SHOT DOWN BY MY NEURO

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

SHOT DOWN BY MY NEURO

Postby Needled » Wed Jun 10, 2009 5:37 pm

Wow, faster than a speeding bullet. As some of you have said, be prepared for your neuro to dismiss the idea out of hand, without even reading the material. I sent the December ’08 paper to my PCP. He read it, was cautious but thought it was interesting and wanted me to talk to my neuro. I had my annual checkup with him this week, so I prepared my “speech” and brought the paper. He shut me down, FAST. If he had a door, he would have slammed it in my face and broken my nose. It’s taken me this long to get my mad down to a reasonable level so I could post.
He actually said, "I can think of a 100 different reasons why this theory wouldn't work." And that was only after a 2-minute description of events, and not even looking at the paper!!!!!! I didn't take out the study or the research that relates to it. He wouldn't have looked at it. So he has no idea of what they did and didn't do. He was irritated. He said what needs to be done, if this ever were to proceed, is that they'd have to do a trial on a 1000 patients, then a double-blind trial on another 1000 patients, and all sorts of other different trials, etc. etc. etc. It was almost painful. Just picture a dog with his bone. Honest, I swear he was almost snarly. And he also had the nerve to say he had never, ever heard of CCSVI before. Not even in any of the really obscure journals that come across his desk. So if he doesn't know about it, it doesn't exist? Does he realize how dumb that makes him sound??
Honestly, where in the world does he think these 1,000's of people come from for trials? Doesn't everything have to start somewhere?? And it's not like I'm chasing after every rainbow here. I’ve seen him 4 times in the three+ years since I’ve been diagnosed. I want a non-invasive test to see if my jugulars and/or azygous are blocked. Call me crazy. So when my husband asked how we would go about getting the MRV if we still wanted to proceed, he said we could always go out to Stanford and enroll in the trial. Hah!! Joke’s on him there!!! I didn’t have the heart to tell him it’s not even at the trial stage. He probably would have had a stroke. It was clear 20 seconds after I started that he was annoyed, so I didn’t bother refuting anything since he clearly wasn’t listening. And he was wrong on so very many points. I could go on and on, but I’ll just mention two other things. I asked, “MS aside, how does a healthy body function with only 1 working jugular vein?” His answer was that the body compensates. Sure it does, until it doesn't, and your diagnosed with MS. And he was really turned off by the idea of stents as a fix. That led to a whole other lecture.
Going in, I was just hoping he would say, “Hmm, that sounds interesting. Let me take the paper and read it to see what they’re doing.” I wasn’t asking him to become a believer based on what I had told him. I WANTED his opinion on the research and to check with his contacts on Dr. Dake. But to get there, he’d had to have read it first, now wouldn’t he?? And if he had doubts after he had read it, that’d would have been ok. Not what I would have wanted to hear, but at least it would have been an informed opinion on his part and we could have had a discussion. The funny thing was, up until I brought this up, it was a very pleasant appointment. We talked about taking Copaxone, and he even asked for my chart on the Copaxone price increases and wanted to talk to the TEVA rep about it. That wasn’t even on my agenda, but he was interested in it. I'm sure that paper is now filed away in the circular bin.
So we'll regroup, adjust and decide what to do next. One of the first things is looking for a new neuro. Now that’s something I definitely wasn’t planning on coming away with. Sorry about the long post, but I had to get it out –it’s 3 days later and I’m still fuming!
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Postby javaneen » Wed Jun 10, 2009 5:53 pm

Hi Needled, Sorry to hear about your awful neuro appt. You should definitly look for a new neuro. I can't believe that he didn't even look at the research. I am also from CT. I PMed you recently. My neuro is supposivly the "best" in the state but I do not have confidence in him to do what is in the best interstet of his patients. My throat closed after taking a copaxone injection and he never returned my call., My allergist did right away, again later on that day and several days later he called me to check on me. He was furious that my neuro still hasn't returned any of my phone calls or emails. Then I told him who I see and he told me not to switch because he is the absolute "best" in the tristate area. So he is still my neuro but I am not comfortable telling him about CCSVI espcially since the only thing he does as a neuro is see MS patients. So he would be out of a job if this pans out and I am sure he wouldn't be very happy about that.

