A Home for Daisy Duck! ...Daisy, please post here...

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

A Home for Daisy Duck! ...Daisy, please post here...

Postby cheerleader » Sun Jul 05, 2009 8:50 am

Dear Daisy....
We all welcome you! Could you please respond to this post, that way we can have your information in one place, and you can take any questions the gang might ask. I'll add your previous posts here for you:


Posted: Sun Jul 05, 2009 11:24 am Post subject:
Hi: I have tried to post but am not too bright about this kind of thing. But I saw what you wrote about going to Stanford in August, and I want to let you know that I had surgery June 17 at Stanford by Dr. Dake, et al.
He put a stent into four veins: left jugular, right and left subclavian and zsygos veins. I had no pain after the procedure but just a tiny bit of discomfort (not even but just where I noticed something slightly pressing in my left jugular).
Since then I have had the following improvements: near absence of muscle pain in the calves; no more discolouration in hands and feet; no more huge headaches I used to attribute to sinus but that was in error. Hands much less shakey, and a couple of days ago I went into our pool and afterwards lay in the sun for one hour, AND NO MORE HEAT INTOLERANCE.
Now I am not saying that these things would happen to you after surgery, but I am saying that having had this disease for nearly 30 years, I saw those benefits.
The medical/surgical staff at Stanford is absolutely stellar. But if you are told this is will be out-patient procedure, count on spending one night at Stanfor hospital, at least, as I have had to as my surgery ended up being 4.5 hours.
I decided to undergo this procedure because, as a practical matter, there is really nothing else out there to help, and I am not a big proponent of the various medications that "mitigate" but not a lot. So good luck. Daisyduck



To Marie:
Hi, Marie: As I said I've had this thing for around 30 years. I had an almost "violent" onset, but a year or two after becoming symptomatic I went to Florida, Cocoa Beach, to be treated with snake venom and became asymptomatic for probably 15 years after that, continuing with home injections. But the FDA interfered with Miami Sepentarium's providing venom for this purpose, and the medicine went south to Mexico where it disappeared eventually around the time of live cells and eventually stem cells.
I am still on my feet and use a cane to ambulate, but Dr. Dake strongly advised me to somehow get a "trainer" (can't afford) so I can get off the cane as using one help wekens your body. Instead I am exercising on my stationary bike as many 5-minutes sessions a day as I can handle and have time and inclination for. I also have a balloon tied together (without air) and slip it around my ankles and pull one foot out, turn the ankle, to the side and back, and then the other. I think I was not looking for a miracle but wanted to see if the disease process could be stopped or at least slowed, and I am greatful for the results. I think I had RR MS, but by now it has become slow progressive. I wish you the best. You will be surprised to see just how many of your veins look like they're angelhair pasta instead of quarter inch vessels full of blood. And it's apparently mostle those same veins I mentioned bevore. I would be interested in knowin what Zamboni has with regard to the thoyroid glands, veins in it and MS. Has anyone actually read up on it yet? Alos, Marie, I did not get how to answer and be on the right forum and hope you get this. Best regards, Daisy


My question is, How did you hear about Dr. Dake and the stent treatment for CCSVI? Just click on the "post reply" button below, and you're all set.
Looking forward to hearing more about how you're doing, and a big TIMS welcome!!!!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Daisyduck » Sun Jul 05, 2009 12:32 pm

You People Are Beautiful!! I saw my own thread created by you for me, and thank you.
I was given this information by a friend from Utah who got it from a friend from Australia, both also have MS. I "sat" on it awhile because it did not sink in, I mean the connection until my husband and a dear friend read the science behind this process as per Dr. Frans Schelling and Dr. Zamboni.
I think this site is full of good information and warm people. So thank you again. What else, if anything, can I tell you? The MRV lasts 2 hours and the second half is with contrast dye so drink a lot of water afterwards for a while. What I did not know in advance was that I would have to stay in the hospital overnight, and they almost did not let me go the next day because the vein in the groin through which they pushed the stents up was still open and oozing and began to bleed again during the flight from San Jose to San Diego to where my jeans around the belly and hip were red and I had to cover myself with a newspaper so no one would see it. We got the bleeding to stop once home by lying flat overnight, and this is our fault for insisting we had to leave. So if you can allow extra time or buy tickets that can be exchanged or have a letter pretyped for Dr. Dake to sign for the ailines. We havetwo German Shpeherds which each had to go to friends' houses, and we have several rescue cats so someone also came here to look after them.
Also you will be put on Clavix and Coumadin for two months until you go back to Stanford to be rechecked through the same testing procedures. This is done so you won't form clots, and Dr. Dake said that one's system gets accustomed to the stents as they are slowly covered with a blood substance and "incorporated" by your body.
Oh, if you go, it's probably a little cheaper and closer to the hospital to stay in Menlo Park and not Palo Alto. Also, there is a restaurant at the Town and Country Shopping Center on the main drag, El Camino, called the Mayfield Cafe and Bakery with wonderful food. I had the best mussles, and did not share! I live in a small town in the County of San Diego, and here good restaurants are "not us."
Finally, I email Dr. Dake daily as promised, and he sends an acknowledgement. Today he told me he was "proud" of me for beginning to exercise more. He made me feel about 6 years old in a good way. What a guy. Daisyduck
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Postby peekaboo » Sun Jul 05, 2009 12:48 pm

Dr D is fantastic and I email when there is news at his insistance :) It is amazing how word of mouth can be an asset to spreading the word...
The science behind it all is just so common sense and legimate that others cannot understand the simplicity of it all. Go figure? And here i go i want to bash the pharma industry for not caring and for hiding such info from the rest of the world. :evil:

Once again thanks for sharing and w/ all your contacts, I believe that TIMS (thisisms.com) had something to do /w it. There are no boundaries w/ the internet.

