CCSVI skeptics

Loobie · Post by **Loobie** » Thu Jun 04, 2009 3:14 pm

I like the way you're thinking!!

akaheather · Post by **akaheather** » Thu Jun 04, 2009 3:22 pm

Wasn't sure which thread to post this under, but here it goes...

While at the doctors office today getting my Tysabri infusion I thought I'd ask my nurses if they had ever heard of CCSVI. They had not. It did however stir up quite a conversation between the patients and the nurses. I don't want to put words in their mouths, but they did seem genuinely excited.

We discussed several of the nuances of MS and how they might relate to CCSVI and we "checked"them off one by one. It was so exciting to talk to some real life people (as opposed to my TIMS network) who actually sounded like they thought this could be something. Direct quote "This really does make sense."

One of the nurses even called in a 3rd nurse and asked me to tell her about the study. Soon after she called in a 4th nurse and I repeated our story to her as well.

I decided to tell this story under the skepticism thread because of the reaction of the last two nurses. The last of which began our discussion with a brash "I've never heard of this study" and concluded our brief (2 minutes or less dicussion by saying (and although I am quoting please keep in mind that this is from my MS brain's memory),

"What is it you want?",

"Excuse me?" ,

"What is it you want? An MRV? "

"Well... yes"

"There is NO way that Dr. _____ is going to give you an MRV."

"Okay, then who could?"

"I don't know.. maybe a Cardiovascular (something), but there is no way Dr. _______ would do it. I mean... he might, but I doubt it and I doubt they would let you get it on your own."

"You mean pay for it myself?"

"Yes, I doubt anyone would do it for you because there is no medical reason for it"

"You mean aside from the fact that I have MS"

(I'm kidding I didn't say that last part, but I WAS thinking it."

)

Ouch , it was UNcomfortable. At first I was a little embarrassed, but the more I thought about it, I was actually pretty pissed. I have no idea why I got the response I did. I felt attacked and it shook me up a little bit.

Anyway, I am not totally ruling this clinic out because,despite the last nurse's opinion, I still have not heard Dr. ____'s opinion. And, I DO believe that this Dr. will look into this and make an informed, well thought out,` assessment. (I hope.

) If that doesn't work then I'm not sure what I'll do next . PCP? Cardiovascular (something)? Stanford?

PS. Some of you may remember a post I made a while back in which I said that I had faxed a copy of Zamboni's paper to my neuro. Almost 2 weeks later and still no response. I am wondering if he a. threw it away b. lost it c. has been looking into it. I hope it's C.

PSS. My infusion nurses are very sweet. They may be looking into this post and I just wanted to give them a shout out. They are sweet and they make coming to get our meds as enjoyable as possible. You guys rock!!

Loobie · Post by **Loobie** » Thu Jun 04, 2009 3:30 pm

I feel the same way about my infusion nurse. He's a lurker on here too.

akaheather · Post by **akaheather** » Thu Jun 04, 2009 5:52 pm

I guess I shouldn't be too shocked at the responses some of us have been getting. This is a huge paradigm shift.

Initially, I thought consulting my neuro was the best thing to do. Now, I'm just starting to wonder if consulting my neuro isn't a conflict of interests. If the neurological side of MS is an effect of CCVSI, maybe I should go staight to the source and go see someone vascular.

I have to admit, I'm a little nervous about going to California. The idea of a diagnosis one day and surgery the next seems .... quick.

Yikes. I've got alot of work to do.

notasperfectasyou · Post by **notasperfectasyou** » Thu Jun 04, 2009 5:55 pm

I can just about promise you, this will run out like ABX and the neuro is the last person you're going to get support from. I hope I'm wrong. Ken

chrishasms · Post by **chrishasms** » Thu Jun 04, 2009 6:05 pm

mrhodes40 · Post by **mrhodes40** » Thu Jun 04, 2009 6:06 pm

did seem genuinely excited....snip....does make sense

I've had that response from many people as well..... as well as the skeptical "no medical reason for it".

Technically it is true, medical reason has to do with standards of practice and doing things already accepted by the various medical bodies as necessary and supported. This CCSVi case is not yet generally accepted so not deemed medically necessary yet for neurology.

Doctors are ACTIVELY discouraged from thinking for themselves, actively discouraged from stepping back and looking at the patient and treating them as they see fit based on their personal opinion of what might be going on. They are encouraged to allow the "medical machine" to evaluate and decide for them what is good practice, what theories are acceptable and conversely which quacky, and which treatments are OK to impose on lay people who do not know any better.

There is a good side to this, it makes medicine less expensive if we do not test everyone for everything they can think of, and desperate patients may want things that are unreasonable given their diagnosis. "WE", that nebulous greater society that is somehow floating our collective medical boats, can't afford to test everyone for every thing.

This model of medicine removes from the physician to responsibility to start from scratch with every patient once a diagnosis is known, after that time certain things are approved and considered good by general consensus others considered wasteful or even dangerous.

