Info/FAQ
Chronic cerebrospinal venous insufficiency syndrome or (CCSVI) is a narrowing of the neck and chest veins draining the brain and upper spinal cord which may contribute to the progression of Multiple Sclerosis.
Studies linking MS and CCSVI are inconclusive, some have suggested a link while others have not. In addition, the criteria used to diagnose CCSVI has not been adequately established.
What are common CCSVI symptoms
Brain fog
Fatigue
Issues with balance and/or coordination
Lower and/or upper extremity numbness/other skin sensations
Issues with lower and/or upper extremity balance/coordination
Vertigo/dizziness
Headaches
Cognitive impairments (e.g., memory, concentration)
Heat and/or cold intolerance
Numbness, tingling or other skin sensations
Visual Disturbances
Speech Disturbances
Sleep disturbances
Bladder urgency/incontinence
Bowel urgency
Constipation
What is the procedure and what symptoms can it help?
The procedures which we are performing on patients (venogram and angioplasty) have been in use for many decades.
Endovenous angioplasty are established and safe techniques in their application to the venous obstructions seen in the jugular and azygos veins.
These procedures are therefore not experimental for indications other than CCSVI.
We do not know if treating these types of blockages will have assured benefits for patients with MS or other disorders related to the autonomic nervous system.
Symptoms such as fatigue, headache, insomnia, impaired cognition (brain fog) and vision, disturbed balance, heat intolerance, numbness, stiffness, tremors, weakness, urinary and bowel disturbances, etc. are often present in patients with blockages of the jugular or azygos veins and improvements in the symptoms may be seen post-procedure.
Are you using the ‘Zamboni Method’ for treating the veins?
Yes.
We perform venograms on both of the jugular veins and the azygos vein to check for any blockages just as Dr. Zamboni did in his study.
We then treat any abnormalities that we find just as Dr. Zamboni has done.
Our physician has personally discussed this procedure with Dr. Zamboni on 2 separate occasions.
In addition, we also use intravascular ultrasound to obtain highly accurate 3 dimensional visualization of the inside of the vein prior to and after treatment.
Do you treat patients from outside the United States?
Yes.
We have been treating patients from Canada and are open to treating patients from other countries around the world.
There have been rare occurrences of clot formation at the angioplasty site (3-5%).
The FDA has received report of one patient (not from our center) who died from bleeding in the brain and one patient who suffered paralysis from a stroke.
Other rare events include venous injury, blood clots in a brain vein, cranial nerve damage, and abdominal bleeding.
Why should I choose Dayton CCSVI
Dayton CCSVI is the only CCSVI practice in the country with a Fellowship trained, Board Certified Neuroradiologist and Interventional Radiologist (Dr. Mubin I Syed) who specializes in the treatment of both central nervous system and venous disorders.
Dr. Syed has 6 Board Certification in Interventional Radiology, Neuroradiology, Endovascular Medicine and Obesity Medicine and Interventional Pain Medicine. He has written a book regarding pain procedures.
He has also published several original articles on “cutting edge” treatments, including bariatric embolization for weight loss surgery and vertebroplasty/kyphoplasty and has received multiple patents for medical devices and treatments.
For assurance and prospective patient's comfort, Dr. Syed is very available to talk to patients through his personal cellphone.
Plus, scheduling your appointment with us is easy.
Lastly, only 3 days of stay is required for the procedure.
We were one of a few centers that worked closely with the FDA from 2012-2013 to successfully develop an FDA-IDE study for CCSVI outcomes and safety.
How long have you been treating patients with CCSVI?
We have been involved with CCSVI patients since December 2011. We are the first group to treat CCSVI patients in Ohio and neighboring states.
What does the typical procedure include?
The procedure includes the venographic evaluation of the jugular and azygos veins (Zamboni protocol).
Treatment typically involves venoplasty of the jugular veins and the azygos vein.
Do you use stents?
No.
Unfortunately there is no FDA-approved venous stent available on the market.
Do you use drug-eluting balloons and/or stents
The use of drug-eluting stents and balloons have been in practice for many years for a variety of indications. However, in CCSVI, the cause of blockages inside the vein is completely different from heart disease and other artery diseases.
The proper treatment of vein blockages in CCSVI is to dilate the valve open which causes a permanent fix of the blockage.
The use of drug-eluting devices is contradictory to the etiology of the disease process in CCSVI and is thus, completely useless.
Do patients have to take anticoagulants and blood thinners after the procedure?
To help prevent blood clots from forming inside of the veins after the procedure, all of our patients are placed on a regimen of an anticoagulant and blood thinner after the procedure.
The anticoagulant we use is called Pradaxa and the blood thinner is called Plavix.
After the procedure you may start taking Pradaxa (150 mg two times daily) for 6 weeks after the procedure.
Once you have finished the regimen of Pradaxa, Plavix (75 mg once daily) is taken for the next 6 weeks.
In certain cases some patients may be prescribed other medications in place of Pradaxa.
Both medications, Pradaxa and Plavix, may be offered in coordination with your primary care physician.
How much does Pradaxa and Plavix cost?
The local pharmacy located near our office charges approximately $400.00 USD for Pradaxa and approximately $30.00 USD for Plavix.
Do I need to stay overnight in the hospital or is this an outpatient procedure?
