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It was noted in my last follow up that all of us CCSVI patients that have gone to my Dr. have pulse/ox that is at the very low end of normal ranges. All of us. She found this interesting.

Has this been noted by any other docs? Have any other MSers been told this?

Cece wrote:B-mode abnormality is when the CSA of the jugs are bigger when you stand compared to lying down (the opposite of what they should be). ...

Although CSA is measured in B-mode and a negative ΔCSA is an abnormality, B-mode abnormality has to do with abnormal valves, membranes, septa, etc.

dangit this stuff is hard.

Thanks Sotiris.

drsclafani wrote:why restenosis

Could lack of movement have anything to do with it? I am not by nature extremely sedentary, but since I have been able neither to walk or to drive, I see people mostly only when they come to me, and hardly rise from this chair. I still am affected by heat, at least on my legs (haven't perfected my temperature testing yet). My legs get terribly twitchy. I am not saying I have re-stenosed: I just had a retest in Barrie. If anything, I think you are right about duration and burden, and I expect over the years I might improve. But if being less active means I will have restenosis versus not, or any other thing within my control (now I don't want all you health faddists to chime in here), I would like to know what it is.

Cece wrote:Try this thread, Nigel, it's full of everything I could find by drsclafani on verts:
http://www.thisisms.com/ftopict-13709-vertebral.html

Cece I think maybe one of the problems with vertebral veins is that like the rest of the brain they are encased in bone. This means that whatever space a vein takes neither arteries nor spinal fluid nor nerves may take. Things like bony growths, pressure in the spinal fluid, can subtract from the confined space.

I think that makes arteries better because they don't expand easily. Maybe veins will just take whatever space is left. Are they the lowest in the available-space pecking order, or is spinal fluid?

Anyway I think the space-limitations are ballooning limitations as well. With the jugulars the veins are routinely inflated temporarily to a size larger than the rest of the vein. Inside the spinal casing, this may not be possible or desirable. Have I got that right?

Here is an important question for the SIR group. How important is detailed pre-procedure understanding of the patient's stenosis?

In my recent venoplasty, I had an MRV that showed what looked like 50% stenosis of the left jugular, and nothing else noted. They admittedly couldn't see the azygous vein very well because of the location of the beating heart in front of the vein. When I asked the Dr. for more detail, he said they would be doing detailed venography, the gold standard, once they were in there so it wasn't important. Frankly, I think he is right.

Once they were in the veinography showed that both jugulars were stenosed, right 75% and left 50%, and azygous clear and flowing well. They, of course, were able to deal with both jugulars right then.

A very similar consideration was encountered in the initial days of cardiac balloon angioplasty. Dr. Gruentzig, the inventor of balloon agioplasty, insistied that being able to measure blood pressures distal to the stenosis was critical. Then he could show that the dilitation returned that pressure to normal to show that the stenosis had been opened and normal blood flow restored. This required complex tiny device built in to the catheter and all kinds of difficulty, including size problems. Dr. Simpson and others felt that it didn't matter, as long as the stenosis could be crossed and opened, and the dye showed clear flow after the dilation. That of course is what ultimately was adopted.

Here, if even one stenosis shows up on the relatively inexpensive MRV, that could justify going in and detailed flow issues could be detailed and delt with then. In other words you don't necessarily need the CCSVI definition of at least two stenoses.

I have had good and not so good Neurologists. I guess I have been lucky. My last one was very proactive and opened minded, blunt at times but always honest with me. She is no longer in my state.

I had been in a drug study for a little ove...r a year for another oral drug. I got stuck with the control drug Avonex. I have to say that the Neurologists that I saw while in the study were wonderful to me.

When I choose to leave due to getting progessively worse on the Avonex and told them that I was going to be tested and treated for CCSVI, the reaction were different. Now this is a hospital that does a lot of MS drug trials so they we not very happy. One of the main nurses told me it was a dangeorus procedure and that people died. I could not keep my mouth shut about that one and explained what the 2 cases that are always trotted out really happened. On this visit I saw one of the regular Neurologists and she asked me some questions about what I would be having done and had I checked the doctor out etc. Because there are a lot of people making money off of this. I then said well yes that could be true, but there is also a lot of money to be lost my Neurologists and drug companies if this turns out to be a vlaid treatment. She smiled and said well I guess that is true to. She then said that as doctors they have to keep an open mind, and quoted the story about the doctor who had determined that ulcers were caused by bacteria and not stress or certian foods. Then she wished me will and said that she really hoped that it worked for me. So I was surprised.

