neurologist appt, take two

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

neurologist appt, take two

Postby Cece » Tue Apr 26, 2011 7:30 pm

Remember my last neuro appt? He took to ranting about CCSVI (errr, "fully informing me") and ran out of time to do the neuro exam or examine my MRI.

Today, it was time to try again. I left my house at 1:45 pm. After driving in one direction to drop off my son, then driving much further in the other direction, I arrive at the clinic. Check-in is smooth and I'm called in quickly. There's a new nurse, she is older and has a great manner with patients. My blood pressure is good, etc etc, the doctor will see me soon "hopefully." Then, I wait. There is a lovely view of a lake and I have seen that lake now in all different seasons but this is the first time I have seen it in the rain. There is also a very strange arm device -- it's literally a model of an arm, cut off at the shoulder, with a joystick controller. It's practically inviting me to play with it, but I resist.

Fortunately I had anticipated the long long wait and brought my book club book along. Angry Housewives Eating Bon Bons. Can't say I recommend it but I'll save that opinion for book club.

At last he makes it in, apologetic and aware of the long wait for me and for other patients also waiting. He is a nice guy, he is just vehemently against CCSVI. In that way it is a bit of a surprise that he and I can coexist in the same room, like matter and antimatter, but fortunately the laws of physics allow our appointment to continue.

[more later....]
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Postby David1949 » Tue Apr 26, 2011 7:42 pm

Cece
May I ask what your neuro does for you? Are you on the MS drugs? If not, what can he do for you other than argue vehemently against something that you will just as vehemently argue for?
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Postby Cece » Tue Apr 26, 2011 8:00 pm

He wrote me a nuvigil script today, he is my dealer.... And he is advising that I go back onto Copaxone, which I have been considering since the day I quit back in August, I am not sure what is best.

I think it is good to have regular neurologist visits to track the disease through the neuro exam, MRIs, etc., so I am definitely going to keep a neurologist on my team, and I have always found mine to be a likeable guy. Our CCSVI differences are a new development.
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Postby bestadmom » Wed Apr 27, 2011 5:35 am

Funny you say he's your pusher/dealer. I just described mine exactly that way. I only need 4ap and I'm on nothing else and haven't had an mri in 4+ years.

Mine has no clue who i am until the computer pops up and he reads the history. I get 15 minutes of face time and the exam is a joke. I can't stand him (he is also against ccsvi and is the head neuro for the nmss), but unlike my last 2 neuros, he takes my insurance, so I don't care.
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Postby Shannon » Wed Apr 27, 2011 6:27 am

That's funny! I recently needed a neurontin refill, and they told me I needed to be seen first. I basically told them that I was fine, no new developments, just needed my drugs. Mine wants to see me again in 3 months and talk about getting my MRI's updated since I have been taking Copaxone. I've had MS for 15+ yrs. and there's been absolutely no changes on any of the myriad MRI's I've had over the years. I don't expect there to be any changes now, either. I told him that. I haven't had CCSVI treatment, or even brought it up to him, but I still feel it is useless to go here unless I need drugs, or God forbid, IV steroids. :?
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Postby 1eye » Wed Apr 27, 2011 7:15 am

Shannon wrote:That's funny! I recently needed a neurontin refill, and they told me I needed to be seen first. I basically told them that I was fine, no new developments, just needed my drugs. Mine wants to see me again in 3 months and talk about getting my MRI's updated since I have been taking Copaxone. I've had MS for 15+ yrs. and there's been absolutely no changes on any of the myriad MRI's I've had over the years. I don't expect there to be any changes now, either. I told him that. I haven't had CCSVI treatment, or even brought it up to him, but I still feel it is useless to go here unless I need drugs, or God forbid, IV steroids. :?


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Postby AMcG » Wed Apr 27, 2011 2:36 pm

You are a tease Cece. The trailer you just posted was an excellent appetite wetter. I have been waiting for 'Cece and the Nasty Neuro' part two with baited breath.

I am expecting a David and Goliath confrontation at least.

For goodness sake tell us what happened!
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Postby dan46 » Wed Apr 27, 2011 2:59 pm

Funny Cece
Yep stare out at that lake from the exam room. Done it many times. last time there was a snowshoer hiking across the lake. My first thought was to make a race out of it. Does the snowshoer win by getting aross the lake or does the neuro win by getting into the exam room before the snow shoer gets across the lake. Snowshoer won by a couple of minutes. Life in the exam room.
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Postby PCakes » Wed Apr 27, 2011 4:07 pm

AMcG wrote:For goodness sake tell us what happened!


emotion seconded.. !
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Postby AlmostClever » Wed Apr 27, 2011 4:13 pm

I hate waiting!!!

My neuro has kept me waiting IN THE ROOM for over 2 hours!!! It's in a building in downtown Houston and the only thing to stare out at from the window are rooftops of other buildings!!!

And now I'm waiting again for this epic drama to continue!?!?! AAaaaarrgghh!!!! You're evil, Cece!!!! :evil: :twisted:
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby CaptBoo » Wed Apr 27, 2011 4:44 pm

We're waiting Cece.
<div>There be no dragons   ...Reese Palley</div>
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Postby Cece » Wed Apr 27, 2011 6:26 pm

My neurologist forgets me between appointments too. I may be becoming more memorable.

Where were we, besides enjoying the lake view…

The appointment began with him reviewing my records in the computer. He looked at my MRV from last November but, as it turns out, there was no MRI of the brain in there. I had thought the standard MS MRI was part of the Haacke protocol, but I was wrong.

