Dr. Dake's admission policy

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

Dr. Dake's admission policy

Postby samish » Fri Sep 18, 2009 9:44 am

I called Angela and she said Alex would call but it has been over a week. Dors anyone know how long the wait is? No doctor referred me, is this required? Are other tests required other than copies of MRI's? Please help!
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Postby Rokkit » Fri Sep 18, 2009 10:24 am

You don't have to be referred. The absolutely will call you, they are just swamped.

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Postby MaggieMae » Fri Sep 18, 2009 10:41 am

Samish,

As Rokkit said, it can be a long wait. I had talked to Alex back in August and am still waiting to talk to Dr. Dake. Take time and read through this forum. There is much to learn. Test required is an MRV. We tried to get the MRV at a local hospital with no success. Probably best to have test done at Stanford.
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Postby CureOrBust » Sat Sep 19, 2009 10:50 pm

I got an MRV performed locally, and it ended up being only of my head. I started ringing around to get another one performed from my diaphragm to the top of my head, and the radiologists all seem to imply they do not perform this.
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Postby CNClear » Sat Sep 26, 2009 3:51 pm

I finally got the call from Alex!! It took about 2 weeks, i think from the first time i contacted her by email...has she called yet?

Looks like end of November for me...I pressed Alex for how soon she maybe thought I could get scheduled...of course, I am now waiting for Dake to call...

Maybe we will get to meet??

Lisa, aka CNClear
RRMS dx 1983, age 50
Waiting for Dake's call! (singing California, Here I go…)
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Postby magoo » Mon Sep 28, 2009 9:32 am

There are a few of us waiting for a call from Dr. Dake. Did you send in a health history along with your MRI? It is so difficult to wait, believe me you are not alone. Hopefully, those of us who want to go to Stanford will get our opportunity soon!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby samish » Sun Oct 04, 2009 2:11 am

I heard from Dr. Dake and Alex but they did not schedule me...sigh. She sais she would call me back but that was a while ago. She kept askng for a CD of my MRI but my neurologist only has an old report, not a CD, which I sent. Since it has been sereral years since my previous MRI, should I schedule another one? Does anyone have Alex's email? She gave it to me but my tremors wiped it out instead of saving it...Thaqnks.
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Postby Shannon » Sun Oct 04, 2009 2:11 pm

Hey guys! I am also just starting out here and hoping to be able to get to Stanford myself. I am seeing my PCP tomorrow and hoping for the referral (I have an HMO). I am not terribly optimistic that I will get the referral/insurance coverage that I need, but I keep praying. :) It would be awesome if some of us were going at the same time and could meet!
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Postby CNClear » Sun Oct 04, 2009 3:27 pm

I just got THE call!! I'm a good candidate!! I feel like I just won the lottery or something! Dr. Dake is super! Since I've had MS for almost 30 years and it usually does seem to progress around this amount of time, even if you have had a long period of remission, he agrees that time is not on my side, here!!

I was concerned that my being allergic to cheap jewelry, which I have assumed is a metal allergy might be a showstopper...but no problem there, Dake said, there is a material that the Elgin Watch Company developed for their watch springs that no one has been allergic to and we can use that!!

YAY!! I am sooo happy! :) :D :) :D :) :D :D :D

And that is such perfect timing because my son will be deploying to Afghanistan (He's a Navy corpsman...I'm so proud!) on Nov 7th and now I can concentrate on this good news, instead of driving myself crazy with worry...at least for a little while...distraction is a good thing!!

Welcome to all the newbies!

Shannon, here is Alex's email...
ADuran@stanfordmed.org

I gotta remember to breathe! I think I was so excited that I held my breath for most of the phone call...

so, to the others who are still waiting...It will happen! Dake will call! Hang in there!

Lisa aka CNClear
dx RRMS 1983, age:50
Dake has called!!!!
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Postby magoo » Sun Oct 04, 2009 4:38 pm

I am so excited for you Lisa!!!!! Let us know when you get your dates. I know that exciting feeling! My feet didn't touch the ground for a week!!
Funny, I never put two and two together about the jewelry question, lol! I guess I was too excited to ask him :) Celebrate!!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby Out2l8 » Sun Oct 04, 2009 7:01 pm

Just do a Google search for "metal allergies and stents" and you'll get well over 10,000 hits.

I'm sure you will find solutions for this with your doctor related to your situation . Minor detail
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Dr. Dake's admission policy

Postby samish » Mon Oct 05, 2009 1:58 pm

I have an appt. at the end of Nov.! I am so tired f all this I could kiss the hem of Alex's jeans!!! AAs far as I know I have no nickle allergy. I hope and pray this makes my life better!!!
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Postby mrhodes40 » Mon Oct 05, 2009 2:20 pm

Great you guys! I am so happy for you all!

