High Hopes on Pacific Coast

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

High Hopes on Pacific Coast

Postby questor » Tue Jul 21, 2009 9:06 pm

Hi everyone...
I just got off the phone with Dr. Dake. He asked me a few questions about my medical history, and gave me a high-level overview of the steps to come next. He said he'll be out of town for the next few days and asked me to contact Alex to work on selecting a date for the procedure.

I feel like I just won the lottery! :D :D

I had just more or less talked myself into being OK if I wasn't contacted for this procedure, and then he called.

I know this is still a very new procedure, and that there are unknowns about the actual short and long term benefits, but I'm very glad that it looks like I'm going to be able to take part.

Thanks in no small part to cheerleader and all those who have gone before me in the last few months...

Wow!

--Tracy
Last edited by questor on Tue Jun 28, 2011 1:10 pm, edited 1 time in total.
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Re: High Hopes in Santa Cruz

Postby cheerleader » Tue Jul 21, 2009 9:27 pm

tuckertd wrote:
I know this is still a very new procedure, and that there are unknowns about the actual short and long term benefits, but I'm very glad that it looks like I'm going to be able to take part.

--Tracy


Tracy...
I'm glad you got to speak to Dr. Dake, and that you are going to schedule an appointment for the scans/possible procedure. I'm especially glad that you said the above...because you're right. This is all very new, with unknowns. But so far, so good. And knowledge is power.
looking forward to following your journey-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby catfreak » Tue Jul 21, 2009 9:48 pm

Great news Tuck,

I am getting my ducks in a row so I can send my docs to Dr Dake and hopefully get an appointment. I spoke to Alex yesterday and working on all the stuff they need to decide if I am a candidate.

Best of luck to you!

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby peekaboo » Wed Jul 22, 2009 6:00 am

Congrats Tracy! will be looking forward for any news you will share from your stanford experience
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Postby questor » Wed Jul 22, 2009 10:11 am

I need to start by contacting my PCP and Neurologist to bring them on board, and to make sure I have access to care for blood monitoring after surgery assuming the stent procedure is recommended in my case.

A big question I have relates to my daily use of Verapamil for migraine prevention. As a vasodilator, I wonder if this will partially mask or interfere with the MRV. I understand that 48hrs is enough time prior to surgery to stop taking LDN, but it would take me about a month to wean myself off of Verapamil if this is necessary before the procedure.

I have to check into this, forgot to mention it last night to Dr. Dake.

It'd be miraculous if the stent procedure did anything to put an end to the headaches and migraines. I'd definitely rather carry a couple of stents around for the rest of my life than to be taking Verapamil til the day I die (I'm always wondering how much longer these little pills will continue to work to keep the pain away).

Thanks for the support, everyone.

EDIT 08/08/2009:
GP and Neurologist have been contacted, and both are interested and supportive. I contacted Dr. Dake to ask if verapamil will cause problems in any way with the testing or the procedure, and he assured me that it will not.

--Tracy
Last edited by questor on Sun Aug 09, 2009 8:39 am, edited 2 times in total.
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Postby peekaboo » Wed Jul 22, 2009 10:23 am

I take and anti-depressant and it is a vascular constrictor and they just said I will have to take more of the coumadin to get to the disired level.

I would email Dr D with this additional info and you may not have to do a thing...just take less coumadin..

Good luck w/ GP and Neuro

Holly
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Postby Jamie » Wed Jul 22, 2009 4:43 pm

Awesome!

I hope its everything you want it to be.
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Postby questor » Thu Jul 23, 2009 4:56 pm

What an incredible day. First, Dr. Zamboni's preliminary Liberation study results were published, and second, I just got preliminary dates for my procedure.

I'm on for a September 15th pre-op, and September 16th procedure.

I told Alexandra that she should expect to be very busy soon (as if she isn't busy enough already) based on Dr. Zamboni's preliminary results that I'd just seen, and she asked if I'd send her a copy. So, I just sent her a link to Cheerleader's post.

Edit
07/29/2009: Procedure date changes
08/11/2009: Received confirmation e-mail today for dates/procedures
09/27/2009: Date scheduled for 2-month checkup - 11/09/2009
Last edited by questor on Sun Sep 27, 2009 10:18 am, edited 3 times in total.
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user
Botox Bladder Injections
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Postby catfreak » Thu Jul 23, 2009 5:02 pm

Congrats on the date!!