From one stent eer to another...heal quickly and spread the word!

Holly
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Postby mrhodes40 » Sun Jul 05, 2009 1:25 pm

Great Daisy thanks for writing your information out for us! I had bleeding too. My bleeding went inside too as well as outside so I had a hematoma in my stomach muscles and I even stayed at the Sheraton for 2 days (use the internet deals) after I got out of the hospital.

I highly recommend planning to rest as well....we took our dog with us, the Sheraton allows them! so we were free to stay. Room service is painfully expensive but safeway is right down the street.

It sounds like you are doing well Daisy! So glad you joined us here and found us!

My husband is an engineer and he absolutely went for this too when he heard of it as far as seeing it makes sense. Glad to know yours was all in for it too that helps a lot..
marie
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 Islandgirl » Sun Jul 05, 2009 6:08 pm

Hello Daisyduck, I am a newby too. Welcome to TIMS. This is a wonderful site. I go tomorrow Stanford tomorrow and may have surgery weds. Your info has convinced me to rest. I am kind of a wild woman and I would get up and start moving asap but you have convinced me to lay low and assess. Thanks Islandgirl
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Postby Daisyduck » Sun Jul 05, 2009 7:01 pm

To Island Girl:
I am glad you are going, and you will be glad you went. The treatment is wonderful. You'll be awake but "out of it," in fact I told the docs that whatever they were using beat sipping a vodka/tonic! :) There was a surgical nurse, I think his name was Jeff, who was the best. If he is there you will be well served.
Oh, today we had to attend an afternoon function, and I actually walked back and forth through the room saying hello to people instead of walking in on my cane and staying seated. I mean it took an effort but was do-able, and I did it. Goodl uck. You will belad you did this. How long has the awful dragon been with you? Daisyduck
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Postby MaggieMae » Fri Jul 31, 2009 7:31 am

Daisyduck,

Haven't heard anything on how you are doing lately. You were going back to Stanford for a checkup? Just curious since my husband has had MS for 35 years and we are looking into this procedure. Any changes? Improvements?
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Postby Daisyduck » Fri Jul 31, 2009 8:52 pm

Hey Maggie Mae and all you other cool cats: And you really are. Thank you for including me.
I am doing well. My husband and I will be back at Stanford the third week of August for tests. I am sorry, Cheerleader, that Jeff's stent moved. did it, or what happened to it and him?
This disease has been with me a long time, since the 80s. I soon after dx began to develop an "attitude," that being that there was little point in seeing a neurologist so we could have a conversation something like this: "why you here?" "I got MS." Yeah, you certainly do. Pay the cashier on your way out"... (well something like that.)
In 1982 I saw a 60 Minute segment on a combo snake venom called Proven that was being administered in Cocoa Beach, Fla, by two fabulous treating docs. I flew to Florida, spent about 10 days there and was tought how to self-inject subcutaneously with great success. I was on that drug for nearly 8 years once a week during which time I looked normal and operated normally except I could not jog anymore although I still had unlimited ability to walk.
The FDA being pushed by the MS foundation, to my knowledge, closed down the venom production at the Miami Serpentarium on the grounds that the labs were dirty, and thereafter the drug went south to Mexico where it eventually disappeared. This was in the mid-90s. I know I felt symptomatology again around 1996 in my right ankle as it got weaker. I don't know if anyone is really interested in this, but all I want to say I was always pro-active in avoiding what was conventionally avavilable because of side effects and kept searching for something better.
In answer to your question of having had this thing for a long long time, yes, I have.
I told you what my positive physical reactions were after the surgery. I was lucky to not have had any pain during or after. surgery and "fell in love" with the OR nurse whose name may have been Jeff, also. I am now six weeks post surgery, and I can amend some of the things I said before with regard to benefits to myself as a result of stent placements.
The following improvements are still with me: complete loss of heat intolerance; normal colour of hands and feet (no more reddish colour), headaches, if any, are very light and occasional as opposed to almost constant nausiating waves of pain; some neck pain still from time to time, but much improved; gained some strength in the legs, improving with exercise; MS rash was on my belly but has disappeared; voice was always hoarse from post nasal drip and has improved to where it's louder and stronger now; used to get sores inside my nostrils from post nasal drip. Gone. My balance is still not that good, and I am hoping as I gain strength in the legs, that will improve, as well. I think that's it, but maybe not. I will beinterested in what happensto you.
Dr. Dake had told me at the time that I may not have increased ambulation. I walk with a cane outside the house. During the two weeks right after surgery I had a lot of great responses and walked better. The walking, though, went back to where it had been before surgery about three weeks after surgery. But did it really? I have now increased my prior marginal exercise program by as much as I can take. Today I easily did ten minutes on the bike, and my husband helps me exercise in the pool. I step up and down the steps into the pool, etc, until I get really tired. Last night I had real muscle soreness in the calves, what a joy. Dr. Dake said to exercise and exercise some more, and he is looking at us "oldtimers" to prove a point so we must not let him down, Maggie Mae. So have you had enough of me yet ? Me too. Best to you all, and thanks to all of you, Daisyduck
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Postby Jamie » Sat Aug 01, 2009 7:23 am

We could never get tired of you daisy!
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Postby MaggieMae » Mon Aug 03, 2009 5:53 am

Thank you Daisy for updating and am wishing you continued healing.
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