Good News

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

Good News

Postby Katie41 » Fri Dec 18, 2009 2:37 am

Wow! You all have been busy while I was gone.....So great to read the continued explosion of info, inquiries, and media.

Just returned from roundtrip in two days to Stanford from Southern CA. It's 1:20 a.m. so I may not make much sense, but, I'm excited to tell you I have two collapsed jugs and one being severely impinged upon by the friendly carotid on the left side, and one high and one low collapsed on the right side. Sorry I'm not being more technical, but that will have to wait until I get some sleep!

Dr. Dake is a doll! Well, not a doll, but a wonderfully caring, open, thorough, logical doctor. He said that 10 or 11 of us will be called or e-mailed in the middle of Jan. to update us re when our surgery will take place. He still doesn't know exactly when that will be, but he is sure that it WILL be. What mainstream doctor takes the time he's taking with each person who goes to Stanford for testing?! Amazing!

How lovely Alex is! So glad we got a chance to meet her, too. She works so hard for all of us.

Thanks again to all who have posted. All of your info: where to stay, descriptions about the testing, questions to ask Dr. Dake, and a myriad of other things helped so much.

Looking forward to middle of Jan.
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Postby Johnson » Fri Dec 18, 2009 3:03 am

Aw, come on Katie. That's not good news. That is fantastic news!

I am so glad that you have messed up jugulars, and that you will undergo an unapproved, invasive surgery for an unrecognized pathology! Happy Christmas!

Isn't that funny, how I can be so over-joyed at others being diagnosed with what really, is a pretty serious problem. Er, sorry Miss, the bad news is that you have suffered some brain injury due to an heretofore unrecognized condition. The good news is that it is fairly easy to rectify. You will be right as rain soon enough.
My name is not really Johnson. MSed up since 1993
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Postby thisisalex » Fri Dec 18, 2009 3:49 am

:D :D :D

Johnson wrote:
I am so glad that you have messed up jugulars, and that you will undergo an unapproved, invasive surgery for an unrecognized pathology! Happy Christmas!

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Postby ozarkcanoer » Fri Dec 18, 2009 7:52 am

I am also glad that your jugulars are messed up. That means they can be and will be fixed. My greatest fear is that when I get scanned there will be nothing found. But I gotta have hope.

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Postby Sharon » Fri Dec 18, 2009 8:04 am

Woo, hoo Katie! :D :D Hope Dake is able to get going in January for all of you who have just been tested.

OC --- we could start a prayer chain for you :wink: (i.e. squished juggulars for OC) I bet you have nothing to worry about.

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Postby MS_mama » Fri Dec 18, 2009 9:40 am

good for you that they found something wrong! So when you are called back, will it be part of the clinical trial or under your insurance?
dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />
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Postby msh » Fri Dec 18, 2009 10:13 am

Hi everyone,
I am new to this-I am a nurse and close friends of mine on both coasts have MS. Is Dr. Dake just making appts for anyone who calls or is there a long waiting list and you have to be approved for the studies. Same question for Dr. Haacke and Buffalo, NY.
Does anyone know any facility in New York that is doing the diagnostic protocol? I would think with all their hospitals and expensive equipment they would be on top of it. I live in Florida and can't find a place here either. I just don't understand why they can't all start screening immediately.
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Postby Sharon » Fri Dec 18, 2009 10:55 am

Welcome msh!

Dake will be starting his study in early 2010. Many people had previously been in contact with Dr. Dake, and it is my understanding they will get first shot at being in the study.
Check out Haacke's website for info on his study http://www.ms-mri.com/
Check out Buffalo's website for updates on the application process
http://www.bnac.net/?page_id=517

The diagnostic testing needs trained personnel in the MRI/MRV and Ultrasound protocol. Many facilities are not up to speed on this protocol. Encourage imaging facilities to contact Haacke -- he is activiely seeking collaborators to work with him.

MSH - if you have further questions, use the search function to see if they have been answered previously, or start a new topic with your question. Thanks and again welcome to the site.

Sharon
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Postby Katie41 » Fri Dec 18, 2009 9:56 pm

Welcome msh!

Take time to read the stickies. That will give you a tremendous education in CCSVI in a short period of time. For the time being, I think calling or e-mailing either Boston or Alex (Dr. Dake's scheduling person) at Stanford and asking to be put on the list will at least get you a place in line. Alex will let you know what you need when she gets back to you. Best of luck :)
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I love this post! If you have tumefactive MS, read

Postby reg613 » Sat Dec 19, 2009 6:25 am

Johnson wrote:Aw, come on Katie. That's not good news. That is fantastic news!

I am so glad that you have messed up jugulars, and that you will undergo an unapproved, invasive surgery for an unrecognized pathology! Happy Christmas!

Isn't that funny, how I can be so over-joyed at others being diagnosed with what really, is a pretty serious problem. Er, sorry Miss, the bad news is that you have suffered some brain injury due to an heretofore unrecognized condition. The good news is that it is fairly easy to rectify. You will be right as rain soon enough.


Cynicism is the most powerful weapon in life. This is why it is being strangled out of existence by political correctness, "blessings," prayer chains and the Christian-ite literal mindedness of the typical Susan Boyle fan. Yes, Susan has her uses in the global circus.

Johnson still has what it takes. He'd better not use it in a hospital though. They kill you for it... Some very touchy folks there... primed to punish and persecute you if you appear to be an independent, fun thinker.

Those most in danger are patients suffering from tumefactive MS and who deal with doctors in a witty, affable way. To a doctor from a different culture or humour-set this just screams organ donor and they will actually trap and harm you into stroke and herniation figuring your family is the type who will magnanimoulsy donate organs.

Wit, cynicism, humour, good naturedness all signal a person who according to the stats will say yes to donation. It's true too. People with this adventurous type of personality are generous and often a little careless.

It's changing though. There is a growing number of websites informing people of the facts behind organ donation and how it is routine for hospitals to target specific patients for intentional deterioration or false diagnosis so they can get at their organs.

Those most at risk are of course accident victims, and patients with a 2nd or more tumefactive MS lesion relapse.

They will let you get away with the first one and tell your family "it was almost fatal" so when you get another you are prepared to lose. Read this story: 'First you walk--then you run' in USF Health. The doctor in this story, Stanley Krolczyk seems like quite the slimy operator.

Tumefactive MS (TDD) is a great way to get somebody going neurologically downhill fast. The lesion is big, promising fast high ICP if nothing is done. So they do nothing and soon a big seizure happens, strokes, herniations along with a nice big organ heist to finish you off. (People aren't dead when their organs are cut out. The term "brain death" is a flowery euphemism. Removing your organs kills you, and you will feel the pain and degradation).

Have you ever wondered why the MS Society doesn't include tumefactive MS on its list of MS types? It's because these people die a lot and without inclusion in the MS Society's types, the death can be attributed to "brain mass." It's a horrible sneaky business.

TDD is never fatal. It responds really well to decadron (steroid). It's that people who get it make wonderful candidates for "oh, we're so sorry, we did everything we could... but you know, we could could make good come out of bad by donating his organs...."

What's so sad is that there are many people who having had one TDD, blissfully believe the doctor that their event was monophastic. Never will you find people more in love with their neurologist... They even think they are at the top of the MS pile because there illness is done. Not so. If you are in this category, be careful and read the websites that explain the organ donor hoax.

Most of all, don't be cynical and witty out in the big global world. Reserve that for the privacy of your own home.
reg613
 


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