List of Doctors

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

Offer by Dayton IR

Postby MarkW » Mon Mar 12, 2012 3:29 am

Thanks for your information. However I am a pedant who seeks to give pwMS the best info when choosing an Interventionalist for the procedure.
For diagnosis to be 'gold standard' (see my thread) it must involve invasive Catheter Venography and Intravascular Ultrasound (IVUS) to detect valve issues plus webs and septums. Your website does not say which diagnostic tools you use, please update us. (I realise that Prof Haacke uses MRV to detect issues but that is extremely expensive equipment usually only available in a research setting, not clinics. MRV has not been shown to detect all webs and septums but IVUS will detect webs and septums in veins).
Your website says the procedure takes about an hour but does not say which veins are inspected. My personal experience and information from other patients leads me to conclude that one hour is too short for a full diagnosis, please clarify.
I realise that many Interventionalists only inspect the jugular veins (left and right) and the azygous veins (azygous and hemi-azygous). My estimate is that this will detect 80% of issues but many other veins exhibit issues in some patients. This under inspection leads to under-treatment in some patients. It is not a problem for people who can afford many procedures but for most pwMS the CCSVI procedure is a one-off event.
As Cece notes starting inspection as the veins leave the skull is important in order to reduce the possibility of under-treatment. I suspect that this is well within the comfort area of a neuroradiologist.
Detailed questions I know but my aim is that pwMS know what they are paying for.
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: List of Doctors

Postby Cece » Mon Mar 12, 2012 4:31 am

Here's a recent publication by Dr. Syed in which Dr. Hector Ferral is also listed as an author. http://www.wjgnet.com/1948-5182/abstract/v4/i2/35.htm

And a video: http://www.youtube.com/watch?v=XUdbM_mG0CM

Bio: http://www.daytonir.com/AboutUs/OurDoctors.aspx
Dr. Mubin Syed is triple fellowship trained, multiple specialty board certified physician practicing in Dayton and Springfield, Ohio over the last 18 years. Family is what brought Dr. Syed to the Dayton area and has been the reason why he is so loyal and dedicated to the community. Dr. Syed’s wife and three children are a very important source of support and strength, allowing Dr. Syed to dedicate himself to his practice and work. Prior to practicing and settling with his family in the Dayton area, Dr. Syed began his education and training in the state of Massachusetts where he attended medical school at Boston University. Following graduation he continued on to Maryland where his academic research career began, and on to Indiana where he completed his residency and fellowships at Indiana University Medical Center.

Dr. Syed has fellowship training in Diagnostic, Neuroradiology and Interventional Radiology. This allows him to expand the type of services he can provide to patients focusing not only on the peripheral anatomy but also the head and neck. Dr. Syed is a clinical associate professor at Wright State University School of Medicine. His love for academic research and teaching is immense and exemplified in the papers he has published, journal abstracts, news paper articles written and the lectures he gives to students and other physicians as well as clinical instruction he gives to physicians training them on various procedures and skills. Dr. Syed has recently written a text book on pain management, soon to be published and used by institutions around the country. He is a well known, respected and committed member of the academic physician community. Dr. Syed is noted expert on pain management, teaching and lecturing various pain management procedures and techniques. Dr. Syed has membership in many medical societies in the area, and is part of various hospital committees including Endovascular, Credentialling and CME. Dr. Syed is a decorated physician having been honored and awarded many certificates of recognition for excellences. He has been an investigator for four research studies as well, having had numerous trials through out the years yielding invaluable clinical information to help future patients.

Dr. Syed is President and co-owner of Dayton Interventional Radiology and has been providing both out patient and inpatient clinical care for the last 5 years. The focus of Dr. Syed’s practice is primarily interventional pain management, however his experience with Vascular Interventional work in the head and neck areas distinguishes him from all other Interventional radiologist in the region. Living, working, researching and educating in the Dayton community has been Dr. Syed mission and he hopes to continue on with this journey expanding his knowledge base and clinical skills.

With an interest in academic research, we may see him doing research and publishing on CCSVI.
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Re: List of Doctors

Postby DIR » Mon Mar 12, 2012 7:38 pm

hi Cece! Looks like you got a lot of information on Dr.Syed and I am very happy to see that. He has so much experience and is dedicated in working his hardest to help MS patients. He does have a passion for research and I did inform on him writing an article about CCSVI, so hopefully we can see that soon. He performed 2 more liberation procedures with great success. This only makes him want to continue to help those in need with the hope of getting better and better results.
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Re: List of Doctors

Postby DIR » Mon Mar 12, 2012 7:43 pm

Mark W: I completely understand that you want to know details about the doctor before informing MS patients. The procedure takes up to 2 hours depending on complication. There is a consultation scheduled 2 hours before which gives everyone time. He does inspect the jugular and azygous veins and usually has to balloon them. This is just some answers I would be more than happy to give you the contact information for the coordinator of the CCSVI treatment. He will be able to answer your questions more in depth, clearing any uncertainties you may have. Just let me know. Thank-you for taking interest. We appreciate it.
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Re: List of Doctors

Postby DIR » Mon Mar 12, 2012 8:21 pm

also, we did a patient testimonial on an MS patient who received the liberation treatment. I hope you take a few minutes to look at it. Its just inspiring and gives hope.
http://www.youtube.com/watch?v=ipQg8D6g ... r_embedded
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No IVUS at DIR ?

