Waiting To Hear

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

Waiting To Hear

Postby coach » Thu Jul 02, 2009 11:07 am

Alex from Dr. Dake's called me yesterday and needed insurance informatioin which I gave her as well as faxing a copy of my card. Have a tentative date of August 4. We will see what they say. Having some mixed emotions that I'm guessing others that have chosen this route have experienced as well. From the research that others (Marie, Cheer, etc.) have been so kind to share, CCSVI looks so logical and it certainly has captured a lot of attention. My personal thanks to those that have shared. I'm not sure others have briefly shared their thought processes of having arrived at the decision to get testing and if indicated by test results, intervention. So far it appears that those that have had testing at Stanford have also had intervention. I don't expect the result to be any different for those up next (Mark and Lew come to mind) and this community anxiously awaits to hear about their experience and wishes them all the best.

Just wondering if those that have sought the testing and intervention would mind sharing a little of their thought process of having arrived at their conclusion. Guess I'm just looking for affirmation that I'm not totally off base, illogical, or irrational. I don't think I am. I do know that repairing venous stenosis may or may not improve one's MS but there have been some encouraging signs that this is a step in the right direction. But I also understand that doing nothing is really not an option either.
Am I nervous? Yes, but at the same time excited. Feel like I have a split-personality about it. The least I hope to achieve is slowed progression. Repair and regaining some lost abilities would be a bonus. Improved heat tolerance, better stamina and energy would be a bonus too. Just feeling very vulnerable and maybe most of us that consider themselves to be of the CF (control freak) variety find this to be a feeling that is not comfortable and that we don't like. I may just be speaking for myself.
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Postby cheerleader » Thu Jul 02, 2009 11:23 am

Here's what Jeff said, coach....

I remember on the flight up to Stanford for my MRI/MRV tests, my wife and I joked that I would probably be the ONE ms person with absolutely perfect veins - our expectations were low, but we were hopeful there might be some answers and possible solutions.

There were 2 things that convinced me almost immediately to go forward with my stent surgery later that day. Sitting in Dr. Dake's office we could so clearly see what were very damaged jugulars - the right constricted, and the left, basically a tangled mess! Here I was, staring at something so obviously broken in my anatomy - the veins draining my brian - but unlike those boatload of MS lesions in my head, we could actually DO something about this, as Dr. Dake said 'I can fix that' - wow.. something we don't often get to hear from our neurologists.

Another confidence booster for me was Dr. Dake himself. He was truly excited, compassionate, completely interested in my precise case history, and inquisitive about progress in the best possible way. And, fresh form a visit with Dr. Zamboni in London - he had a lot of conviction and confidence that this might be a key to helping us. All three of us were so surprised to see such a clear example of yet another ms case with irregular veins on our 1st try.

I knew there were risks, but these were realtively very small- the risk/reward ratio felt in my favor: in the possibly of bringing symptom relief or even reversing the course of my ms was too good to pass up. At the very least - something clearly anatomically wrong could be improved.


Just talked to Jeff, he's at our house up north (I fly up in a couple hours)- in 90 deg. heat for hours, doing yardwork, whacking weeds, hiking our property. He just couldn't have done that before the stent procedure...he can't believe how much better he feels. We'll know more Monday about his actual lesion healing...and by August, we'll know even more.

It's OK to be cautious and wait, coach. This research isn't going away. My hubby's a bit of a rugged individual (he actually likes Ayn Rand....ugh!), and he recognized a kindred spirit in Dr. Dake. And he trusted him and God.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Arcee » Thu Jul 02, 2009 12:33 pm

Coach, my appointment at Stanford is the day after Lew, and I actually think that results, i.e. a stent intervention, may be different for me. As I have posted previously, my current symptoms and EDSS are minimal, although I do have a fair number of lesions. So I am going because I am really curious to see what Dr. Dake finds - - both for me personally and because I think it is important for the overall research.
Will anything substantial show up? Should something be done on someone in my condition? I think reasonable people disagree about the answer to that latter question.

Every source indicates that Dr. Dake is the guy to do this. So from my perspective, since I am able to make this trip happen, and my neuro and PCP think it's really intriguing, there's no harm in finding out what is going on. As one of my friends said to me 'you have to go. this is the kind of thing you will regret not knowing about.' She is right about that for me. But I can totally see why it's not the right choice at this point in time for other people.

As to what happens after we know, an intervention, well, that is what I wonder about and try to prepare for. I will certainly post the feedback as soon as I can, and I also have arranged with Cheer to have her post if all I can do is send an email update.

I hope these comments help as you think about things. Feel free to PM me if you'd like to dive in further.
- Randi
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Postby chrishasms » Thu Jul 02, 2009 1:01 pm

123
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Echo

Postby mormiles » Fri Jul 03, 2009 6:40 am

Chris, That's my biggest fear too. Monday after next, my husband Steve has an appointment with the neurotologist who prescribes the Vanderbilt protocol for him. I've e-mailed him a couple of times in the past few weeks "warning" him that we would be discussing CCSVI and that we'd be looking for a referral to Dr. Dake. I've already composed a letter to Steve's internist to give her a heads-up about the after-care he will need. The intervention needs to happen this year...before Dr. Dake is done with his study, before a new insurance year, before we lose Cobra, before the healthcare industry gets whacked by "reform." I'm trying to keep a lid on my feelings, but the urgency, excitement, and fear are making me manic!
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby chrishasms » Fri Jul 03, 2009 7:29 am

123
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Postby coach » Fri Jul 03, 2009 8:28 am