Then on my last visit I saw the MS Specialist the big wig of the group, who in the past has always been very great with me and very helpful.

I saw him 2 days after I had the angio, he did say that he was not offended that I had it done LOL which I found funny since I am only a patient in a drug study. He did not want to get in to anything with me about it. What he did want to talk about is that I need to be on a drug because my MS is very agressive and down the road I would have severe disbablity. He wanted me on Tysarbri for a year only since there are some risks with it. Or on one of the chemo like drugs. Since I have no insurance none of these really mattered since they are all so expensive. He did say that the new oral pill, was looking very good but once again since I have no insurance out of the question.

The only thing that I would have considered doing was the once a month steroid infusion. Since I have tolerated them well in the past.

But becasue I messed with my veins, his words! I could not do them for several months. He did state that there was going to be a large study by the NIH out of Texas with Neurologists being involed insteady of all these other doctors that think they know MS.

Wow I went on a tangent, but in all honesty I think he truly belives that the drugs are the best thing. So did he scare me... YES but the drugs themselves scare me more. So I want to know if anyone has heard of this big study he was talking about. I do feel that Neurologists should be a part of this, based on my expericence with doctors that really cared about me and tried the very best to help when I was in need.

Man I hope this made some sense. Sorry for the long ramble

Neurologist's consider "MS" their disease and resent any other doctor's venturing into their turf.

When you had your procedure done, did they discover any collateral veins? The reason I ask is that your body suddenly had its internal plumbing re-arranged to way it was supposed to be. It may well take time to establish the correct circulatory flows and rates and reset itself to the new normal.

Then there's the issue of existing nerve damage-that may or may not be repairable. At least, your progression should be stopped. Also, depending on your situation, you probably have iron deposited in your mind and spinal cord, which again, may or may not be possible to remove.

Good Luck on your recovery.

Donnchadh

Thekla wrote:I got the one third numbers from Prof Vogl. He said about one third of patients experienced great results, one third small slow results and about one third nothing. Whether that was his personal experience or from others' talks, I don't know. He said I appeared to be in the second group with small positive results, primarily lack of fatigue.

I do wonder whether standardization of diagnosis and procedure might not eliminate some of the variability in outcomes.

Standardization will be useful. Of course we need to learn best practice and that isnt going to happen if everyone does the same treatment.
Viewing the presentations of several interventionalists at my symposium showed distinct differences. Which is best, or rather if any of them is the best approach, is unclear..

what will be important will be for each treating physician to be consistent, collect and review outcomes and complications and then share the information.

I am struck with the expansion of treatment techniques so rapidly behond the reocmmendations by zamboni without any evidence.

I remain concerned about the proliferations of stents

AlmostClever wrote:Dr. Sclafani,

Many PwMS on TiMS have been told they have similar conditions to mine and that there is still adequate blood flow from their legs.

I believe you are very correct in that I do not have "classical" May Thurner. The vein is not cut off or constricted and I have no severe pain or swelling in either leg. (Feet sometimes really hurt!)

I really think Nunzio's interpretation (p. 277) is a great explanation:

The left common iliac is dilated due to a blockage in the IVC, which resulted in a collateral vein formation between the left and right iliac.

That is not the way it works. If there is an obstruction of the IVC, then there should be dilation of collaterals that connect above and below the obstruction, not below the obstruction as you are suggesting.

The blockage in the IVC is causing overflow into the ascending lumbar.

That would result in enlargement of the ascending lumbar vein. I didnt think that was the case.

As a result there is diminshed flow in both legs and therefore diminshed oxygen to leg muscles and nerves. My symptoms could be mainly due to claudication. (cold feet, leg fatigue, numbness, limping - same symptoms!) It's worse on the right due to the reflux created by the collateral coming from the collateral flow from the left iliac.

claudication is caused by obstruction of the arteries, not obstruction of the veins.

The lesions in my spine (like Nunzio suggested) are probably from the overflow from the left common ilac vein into the ascending lumbar combined with a faulty lumbar system and/or renal vein which overloads the azygous. (I added the claudication, lumbar system/renal part!)