Isn't this all just amazing?? I hope I hear from them next week for a phone interview with Dr Dake. OH!! I am going to start getting impatient and I so want to stay calm.

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Some Background Information About Me

Postby questor » Sat Jul 25, 2009 10:42 am

Hi,
For the record, below is a summary of the background information I sent to Stanford for review by Dr. Dake:

I was diagnosed with RRMS in 1987. My first MS related event was an attack of optic neuritis in the left eye in 1981. I first met with with the doctor who eventually diagnosed me in 1986 because of problems with double-vision. I declined diagnostic testing at that time because of the expense and because there were no treatment options for MS back then. A year later, after additional episodes of double-vision and vertigo, I returned to complete the tests for a diagnosis (evoked potential and MRI).

I have had recurring and gradually worsening problems over the years related to body fatigue, heat sensitivity, bladder and bowel problems, nausea, sexual impotence, migraines, lower body weakness, diminishing physical and mental stamina, nystagmus, poor left-eye vision and muscle control, gait instability, and reduced senstation below the knees in both legs. Cognitive and short term memory weakness first started to affect my job performance in 1993, and I eventually stopped working in 2005 because of these problems.

I have injected Copaxone daily since 1998. I have had several courses of prednisone over the years, as well as a 7-month course of monthly methylprednisolone infusions in 2007. (I now have osteopenia.)

In addition to Copaxone, I take 480mg of verapamil nightly for migraine prevention, and 4.5mg of low dose naltrexone before bed (started September of 2008). I also take several over-the-counter supplements, like acetyl l-carnitine, calcium, Vitamin D, Vitamin E, EPA/DHA, acidophilus, etc.

I removed all diary and gluten from my diet in 2008 based on BBD recommendations in hopes of slowing down progression.

I was first classed with SPMS in 2000, and I am rated 4 on the EDSS scale ("early cane"). I have exercised regularly since high school, and continue with a 1/2hr free weight routine 4 times a week at a local spa. I've studied and practiced Tai Chi for several years to help with balance.

I'm a 53 yo male.

Attachments:
---------------
o CD from MRI exam 10/2008
o MRI Written Summary 10/2008
o MRI Written Summary 11/2004
o UCSF MS Center Second Opinion Regarding Treatment Options 9/2008
o Neuropsychological Assessment dated 10/17/2005
o Neurologist's Letter to Summarize MS History - 1/2006
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Postby questor » Sat Aug 15, 2009 1:12 pm

----
Last edited by questor on Wed Apr 11, 2012 5:38 pm, edited 9 times in total.
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user
Botox Bladder Injections
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questor
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Postby Sharon » Sat Aug 15, 2009 2:19 pm

Tracy - Sounds like you are busy getting everything in order before your September date. The log which you have presented to Dake, is just as important for you as it is to Dake. After the procedure there may be things that just aren't happening anymore. Unless you have written them down, you might forget about them.
The anticipation builds as you get closer. Just know that you will be in good hands with Dake's staff and the staff at Stanford.

It's very cool to see how interest in this is spreading. May the favorable results and momentum continue to build.

Ditto on your above statement

Take care,
Sharon
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Postby questor » Fri Sep 04, 2009 10:09 am

I just came across this item about CCSVI in MS News, another resource I follow regularly on the net:

MSNews Post about CCSVI

As always, it's good to see this news spreading to a wider audience.

I post this here as I didn't want to create a new topic for this.

--Tracy
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user
Botox Bladder Injections
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Postby cheerleader » Fri Sep 04, 2009 10:24 am

questor wrote:I just came across this item about CCSVI in MS News, another resource I follow regularly on the net:

MSNews Post about CCSVI

As always, it's good to see this news spreading to a wider audience.
I post this here as I didn't want to create a new topic for this.

--Tracy


Thanks for this, Tracy. I've been in touch with Hollie at Accelerated Cure, and she's asked for my notes from Bologna to include on the site. I'd written to Art last month (he comes on here once and awhile) but he's left his post at AC, and Hollie is running the show now. They are a wonderful organization, and I hope we can get their blood bank involved in the CCSVI research at Stanford. What a terrific resource they are!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby catfreak » Fri Sep 04, 2009 8:51 pm

Hi,

I tried to open this and it says;

tinyproxy 1.6.0
The page you requested was unavailable. The error code is listed below. In addition, the HTML file which has been configured as the page to be displayed when an error of this type was unavailable, with the error code 14 (Bad address). Please contact your administrator. Bad Request

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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