DrSclafani answers some questions

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

Postby soapdiva884 » Tue Jun 01, 2010 4:02 pm

Dr. Sclafani, my bf John was to be the second CCSVI patient of the day when you were told to stop doing the procedure. (we were two days from being in NYC) We are patiently awaiting your phone call or Holly's to tell us to be in NYC on any given day!
John is progressing rapidly and I am looking for any kind of hope we can get. I read this thread everyday and pray to see something encouraging, which I have, don't get me wrong. I just really need a sign that you can do this again for SURE!
Everyday is another day lost for John physically and emotionally. Can you give us any clue to how things are going?
I also want to say that you are an incredible human being and without your hardwork, dedication and perserverance all of us would be lost in the dark. You work tirelessly for the greater good and I want you to know we appreciate that more than you can EVER know! TY so much, Billie and John (Binghamton, NY)
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Postby soapdiva884 » Tue Jun 01, 2010 4:05 pm

girlgeek33 wrote:Today I learned of someone, a friend, that lost her battle with this MonSter. She was only 45. She had been in the hospital for several weeks on saline and steroids. Aren't Doctors supposed to do everything they can to help a patient live? Shouldn't an MS patient at that stage be able to be tested in the hospital in order for Doctors to all they can to preserve life? Isn't the possibility of the vascular connection enough at that point in the course of this disease for them to test and potentially treat? I am disgusted that we as MSers are constantly given minimal care because we have MS and things are just blamed on our disease!!! When did we become second class citizens?!


I am so sorry this had to happen. I agree, MS is blamed for everything and the correct care is not always given.
(((hugs to you)))
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Postby drsclafani » Tue Jun 01, 2010 7:38 pm

soapdiva884 wrote:Dr. Sclafani, my bf John was to be the second CCSVI patient of the day when you were told to stop doing the procedure. (we were two days from being in NYC) We are patiently awaiting your phone call or Holly's to tell us to be in NYC on any given day!
John is progressing rapidly and I am looking for any kind of hope we can get. I read this thread everyday and pray to see something encouraging, which I have, don't get me wrong. I just really need a sign that you can do this again for SURE!
Everyday is another day lost for John physically and emotionally. Can you give us any clue to how things are going?
I also want to say that you are an incredible human being and without your hardwork, dedication and perserverance all of us would be lost in the dark. You work tirelessly for the greater good and I want you to know we appreciate that more than you can EVER know! TY so much, Billie and John (Binghamton, NY)


how this tortures m e
so sad to let you all down.

but nothing i can do except be optimistic

the IRB will make a decision on my proposal. As i said, they can give me the green light, a caution light to make specific changes and then get going or they can put up a red light. at which time I will have to make revisions to the proposal and then resubmmit and wait another month.

lets hope that did a good job in writing
i did get a lot of help and ideas from the readers here
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Postby pollywogsis » Tue Jun 01, 2010 9:01 pm

Hi,

I am so sorry to hear of your friend. To not intervene when the doctor's have taken an oath to operate under the "Best interest of the patient and preserve life" is paramount to murder.

I would contact the media!

my codolences

Thorouly disgusted,
PWS
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Postby Cece » Tue Jun 01, 2010 9:56 pm

drsclafani wrote:
soapdiva884 wrote:Dr. Sclafani, my bf John was to be the second CCSVI patient of the day when you were told to stop doing the procedure. (we were two days from being in NYC) We are patiently awaiting your phone call or Holly's to tell us to be in NYC on any given day!
John is progressing rapidly and I am looking for any kind of hope we can get. I read this thread everyday and pray to see something encouraging, which I have, don't get me wrong. I just really need a sign that you can do this again for SURE!
Everyday is another day lost for John physically and emotionally. Can you give us any clue to how things are going?
I also want to say that you are an incredible human being and without your hardwork, dedication and perserverance all of us would be lost in the dark. You work tirelessly for the greater good and I want you to know we appreciate that more than you can EVER know! TY so much, Billie and John (Binghamton, NY)


how this tortures m e
so sad to let you all down.

pretty sure it is our own bodies that have let us down...

soapdiva884, hang in there, it really could be June 9th, I hope that it is.
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heart flutters and procedure

Postby joanp » Tue Jun 01, 2010 10:40 pm

heart flutters are something most experience from time to time. I have had heart flutters for decades so obviously not a big deal... and i don't drink coffee so it is not due to caffeine. But sometimes these flutters actually make me feel faint. So does this pose a problem for the procedure?
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Postby soapdiva884 » Wed Jun 02, 2010 4:34 am

YOU HAVE NOT LET ANYONE DOWN!!!! Please don't think that!

