This Is MS Multiple Sclerosis Community: Knowledge & Support

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?

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.

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.

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

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?

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

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

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www.youtube.com/MSVlogSupport<br />LIJ 60%/ RIJ 50%, angio on Sept 14th no signs of improvement yet.

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

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Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

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

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.

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



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


I dont agree that you have any of that.



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!

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

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.

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



perhaps an association, perhaps a coincidence

spiff
i cannot answer these questions other than by guessing