This Is MS Multiple Sclerosis Community: Knowledge & Support

Welcome to the world's leading forum on Multiple Sclerosis research, support, and knowledge. For over 10 years, This is MS has provided an unbiased community dedicated to Multiple Sclerosis patients, caregivers, and affected loved ones.
It is currently Fri May 24, 2013 10:51 pm


All times are UTC - 8 hours [ DST ]




Post new topic Reply to topic  [ 7784 posts ]  Go to page Previous  1 ... 501, 502, 503, 504, 505, 506, 507 ... 519  Next
Author Message
PostPosted: Tue Jan 15, 2013 2:45 am 
Offline
Family Elder
User avatar

Joined: Fri Dec 04, 2009 4:00 pm
Posts: 225
Location: Yehud, Israel
drsclafani wrote:

P ercutaneous
T ransluminal
A ngioplasty

i just say angioplasty now. surgical angioplasty isnt very common
Per cutaneous = through the skin
Trans luminal = through a vein or blood vessel
Angio plasty = blood vessel mold or form with a balloon

:lol:


Top
 Profile  
 
PostPosted: Tue Jan 15, 2013 5:44 pm 
Offline
Family Elder

Joined: Tue Oct 09, 2012 7:33 am
Posts: 581
Hi Dr. Sclafani,

Thank you for reaching out to us greenies. :) I've got a question for you.

Can you in any way substantiate or disprove the suspicion that CCSVI angioplasty renders improvement in MS patients by reducing neurovascular contact in the medulla region between veins, the rostral ventrolateral medulla, vagus, glossopharyngeal, and vestibulocochlear nerves?


Last edited by Anonymoose on Tue Jan 29, 2013 7:04 pm, edited 1 time in total.

Top
 Profile  
 
PostPosted: Sun Jan 20, 2013 11:32 am 
Offline
Family Elder
User avatar

Joined: Thu Jul 09, 2009 3:00 pm
Posts: 1274
Hi Dr. Sclafani,

Hope you're feeling well and haven't caught the flu.

Your questionnaire attachment that I have in email can't be opened. Could one be snail-mailed to me so you can have a thorough update?

I've decided to have the AO chiro Atlas/Axis adjustment tomorrow because: (1) I think it's best if my head is on straight for when the orthopedic neurosurgeon takes his own MRI and X-ray images next week, (2) It's the fastest way to get some CSF and blood to flow more properly, and (3) The adjustment won't worsen any other cervical problems, e.g., bone spurs, stenoses, etc.

What procedure do you think I should do after the adjustment: Cervical spinal surgery or CCSVI PTA?

Thx again!


Top
 Profile  
 
PostPosted: Sun Jan 20, 2013 1:30 pm 
Offline
Family Elder
User avatar

Joined: Fri Mar 12, 2010 4:00 pm
Posts: 2988
Location: Brooklyn, New York
HappyPoet wrote:
Hi Dr. Sclafani,

Hope you're feeling well and haven't caught the flu.

Your questionnaire attachment that I have in email can't be opened. Could one be snail-mailed to me so you can have a thorough update?

I've decided to have the AO chiro Atlas/Axis adjustment tomorrow because: (1) I think it's best if my head is on straight for when the orthopedic neurosurgeon takes his own MRI and X-ray images next week, (2) It's the fastest way to get some CSF and blood to flow more properly, and (3) The adjustment won't worsen any other cervical problems, e.g., bone spurs, stenoses, etc.

What procedure do you think I should do after the adjustment: Cervical spinal surgery or CCSVI PTA?

Thx again!

There is no right answer based on evidence so
i will give some pros and cons of having cervical spine surgery first
PRO
alterations of blood flow that are corrected by the surgery will be eliminated as a concern during ccsvi treatment
assuming surgery goes well, then getting structural abnormalities permanently fixed first will eliminate them as a concern during the ccsvi treatment
get the higher risk procedure out of the way before the safer ccsvi treatment
CONS
if metal hardware is used, it may obstruct the visualization of the veins
if you have muscular spasms as a result, it may compress the veins
if you are on anticoagulation for a long time afterwards, it will delay ccsvi treatment for a long time
you may be unable to rotate your neck or flex it as part of the ccsvi procedure

and i will give some pros and cons of having ccsvi procedure first
PRO
ccsvi may show muscular and osseous caused stenoses before the surgery. might that help plan the surgery?
ccsvi treatment will improve venous outflow, improve circulation that may reduce cerebral hypoperfusion risks of surgery and anesthesia
ccsvi recovery period is shorter (one month of anticoagulation and a week wait for first ultrasound) and both procedures will be finished sooner than if surgery is done first
CON
complications of ccsvi (uncommon but certainly a possibility) may delay surgery
surgeon unfamiliar with ccsvi may not want to do the surgery


if i think about it longer i will likely come up with more but this for now

DrS

_________________
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com


Top
 Profile  
 
PostPosted: Sun Jan 20, 2013 1:33 pm 
Offline
Family Elder
User avatar

Joined: Fri Mar 12, 2010 4:00 pm
Posts: 2988
Location: Brooklyn, New York
Robnl wrote:
Doc,