Your procedure is performed on an outpatient basis.
This means that you will check-in to our host facilities in the morning, have the procedure, and be allowed to leave after meeting discharge criteria following your procedure.
How long will I be in Ohio for the consultation and procedure?
The consultation is done on the same day as the procedure.
We ask that you stay for one day after the procedure. This ensures that you are available for any follow-up the day after your procedure.
Thus, most patients will be in Ohio for about 3 days including arrival the day before the procedure.
After the follow-up appointment patients are free to leave unless directed otherwise.
If there was an emergency, do you work at hospitals in your area or just at your vascular centers?
As a private group specializing in a wide range of treatments and diseases, we have active privileges at several area hospitals.
We provide both inpatient and outpatient services at these hospitals on a daily basis.
Is your physician ‘Board Certified’?
Yes.
Our physician has Board Certified in his respective fields (Neuroradiology and Interventional Radiology).
Has your physician had ‘fellowship training’?
Yes.
Our physician has completed a fellowship in Neuroradiology and Interventional Radiology.
Since neuroradiologic and interventional techniques are the ones used in the treatment of CCSVI patients, we feel fellowship training is very important to ensuring expert care for our patients.
How many venograms and angioplasties have you done?
Our physician has performed thousands of central venograms and angioplasties for blocked veins for a variety of different diseases and hundreds of CCSVI procedures.
This extensive experience helps allow us to be a leader in the treatment of CCSVI.
What does your fee include?
Our fee includes the consultation prior to your procedure, the procedure itself, and the follow up visit with our physician the day after the procedure.
The procedure includes all nursing, medications, anesthesia, materials (not including stents), recovery time, and facility charges.
Costs not included in the procedure are travel, board and the Pradaxa /Plavix medications.
There are no other hidden costs!
Travel/Accommodations
Patients are responsible for acquiring the necessary travel and board they made need for their procedure. Based on proximity and service we recommend booking a reservation at:
Marriott at the University of Dayton
1414 S Patterson Blvd, Dayton, OH, 45409
(937-223-1000)
Where is the procedure performed?
The vascular center where we provide CCSVI treatments is located at Riverview Health Institute specializing in fields of care such as Orthopedic Surgery, Neuro/Ortho-spine Surgery, Gynocology, Fertility, Pain Management, Podiatry, Interventional Radiology, and Plastic Surgery.
Elizabeth Place Interventional Consultants (EPIC) hosts the interventional suites for CCSVI patients and provides excellent nursing and anesthesia care teams.
Additionally, EPIC offices generously coordinate payment and COVID screening for Dayton CCSVI patients.
These centers have been designed and built to specialize in venograms, angiograms, intravascular ultrasound, atherectomies, angioplasties and stenting.
Our centers are not required to have a designated accreditation like hospitals so there is no formal ‘certificate’ or ‘accreditation’.
What tests do you require before I get treated?
We do not require any testing prior to your treatment. Patients are welcome to acquire Zamboni-Protocol Doppler Ultrasound imaging of the head and neck veins at one of the following centers (availability is subject to change):
Springfield Heart Surgeons
1671 N Limestone St, Springfield, OH 45503
937-324-5511
CCSVI ATL
455 East Paces Ferry Rd NE Suite #201, Atlanta, GA 30305
(877) 851-2815
If you wish to have a MRV performed, one can be obtained from any location that offers it near you.
I have had no ultrasounds (Doppler) performed on my veins, do I still need an MRV?
No.
I have had imaging at a location outside of your center but I would like to be treated by Dayton CCSVI. Can you still treat me?
Yes.
All Imaging can be sent to our office address:
ATTN: CCSVI Coordinator
Elizabeth Place Interventional Consultants
1 Elizabeth Place
Dayton, OH 45417
What tests do you order for follow-up?
No formal follow-up testing is required.
Additional visits and ultrasounds are optional.
If you do not order any follow-up tests, how do you know if I have re-blocked my veins?
At this time we are following patients based on their response to treatment.
Specifically, if a patient improves after the procedure, and then loses those improvements months later, we would discuss your options with you at that time.
Another physician has treated me but I think my symptoms have come back. Can you help me?
Yes, we have treated many patients successfully from other physicians who have previously performed the procedure.
How do I schedule an appointment?
Setting up an appointment with us is easy!
Just submit an inquiry via Contact Us.
Once you have submitted your form, uur dedicated CCSVI Research Coordinator will help facilitate your tests, consultation, and procedure within 48 hours. You may also contact our CCSVI Research Coordinator directly, (937)-389-6979 to leave a brief message or email us at daytonccsvi@gmail.com, for scheduling and basic information.
How can I pay?
Payment will be managed by the excellent staff at EPIC offices.
Does my insurance cover my treatment?
No. The procedure is considered experimental for CCSVI or MS as the indication.
Patients are welcome to submit insurance claims on their own. Subsequent paperwork can be provided upon request.
Where is your center located?
Elizabeth Place Interventional Consultants (EPIC) at Riverview Health Institute
1 Elizabeth Place
Dayton, OH 45417
Is there a waitlist for CCSVI surgery at your center?
Based on availability, appointments can be scheduled within 4-8 weeks of your initial request. It is best to choose 2-3 desirable dates in case your first option has been taken.