This Is MS Multiple Sclerosis Community: Knowledge & Support

I have read several threads scattered here and there that mention having the IR check other veins besides the IJV and azygos; for example, the iliac and renal veins. I was wondering if we could begin a discussion in one place about the pros and cons of delving into other veins and what exactly one might be looking for. Is there any benefit to checking any of these other veins, at least in terms of alleviating MS? Does anyone know if there is greater risk?

It seems to me the way the return of blood from the lower body works, it better get to the heart and never be refluxed into the brain. Muscles are pumping it past leg vein valves and I guess up the vena cava, and on the way to its getting back to the heart, it gets combined with return blood from arms and the spine, ribs, and all the muscles and abdominal organs. It may be really stale by time it reaches the heart. So much so, that I would start to worry about it refluxing anywhere, and reaching the brain would be very bad. Maybe that's why I get so dizzy lying down when exercising. So combating the possibility of upward reflux with a good stream of gravity-fed used blood from the brain is probably important for all the organs below the brain, as much as it is for the brain itself. Another reason why the back is suffering. Will the pain creep upward, and finally reach the heart?

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

Sure, and welcome to TiMS. I am in favor of the iliac and the renal veins being checked, and treated if lesions are found.

Risks would include the radiation while the veins are interrogated (similar to the radiation for the rest of the venogram). There could be a risk of unnecessary treatment, if one believes that treating this veins is unnecessary. Typically in the iliac and the renal vein, a stent will have to be placed if a lesion is found, because the narrowing in these veins is often caused by compression by an artery. So there are risks to a stent placement, including excessive regrowth of the vein walls (intimal hyperplasia) that narrows the stent or clotting in the stent. If an iliac vein or renal vein clotted and the clot broke free, where would that clot be headed and how much of a concern would that be?

The benefits, in my mind, outweigh the risks. When the iliac or the renal vein has a stenosis, the flow that would have used these veins is diverted to the azygous vein. If the azygous has a stenosis of its own, this added flow will contribute to the reflux in the azygous. If the azygous does not have a stenosis, it might still not be good to add this much flow into that vein. The renal vein especially has a high volume flow. (500 ml/s in the renal vein, 750 ml/s in the combined jugulars? Is ml/s the right measurement there? Not sure.)
edited: according to a post in Dr. Sclafani's thread, it is ml/min.

I have had the IJVs, azygous, renal and iliac checked and all had stenoses from 70-95%. All were successfully treated without the use of stents. There has been no change in my condition, in spite of the fact that this was my second treatment.

The first IR looked the IJVs and the azygous and said the RIJV was fine and that he successfully ballooned the azygous. Nine months later, the second IR found major blockages in both IJVs, the azygous, renal and iliac and opened them without stents. The first IR assured me no one else would treat anything other veins or do anything differently. The second has also said that has no other IR would do anything differently, and most would not have looked in as many places as he did.

So, at least in my case, where does that leave me?

1. Educated and well meaning IRs have done all that current knowledge levels tell them to treat.
2. The first IR said he used IVUS, but no one can get me copies of the images. The second IR didn't use IVUS. So maybe the problem was in the renal or iliac veins, but IVUS should be used to find the problems that were missed there?

We have to be educated consumers and understand that it is still very early in the learning curve. Good doctors do what they think is best, safest and most effective. But limitations on their knowledge or availability of equipment can also limit their effectiveness.

I am proud to have been an early participant (or guinnea pig) and grateful that I had the insurance to do so. I am also glad that my data was captured for future studies. I had no change after either procedure, so am I a non-responder, or am I just a more difficult case than they're prepared to treat?

Further, patients should understand that areas may experience problems that require additional treatments (and costs). CCSVI is an important concept that will bring give some people their lives back, but deciding to seek treatment requires bravery, lots of homework and a realistic budget that allows for the cost of additional followup and treatment (and travel expenses if necessary).

I am not sure that the renal or iliac veins can be successfully treated without the use of stents.

If the narrowing is due to compression by an artery, such as in May Thurner or nutcracker syndrome, then ballooning is not likely to hold up long-term against that ongoing compression.

what changes does a patient notice when renal and iliac veins are treaed, either by venoplasty or stents?
I've never had mine checked, having three procedures, I'm wondering if I might see some other improvements.

Here is a letter from a patient who had been previously treated for CCSVI. In a second procedure, she had only the renal vein treated. Any improvements after this second procedure are presumed to come from the treatment of the renal vein.

www.thisisms.com/forum/chronic-cerebros ... ml#p171846

Most of the time the renal or iliac is treated along with other veins, making it is hard to tell what it is an improvement because of the renal or iliac being treated and what is an improvement because of the jugulars or azygous also treated.

Thank you Cece.

On 21 Sept I submitted a list to NICE in the UK and have updated my list since then, as this is a moving target.

MarkW's list on 27 Sept (possibly out of date today):
Gold standard diagnosis of CCSVI syndrome must use both intravascular ultrasound (IVUS) and catheter venograms. Veins in the neck and truck scanned should include vena cava, transverse and dural sinuses, plus internal jugular, azygous, hemi-azygous, iliac, and right renal veins.

Dr S is the person to ask this question to. Rather than have another thread you should ask Dr S on his thread. If your clinic cannot offer the gold standard diagnosis and/or is unsure about inspecting all these veins in a safe manner I would question them. The advice is find a local expert, this is easier said than done. I add not flying after the procedure so it gets really tough.

MarkW

PS Treating CCSVI syndrome is these areas will not alleviate MS symptoms. We are treating CCSVI syndrome with the primary hope that MS progression will be slowed or stopped. Some people experience improved MS symptoms but that is not guaranteed.

