High Hopes on Pacific Coast

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

Re: High Hopes on Pacific Coast

Postby questor » Fri Dec 09, 2011 9:46 am

cheerleader wrote:Also THRILLED to hear Stanford is doing ULTRASOUND now! Wonder if they finally had their techs train with Dr. Zamboni's team? Let me us know how that goes.
cheer

I had a 1.5hr ultrasound exam yesterday at Stanford. The tech said she was using the CCSVI protocol, that she received her training from Canadian techs, who in turn received their training from teachers from Italy. She said they had started to use this technique at Stanford in August 2011. She said she'd gotten some very nice images during the exam.

I felt like I was in a CTV video, especially when I could hear the audible sounds from the machine.

CRHInv wrote:What prompted the ultra sound exam?
Beth

When I met with Dr. Dake in November to review my neck MRI images, he wanted the exam because of some unusual valve images he saw in the MRI. I have a meeting scheduled next week to review the ultrasound findings.

--Tracy
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
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Re: High Hopes on Pacific Coast

Postby cheerleader » Fri Dec 09, 2011 11:50 am

questor wrote:
cheerleader wrote:Also THRILLED to hear Stanford is doing ULTRASOUND now! Wonder if they finally had their techs train with Dr. Zamboni's team? Let me us know how that goes.
cheer

I had a 1.5hr ultrasound exam yesterday at Stanford. The tech said she was using the CCSVI protocol, that she received her training from Canadian techs, who in turn received their training from teachers from Italy. She said they had started to use this technique at Stanford in August 2011. She said she'd gotten some very nice images during the exam.

I felt like I was in a CTV video, especially when I could hear the audible sounds from the machine.

CRHInv wrote:What prompted the ultra sound exam?
Beth

When I met with Dr. Dake in November to review my neck MRI images, he wanted the exam because of some unusual valve images he saw in the MRI. I have a meeting scheduled next week to review the ultrasound findings.

--Tracy


WHOOO HOOOO!!! Thank you SO much for doing the ultrasound with the Stanford team, Tracy. Honestly, from the bottom of my heart I'm sending you thanks and xoxoxo. This is huge. The fact that the Zamboni protocol of doppler diagnostics is finally being implemented at Stanford will provide all of you original pioneers the diagnostic back up and follow up you need to make sure there are no intraluminal defects hampering flow as you continue on....
Looking forward to Jeff being dopplered some day soon :-) Although he continues to do really well, the confirmation that everything is flowing correctly via non-invasive doppler will be a real gift.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: High Hopes on Pacific Coast

Postby questor » Tue Dec 20, 2011 3:05 pm

I had a phone consult with Dr. Dake the other day to review the result of my Stanford ultrasound exam earlier this month.

He said the result suggests that flow in the left IJV and operation of the lower valve are not optimal, and that if I want to explore further treatment, he'd suggest angioplasty at the location of this valve, located roughly behind my left clavicle. He said this procedure would involve minimal risk, but that there would be some risk as with any internal procedure, and that he could not be sure of any specific result, also that although this would not require an over-night stay in the hospital, I would need to be on blood thinners again for a short time.

I told him that given the low risk, I'd consider having this done. He said that Alexandra would be in touch with me to schedule an appointment.

Since then, I've given this more thought, and have decided not to proceed for several reasons:

    1) My primary insurance is Medicare, my secondary will only pay after Medicare pays. Medicare has decided not to pay for my last Stanford exams, and I assume Medicare may also balk at paying for an angioplasty procedure (Medicare has paid only $130 of $3400 in charges at Stanford over the last few months).

    2) There is low risk of thrombosis, or other complication with angioplasty, but there was also low risk that my shoulder would be adversely affected by the IJV stent procedure from a few years ago. Given the slow/incomplete recovery of my shoulder (I'll probably be dealing with this complication for the rest of my life, like an old war injury) I don't want any further issues to deal with.

    3) This procedure would not be part of a formal study, and given the slow rate of progression of MS in me at this point, I have time to wait for more medical studies to complete, further results to be published, consensus to be reached in the medical community regarding CCSVI, and Medicare to cover the procedure before I proceed (or not).

So, this phase of my CCSVI Stanford story is now complete. I'll probably continue with yearly MRV follow-up tests, but no further procedures at this point (Medicare did NOT pay for my last neck MRV or ultrasound exams at Stanford, and it paid only a small amount for my consultation with Dr. Dake).

For the record...

--Tracy
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
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Re: High Hopes on Pacific Coast

Postby questor » Mon Feb 24, 2014 3:03 pm

questor wrote:...I'll probably continue with yearly MRV follow-up tests, but no further procedures at this point...

In looking back over my old posts, I notice that I never updated this topic about my last contact with interventional radiology at Stanford.

I contacted Dr. Dake's office last summer (2013) to arrange a follow-up exam to check my stents.

I was told that unfortunately Dr. Dake would not be able to provide follow-up care, that it would be best to contact my neurologist or PCP.

Also, atrophy in my trapezius muscle has not improved.

Now this thread is complete.
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone
Former Ampyra User
Regular Botox Bladder Injections
User avatar
questor
Family Elder
 
Posts: 280
Joined: Mon May 22, 2006 3:00 pm
Location: Northern Calif Monterey Bay Area

Re: High Hopes on Pacific Coast

Postby cheerleader » Mon Feb 24, 2014 5:41 pm

????
I know of three of the original patients who just had doppler scans and MRV at Stanford this month.
PM me, Tracy. You should be able to get in to be scanned at Stanford, if you want to.
cheer/Joan
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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