How plausible is it that valves are stuck/damaged by bacteria and virus?

I read about a small study that suggests a protein, cytokine, to be the cause of vein problems. Because a higher percentage of cytokines were found in the jugulars in MS-patients than in healthy persons
As far as i know, cytokines are the transporters of T-cells and only created by specific cells, so i suppose there are also more cytokines in the veins in my toes..(as my immune system is pretty active).

Regards,

Robert

robert, i think that ccsvi in most patients with MS is likely congenital. The wall is not thickened and the tissue is quite stiff. The appearance is different from those i have seen who have lymes for example.

valvular stenosis is definitely caused by infections, however. it is possible that a congenital venous valvular stenosis may become secondarily infected but not in most PwMS.

opinon, only

_________________
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com


Top
 Profile  
 
PostPosted: Sun Jan 20, 2013 6:15 pm 
Offline
Family Elder

Joined: Mon Jan 04, 2010 4:00 pm
Posts: 8511
http://www.sirmeeting.org/index.cfm?do= ... Ev&ev=3557
Quote:
Tue, 4/16: 1:30 PM - 3:00 PM
0621
Workshop
WK 21
Ernest N. Morial Convention Center
Room: 394
CME Credits: 1.5
This workshop will use a case-based interactive format to expose participants to Chronic Cerebrospinal Venous Insufficiency. CCSVI is a clinical syndrome resulting from outflow resistance of the veins that drain the brain and the spine, presenting clinically with chronic fatigue, short term memory loss, problems of concentration and complex thinking, headaches, spasticity and vision deficiencies and treated with some success by venoplasty and valvuloplasty. The workshop speakers will describe clinical presentations, explain their pre-procedural evaluations and preparations and elaborate on the criteria they use to decide which patients might benefit from the procedure. Each presenter will illustrate and explain the techniques that they use to image and treat obstructions and define the end points of their treatments. Finally they will discuss follow-up schema. The types of cases discussed will include the following: Routine uncomplicated cases that illustrate the key components of each speaker's techniques; cases that reveal nuances in technique of each speaker; misdiagnoses, technical errors and complications; "re-do" and "bailout" procedures.
Objective
Upon completion of the session, the learner should be able to:
1.Describe the pathology and pathophysiology, and clinical presentation of CCSVI
2. Describe the various screening, diagnostic and surveillance approaches to CCSVI
3. Recognize the venographic appearances of CCSVI and formulate a strategy for their detection
4. Develop a coherent and effective treatment strategy
5. Recognize, reduce and treat complications of treatment
Coordinator
Salvatore Sclafani, MD, FSIR, SUNY Health Science At Brooklyn

I hope there is strong attendance at this.
No mention of MS in the description.


Top
 Profile  
 
PostPosted: Mon Jan 21, 2013 8:30 am 
Offline
Family Elder
User avatar

Joined: Thu Jul 09, 2009 3:00 pm
Posts: 1274
Thank you, DrS, you've given me much to consider, more than I thought there would be. Will keep you updated.


Top
 Profile  
 
PostPosted: Fri Jan 25, 2013 12:03 pm 
Offline
Family Elder
User avatar

Joined: Tue Apr 20, 2010 3:00 pm
Posts: 575
Location: Surrey, UK
drsclafani wrote:
EJC wrote:
Dr S.

I follow this thread, despite not understand a reasonably large amount if it, I do try.

The fact you're here and spend the time discussing this subject in such detail with your patients and anyone else wanting to ask questions is simply outstanding, like you haven't got enough on your plate already. What I'm trying to find though is an overview of your thoughts. Not particularly just medical detail, but how you feel about where you are with CCSVI and where CCSVI is with MS patients.

Do you feel you understand CCSVI more than ever or as you've delved deeper into the subject are you still raising more questions than answers?

When you see a new patient do you feel a CCSVI procedure stands a good chance of helping them?