Good luck looking for a new neuro and dont let what this guy said discourage you.
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Postby cheerleader » Wed Jun 10, 2009 6:00 pm

Oh, needled...
You have a right to be fuming...talk about righteous anger! I wish I could say I'm surprised, but...I'm not. But I am sorry. It's never fun being treated like a moron. Believe me, I know!

We have not even broached the subject again with Jeff's neuro, after trying to bring it up and being told there is no connection to the vascular system and MS. None. Period. The last time we saw her, she had the prescription pad out to write some new scrips for pain medication....and then she made sure Jeff was still taking his copaxone. Maybe he should have an MRI, to see if there was more progression, we could consider tysabri. Jeff said he was fine, no new meds and I'll call you if I need anything else. Goodbye.

Why continue to see a doctor that says, "MS is a progressive disease. We do not know what causes it, we do not know what your future holds....but we can offer you palliative care until you eventually die. There's always a pill for what ails you."

And you have the audacity to go in and say, "Here's a new paradigm! We've never seen it before, but new technology allows us to scan the veins that drain the brain and spine! And guess what? 100% of MS patients have stenosis in these veins! Isn't that exciting!!!"

Some folks are lucky enough to have doctors whose egos will not be threatened by a layperson doing research and compiling information. Most do not. Good luck finding a new neuro...

Perhaps your pcp might help you out? Describe how hostile your neuro was, how affronted by something he didn't even read. You just want an MRV of your veins....you're probably due an MRI soon. Does your testing facility do MRVs as well?
You have the right to see if this is a part of your disease...it's your body!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Wed Jun 10, 2009 6:29 pm

What unjustified arrogance!! Incredible! You would think they'd all be INTERESTED in this new finding, at least as Dr Kerr was! At the minimum READ the thing....geez

I think this may be appropriate........ maybe the neuro is related to this guy...
http://www.youtube.com/watch?v=XnwyQFe3wRA
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 bestadmom » Wed Jun 10, 2009 7:03 pm

I am sorry for your neuro's rude treatment. I would be fuming too, and would never go back.

Modern medicine is so compartmentalized that a neuro isn't trained to think about anything other than the nervous system. I'm sure your questions freaked him out because if CCSVI is our savior, there's no future in MS treatment for him.

When I move ahead with either a CT scan or MRV, I'm not sharing the info with my neuro until after the procedure, just like if I broke my wrist he wouldn't need to know.

I noticed on another thread that Jacobs Buffalo (where Wobbly went) is recruiting MS patients for a study of CCSVI. I'm calling them tomorrow - Buffalo is an easy inexpensive flight from Conn, which beats going to Stanford. I'm considering that too.
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Postby notasperfectasyou » Wed Jun 10, 2009 7:07 pm

Needled,
I'm sorry you had to go through this experience. Moreso sorry that your doctor might not ever get the information he could use to help so many more. I am not at all surprised, I have sat in the neurologists office and been completely dismissed, there are several here who know that feeling.

It's an odd doc that will stray from what generally accepted medical practice dictates. The doctor who sees you is kinda like the accountant who does your taxes. There's a well established historically accepted way to do it and they're going to follow those rules and apply them to your situation. The IRS looms in the background ready to stiffle creativity. So your front-line accountant and doctor is providing what they have been given to offer and they really are not comfortable trying to take the prepackaged info they get and rework it into something new.

In the fastfood restaurant of life, if you want your burger without pickles, don't argue with the cashier, find the manager. Find the folks who are making the decisions and have the wherewithall to give you an open minded listen. I promise you, I know what it's like to go from doctor to doctor with a handful of paper, "won't you read this and write me a presciption for this thing, please?"

Politely let your doctor know that you disagree, you want him/her to continue being your doctor, but you understand that they have limitations. You hope they will continue to help you with the things they can help you with, but you want to pursue this other thing too. Find a doctor that we know will play ball and see that one. Kim and I spend half a week on the road, twice a year to see the doctor we found that is happy to write the scripts we need. Sometimes you have to do that.