Just the sight of an MRV, however, did get him started on the subject of CCSVI. It is very frustrating to him, to be spending all his time on CCSVI when it is bunk. (I forget his exact words, although I think 'bunk' was used at some point.) It's not just his patients, he even has a phone call to return to another neurologist whose patient was asking about CCSVI. It's time-consuming. It's constant. It's ridiculous.

He is upset about patients going to get the procedure without telling him. At least I had told him. He tossed a compliment my way: Of all his patients who were bringing up CCSVI or going for the procedure, I had been the most rational about it.

There are some patients, he says, in a tone of absurdity, that call themselves the Liberatios. Liberationis. Something like that.

That amused me a lot, I have to say.

He came up with a valid point, that another problem is patients giving up proven treatment to pursue unproven treatment. I fall into this category, he is not happy that I discontinued Copaxone back in August.

He conducts the neuro exam hurriedly, we discuss that, and then it's back to CCSVI!

His opinion is that what is needed is a big randomized controlled trial with a placebo arm. I am in agreement, once the tweaking is done. He describes more of the big trial that is needed and I ask, "But who is going to do it?" It is expensive, where is the funding, who are the players.

He does not know who but there are all sorts of little trials getting underway, but they are too little, what is needed is big. Multicenter, etc, etc. I like the idea. Yes, let's go big. He and I both have different predictions and expectations about what the results will be, but at least we'd have results.

Here he says that, if CCSVI turned out to be true, he would absolutely get onboard.
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Postby Cece » Wed Apr 27, 2011 6:36 pm

But it's not true, from what he has seen. He's had five patients get the treatment, although there could be more that aren't telling him. Those five have had symptomatic improvement only that lasts for three months only. That's it.

I'm at two months, I say.

We are quite a ways into the appointment and I have not volunteered my list of improvements. He does the courtesy of asking.

I list a few. Fatigue, cogfog. Colors are brighter. My vision improved, six days after the procedure I had to buy new contacts.

There's no reason for any of that, he says. Placebo….

(Aside: he screwed up there. You can't see my worst symptoms because they are the cogfog and fatigue. But I've spend quite a few years now doing a deep study of personal suffering when it comes to these symptoms. This would have been a good time to set aside the debate and to say that, regardless of the reason and whether or not it will last, it is a good thing if I am feeling better.)

He had brought up symptomatic improvement only, I segue to saying that it is a big question to be answered, if CCSVI treatment has any effect on progression or not, that is important to find out.

He talks about how the imaging of these stenoses is so variable. I ask if he'd made it to Hawaii, to AAN, and that a doctor from the Cleveland Clinic discussed a lot of different factors that can affect the imaging, right down to dehydration status. You can do an MRV on the same patient in different states of dehydration and get different results, you can do the same patient on two different days and get different results, according to the Cleveland Clinic doc.

What's needed, according to my neurologist, is an angiography study. Not these imaging studies but the real thing.

I say, well, yes, but you can't do that with healthy controls.

Sure you can, he says.

You think that would get past an IRB? I ask.

He does think it would get past an IRB.

I am dubious about this. There would have to be very compelling reason or research for an IRB to allow an invasive technique like that.

Well, yes, he says. He can't just pull an idea out of nowhere, just completely out of his butt, and get that past an IRB.

I laugh. "Like Zamboni?"I ask, since he has already said as much.

He laughs too and makes some small protests.

However the research is moving away from supporting CCSVI, did I know that? Zamboni himself has even given up on treating.

I mention that, no, Zamboni is doing a trial. 'Brave Dreams.'

I have him on that one. We move on.
Last edited by Cece on Wed Apr 27, 2011 6:53 pm, edited 1 time in total.
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Postby Cece » Wed Apr 27, 2011 6:51 pm

He wants to make a note of where I had my procedure done. Brooklyn, I say. American Access Care. Dr. Sclafani. Second doctor in the US to do the procedure. I feel the need to present Dr. Sclafani's laurels because at our last appointment, when he asked the same question and made the same note, he'd responded with a disgusted head shake and said that all these IRs are coming out of the woodworks now to do this procedure.

This time he looks up in put-upon shock and asks, "American Access Care?"

Yes, I say, confused. American Access Care Clinic.

He remains silent. He hasn't heard of them or for it be a clinic instead of a hospital is objectionable or something. Hard to say what, exactly.

I mention King's County Hospital and the IRB wanting a small randomized trial and Dr. Sclafani's decision to leave in order to do this his way.

"That's odd, isn't it?"

I let it go.

He uses IVUS, I mention. Intravascular ultrasound, from the inside of the veins, so you can see if a stenosis is really a stenosis.

That's part of the controversy, he says, referring to the question of if the stenoses are really stenoses.

The appointment wraps up. He wants to schedule me for some MRIs and get back on a DMD. I am not ready for that.

Compared to last time, it was not so much breathing fire on his part but more of a back-and-forth. I got to introduce the concept of IVUS. While vehement is still the right word choice, unfortunately, for how he comes across, I think he is genuine in his vehemence. He believes what he is saying, even if he shouldn't.
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Postby bestadmom » Wed Apr 27, 2011 6:59 pm

It sounds like your neuro learned from the Aaron Miller school of bedside manners for neurologists. Be glad he didn't say he's surprised you didn't die on the table. Think of how intense the red you would see would be in response to that!
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