I hope you all have a primary care doctor who is ready and willing to do your follow up care with coumadin? :wink:
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Shannon » Tue Oct 06, 2009 5:18 am

I also have no nickle allergy (that I know of). Is there a way to be tested just in case? I'd sure to hate to be wrong on that question. I sometimes get sore ears when I wear cheap earrings, but other jewelry is fine and I figure the earring thing is probably just due to not washing them properly enough. But not for sure! My husband, on the other hand, cannot even wear gold because of the nickel element and he gets a red rash. Not even a watch!

I have now seen my PCP and she is on board with us. She said she will wait for Alex to contact her about what she must do to gain approval. I have an HMO, so it will be involved and difficult. Please pray for me to be able to have this procedure. I have 4 kids and could really use a little less fatigue and better overall health. I mentioned to my doc about the Coumadin or Warfarin, and she acknowledged that this would be necessary. She also showed some concern about the risk of stroke DURING the procedure. 8O That frightened me a bit.

Anyhow, goodluck to those who have been approved and will be going. This is very exciting for us all!
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Postby Sharon » Tue Oct 06, 2009 6:33 am

Shannon -

She also showed some concern about the risk of stroke DURING the procedure.


The procedure would not cause a stroke because you are working with the veins, not the arteries. You might have other health issues which could affect the outcome. As we have said numerous times on this board -- this is surgery and there is risk involved.

Here is some info on strokes:
Types of Strokes: Hemorrhagic and Ischemic
Learn about the two main types of stroke, what they have in common, and how you can protect yourself from both types.
By Diana Rodriguez
Medically reviewed by Lindsey Marcellin, MD, MPH Print Email There are two major types of strokes: ischemic stroke and hemorrhagic stroke, and variations within both. A third type of stroke, called a transient ischemic attack, or TIA, is a minor stroke that serves as a warning sign that a more severe stroke may occur.

Strokes: The Ischemic Stroke

Ischemic strokes are the most common, making up about 83 percent of all strokes. An ischemic stroke occurs when a blood vessel becomes blocked, usually by a blood clot. Clots can form when blood vessels become clogged with fat and cholesterol, a condition known as atherosclerosis. In an ischemic stroke, blood can't reach the brain, and brain cells suffer from the lack of nutrients and oxygen that they would normally get.

There are actually two different types of ischemic stroke, depending on where the clots form. Clots that form inside a blocked blood vessel in the brain cause a thrombotic stroke. Embolic strokes result from clots that form elsewhere in the body and travel toward the brain until they become lodged in a narrow artery, causing a blockage.

Ischemic stroke may also be caused by a deformity in the valves of the heart or as a result of a condition called endocarditis, in which the lining inside the heart becomes inflamed. Clots can form on these abnormal surfaces and later travel to and lodge in a small artery in the brain.

Strokes: The Hemorrhagic Stroke

A hemorrhagic stroke occurs when a blood vessel in the brain bursts or breaks, causing bleeding in the brain.

Hemorrhagic stroke can most often be traced to high blood pressure, but it may also be caused by an aneurysm. This is when a weakened portion of a blood vessel balloons out, ruptures, and causes bleeding in the brain.

Another possible cause is an arteriovenous malformation, or AVM, a group of malformed blood vessels that can rupture, again resulting in bleeding in the brain.

The buildup of the protein amyloid inside the arteries is also a common cause of hemorrhagic stroke, especially in older individuals.

Strokes: A Word About TIAs

A transient ischemic attack (TIA) is a so-called pre-stroke, or a warning sign of an impending serious stroke that could cause damage. A TIA is minor, generally does no damage, and is usually caused by a blood clot. A TIA does produce temporary stroke symptoms that then subside. But a TIA means you should get checked out immediately by your doctor or in a hospital emergency department, and start making changes to prevent a more serious stroke.

Stroke: Understanding the Similarities

Although the two types of stroke occur differently, the risk factors and outcomes are often the same.

People who are at greater risk for developing blood clots, including women who take birth control pills, are over age 35, and smoke, are at a greater risk of ischemic stroke.

And some health habits and conditions that increase the risk of bleeding in the brain — including drinking too much alcohol or abusing drugs, having a bleeding condition (such as hemophilia or thrombocytopenia) or suffering a head injury — may up your risk of having a hemorrhagic stroke.

And keep in mind that smoking, obesity, and poor diet, along with health conditions such as heart disease, diabetes, high blood pressure, and high cholesterol, all contribute to your overall stroke risk.


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