Postby MarkW » Tue Mar 13, 2012 3:18 am

Hello DIR,
I asked two simple questions to help pwMS decide on the clinic to go to:
1-Does DIR uses IVUS on all patients in diagnosis and balloon sizing?
2-Which veins are investigated?
The answers are;
1-No
2-Depends on time

My advice to pwMS is that better results are acheived by Interventionalists who use IVUS and investigate a wide number of veins. Inspiring testimonials by a few patients do not replace using the best tools and a wide investigation of possible problem veins.

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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Best Tools/Methods or Experience ???

Postby MarkW » Tue Mar 13, 2012 3:32 am

Hello Cece,
We both have had two procedures because the first one did not investigate the full extend of our CCSVI syndrome (they were early procedures). I do not doubt the there are lots of Interventionalists, like Dr Syed, who are skilled in their profession. However, if they do not use the correct tools (Catheter venography and IVUS) and leading practice, they may miss some problems. Many pwMS do not have the luxury of two or three procedurers. My aim is to point out the 'gold standard' clinics, who are more likely to get it 'right first time'.
Best wishes,
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: Best Tools/Methods or Experience ???

Postby DougL » Tue Mar 13, 2012 4:27 am

MarkW wrote:The answers are;
1-No
2-Depends on time


i am very thankful that Dr S doesn't agree with number 2. his typical 2 hour routine turned into a 5+ hour marathon because he couldn't fix one thing but wouldn't give up.

total additional cost to patient was $0.

MarkW wrote:Hello Cece,
We both have had two procedures because the first one did not investigate the full extend of our CCSVI syndrome (they were early procedures). I do not doubt the there are lots of Interventionalists, like Dr Syed, who are skilled in their profession. However, if they do not use the correct tools (Catheter venography and IVUS) and leading practice, they may miss some problems. Many pwMS do not have the luxury of two or three procedurers. My aim is to point out the 'gold standard' clinics, who are more likely to get it 'right first time'.
Best wishes,
MarkW


my partner's first procedure was in Germany and done in the early evolution of CCSVI. the stage when very little was known about it. IMO, the doctor did a great job given the knowledge and tools at his disposal.

however, giving the knowledge and tools available today, there is no excuse for missing things or undertreating or damage because of too aggressive treatment.
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Re: List of Doctors

Postby Cece » Tue Mar 13, 2012 8:26 am

We all know Dr. Sclafani is excellent, and that his techniques have been refined over a couple years of treating CCSVI, as well as past experience in the veins. Did you know that Dr. Zamboni's neurologist is referring his Italian patients to Dr. Sclafani? (I read that on twitter.)

I mentioned that Dr. Syed is a co-author on a very recent 2012 publication with Dr. Hector Farrell of Chicago because Dr. Farrell is known to use IVUS on every patient. I would expect that if Dr. Syed discussed CCSVI with his colleague, Dr. Farrell might be an influence toward the use of IVUS.

The shortcomings of Dr. Syed, from a patient's point of view, is that he is new to CCSVI, he may not use IVUS, we do not know what anticoagulation he uses, and he has a history in pain management which may not be as relevant to treating CCSVI as a history in neck trauma or other possible specialties. I actually don't know much about pain management as done by an interventional radiologist, so I am only assuming that this does not involve much time spent in the neck veins.

CCSVI has a learning curve and I generally suggest that people be cautious about a doctor who has done fewer than 50 - 100 CCSVI procedures.

However, not everyone can travel to get CCSVI treatment from a more experienced provider. Insurance doesn't always cover out-of-state providers. And if a patient from Ohio opts to be treated out-of-state, now they have an in-state option for follow-up care and potentially future procedures.

We are as always 98% in agreement, Mark. I agree that IVUS is essential to a 'best practices' procedure.
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Re: List of Doctors

Postby DIR » Sun Mar 18, 2012 7:18 pm

Mark W: I am sorry that I could not answer your questions more clearly. I passed on the message to my supervisor and he contacted Dr.Syed. He is going to read through your posts and answer the questions that you have asked and the clarifications you may need. He will get to it as soon as he can. Thank-you!
Cece: Thank-you for keeping a positive approach on this. Dr.Syed will try to clear the misunderstandings. It is true that CCSVI treatment is not easy to get and can be very expensive. Dr.Syed is helping as many MS patients as he can in the best way possible. He performed 4 procedures last week with great results and hopes to keep improving. Thank-you!
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