My wife had CCSVI treatment in Scotland in Dec 2010 and had very promising results (particularly eyesight improvements) which gradually regressed over the next 9-12 months. In Dec 2011 she had jaw realignment work in London which I'm documenting on this forum, with fantastic results.

Each treatment/procedure had a direct effect on different symptoms.

CCSVI returned warmth to my wifes hands and feet, reduced cog fog and provided an instant and substantial improvement in eyesight. Much of this regressed.

Jaw realignment eradicated debilitating neuralgia in her left arm, hand leg and foot. It also has reduced substantially the amount of fatigue she suffered from a daily "battery" life of awake hours of 6-7 hours to a near normal 12-14 hours. Rather than any sign of these regressing they are continuing to improve as time passes, to a degree that phyio and physical rehabilitation has begun to get her back on her feet and more mobile (EDSS reached 6.5 but now starting to improve).

As a layman I look at these results and see two treatments offering relief of two clear sets of symptoms. These are the questions that run through my mind.

1. Was my wife under treated for CCSVI (quite rightly at the time) as we were in the early stages of the development of the treatment two years ago?

2. Have we actually found two things my wife needed treating for but gone about it in the wrong order?

3. Is there any connection at all between skeletal misalignment/TMJ disorders and CCSVI? Or have we simply discovered my wife has two separate ailments providing symptoms currently known to medicine as MS?

4. Once treatment for My wifes TMJ problem are complete would she benefit from a further CCSVI procedure based on the initial improvements of the first procedure?

I'm not actually sure I even expect an answer, I'm typing this more to share my thoughts rather than look for something definitive. But I would really like to know where you feel you are at the moment with CCSVI, globally. In laymans terms.

TIA.


That is a great question. The answer would be very complex, and require quite a bit of thought. So a pat five line answer won"t do it. Let me sleep on this one for a while. please pose the question at the new year. I think that will be a fitting time to look back. Since i do not sleep very much, i will need that much time to formulate my reply.


Well, it's January. I know you've covered a few of the topics in my questions above but I wondered if you've now managed to sleep on it for a while and come up with a global answer to "Where are with CCSVI right now Dr S?"


Top
 Profile  
 
PostPosted: Fri Jan 25, 2013 12:21 pm 
Offline
Family Elder
User avatar

Joined: Thu Feb 18, 2010 4:00 pm
Posts: 1311
Location: Rotorua New Zealand
Thanks EJC it has reminded of something I thought of the other day,

If 30% of PwMS are responders to PTA with good outcomes what have we learned?

If 30% of PwMS respond to Antibiotic Protocols with good outcomes what are we learning?

If MRI's are showing that the Grey Matter lesions are more common than first believed what are we learning?

If PwMS have less Blood Flow through their Brain than 'Normals' what are we learning?

If Blood is refluxing/Back jetting into the Brain what are we learning?

If CNS Lesions are changing/moving on MRI's seen by monthly scanning what are we learning?

If CSF Flow is challenged/poor in PwMS what are we learning?

If CCSVI is found in many de-generative diseases what are we learning?

If MS is a disease of exclusion and a PwMS is found to either improve their health or found to have another disease dx-ed they are told they didn't have MS, so what are we learning?

If Diet effects the disease progress of MS what are we learning?

If MS is not an Auto-immune Disease as previously assumed what have we learned?

If we are learning what is it we have learned?

Keep smilin'
Nigel


Top
 Profile  
 
PostPosted: Fri Jan 25, 2013 1:43 pm 
Offline
Newbie

Joined: Fri Jan 25, 2013 1:36 pm
Posts: 4
Hi,

I am writing from Poland, i am here first time. I have a question to Dr Sclafani and everybody else, does exist natural treatment which works similar to ccsvi surgery? maybe some herbs or something else? thanks for answers, Luke


Top
 Profile  
 
PostPosted: Fri Jan 25, 2013 2:07 pm 
Offline
Family Elder

Joined: Mon Jan 04, 2010 4:00 pm
Posts: 8511
drsclafani wrote:
cece
i am close to completing a very interesting case study that i will share shortly
DrS

I am interested. :)

And welcome to the thread, Luke!


Top
 Profile  
 
PostPosted: Fri Jan 25, 2013 9:18 pm 
Offline
Family Elder
User avatar

Joined: Wed Jul 27, 2005 3:00 pm
Posts: 2699
Location: Sydney, Australia
helenaz wrote:
I have a question to Dr Sclafani and everybody else, does exist natural treatment which works similar to ccsvi surgery? maybe some herbs or something else?
Luke, you may get a better response by posting this same question in the Natural Approach forum. And by the way, welcome.

