"whining about neurologists"

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

Postby erinc14 » Wed Jan 12, 2011 9:30 am

Imagewhat an A-hole
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Postby Cece » Wed Jan 12, 2011 10:22 am

:oops:
I've known him to be a likeable, intelligent guy, he certainly seems to genuinely care about his patients. I hope this is a one-time experience, that when "I am going to get CCSVI treatment" presents itself, he has to cover all the bases of why it's a terrible idea in his medical opinion.

He is of the Schapiro clinic, named after Randy Schapiro, of the 'the things they used to do, like rub lotion on themselves and bee stings, didn't hurt them' quote. (That's not verbatim, it's here on the forum somewhere.)
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Postby HappyPoet » Wed Jan 12, 2011 11:01 am

Oh Cece, I'm so sorry the appointment didn't go well. Can you leave a message with your MS specialist's receptionist to call you back regarding whether or not there are new lesions on your latest MRI?

Hopefully, my little story will make you feel better about what happened at your neuro appointment:

Unless I change my mind or chicken out, I have to walk into my annual neuro appointment next week to face the "MS specialist" with whom I had a fight a year ago over CCSVI. To say the least, she was ADAMANTLY against CCSVI testing and treatment and refused to write the script I needed for the Doppler US.

To say more, she definitely did not like learning from me that Albany Medical Center had just done its first CCSVI procedure, one of the first on the East coast -- the look on her face showed she was stunned to hear this news, but how was I to know that she did not know???

I kept thinking that for her to hear of such important news from a patient rather than from her colleagues or the hospital administration couldn't be easy for her; after all, she was Albany Med's new MS specialist, and she hadn't even been notified about a CCSVI procedure that had taken place in her very own hospital.

There I was, feeling empathy for her embarrassment while she's yelling at me, seemingly taking out on me her anger at not having been informed. It was unreal. I left that appointment shattered, in tears, and shaking so hard that I couldn't even drive myself home. Many of my symptoms flared, and I couldn't get out of bed for a month.

You see, she actually threatened me by sternly telling me that she would not let me have Tysabri if I had the liberation procedure, so it wasn't surprising that I almost fell over backward when I later found out that she is none other than Dr. Siskin's "neurologist partner" for his CCSVI clinical study.

Since I do think I need to start Tysabri within the next few months, I can't tell her that I was liberated this past August or that I'm seeking a second opinion this spring. If it wasn't for my need for Tysabri, I would not keep her as my neuro; in fact, I wouldn't have a neuro at all.

Cece, I wish I had your tact and ability to know what to say and what not to say during appointments. You handled yourself perfectly, and I'm very proud of you. No one deserves to be lectured to in the style of a rant, and I'm sorry that you were treated that way. Take heart, though, for your upcoming appointment with Dr. Sclafani will be the best doctor appointment of your life. :D
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Postby MrSuccess » Wed Jan 12, 2011 11:12 am

not suggesting a '' Palace Revolt " :wink: ....... just think it's always good to remind certain medical professionals that they work for YOU... and you expect them to treat you with respect and dignity .

And that's a 2 way street.

From your many posts Cece .... we can see that you are a very kind and polite person.

It's shameful when this great attribute - kindness & politeness - get's taken advantage of ....... by frightened bully's.

Yes ..... your Neuro is frightened ....... if and when CCSVI - MS is established ...... his/her accountant will be a little less busy. :idea:





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Postby Hooch » Wed Jan 12, 2011 11:39 am

I see my neuro in April - the infamous Dr Freedman. I still am not sure about telling him about my treatment even knowing all my improvements which are not placebo - I am a nurse and I know that.
I took in my MRI/MRV last April to ask the same question CeCe - had my lesions changed. I also got no answer as it wasn't clear whether the woman doctor that I saw (Freedman was in Toronto putting down the procedure for CCSVI at the Neurological Meeting) could even read the scan.
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Postby nellie » Wed Jan 12, 2011 11:46 am

Cece--Sounds like your neurologist is the same one I have. I quit him a year ago after he told me ccsvi was bologna and subsequently didn't want to discuss it. Not open minded in the least bit. I know see a neurologist in Edina who is not ms specific but one of the nicest & considerate docotrs out there.
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Postby AlmostClever » Wed Jan 12, 2011 11:49 am

Interesting thread! Sorry it came at your expense, Cece!