Thank you for replying. I know how frustrated you must be for all of us who love ones with MS and for the ones who have MS. Cece, thank you so much for the encouragement. We have met with Dr. Sclafani and Holly numerous times and are just so anxious for this amazing Dr. to treat John. I am putting my patience hat on right now. LOL
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Re: heart flutters and procedure

Postby drsclafani » Wed Jun 02, 2010 5:57 am

joanp wrote:heart flutters are something most experience from time to time. I have had heart flutters for decades so obviously not a big deal... and i don't drink coffee so it is not due to caffeine. But sometimes these flutters actually make me feel faint. So does this pose a problem for the procedure?

the impact of MS on the autonomic nervous system is well known. While other autonomic dysfunctions, such as bladder, bowel and sweating disorders, are more common, or more commonly recognized, effects on cardiac rhythm are well known. The first case of atrial fibrillation during an exacerbation of MS was reported in 1986.
First thing to do when this happens is to make sure it is not chest wall spasms or other things that might cause the feeling of a fluttery heart.

So rest quietly for a few minutes and then measure your pulse rate for one minute. The wrist pulse is most commonly used but gently pressing on the pulse in your neck might be easier. Count each pulsation and try to judge whether the pulses are uniform in timing or erratic, and whether each pulse is of similar strength.

normal pulse rate is regular and between 60-90 beats per minute.

If you are getting light headed, it would suggest that you might be having bouts of irregular or hyperfast heart rhythm (such as atrial fibrillation) caused by either MS's effect on your autonomic nervous system, or one of the many causes of abnormal hearth rhythm that we all are prone to, including heart disease, thyroid problems etc. Remember: not all medical problems you have are caused by your MS.

The only complication my patients have had during liberations i have performed (it seems in another lifetime before I got more heavily involved as a writer :evil: ) was a young man in early 30s who developed atrial fibrillation immediately after liberation. I suspected a profound change in his autonomic nervous system occured during liberation. the AF reverted to normal within 12 hours but he has been the only patient to need unplanned admission.

hope this helps
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Postby MS_mama » Wed Jun 02, 2010 7:08 am

Dr. Sclafani, I was speaking with a cardiologist who was unfamiliar with CCSVI but when I was explaining the general gist she did tell me that one thing to keep in mind is that when we do angioplasty, we are, in a sense, "offending" the vein and then there is a tendency to re-stenose and for the vein to become hyperreactive. So, she said, she would theorize that post-angioplasty, a vein may become more severely stenosed than before.

Also, in her opinion, she said that she is unfamiliar with the research but just hearing a little bit about her she would question intervening in a situation where the benefits are unclear. In other words, her view of "do no harm" would mean--do not intervene if there is an unclear benefit, especially in light of the fact that veins do not "like" angioplasty and there are some potential risks, esp of irritating the vein and causing it to become worse off than pre-angio. What are your thoughts on this?

Lastly, she brought up the issue of going to a university provider vs. someone in private practice, because sometimes the profit motive can cloud a person's judgment as to whether to intervene, whereas university dr's are salaried and so therefore more judicious as to whether to intervene or not (because there is no profit incentive). I'd appreciate any thoughts on this.

Thanks so much for your time and we're all hoping your IRB goes through as soon as possible!
dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />
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Postby Cece » Wed Jun 02, 2010 8:40 am

drsclafani wrote: i am going to visit dr Z next week (might as well use my jail time to good advantage) and see some of Dr Galeotti's re-do procedures

Hope you have an enlightening, productive, enjoyable trip!! It is very heartening to see the various heroes (sorry: simple plumbers?) all working together.