I dont agree that you have any of that.

I know it's like a Perfect Storm but so is getting MS?!?

There are papers where people with similar conditions have had IVC stenting and improved. (Nunzio can provide!)

Would you consider getting treatment of the IVC (stent)?

Thanks so much! We all know how hard you work for us - I don't think words can express it!!!

A/C

i must be missing something. I saw what i thought was a variation of normal. I do no t think that stenting will help. I think stenting is used far too often and i think that your understanding of these obstructions and their consequences is not making sense to me.
I just do not see it.

Dr Sclafani, please check your inbox. Thank You!

Cece wrote:

drsclafani wrote:Lets not give up hope about neurologist partnerrs. We really do need them

I wonder then what it will take to convince them.

Welcome back!

Randomized studies that control for placebo, durable improvements, few complications

Lena wrote:Dear Dr. Sclafani,

My 15 year old daughter has not been officially diagnosed with MS (about a year ago she was diagnosed with brain lesions after paralysis of her right leg from the knee down which lasted about two weeks). Her only symptoms at this time are fatigue and somewhat foggy thinking. She was also born with one kidney (accidental discovery during a late ultrasound). Fortunately she hasn't had any issues with the kidney, but I'm really worried about repeated exposure to the contrast agent during an MRV and later on during the actual procedure. My question is, do you know of any physicians diagnosing CCSVI solely based on a doppler ultrasound or IVUS?

Thank you so much!

Lets clarify the issues of contrast media and kidney damage

MR venographic contrast media does not cause kidney damage. MR venographic contrast media causes nephrogenic systemic fibosis when there is serious kidney damage. This results in scar tissue through out the body. It does not occur in patients without kidney failure.

venographic contrast media does cause worsening kidney failure. It occurs in patients who have pre-existing kidney failure, diabetes and taking medications that are potentially toxic to the kidneys.

I think that mri has values in patients with ccsvi but it is not a proven screening test for ccsvi. IVUS is an invasive test not a screening test

Doppler US is the screening test of choice at the current time.

MS_HOPE wrote:Oh dear, Dr. S, now I'm really confused. Thanks so much for your summary of the Belfast debate. One statement you made really got my head spinning: "I made four major points
1. that ccsvi has many causes although ms was the most common cause...."

YIKES. From all I've read, I'm convinced it's the other way around - that MS is probably caused, at least in large part, by CCSVI (and other concurrent, and probably variable factors, depending on the individual pwMS.) I am persuaded by the thinking of Ashton Embry (cited on p. 226 of this thread by NZer1) as to the probable causes of MS.

CCSVI is a clinical entity caused by outflow obstruction of veins. The most common association is with MS but it is not proven that ccsvi causes ms. CCSVI may result in symptoms seen in patients with MS. Those symptoms may not be resulting from ms, but rather from ccsvi

I won't be surprised to learn, eventually, that other diseases like Parkinson's, Alzheimer's, and normal pressure hydrocephalus (NPH) also have vascular malformation(s) as a component. (Though there's NO other MS in my very large, extended family, my father had Parkinson's, my mother had NPH, and an uncle had Alzheimer's.) I'm intrigued by the quote (provided by NZer1 on p. 227) attributed to Michael Flanagan (uprightdoc.com) that mentions Parkinsons, NPH, and Alzheimers in addition to MS when discussing brain blood flow issues. (I've yet to read up on that.) Apparently Dr. Hubbard has also recently found CCSVI in a Parkinson's patientAny comments or clarification of your thoughts on this would be much appreciated!

perhaps an association, perhaps a coincidence

spiff1970 wrote:

spiff1970 wrote:Dear Dr. Sclafani,

If we assume that the CCSVI theory is right then how can the following have an impact on bloodflow/MS lesions forming issues:

a) Posture and position: is it better/worse to be in the supine or lying down position? Can having a bad posture have an impact?

b) Physical exercise: does physical effort impact on impaired blood flow when we have CCSVI?

c) Diet: are some nutrients worse/better for CCSVI?

d) Climate: does cold/heat affect the impact of CCSVI?

Many thanks for your attention.

Spiff

Dear Dr. Sclafani,

Can you reply to my queries whenever possible?

Best,

Spiff

spiff
i cannot answer these questions other than by guessing