DrSclafani answers some questions

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

Postby drsclafani » Mon May 24, 2010 8:37 pm

SofiaK wrote:Dear Dr. S please, please help me understand Drs and what’s going on with my heart.
I'm just trying to survive each minute. Lately, my heart is acting yucky too. Bad enough that I can’t walk anymore or do ANYTHING without help, but now my heart. My heart beats are high and I'm breathless. My parents are super-worried. But as soon as Drs hear about MS, they just run. I don't get it. I have narrow veins + symptoms. They should care to fix this regardless of the label, as Drs. No??

Is the heart affected because of blood flow? I don’t know. I just really don’t know how long me + my heart can last.

Many thanks,
Sofia K.


Cardiac rhythm can be affected by MS. The rhythm is controlled by nerve conduction of the autonomic nervous system. MS can cause dysautonomia... However, having MS does not prevent you from getting other medical problems.

You need to see a general medical doctor or cardiologist
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Re: warm hands/ feet after angioplasty..

Postby drsclafani » Mon May 24, 2010 8:41 pm

PCakes wrote:Hello Dr Sclafani,

Please share your thoughts as to why resolving jugular vein blood flow results in improved circulation in one's hands and feet?

Thank you,
pCakes


The circulation in the hands and feet is affected by the autonomic nervous system in ms. this leads to purple feet and hands.

somehow, relieving the venous outflow improved autonomic nerve function
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Re: warm hands/ feet after angioplasty..

Postby drsclafani » Mon May 24, 2010 8:44 pm

eric593 wrote:
PCakes wrote:Hello Dr Sclafani,

Please share your thoughts as to why resolving jugular vein blood flow results in improved circulation in one's hands and feet?

Thank you,
pCakes


Or is the warmth commonly felt by people a side effect of the contrast dye used as opposed to improved circulation?

~someone here mentioned this possibility and I see it listed as a possible side effect of contrast dye:

Possible side effects or reactions include headache, dizziness, irregular heartbeat, nausea, warmth, burning sensation, and chest pain


Those affects last a few minutes only. i think this is sympathetic nervous in origin. Sweating also improves.
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Re: warm hands/ feet after angioplasty..

Postby PCakes » Mon May 24, 2010 10:36 pm

drsclafani wrote:The circulation in the hands and feet is affected by the autonomic nervous system in ms. this leads to purple feet and hands.

somehow, relieving the venous outflow improved autonomic nerve function


Is it safe to say that if you have a jugular vein valve issue ..good chance you'll find the same in other areas.. ? Many of the symptoms listed below are also known as MS symptoms?

Symptoms of Venous Insufficiency..signs and symptoms mentioned in various sources for Venous Insufficiency includes the 12 symptoms listed below:
Throbbing leg
Cramping
Burning sensation in leg
Leg fatigue
Nonhealing ulcers in foot
Swollen limb
Thickened skin on affected limb
Shiny skin on affected limb
Discolored skin on affected limb
Leg heaviness
Leg redness
Varicose veins

Thank you again..
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Postby Zeureka » Tue May 25, 2010 5:41 am

Frank wrote:I would like to ask you the following questions:...
In one of your answers you stated that currently there is a periodic exchange of information between a core group of CCSVI researchers including Dr. Vogl from Germany. As I am from Germany he would be my preferred CCSVI contact.

I have heard Dr Vogl has in particular used MRV (performed according to the Haacke protocol) for CCSVI diagnosis. As regards the core Frankfurt meeting group of CCSVI researchers Prof Schelling, Dr Haacke and Dr Vogl seem to be meeting and exchanging research information regularly.

Prof Schelling expressed recently that many neurologists continue to request placebo-controlled trials - to exclude the famous placebo effect - and he raised that if such studies would then confirm significant better results in the non-placebo group it would in principle be required to repeat catheter venography and apply the dilatation also to the placebo-applied patients...

Dr Sclafani, I am wondering how such studies could be/will be or have already been started to be performed? Catheter vengography applied to all and for the placebo-group then just not apply the dilatation/ballooning? Without them knowing that it has been done or not? For how long would the improvements be compared in such a study (and by which criteria), and for how long would the placebo group not know it was placebo? Is this a realistic and necessary direction the neurologists are pushing us to go for? Placebo treatments without applying venoplasty? This would mean that those requesting such studies would admit that it can't be that risky as they claim, can it?! To perform it on patients without even getting any benefit of venoplasty...and will there be volunteers to participate in such a study? And do we really need placebo-controlled trials for a non-medication treatment??
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Postby eric593 » Tue May 25, 2010 9:06 am

Zeureka wrote:Dr Sclafani, I am wondering how such studies could be/will be or have already been started to be performed? Catheter vengography applied to all and for the placebo-group then just not apply the dilatation/ballooning? Without them knowing that it has been done or not? For how long would the improvements be compared in such a study (and by which criteria), and for how long would the placebo group not know it was placebo? Is this a realistic and necessary direction the neurologists are pushing us to go for? Placebo treatments without applying venoplasty?