I've sat with so many doctors that share this view that it makes me sick!

On hopefully a happier and more satisfying note, would anyone here with positive results from the procedure like to share how their recent trip to see The Wizard went?



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If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby ppicklee » Wed Jan 12, 2011 1:03 pm

Yes... shake it off... shake it off.
What I find amusing & puzzling (besides the obvious :-)) is that he gave you FREE SAMPLES OF NEW DRUGS for you at the end of your appointment. Perhaps in this case if he did most of the talking, you should be charging him for your time?? Make sense??
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Re: "whining about neurologists"

Postby questor » Wed Jan 12, 2011 1:06 pm

Cece wrote:Some high points from his ranting:

* possible symptomatic relief but nothing to do with the cause of MS



Cece, I'm sorry you had a bad experience, and that your doctor felt the need to rant a little (for what it's worth, my Neurologist has been very supportive and interested, and I assume he isn't completely unique in that respect).

As one of the patients with secondary progressive MS who has received stents, I have to agree with the above statement from your doctor, I have felt definite symptomatic improvement in several areas, but I still feel continued progression. If it is any consolation, I'm sure this doctor was reacting from the point of concern for your care, although it sounds as if this could have been better done.

I think a letter to your doc is a good idea, if you plan to continue treatment there, and want to maintain the relationship.

--Tracy
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Postby erinc14 » Wed Jan 12, 2011 1:21 pm

MrSuccess wrote:not suggesting a '' Palace Revolt " :wink: ....... just think it's always good to remind certain medical professionals that they work for YOU... and you expect them to treat you with respect and dignity .

And that's a 2 way street.

From your many posts Cece .... we can see that you are a very kind and polite person.

It's shameful when this great attribute - kindness & politeness - get's taken advantage of ....... by frightened bully's.

Yes ..... your Neuro is frightened ....... if and when CCSVI - MS is established ...... his/her accountant will be a little less busy. :idea:





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Postby EJC » Wed Jan 12, 2011 1:32 pm

We've yet to see Emma's Neuro since she had the procedure. Last time we went he had a load of medical students in prodding Emma and asking questions.

He's an odd type, one of these people that doesn't look at you when he talks to you and closes his eye's in a Brian Sewell manner.

I always accompany Emma to these appointments now so I can ask prudent questions. I normally don't get anything approaching an answer, but it doesn't stop me asking.

He's resigned to the fact there's nothing science can for MS at present, however He feels there's no sound theory in CCSVI, there's yet to be any scientific basis and it will probably simply fade away with all the other "cures" that turned out to be snake oil.

I'm not looking forward to the next meeting, which is a necessity if this procedure is to progress in any way shape or form.
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Postby Gordon » Wed Jan 12, 2011 3:06 pm

I fired m y Neuro.

I mean why even bother going. They are criminals, they just are.

Makes me sick.

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Re: "whining about neurologists"

Postby DrCumming » Wed Jan 12, 2011 3:17 pm

Hopeful10 wrote:
Cece wrote:Some high points from his ranting....

* Zivadinov is no longer behind this


Does anyone know if Cece's neuro is right about Zivadinov no longer supporting CCSVI? And if that in fact is the case, has Zivadinov explained why not?


that is news to me.

Cece - did he elaborate?
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Postby MrSuccess » Wed Jan 12, 2011 3:27 pm

Unless they are treating you for free ......... professionals in ANY field should respect the fact that you are aiding the lining of their pockets .....

Nonetheless.

At risk of being a wise-ass .... it seems a good idea to ask HOW Neurologists came to discover how anyone had MS ... without the testing equipment now available .

The MRI came on the scene in 1985 . Some of us drive cars older than that . So how did they really know what's going on in your brain in 1984 ?

