Dr. Makris' 1st CCSVI Procedure-28 Dec 2010

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

Postby Donnchadh » Wed Feb 16, 2011 10:16 pm

npost999 wrote:I spoke with Jackie at the clinic yesterday and she told me they are currently waiting on the sonographer to get some more training before they start up the ultrasounds again. She also said that only one patient has been treated & I'm assuming that is you Donnchadh??

Did they use IVUS with you? I thought she said they were not doing it, but I was under the impression that Dr. Sclafani used it and that surprised me that all of the clinics he has trained doctors at are not using it.


Yes, I was the first. No, the IVUS was not available. You have to realize that I had already two previous procedures done, and I had complete venogram images generated from them. Also, Dr. Sichlau had a Zamboni protocol ultrasound done on me, so it was never a question whether I had venous disorders.

I have a follow-up ultrasound exam scheduled on 21 March.

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Postby Cece » Thu Feb 17, 2011 7:58 am

Dr. Sclafani used it to great effect but if a doctor does not know how to interpret what he sees on IVUS, then it would not be of much use.

Does it sound as if Dr. Makris is planning to use IVUS but just not yet or that he is not planning to at all? It can add expense and time to the procedure, there is incentive there for the docs to not use it, but it adds valuable information when used correctly.

Donnchadh, I hope that follow-up ultrasound shows that everything is holding!!
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Postby npost999 » Thu Feb 17, 2011 8:43 am

Cece wrote:Does it sound as if Dr. Makris is planning to use IVUS but just not yet or that he is not planning to at all? It can add expense and time to the procedure, there is incentive there for the docs to not use it, but it adds valuable information when used correctly.



That is a question I'll be asking when I get the call back for scheduling etc. I had thought about going to Dr. Sclafani and relayed that to Holly, but it looks like my insurance may cover the procedure in Chicago. I think IVUS should be used by every doctor when doing this...
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Postby Donnchadh » Fri Feb 18, 2011 11:45 am

18 February 2011.

Just got through talking to Jackie and here's the latest information. Their sonographer has completed CCSVI specific training at Brooklyn. This training was done by the sonographer used by Dr. Sclafani.

Chicago Access Care has upgraded their ultrasound machine (specific probes used for CCSVI). The sonographer is in testing mode now, and will actually start testing patients on 21 March 2011 (I'm the first!). She has a lot of prior experience (e.g., varicose veins) as a sonographer, but this application for CCSVI is new.

Also, when I last talked to Jackie a couple of weeks ago, there were 6 people interested in being treated there. That number is now up to 25.

Dr. Makris is tentatively thinking of doing 2 or 3 procedures a week. No IVUS at this time.

If you are considering him, you might want to get on the waiting list before it lengthens.

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Postby vivavie » Fri Feb 18, 2011 1:00 pm

The sonographer was in training while I was in Brooklyn this week, she is very nice. She practice on me, she now have experience to view blood flow thru the thickness of 3 layers of stents!!! She's ready for anything now :wink:
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Postby npost999 » Fri Feb 18, 2011 1:11 pm

Donnchadh wrote: No IVUS at this time.



did she say why not at this time? What is the reason some use IVUS & others don't, I'm not that familiar with the principal of intravenous ultrasound...but if not mistaken it does use radiation.
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Postby Donnchadh » Fri Feb 18, 2011 2:27 pm

npost999 wrote:
Donnchadh wrote: No IVUS at this time.



did she say why not at this time? What is the reason some use IVUS & others don't, I'm not that familiar with the principal of intravenous ultrasound...but if not mistaken it does use radiation.



Here's a link explaining the use of ultrasound for medical imaging:

http://www.radiologyinfo.org/en/info.cfm?pg=genus

Note that ionizing radiation (like in a X-ray) is NOT used for an ultrasound exam.

Image

I suspect the reason why IVUS is not used is because of cost considerations.

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Postby npost999 » Fri Feb 18, 2011 2:44 pm

I understand regular ultrasound & doppler ultrasound & use it in my current career...my question was specifically about IVUS & I thought I had saw or read at some point that there was radiation used in conjunction with IVUS
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Postby Cece » Fri Feb 18, 2011 2:54 pm

npost999 wrote:I understand regular ultrasound & doppler ultrasound & use it in my current career...my question was specifically about IVUS & I thought I had saw or read at some point that there was radiation used in conjunction with IVUS

IVUS is used during the procedure, so there is the radiation of the procedure (for the xrays) being used through the procedure. Since IVUS prolongs the procedure a bit, both for the time it takes to get the ivus in place and to take and interpret the images and, since ivus makes it more likely to find something, to then treat what is found, the use of IVUS will result in a potentially longer procedure with more radiation too. That said, my own procedure used IVUS and was an hour-and-fifteen-minute miracle, so it is possible to still have a shorter procedure with the use of IVUS.