This is the closest I've come to finding a similar sham surgery:
N Engl J Med. 2002 Jul 11;347(2):81-8.

A controlled trial of arthroscopic surgery for osteoarthritis of the knee.
Moseley JB, O'Malley K, Petersen NJ, Menke TJ, Brody BA, Kuykendall DH, Hollingsworth JC, Ashton CM, Wray NP.

Houston Veterans Affairs Medical Center, Baylor College of Medicine, Houston, TX 77030, USA.

Comment in:

N Engl J Med. 2002 Jul 11;347(2):137-9.
N Engl J Med. 2002 Jul 11;347(2):132-3.
N Engl J Med. 2002 Nov 21;347(21):1717-9; author reply 1717-9.
N Engl J Med. 2002 Nov 21;347(21):1717-9; author reply 1717-9.
N Engl J Med. 2002 Nov 21;347(21):1717-9; author reply 1717-9.
N Engl J Med. 2002 Nov 21;347(21):1717-9; author reply 1717-9.
N Engl J Med. 2002 Nov 21;347(21):1717-9; author reply 1717-9.
J Bone Joint Surg Am. 2003 Feb;85-A(2):387.
ACP J Club. 2003 Mar-Apr;138(2):49.
Curr Womens Health Rep. 2003 Feb;3(1):63-4.

Summary for patients in:

J Fam Pract. 2002 Oct;51(10):813.

BACKGROUND: Many patients report symptomatic relief after undergoing arthroscopy of the knee for osteoarthritis, but it is unclear how the procedure achieves this result. We conducted a randomized, placebo-controlled trial to evaluate the efficacy of arthroscopy for osteoarthritis of the knee.

METHODS: A total of 180 patients with osteoarthritis of the knee were randomly assigned to receive arthroscopic débridement, arthroscopic lavage, or placebo surgery. Patients in the placebo group received skin incisions and underwent a simulated débridement without insertion of the arthroscope. Patients and assessors of outcome were blinded to the treatment-group assignment. Outcomes were assessed at multiple points over a 24-month period with the use of five self-reported scores--three on scales for pain and two on scales for function--and one objective test of walking and stair climbing. A total of 165 patients completed the trial.

RESULTS: At no point did either of the intervention groups report less pain or better function than the placebo group. For example, mean (+/-SD) scores on the Knee-Specific Pain Scale (range, 0 to 100, with higher scores indicating more severe pain) were similar in the placebo, lavage, and débridement groups: 48.9+/-21.9, 54.8+/-19.8, and 51.7+/-22.4, respectively, at one year (P=0.14 for the comparison between placebo and lavage; P=0.51 for the comparison between placebo and débridement) and 51.6+/-23.7, 53.7+/-23.7, and 51.4+/-23.2, respectively, at two years (P=0.64 and P=0.96, respectively). Furthermore, the 95 percent confidence intervals for the differences between the placebo group and the intervention groups exclude any clinically meaningful difference.

CONCLUSIONS: In this controlled trial involving patients with osteoarthritis of the knee, the outcomes after arthroscopic lavage or arthroscopic débridement were no better than those after a placebo procedure.

PMID: 12110735 [PubMed - indexed for MEDLINE]




http://www.ncbi.nlm.nih.gov/pubmed/12110735
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Family medical history of Angina

Postby Milkman » Tue May 25, 2010 9:30 am

:D First a HUGE thank you for this thread and my apologies if I have missed a similar question. I am writing on behalf of my husband who was d/x with MS in 2002, at the time he was a builder. I have been convinced from the very start that he had a problem with blood flow to the brain as this life changing adventure all started after Ian spent three weeks with his head tipped back repairing the underside of a circular staircase that went up three floors. It was just days after he finished he lost his eye sight (Optic neuritis) and then MRI and all the rest of the tests confirmed MS. For six months he had no other symptomns other than ON and extreme head pain. The legs, bladder, speech, hearing and the rest of the mottly assortment have come slowly over the last 7 years with no let up. Not sure what MS is Ian has as no one has ever said.
Do you know if there is a connection between this problem and a family medical history of angina or varicose veins? as both Ians father and grandfather suffered and it makes sense to me who knows nothing about anything medical that Ian may have inherited the floppy veins:-)
If there is a family medical connection does this make a positive CSSVI procedure possible at this moment or would the medical history mean there is a higher chance of complications?
Thank you for reading
Debbie on behalf of her husband Ian
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metal implant

Postby Niceflow » Tue May 25, 2010 9:50 am

Hello, Dr.Sclafani, I was told by a European hospital that any metal implant in the body may interfere with the MRI or it could be even dangerous. I would like to ask you to give us some information about this issue.