In sum, the medical profession is largely designed to look at what has happened and finds ways to offer services based on what science has proven. Research is forward looking and what we are asking for here is not time tested and fda approved. It's outside the box and that presents us with a barrier to access. And that's how it comes to be that we will take the kids to the same place AGAIN this summer for a family "road trip". Good Luck, Ken
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Postby peekaboo » Wed Jun 10, 2009 7:16 pm

Hugs as wobbly says STAY STRONG :!: :D
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Postby akaheather » Wed Jun 10, 2009 7:45 pm

is that they'd have to do a trial on a 1000 patients, then a double-blind trial on another 1000 patients


A double-blind trial???? How would that work? What, some would get MRV's and some would just sit in a tube while some monkeys banged on pots and pans?
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Postby Sharon » Wed Jun 10, 2009 8:26 pm

aka wrote
A double-blind trial???? How would that work? What, some would get MRV's and some would just sit in a tube while some monkeys banged on pots and pans?

:lol: :lol: :lol:
That's a good one! Thanks for the laugh.

and to needled.....#1 you deserve to be treated with respect - what a "holier than thou" guy. It is unbelievable that some of these neuros think that we have no right to think on our own. Hopefully, you have been able to settle down a bit. Good luck in your search for a new neuro -maybe the introductory meeting should include the research reports.

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Postby mrhodes40 » Wed Jun 10, 2009 8:37 pm

Well and lets tally up shall we?

First doppler study 89 MSers 60 controls blinded
Second doppler study 109 MSers 177 controls including other neuro diseases, blinded
third study 65MSers 235 controls blinded
liberation 100

the total number of patients who were looked at in these studies was

363MSers and 472 controls=835 people. All MSers showing evidence of CCSVI, and in the case of the third and fourth, stenoses too. The concordance is so astounding one can accept lower numbers too.

That is pretty darn close to the fantastical 1000 people he demands be studied.

it's too bad he did not bother to read the research...........

"Contempt prior to investigation" the sin of the educated person whose arrogance stops them from being the true inqiusotor they ought to be for their field.
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 chrishasms » Wed Jun 10, 2009 9:07 pm

123
Last edited by chrishasms on Sun Dec 06, 2009 12:52 pm, edited 1 time in total.
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Postby whyRwehere » Thu Jun 11, 2009 12:15 am

Sounds like my husband's neuro, if he is still his neuro-we haven't seen or heard from him in over a year. Trying to find a new one here and have an appointment in September. I sent the paper in an email to the "old" neuro, haven't heard anything, but I am confident, that in the end they will feel the fools.
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Postby sou » Thu Jun 11, 2009 2:49 am

Hi.

Double blind? For a method?!!!!!!!!! We aren't researching drugs here! It is unfortunate that treatment is sooooo synonym to drugs!

Let's take another method, for example. Let's say heart transplantation:

100 subjects with chronic heart failure participated in this study. 50 were given a heart from a dead donor and 50 were given a placebo piece of meat. 50% of the treatment group and 0% of the placebo survived at 1, 2 and 3 month followup.

This is not science! This is ridiculous.

MS is associated with venous stenoses. Period. No matter what the effects on MS, they have to be opened. What kind of double blind study could we have here? A good study that is crossing my mind is artificial obstruction of cerebral veins in mice, then feeding them with a relatively toxic diet and see what happens.

sou
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby IHateMS » Thu Jun 11, 2009 6:29 am

How crazy. Perhaps the best approach is to contact only neuros at teaching hospitals. Hopefully those docs are more open-minded and not as corrupted by big pharma.
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Postby mrhodes40 » Thu Jun 11, 2009 8:31 am

100 subjects with chronic heart failure participated in this study. 50 were given a heart from a dead donor and 50 were given a placebo piece of meat. 50% of the treatment group and 0% of the placebo survived at 1, 2 and 3 month followup
:lol:
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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