One of the ironies is that someone like my neuro is doing standard practice when he notes my lack of inflammation on MRI then states confidently that based on studies tysabri can not help me.... then 5 minutes later offers that if my MS should seem to slip I should come right in and we'll start tysabri anyway on the "off chance" it might help. You tell me: why is that 45,000 dollar off chance smart and this CCSVI idea bad????

only one reason for the discrepency: the neuro community is on board with the tysabri thing and they are happy to endorse its use even in cases where it is scientifically not expected to help. Such a use for tysabri is considered compassionate, making the case that 'everything' was tried

unfortunately the side effect profile makes this kind of compassion suspect, particularly considering that the charge leveled at something like CCSVI is that is has consequences.

Note that Dr Dake is evaluating people who have headaches. This circumvents that issue. He is also getting compensated for it via regular insurance and in Holly's case medicare. It is not outside standard to test for vascular headaches this way apparently. Makes you lucky to have headaches!!

A cardiovascular doctor that might be an interventional radiologist is similar in background to Dr Dake so maybe the suggestion of Dr ________ was worth a follow up?

thanks for sharing the conversation it is enlightening Heather

patientx · Post by **patientx** » Thu Jun 04, 2009 6:12 pm

chrishasms wrote: There are only two treatments out there right now that are guaranteed, not by doctors but by the people who have done it, to get you something back. These are the only wo things really being discussed anymore on TIMS because we are a very proactive group.

Which two treatments?

chrishasms · Post by **chrishasms** » Thu Jun 04, 2009 7:47 pm

peekaboo · Post by **peekaboo** » Fri Jun 05, 2009 10:14 am

While in consult w/ Dr Dake, my sister asked if a clinical trial will be forth coming? Dr D's eyes bugged out and said Not for a long while this is too radical...the ms/neuro community is not ready & much more legit info will be needed where there will be little room for doubt. i believe this is dr. d's mission & if "the sacrid community" wont listen ...maybe cardio will.

H

cheerleader · Post by **cheerleader** » Fri Jun 05, 2009 10:39 am

peekaboo wrote:While in consult w/ Dr Dake, my sister asked if a clinical trial will be forth coming? Dr D's eyes bugged out and said Not for a long while this is too radical...the ms/neuro community is not ready & much more legit info will be needed where there will be little room for doubt. i believe this is dr. d's mission & if "the sacrid community" wont listen ...maybe cardio will.

H

Holly's right. Dr. Dake is fixing something that is broken in people. Major veins should be open. He understands, as a vascular doctor, how venous congestion creates myelopathy. You can call it MS (I now believe MS is just the result of venous congestion and myelopathy) but Dr. Dake isn't treating MS. He is treating CCSVI. The fact that this shows up in every MS patient that is tested will not change mainstream neurology's standards of practice...not for a while. But if an MS patient has a headache or edema, and consults with a cardio-thoracic doctor, and is found to have venous insufficiency, s/he has every right to be treated.
cheer

Loobie · Post by **Loobie** » Sat Jun 06, 2009 4:26 am

cheerleader wrote:But if an MS patient has a headache or edema, and consults with a cardio-thoracic doctor, and is found to have venous insufficiency, s/he has every right to be treated.
cheer

And that's the story we need to stick to if we are not to be on the hook for some serious jackson. So right Cheer. That's what I keep tellilng people. Don't look at this as "MS fixing surgery". There're blocked veins, they shouldn't be blocked. He is opening them. It helps with what we call MS, then great but you're right, it's an intervention to fix plumbing that's not functioning as it should. Goes back to the whole "specialist" mentality that I abhor so much as it has Dr.'s prescribing things for your bladder that make other things worse and so on and so forth. We ARE a symbiotic system, not a series of systems that work independant of each other.

CureOrBust · Post by **CureOrBust** » Sun Jun 07, 2009 5:18 pm

chrishasms wrote:There are only two treatments out there right now that are guaranteed, not by doctors but by the people who have done it, to get you something back. These are the only wo things really being discussed anymore on TIMS because we are a very proactive group.

Revimmune and CCVI treatment.

Do not forget or underestimate Campath.

cheerleader · Post by **cheerleader** » Sun Jun 07, 2009 6:09 pm

It's just really too soon to make statements regarding efficacy in CCSVI stent treatment. We have no idea if it will halt disease progression, allow for lesion healing or be "the" answer. All we know for sure is that 100% of MS patients tested have blockage in the veins that descend from the brain and spine, and that repairing these veins has helped remit fatigue, helped those with temperature issues, and helped cognition issues. We'll know more in the months ahead.

The thing that is different about treatment for CCSVI is that it addresses a mechanical problem in the MS body, and fixes it. When this is done for patients with DAVFs, and their veins no longer reflux and leak, their demyelinated lesions heal.

We can tamp down inflammation in early MS patients (with campath, steroids, etc), but that does not seem to help progressive patients, or those without inflammation. Marie didn't have inflammation, she had no remaining options...and she had blocked jugular veins. Now we'll see how repairing venous congestion affects an MS patient...but we have to be patient before making broad statements...
cheer