Textbooks ..... based on autopsy's . 8O

Question to ask your Neuro : Did you educate before 1985 ? Many have ... and it shows . Old School. :roll:

And now we have the Doppler. And IVUS . And more.

I'd put out those old text books by the curb on garbage day .... or put them under your headboard on your bed ... :idea:

They are about as useful as a buggy whip.

The new breed of graduating Neurologists ...... are the ones to seek ..... they won't be clinging to outdated ideas and theory's.




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Re: "whining about neurologists"

Postby Cece » Wed Jan 12, 2011 4:25 pm

mjc701 wrote:
Hopeful10 wrote:
Cece wrote:Some high points from his ranting....

* Zivadinov is no longer behind this


Does anyone know if Cece's neuro is right about Zivadinov no longer supporting CCSVI? And if that in fact is the case, has Zivadinov explained why not?


that is news to me.

Cece - did he elaborate?

No, but I took it as a misinterpretation of what Zivadinov was presenting at ECTRIMS.

here is the Wheelchair Kamikaze summary of Zivadinov at ECTRIMS:
Much of the evidence presented at ECTRIMS was mixed, on the whole seemingly confirming a correlation between Multiple Sclerosis and the vascular abnormalities known as CCSVI, but also casting some doubt as to whether or not CCSVI is a cause, rather than an effect, of Multiple Sclerosis. Dr. Robert Zivadinov, who leads the team of researchers vigorously investigating CCSVI at the University of Buffalo, presented several very interesting papers. One paper demonstrated that the severity of CCSVI increases with the severity of Multiple Sclerosis symptoms experienced by patients, and with a more advanced disease course. These findings were backed up by papers presented by researchers from Beirut and Italy. If CCSVI were the cause of MS, the researchers would expect that a constant level of vascular abnormalities would be seen across the entire spectrum of disability levels and duration of disease among patients studied, which is not what their studies demonstrated. Other research presented at the conference contradicted these findings, such as a paper presented by Dr. Marian Simka, an Interventional Radiologist in Poland who has been done hundreds of Liberation Procedures, which found that CCSVI plays a role in the cause and progression of MS, and that the vascular abnormalities were most likely congenital.

Another study presented by Dr. Zivadinov found that subjects who presented with CCSVI had significantly more lesions and brain atrophy as measured by MRI than those MS patients without vascular abnormalities. Yet another investigation presented by Dr. Zivadinov looked at the correlation between a gene implicated with MS, and CCSVI, and found that the data supported an association between MS disease progression and CCSVI separate from the suspect gene. The implications of these findings are that CCSVI could be a risk factor in developing the disease, or a result of the progression of MS.

I think what my neurologist was saying was a misinterpretation of this. You can look at the findings that there is worse CCSVI in patients with more advanced MS and get into debating whether MS causes CCSVI or CCSVI causes MS. It's not much of a debate, because congenital malformations happen first, but for anyone not accepting these are congenital, it could raise doubts.

He also might have been referring to this:
One of the big problems involved in the study of CCSVI in that none of the noninvasive imaging techniques used to try to detect venous abnormalities in patients before having them undergo an invasive catheter venogram are all that reliable. MRV imaging in particular has proven to be almost worthless, as yet another study conducted by Dr. Zivadinov and presented at ECTRIMS demonstrated. Doppler Sonography, while more accurate, is only useful in detecting CCSVI when used according to very specific protocols, and conducted by a highly skilled operator. Even when such conditions are met, Sonography is somewhat subjective, as the Zamboni trained sonographer who did my Doppler scan has said. Sonograms can be interpreted differently by different physicians, and time after time both MRV and sonogram imaging done on patients have proven to be unreliable once a catheter venogram is performed. The blockages suggested by the noninvasive techniques simply don't correspond to what is actually found in patients when the catheter is inserted into their veins.


http://www.wheelchairkamikaze.com/2010/ ... -info.html

There are links to all the abstracts at Marc's blog, with "click here for abstract" as he discusses them in the paragraphs quoted above.
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