While on the surface the Obama healthcare plan may sound like a good thing, my fear is that it will lead to healthcare rationing. I agree that the healthcare insurance needs some reform but I think that it does need some real thought and not reform that is done quickly with little thought about unintended consequences. By the way my husband is self employed and I do some data entry for him. I have a policy whose monthly premiums are $1000 a month. He has a separate policy with monthly premiums around $500 /month. Our deductable is $1500 per person covered by the policy per calendar year. It bugs me with the false argument that insurance companies use against small businesses about them not belonging to a big enough group to spread risk thereby justifying a higher charge to those customers. How about the larger group of all that have that particular insurance? I am thankful for the insurance and that so far God has provided for us to be able to pay for it. I've been wondering if the smarter thing might be to go to a catostrophic policy and set up a health savings account. Looking at appplying for disability down the road but because of another issue we are dealing with that involves my daughter, I'm a little hesitant to do that right now and jeopardize her coverage by the insurance. There's one part of me that really is resistant to applying for disability, but is probably something I need to seriously consider.
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Postby mrhodes40 » Fri Jul 03, 2009 8:35 am

Randi said
So from my perspective, since I am able to make this trip happen, and my neuro and PCP think it's really intriguing, there's no harm in finding out what is going on. As one of my friends said to me 'you have to go. this is the kind of thing you will regret not knowing about.' She is right about that for me. But I can totally see why it's not the right choice at this point in time for other people


I see that you may or may not get intervention as you see it, man! I think that is smart. You can just see what you can see, no comittment ahead of time. It will still add to Dr Dakes body of knowledge and give you more to know and think about

I went with that attitude too, although because I had no other options I was hoping that they find something so I could do something about my disease process that had been written off by the neuro as untreatable, but if it had been minimal I was prepared to do nothing until more was known about this.

It is surgery. It is permanent. It requires lifelong monitoring.
A person could have a *rare* complication like the stent could move or even migrate to somewhere else altogether like to the heart, or it could clot off and you'd need to repair it...

None of these are at all onerous if it helps, for example many of our elderly people live with this now, stents are common and have been out for years now. If it stops your disease, who cares it takes some work and intervention?

I would guess that a person who took novantrone and got heart damage is pretty d&*%^d involved in their follow up care too....and their MS did not go away with that drug, this is a known fact, it only may slow a little..

so to me the possibility of even a bad complication is not unlike the options that might be available to people otherwise and the very rare complication is less troublesome than what may happen with other MS drugs (PML? Heart damage? pretty bad even if rare A migrating stent is fixable). I am not even offered novantrone though--no inflammation--so I had nothing but progression to look forward to.

The fly in the ointment of course is that we don't know if it will help to treat.

If Ms is not cause by CCSVI and it is just a side effect of some kind, then how would it be bad to treat it? I suppose if you had a side effect or complication from surgery AND it did not help that would be bad...

But that seems pretty far fetched in my mind that improving circulation could possibly hurt your disease when the vessels impacted are the very ones that have damage in MS . That is just logic not medical advice of course.

When you talk to Dr Dake about the possibility of treating be sure and find out what the ins and outs of it are, what are the dangers and possibilities.... then weigh that in light of the known facts. I suspect your decision will be easy.
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 Lyon » Fri Jul 03, 2009 8:52 am

..
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Postby mrhodes40 » Fri Jul 03, 2009 12:08 pm

efficacy can't be judged only by miraculous symptom relief or lack thereof because some symptoms are caused by inflammation and some symptoms are caused by damage to myelin and axons which aren't capable of showing quick improvement


I totally agree.

Are these venous stenosis really causing situations in which the blood doesn't meaningfully circulate


In my case the answer is yes because I was treated with stents and the venogram they did in the OR proved that the stenosis being opened with a stent caused all the collateral veins to collapse, and the circulation then went through the repaired jugulars with no need to call in any of the collateral veins... that is proof.
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 Arcee » Fri Jul 03, 2009 2:02 pm

"When you talk to Dr Dake about the possibility of treating be sure and find out what the ins and outs of it are, what are the dangers and possibilities.... then weigh that in light of the known facts. I suspect your decision will be easy."

Yes, it will be a fascinating and important conversation! And I am very pleased that Dr. Dake is the doctor with whom I will be having it. After reading your post, Marie, I am starting to think that it may be a fairly easy decision after all. Thanks.
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Postby mrhodes40 » Fri Jul 03, 2009 3:38 pm

You're welcome :D

be sure and make notes and share what he says with the rest of us too!
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 Daisyduck » Sat Jul 04, 2009 6:24 pm

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
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Postby IHateMS » Sat Jul 04, 2009 6:56 pm

welcome. great news :) :)
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Postby mrhodes40 » Sat Jul 04, 2009 9:11 pm

Hi Daisy, :D
getting used to a forum is not as easy as it looks, you did well!

thank you so much for being here and sharing your story with us. Wow 4 sites of stents! 8O I wonder if that is a record for Dr Dake?
I have no heat intolerance either, and my spasms seem to be lessening somewhat.

I don't mean to pry but if you are comfortable sharing more about your MS what type do you have? how able bodied are you? Just curious. You had a lot of blockage! Just wondering if your type was progressive in some way because of the extensive blockages.

If you can do so, consider putting an entry in the CCSVI patients log thread ... that thread is supposed to be a simple list of people who've gone to Stanford getting surgery experiences so other people can read it, the first post explains how we hope you format your entry... but you'lll notice no one is too rigid about following that! :lol:

Welcome and thank you so much for being here!
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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