It is the choice of the doctor, Dr. Makris in this instance, to use or not use IVUS; cost is a factor but so is if he has the expertise to understand its images and make use of it and also if he considers it something that will add value to his diagnostics during the procedure or not. I expect Dr. Sclafani to continue presenting his findings on the use of IVUS - he has a presentation on this at ISNVD next month - and that he'll win other doctors over to its use, because it is an amazing tool.

As patients, choosing a doctor is a big choice and the use of IVUS is only one factor, although an important one to me.
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Postby Donnchadh » Fri Feb 18, 2011 3:07 pm

Cece,

Perhaps you remember the exact quote, but I think Dr. Sclafani stated that the IVUS probe was expensive ($750????) and could only be used once.

Of course, unless the IR understands what they are imaging with the IVUS then its use is meaningless. Someone like Dr. Sclafani probably finds it of great value in determining what's going on inside the target veins.

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Postby Cece » Fri Feb 18, 2011 3:15 pm

Donnchadh wrote:Perhaps you remember the exact quote, but I think Dr. Sclafani stated that the IVUS probe was expensive ($750????) and could only be used once.

Yes, $650-750 per IVUS probe, but also $100,000 for the unit itself. It's more likely to be found in a hospital setting, less likely in a clinic.

I am very excited for us to have Midwest options for this procedure. Dr. Makris does not take my insurance, so once I learned that, he was not an option for me. What a change from a year ago, when we could not get treated anywhere in the US.
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Dr. Makris

Postby anamishguy » Sat Feb 19, 2011 4:38 am

Donnchadh wrote:18 February 2011.

Just got through talking to Jackie and here's the latest information. Their sonographer has completed CCSVI specific training at Brooklyn. This training was done by the sonographer used by Dr. Sclafani.

Chicago Access Care has upgraded their ultrasound machine (specific probes used for CCSVI). The sonographer is in testing mode now, and will actually start testing patients on 21 March 2011 (I'm the first!). She has a lot of prior experience (e.g., varicose veins) as a sonographer, but this application for CCSVI is new.

Also, when I last talked to Jackie a couple of weeks ago, there were 6 people interested in being treated there. That number is now up to 25.

Dr. Makris is tentatively thinking of doing 2 or 3 procedures a week. No IVUS at this time.

If you are considering him, you might want to get on the waiting list before it lengthens.

Donnchadh


Donnchadh,
I will be there on March 21st also. Jackie emailed and asked to move my dates up one day because they are only doing U/S on Mondays at this time. I am scheduled for 11:30. Do you know of anyone else scheduled before my procedure on the 22nd or will I be his second patient?
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Re: Dr. Makris

Postby Donnchadh » Sat Feb 19, 2011 7:32 am

anamishguy wrote:Donnchadh,
I will be there on March 21st also. Jackie emailed and asked to move my dates up one day because they are only doing U/S on Mondays at this time. I am scheduled for 11:30. Do you know of anyone else scheduled before my procedure on the 22nd or will I be his second patient?


I am scheduled for 11:00am, just before you. Be sure to say hi.

My impression, after talking to Jackie, was that no more procedures had been done after mine in December. They wanted to get the ultrasound up and running first, so I suspect that you may well be the second CCSVI patient. They are considering doing 2 or 3 CCSVI patients a week after they are set up.

Good Luck,

Donnchadh

ETA: Did you find reasonable accommodations near the clinic? Are you driving there?
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Re: Dr. Makris

Postby anamishguy » Sat Feb 19, 2011 9:55 am

Donnchadh wrote:
anamishguy wrote:Donnchadh,
I will be there on March 21st also. Jackie emailed and asked to move my dates up one day because they are only doing U/S on Mondays at this time. I am scheduled for 11:30. Do you know of anyone else scheduled before my procedure on the 22nd or will I be his second patient?


I am scheduled for 11:00am, just before you. Be sure to say hi.

My impression, after talking to Jackie, was that no more procedures had been done after mine in December. They wanted to get the ultrasound up and running first, so I suspect that you may well be the second CCSVI patient. They are considering doing 2 or 3 CCSVI patients a week after they are set up.

Good Luck,

Donnchadh

ETA: Did you find reasonable accommodations near the clinic? Are you driving there?


Yes, we did find reasonable accommodations and will be driving. We are about 4 hours away. I will be sure to say hello.
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hi!

Postby MariaChristo » Wed Feb 23, 2011 10:14 pm

The lady that takes care of the insurance things called me today, she put it through and said everything is OK to go!
I'm very excited to co and have it done! and to know that you were there and took all of those lovely pictures is wonderful! Thanks!
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