Some of the "Natural" things I have tried are B3 and Picamilon. But let me be clear, these have not been recommended by any physician (including Dr Sclafani, of whom I am a treated patient). I do not know of any published research showing they are in any way equivalent to surgery, so are not prescribed by Dr's. Although Picamilon is supposedly prescribed in Russia for "chronic insufficiency of cerebral blood flow"; which I would guess is on the artery side, not venous.


Top
 Profile  
 
PostPosted: Sat Jan 26, 2013 2:38 am 
Offline
Newbie

Joined: Fri Jan 25, 2013 1:36 pm
Posts: 4
CureOrBust thanks for answer. I will find out about it, and i will be waiting for response from dr. sclafani.


Top
 Profile  
 
PostPosted: Sat Jan 26, 2013 1:22 pm 
Offline
Family Member
User avatar

Joined: Tue Apr 20, 2010 3:00 pm
Posts: 31
Hi Dr. S. I am the father of a 16 almost 17 year old son who presented with ataxia and nystagmus at age 14 almost 15. Diagnosed initially with ADEM, had MRI at 6 months looked good leisions starting to go away "leisions were prdominately Periventricular". Second MRI showed a new leision so he was tagged with MS. He has had no other episodes since the first one almost 3 years ago.

He is not on any DMD. We have been trying to eat healthy and taking supplements D3 5000IU a day and Protandim. I can't say if this works or not it can't hurt.

The only thing abnormal my son has is Angiodema. It can swell his lip to twice it's size or swell his eyes shut. When he swells it looks like he was in the worst fight of his life lol. I feel this is caused allergies because we treat it with Claritin. But it just seems maybe in his case there might be a correlation there.

Have you treated or heard of PWMS having Angiodema?

Thanks Jimmy.


Top
 Profile  
 
PostPosted: Sat Jan 26, 2013 6:35 pm 
Offline
Family Elder
User avatar

Joined: Fri Mar 12, 2010 4:00 pm
Posts: 2988
Location: Brooklyn, New York
Flashover81 wrote:
Hi Dr. S. I am the father of a 16 almost 17 year old son who presented with ataxia and nystagmus at age 14 almost 15. Diagnosed initially with ADEM, had MRI at 6 months looked good leisions starting to go away "leisions were prdominately Periventricular". Second MRI showed a new leision so he was tagged with MS. He has had no other episodes since the first one almost 3 years ago.

He is not on any DMD. We have been trying to eat healthy and taking supplements D3 5000IU a day and Protandim. I can't say if this works or not it can't hurt.

The only thing abnormal my son has is Angiodema. It can swell his lip to twice it's size or swell his eyes shut. When he swells it looks like he was in the worst fight of his life lol. I feel this is caused allergies because we treat it with Claritin. But it just seems maybe in his case there might be a correlation there.

Have you treated or heard of PWMS having Angiodema?

Thanks Jimmy.



sorry i will answer all outstanding questions tomorrow

s

_________________
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com


Top
 Profile  
 
Display posts from previous:  Sort by  
Post new topic Reply to topic  [ 7784 posts ]  Go to page Previous  1 ... 501, 502, 503, 504, 505, 506, 507 ... 519  Next

All times are UTC - 8 hours [ DST ]


Related topics
 Topics   Author   Replies   Views   Last post 
There are no new unread posts for this topic. DrSclafani needs urgent help

drsclafani

10

1486

Wed Feb 08, 2012 11:24 am

drsclafani View the latest post

There are no new unread posts for this topic. DrSclafani ASKS a question

[ Go to pageGo to page: 1 ... 6, 7, 8 ]

drsclafani

105

10942

Tue Jan 04, 2011 12:03 pm

Hooch View the latest post

There are no new unread posts for this topic. DrSclafani says thanks to an unknown person

[ Go to pageGo to page: 1, 2, 3 ]

drsclafani

40

5116

Mon Mar 07, 2011 7:33 pm

Laurellynne View the latest post

There are no new unread posts for this topic. drsclafani isn't the only doctor with a March birthday....

Cece

12

1974

Sat Mar 26, 2011 1:29 pm

belsadie View the latest post

There are no new unread posts for this topic. types of narrowings of the veins (drsclafani quote)

Cece

0

1333

Thu Sep 23, 2010 1:51 pm

Cece View the latest post

 


Who is online

Users browsing this forum: No registered users


You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum

Search for:
Jump to: