This Is MS Multiple Sclerosis Knowledge & Support Community

Cece, I'm beginning to believe there is a balancing system within all of this system of blood drainage and CSF interplaying in the game.
The outcomes that are reported to some degree have consistency when you look at the area angio'ed compared with the symptom relief. The examples where there is no change or seemly unrelated symptom relief have me thinking there is more happening here than we are yet aware of.
My interest in the writings of Dr. Flanagan supports my belief, and I have always thought that the 'individual' nature of MS each of us experience has been a clue all along.
I have the feeling that the balance and disruption in the blood flow, blood supply, blood cooling, blood nutrients, blood waste removal, blood cushioning, CSF flows etc,etc are all interplaying with the nervous system not only from impinging or cushioning, demylination and other Neurological aspects as well.
This in my view is not only about blood flow in the jugulars and azygus areas, it is about an interplay system, more complex than we assume.
We are going to need a team effort here to link each part of a very complex system we know as MS, in a mutually beneficial way.

Don't you already have a neurological partner in each patient's neurologist?

They may not think much of CCSVI, but if you provide them with full information about the procedure as far as their patient and ask for their cooperation in administering the MSQLI, I would be surprised if most neurologists would not cooperate rather than fire their patient.

Oh, Squeakycat, how I wish it were true. My first neuro was the poster boy for how not to treat a patient, how not to be open minded, how not to be interested in the concept of a possibility of something new. He raked the theory over the coals without reading a single word of the research I brought him. He interrogatd me after I had the procedure and refused to talk to the doctor who performed it or the neurologist who did my pre-procedure exam. He was arrogant, rude, condescending and disrespectful. But I do thank him for making me so mad that I am determined to prove him wrong. I think we fired eachother. My current neuro might be more open minded in 10 years or so when there's some data. So I guess there's hope for him.

Cece wrote:

drsclafani wrote:Long distance followup is difficult but not impossible. However in order for my followup to be logical i am having to find locations where Doppler screening can be done. I think i have canada taken care of but the US is more difficult. i have some ideas but cant get started unitil this followup is worked out.

You know we have spent the last year scouting out doctors. Do you need a list of names of doctors who are doing the Doppler ultrasound for CCSVI? Do they need to have had specific training? Or is this not the right approach? Do you have particular cities you need?

I have a CCSVI question but I have forgotten it three times.

bestadmom, I like your idea!

Thank you Cece. Once again the troops to the rescue. Yes, it is important that a group of ultrasound facilities be accredited by someone to assure that they do a standardized examination that is reliable. Training is very important, otherwise abnormal findings will be missed. There is not much concern for the ultrasound done prior to treatment of ccsvi. In my practice, I would generally want to perform that baseline examination myself, at least unless there were mitigating circumstances. However as we will likely see insufficient centers in each city for a while, it is important that those treating have access to local neurologists and ultrasound labs to do the surveillance testing necessary to stay on top of follow up. The on line survey of symptoms can only go so far. We need more objective signs indicating possible restenosis, etc.

I have spoken with Dr Z about this and we will develop a standard at the first isnvd meeting in bologna in 2011. In the meantime, I will have to assure adquate long distance followup for my own patients.

Cece, i will email you off line

tzootsi wrote:Hi Dr. S,

I posted this question out on the boards, but I thought I'd also put it here for your thoughts:

It's pretty much a no-brainer that veggies like broccoli, kale, swiss chard, and spinach are very good for you. In fact Dr. Wahl's ms regimen calls for lots and lots of them in your diet since they benefit mitochondria. However, these veggies are loaded with vitamin K, the blood clotting vitamin. I wonder if eating them after stents were put in might not be a good idea.?

Yes, dietary intake of foods high in vitamin K affects your ability to clot and for some anticoagulants to work.
Coumadin, also known as warfarin, is a blood-thinning drug that works by inhibiting the use of Vitamin K in the liver to make certain chemicals that are critical to forming blood clot. Thus a lot of vegetables that increase your vitamin K intake also affect the coumadin one uses to prevent clotting. The vegetables you have listed above contain considerable vitamin K.

This is not to say that you should avoid these good foods.What is important is that your intake of these foods be consistent so that the right dose of coumadin can be taken.

There is no specific warfarin (Coumadin) diet. It is important to pay attention to what you eat while taking warfarin.

The key indicator of the effectiveness of coumadin as an anticoagulant is the prothrombin time. If you eat lots of vitamin K containing foods, you may require a higher dose of the coumadin. If you periodically eat lots of these vegetables it might affect you more than if you consistently have a certain amount and the dose of coumadin that is given might be insufficient. So CONSISTENCY IN DIET is more important than avoiding good foods.

Talk to your doctor before making any major changes in your diet and before starting any over-the-counter medications, vitamins or herbal supplements because they may contain vitamin K and this might require frequent Prothrombin time tests until you reach a steady state. . If you are unable to eat for several days or have ongoing stomach upset, diarrhea or fever, consult your doctor. These signs and symptoms may mean you need a different dose of warfarin.

elliberato wrote:Dr Sclafani,
there is so much talk on here about the etiology and pathology of veins and such. We are all desperate to do something and CCSVI makes sense as well the procedure is so minimally invasive. What I fail to see however is results?! There are lots of videos about people who say they now have warm feet or can lift a toe or whatnot. I know anything is better than nothing. My question is this. Does this thing really work? Are pwms much better off with the procedure? Did you see that while you treated? Are the patients you treated improving clinically? Have you seen it in your travels and all the people you are learning from? Do pwms really get better from this procedure or what?!

The jury is not yet in on how many patients are improved, which patients are improved, what technique provides the best outcomes, how often surveillance is needed and when to re-intervene.

It will take much time to answer those questions. At the moment, you must make your decisions based upon the information at hand.

Also what constitues success is debatable. Someone whose symptoms are worsening quickly might be satisfied with no worsening. Others want and expect much more.

1eye wrote:

drsclafani wrote: A high volume infusion of fluid with sodium bicarbonate seems to be more effective in reducing the risk of the constrast media. Certain types of xray dyes have virtually eliminated this risk in most patients.

Probably silly, but why not saline?

its all about the data..
Saline is used and it is beneficial. High volume saline infusion was used but several years ago, a comparison of the two regimens was made. Bicarb was shown to be more effective. Isnt that nice a choice of two good regimens.

The risk of contrast media is related to insufficient oxygen being delivered to the cells of the tubules of the kidney. Pushing the impurities out of the blood is hard work and cells without sufficient oxygen to do that work become injured. That injury is worsened by the acidity of the environment of those cells. The bicarb decreases the acidity more than saline.

Cece wrote:My remembered question:

In the early days last winter, it was a big question if the travel posed a risk post-procedure.

I've dug up research that shows that oxygen levels of people flying commercially will drop to levels that might prompt a doctor to put an oxygen mask on them if it were in a hospital setting. Presumably post-procedure the patient's oxygen levels are healthier, so it would be when traveling in that this would be an oxygen-deprivation event.

Travel itself is a big stress to the system of an MSer. That a patient last summer passed away on the plane ride home could be a coincidence, as it was attributed to the multiple blood thinners.

How difficult would it be when doing data collection to include a column for whether the patient had traveled or not for the treatment? Then when doing the data analysis it could be checked to see if the travel itself had any detrimental effect on the outcome. This would be of immediate use to people choosing between going local, traveling a little, or traveling far.

( references:
1. http://tinyurl.com/25ao9z5
2. http://www.ncbi.nlm.nih.gov/pubmed/8239156
3. http://tinyurl.com/2foczp9 )
(note that these are oxygen saturation figures for the body at large, in an MSer the brain would have even less oxygen)

The decreases in oxygen saturation are slight The body is highly effective in extracting oxygen.

However, hypoxia is a factor increasing risk of thrombus formation and with intimal damage could lead to thrombosis. I think that studying outcomes of those who travel is an important point to collect. Good job!

I plan to anticoagulate all my patients with a prophylactic dose of a relatively safe short acting anticoagulant for three weeks. Thus those traveling home will have some protection. I was planning to restrict patients from flying for a few days too.

fogdweller wrote:Dr. S. , I am looking for follow-up treatment to angioplasty I recieved September 27, 2010. It was in So. Cal. and that is about 11 hours drive from my home.

I suspect restenosis. Original effects faded after about a week, and I am now experiencing greater leg pain and recovery time after exercise is much longer (3 days instead of 1/2 day.) I still hve sore and stiff neck which may or may not be related. I am interested in following up.

My question: what do you suggest? Doppler? MRV? Venogram? If in order (e.g. MRV and only if it shows a problem, venogram.)?

Is it likely that the stiff neck is related? I had verly sore jugulars after angioplasty; they wer stretched as mluch as they could.

off line

Squeakycat wrote:

drsclafani wrote:i think i am almost ready...but finding neurologists to partner with has been challenging.

Don't you already have a neurological partner in each patient's neurologist?

They may not think much of CCSVI, but if you provide them with full information about the procedure as far as their patient and ask for their cooperation in administering the MSQLI, I would be surprised if most neurologists would not cooperate rather than fire their patient.

Since the main question is whether treating CCSVI has benefit to people with MS, by cooperating using a neurology-blessed tool such as the MSQLI, they can help us all get an answer to that question sooner rather than later.

Some neurologists have "fired" their patient.

many patients do not routinely visit neurologists and have given up on medications. thus i surely need colleagues who will cooperate. Many i have spoken to have demured and walked away.

Other patients DO NOT want to share their treatment with their neurologist. Some dislike or mistrust their neurologists or are dissatisfied with their neurology care and would be interested in referral to an MS specialist who is open minded regarding ccsvi

So therefore I needed some neurology colleagues close to me that I can refer patients to.

Cece wrote:I have also been wondering what happens if the jugulars are cleared but an azygos stenosis is missed. Would the jugular stenoses, before they were cleared, have been holding back the traffic a bit? With them cleared, would the traffic jam at the missed azygos stenosis actually be worse than it had been to start?

the obstructions require bypass to other veins. If some of the obstruction is relieved, I think it would make the remaining obstructions less impactful.

Should we be drinking lots of glasses of baking soda mixed in water following the procedure to help our kidneys?

hope410 wrote:Should we be drinking lots of glasses of baking soda mixed in water following the procedure to help our kidneys?

not if you have any taste buds. seriously there is no evidence that drinking lots of fluids is a useful idea.

Drinking lots of water after the procedure has not been shown to be useful in reducing risk of contrast nephropathy. If you do not have kidney disease or diabetes or take medications that cause renal toxicity, the risks are low.

Ask your IR about your risk profile and about the need for prophylaxis which is generally done with intravenous infusions.

David1949 wrote:There is a new treatment for clearing plaques from arteries called laser angioplasty. There is a video of it here:
http://www.5min.com/Video/Laser-Angioplasty-175278162
( Sorry but you have to sit through a dumb commercial before the laser story)

Is it possible this technology might be able to clear blood clots from veins?
According to the audio, the laser disintegrates plaques down to the molecular level so they can be dissolved in the blood and carried away.

there are many mechanical methods of clearing clot from veins. I do not think that laser is an effective technique

I have spent the last week reading all of your replies doc, very informative thank you very much for your time.

I was interested in your suggestion to fogdwellers question as I have have sore jugs too, but you took it off-line, is there a suggestion you could put on-line, I would not know if I have restenosed since I had no improvements to begin with even though both jugs and azygos were 80-90% stenosed:

Dr. S. , I am looking for follow-up treatment to angioplasty I recieved September 27, 2010. It was in So. Cal. and that is about 11 hours drive from my home.

I suspect restenosis. Original effects faded after about a week, and I am now experiencing greater leg pain and recovery time after exercise is much longer (3 days instead of 1/2 day.) I still hve sore and stiff neck which may or may not be related. I am interested in following up.

My question: what do you suggest? Doppler? MRV? Venogram? If in order (e.g. MRV and only if it shows a problem, venogram.)?

Is it likely that the stiff neck is related? I had verly sore jugulars after angioplasty; they wer stretched as mluch as they could.

I live in the UK and have had ms for 17 years. I went for CCSVI ultrasound by a zamboni-trained doc in Glasgow over the summer. I had mild stenoses within the 'normal' range that they felt didn't warrant treatment. It took them a while to see this as i have very low BP.
I had an appointment with my neuro last week to compare MRIs from 06 and two weeks ago. He says he's concerned about atrophy but apparently Aricept, tysabri or B12 supplementation wouldn't work.
I've been doing weekly O2 therapy since my 'fruitless' glasgow visit in august.

Are there any approaches i should be exploring to slow down atrophy?