CCSVI. In actuality, this patient paid for an exam, left with the wrong diagnosis and is now making an appointment to have a full Zamboni protocol exam at our facility. Please ask about the exam and where the sonographer was trained for this specialty. Some facilities are applying a standard carotid artery approach to view the jugular without the full understanding of what needs to be evaluated to diagnose CCSVI. I want to help other patients avoid this in the future.

Could you list specifically what a CCSVI ultrasound exam should contain?

Donnchadh

CCSVI is a doppler ultrasound exam following Zamboni protocol that has 5 Criteria. In order to be positive a patient must meet 2/5.

The protocol is complex & lengthy. Below is a basic list of what is evaluated:
internal jugular or vertebral vein reflux
deep cerebral vein reflux
b-mode anomalies
blockages
negative delta for cross sectional area

All the above contain multiple elements. For example, B-mode anomalies includes stenosis. This is only one element within one criteria.

Hope this helps.

[Lanie]

Thank you for posting this, Lanie. Would the same thing apply to a follow-up ultrasound to determine if restenosis has occurred?

Trish317,
When our patients come back post-treatment for follow up they are compared to their baseline study. If a patient did not have a quality Zamboni protocol exam prior to getting treatment & feel they are restenosing a full protocol will evaluate them at THAT time for CCSVI not necessarily for "restenosis". If there is a stenosis it will be seen & documented following protocol.

So, in other words, a standard ultrasound wouldn't be good enough to detect restenosis? I'm asking because my darling man had the CCSVI procedure done by Dr. Mandato, in Albany, in September, and had a follow-up ultrasound, in December, somewhere near his home in Iowa. The technician was not CCSVI trained and told him that the veins were fine. Before the CCSVI procedure, his neurologist agreed to send him for an MRV. He was told then that his veins were fine. Well, Dr. Mandato found over 50% stenosis in both jugulars, and azygous. All three veins were angioplastied.

My concern is that he actually has restenosis but he's been told everything is fine.

Thank you for becoming a member of TiMS and adding your expertise to help us all learn more.

I can't speak for another sonographer's training or what protocol was followed. The best advice I can offer is to find a facility that offers the exam following the Zamboni protocol by a sonographer certified in CCSVI.

[Trish317]

Trish317,
When our patients come back post-treatment for follow up they are compared to their baseline study. If a patient did not have a quality Zamboni protocol exam prior to getting treatment & feel they are restenosing a full protocol will evaluate them at THAT time for CCSVI not necessarily for "restenosis". If there is a stenosis it will be seen & documented following protocol.

So, in other words, a standard ultrasound wouldn't be good enough to detect restenosis? I'm asking because my darling man had the CCSVI procedure done by Dr. Mandato, in Albany, in September, and had a follow-up ultrasound, in December, somewhere near his home in Iowa. The technician was not CCSVI trained and told him that the veins were fine. Before the CCSVI procedure, his neurologist agreed to send him for an MRV. He was told then that his veins were fine. Well, Dr. Mandato found over 50% stenosis in both jugulars, and azygous. All three veins were angioplastied.

My concern is that he actually has restenosis but he's been told everything is fine.

Thank you for becoming a member of TiMS and adding your expertise to help us all learn more.

I can't speak for another sonographer's training or what protocol was followed. The best advice I can offer is to find a facility that offers the exam following the Zamboni protocol by a sonographer certified in CCSVI.

Thank you! That helps alot.

[fiddler]

Who is "certifying" sonographers with respect to CCSVI?
...Ted

[Cece]

Trish, Dr. Makris in Chicago now has a sonographer trained in the Zamboni method, he has scheduled people in March....I know, the hard part is getting your man to go for it. Proper follow-up is part of the care of getting this done in the first place!!

Over on Facebook, it was mentioned that BNAC is certifying, I am surprised by that. Also I think MrSuccess is watching me carefully for the use of the phrase "Over on Facebook...." ;)