I do have a permanent dental bridge, and I guess there is metal in it (I will have to check with my dentist) and am wondering if this would be a major obstacle for me going through the tests. Thanks.
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Postby belsadie » Tue May 25, 2010 10:41 am

Dear Dr. S,
Sorry, if my anxiety is showing. but.............ANY update on when you're going to start your War for Liberation? The one where we've all been waging the battle and now NEED YOU to win the war!
You are truly a "Prince among men". Honestly. Prayers are said for you every night and at mass.
Thanks and God's speed......... :D
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Re: metal implant

Postby L » Tue May 25, 2010 10:50 am

Niceflow wrote:Hello, Dr.Sclafani, I was told by a European hospital that any metal implant in the body may interfere with the MRI or it could be even dangerous. I would like to ask you to give us some information about this issue.

I do have a permanent dental bridge, and I guess there is metal in it (I will have to check with my dentist) and am wondering if this would be a major obstacle for me going through the tests. Thanks.


Dr H. Halperin and his team at Johns Hopkins has done a great deal of work on the subject. It all depends on the size and type of metal.

Most modern implants of all description are, these days, manufactured with MRI in mind.

I'd say that the first port of call is to find out what the metal is. Perhaps it isn't conductive. If it is conductive then you might want to email JH and see if they can help, it may still be possible.

With CCSVI in mind, MRV isn't the only option for diagnosis. A venogram is still possible (until I asked a similar question to yours here I thought that MRV and venogram were one and the same) as is doppler ultrasound. Not being able to undergo magnetic resonance imaging isn't a huge problem..
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Re: Family medical history of Angina

Postby Cece » Tue May 25, 2010 11:16 am

Milkman wrote:Do you know if there is a connection between this problem and a family medical history of angina or varicose veins?

I think it is early days and the research hasn't been done to answer this yet...
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby 1eye » Tue May 25, 2010 12:01 pm

I have both angina occasionally and the usual MS symptoms. I wouldn't rule it out but I think you'll find a large proportion of deaths are due to heart failure. My grandfather died in his sleep of heart failure. Staying as fit as you can is good, but not foolproof either -- Dr. Sclafani has already mentioned autonomic nerves. If your MS results in damage to your Vagus nerve I don't know whether you lose breathing or heartbeats but it's one of those 'necessary to support life' ones. No matter whether your arteries are bad or not -- and it is more often arteries in heart disease, or so I think.

CCSVI/'MS' kills.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby AlmostClever » Tue May 25, 2010 12:48 pm

Dr. Sclafani,

Please comment on my MRV pics below.

I think I see a blocked external jug and vertebral veins (maybe anterior jglars?) with severe collateral activity. And if that's the case, have you discovered a way to treat the vertebral veins yet? Do you think that they also can cause CCSVI?

What do you think?

Best wishes,

A/C

Image

Image
Last edited by AlmostClever on Tue May 25, 2010 4:21 pm, edited 1 time in total.
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Re: warm hands/ feet after angioplasty..

Postby mmcc » Tue May 25, 2010 1:05 pm

drsclafani wrote:
eric593 wrote:
PCakes wrote:Hello Dr Sclafani,

Please share your thoughts as to why resolving jugular vein blood flow results in improved circulation in one's hands and feet?

Thank you,
pCakes


Or is the warmth commonly felt by people a side effect of the contrast dye used as opposed to improved circulation?

~someone here mentioned this possibility and I see it listed as a possible side effect of contrast dye:

Possible side effects or reactions include headache, dizziness, irregular heartbeat, nausea, warmth, burning sensation, and chest pain


Those affects last a few minutes only. i think this is sympathetic nervous in origin. Sweating also improves.

Interesting information. The reaction I had was FREEZING cold feeling and shaking/tremors all over. It also only lasted a few minutes.
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Re: warm hands/ feet after angioplasty..

Postby Cece » Tue May 25, 2010 1:24 pm

drsclafani wrote:The circulation in the hands and feet is affected by the autonomic nervous system in ms. this leads to purple feet and hands.

somehow, relieving the venous outflow improved autonomic nerve function

I'm googling thermoregulation and blood flow...not gotten too deep into it yet, but turned this up:

"Mechanism of Thermoregulation:

• The body temperature in our body is controlled by the thermoregulatory centre present in the hypothalamus of our brain.
• The hypothalamus uses two sets of receptors to collect input signals from all over the body in order to regulate the temperature.
One set of receptors is present in the hypothalamus itself. It monitors the temperature of the blood when its passes through the brain.
• The other set of receptors is the skin which monitors the temperature of the environment.
• Both sets of information are required for appropriate adjustments of the body’s temperature."
http://diet.ygoy.com/2009/08/03/thermoregulation/
(not sure of the validity of this source, I'll do more digging)

I bolded the part that fits the argument that the improvement of cerebral blood flow would have an immediate impact on the temperature of extremities. (If the hypothalamus is monitoring the blood for temperature, and that blood is refluxing/moving slowly/staying longer in the hot brain environment, then the hypothalamus is getting wrong data from the blood flow. Fix the blood flow, the hypothalamus gets accurate data, and turns out the hypothalamus was fine all along, it was just the data being fed to it that was in error.)
Last edited by Cece on Tue May 25, 2010 3:36 pm, edited 2 times in total.
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