MS_mama wrote:Also, in her opinion, she said that she is unfamiliar with the research but just hearing a little bit about her she would question intervening in a situation where the benefits are unclear. In other words, her view of "do no harm" would mean--do not intervene if there is an unclear benefit, especially in light of the fact that veins do not "like" angioplasty and there are some potential risks, esp of irritating the vein and causing it to become worse off than pre-angio. What are your thoughts on this?

This strikes me as support for having this procedure done as part of a research trial, where it's clear that it's under investigation with unclear risks/benefits, and also so the research might prove that its benefits and safety profile.

There was a report recently of someone who had angioplasty, felt better, but then ended up feeling worse than before the procedure.

soapdiva884 wrote:I am putting my patience hat on right now. LOL

Do they sell those? Where can I get one? :)
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Postby nn98200 » Wed Jun 02, 2010 9:17 am

Dear Dr Sclafani,

I had balloon angioplasty in Poland in the middle of March after which I had a great improvement for about two weeks. Afterward most of my improvement went away and I became even worse than before the procedure. Last Thursday I had venography locally (Albany) that found out one more narrowing of about 50-60% at the top of my left jugular vein in addition to the two narrowings the docs found in Poland (one of the bottom of the left and one of the right jugular). Is it possible that the third narrowing appeared as a result of the angioplasty in Poland? I doubt it that they'd miss something like that in Poland and I am afraid it is a result of the angioplasty. But my much bigger concern is that after the 2nd angioplasty here I only had one day, which was the day right after the procedure, that I felt a big improvement of symptoms. Since then I have been feeling just like before the procedure. Of course, I started to think I have restenosis again and I need stenting. But today I talked to the doctor and he expressed the opinion that stenting may be too risky in my case because my veins seem to restenose very fast and the stent(s) may not be able to hold them. He said that if the stent collapses they have no options at all how to help me. I know that there are many people who had stents in Poland and in Stanford (with even bigger stenosis than mine which is about 50% at the three narrowings and Dr Dake didn't do just ballooning at first to check if and how quickly these veins would restenose and decide if a stent is a good option). I forgot to mention that the doctor said he had a patient whose stent collapsed.

By the way, this morning (Wed.) I was stunned by the lightness and the looseness of my legs that I had right after getting up! I walked 100 meters on my own (with little stops) even before taking a shower to loosen my body (a few months ago I could do that but only after taking a shower and far not as well as now)! I felt like I felt a day after the procedure in Poland! Even better than the improvement I had last Friday - the day right after the procedure here! I really thought I had restenosed as I was not doing well since Friday last week! But the issue with stenting remains. I am also worried about the third narrowing the doctor found after the angio here - can a new narrowing pop up after an angio?

I'd really appreciate it if you can share your thoughts on the matter! Thank you very much!!!
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Postby nn98200 » Wed Jun 02, 2010 9:19 am

I meant yesterday I talked to the doctor, not today! Yesterday I was worried I have restenosis and today I am doing much better.
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Postby HappyPoet » Wed Jun 02, 2010 9:50 am

Dr. S.,
Your knowledge of MS is most impressive. Why, you know more than all of my past MS specialists, my GP (and his PA), and my radiologist.

I hope you won't mind me saying that your CCSVI research within our state's university system, SUNY (my alma mater), makes me especially proud.

Hoping everyone has a happy day,
~Pam
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Postby NZer1 » Wed Jun 02, 2010 1:18 pm

Hi Dr. when you are over with Paulo and his team can you ask him his opinion of Dr. Noda's work on blood flow into the brain. Using your analogy of the drum of water and two tubes if the flow in is only dripping the out flow could only dip as well, and the drum my also have other hidden restrictions? 8O
It is my humble belief :lol: that if people are re-stenosing quickly/quite soon after treatment the issue might be because of blood flow issues into the brain compounding outflow issues in this situation.
A good study would be to do Dopler and MRV type tests to see if stenosis position changes over time/longitudinal in patients with CCSVI, and also to talk with Dr. Noda to see if he has checked jugs and ayz veins before and after his surgery to improve clearances for arteries? :wink:
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Postby Zeureka » Wed Jun 02, 2010 2:03 pm

Seems misunderstood sthg and deleted my post...sorry
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