_________________
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

It's left renal vein and left iliac that get checked, to my knowledge. Dr. Zamboni's team as well as Dr. Sclafani also check the ascending lumbars but cannot treat them.
Here is a renal vein case:
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic10680-5190.html
I have to go edit my earlier post to say ml/min!!

Well, that will get you Dr. Sclafani's answer. This particular question is a challenge as a patient because different doctors have very different answers. That's why this is a good one to understand the reasoning behind the different doctors' approaches and make sure we're comfortable with the approach of the doctor we've chosen. It's no fun afterwards to be second-guessing what was done, if the results aren't as expected.

I think it is better to say we are treating CCSVI, with the most likely effect being an improvement in CCSVI symptoms. (Fatigue, cogfog, balance, tinnitus.) Any improvement in MS is much desired. The cessation of progression would in itself be an enormous improvement. I have worried that what we might get is improved symptoms in the short-term but continued progression. I am sad that there is not more research underway right now than what there is. We need to know more....

Even if I quibble on finer details, I like your advocacy, Mark, and your activism.

Hello Cece,
Many thanks for correcting my right to left. The left renal vein is I understand easier to enter from the left saphenous vein (top of left leg) which is one reason Prof Zamboni said to enter thru the left leg.
The iliac vein is divided into common, internal, external, not left and right. I have no idea which could have stenoses. (NB Pharmacists do not study anatomy, check with a Surgeon or IR).

MarkW's list on 28 Sept (possibly out of date tomorrow, maybe today):
Gold standard diagnosis of CCSVI syndrome must use both intravascular ultrasound (IVUS) and catheter venograms. Veins in the neck and truck scanned should include vena cava, transverse and dural sinuses, plus internal jugular, azygous, hemi-azygous, iliac, and left renal veins.

I do not accept that at this stage of development of the procedure any doctor has sufficient knowledge to exclude veins from this list. If just one person of the 15,000 treated people has stenoses in one of these veins then all future patients should be checked for all of them. It is to do with population statistics (enough said).

My logic in saying that we are treating CCSVI syndrome rather than CCSVI is making my point rock solid. If you say you are treating CCSVI a neuro could say prove that CCSVI exists and a long discussion is generated. If you say you are treating CCSVI syndrome as seen in this IVUS/venogram from this patient you are simply treating a symptom. This goes to my point to NICE - Treating syndromes remains an established medical and pharmaceutical practice and must be adopted for CCSVI syndrome. I am making it virtually impossible for neuros on NICE to argue against the procedure.
It is semantics I know but as I said in my Telegraph interview - It's a turf war and we are the losers. I don't like losing.

Best wishes,
MarkW

_________________
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

The letter was written just 5 days post procedre. How is that person today??

I have on many occasions mentioned the fact here and elsewhere that I am not a doctor, for legal reasons. I am actually sick to death of saying it. But I don't think anybody who is not one should go around saying which treatments will or will not work for "MS". For ethical reasons.

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

In response to pklittle, I am the patient who during my 2nd angio on July 18, 2011 had a stent placed in my left renal vein by Dr. Sclafani to correct my nutcracker syndrome. I believe it's on pg. 366 of his thread (I see that Dr. S has just posted another case of nutcracker). Since my jugular veins were still open from my lst ballooning in India in June 2010 and my azygous was flowing well, my renal vein was the only vein treated in July.

I continue to do well. My improvements following the renal stent include better balance and a better gait (almost normal now). My eyesight is also clearer with improved depth perception. I had experienced some improvements in all 3 of these areas (as well as many other improvements) after my 1st procedure but I am even better now. One new improvement is a substantial reduction in leg spasms, especially at night, and my legs no longer feel numb when I stand up after sitting for a long time. However, I still have constant pain/discomfort/weakness/heaviness in my legs and can't walk any further or stand much longer--although I have noticed that my recovery from overdoing it is quicker.

I saw my neuro the end of August, 6 wks post stent. After the neuro exam she said I was doing very well with improved balance and better tone in my left leg. My EDSS improved to 2.5 from a 3. I have been her patient for 10 years and she has never scored me better than a 3, even after my 1st procedure. I then told her about my renal stent. She was not particularly interested as she doesn't believe in CCSVI. Her only comment was "So, you had a stent put in your ARTERY".

I should mention that Dr. S also found my lumbar veins are very small compared to normal and are poor collaterals for spinal vein drainage but he thinks it's unlikely this is the cause of my leg problems (it's conjecture at this point). Nevetheless, following the lead of my friend with CCSVI I asked my family Dr. for an ultrasound to check for venous insufficiency in my legs. Ultrasound was yesterday. I consider myself very fortunate to get it--I'm Canadian. After paying myself for my last 2 CCSVI check ups in Barrie, it was nice to have OHIP cover this one.

I started reducing my rebif 2 months after my 1st procedure and have been off it and all MS meds since March 2011. I was diagnosed with MS in 1991, SPMS in 1994 and had been on high dose rebif since 1994 (I was part of the SPECTRIMS study).

Am I glad I had my renal vein stented? Absolutely. As Dr. S says, we have to look at the "global flow" and the blockage in my renal probably put more stress on my azygous. As an added bonus, although we all worry about our jugular veins closing up after angio, I don't have the same level of concern about my stented renal.

I hope this is helpful. After reading this thread I finally decided it was time to register on TIMS & contribute to the discussion.

Welcome! Thank you for posting your experience! I am glad to hear you are doing well. When you say your gait is improved but you can't walk longer due to weakness etc, can you clarify? Are you saying maybe you had an awkward uncoordinated gait before but now you are straighter/ less clumsy?

I too had a renal stent by Dr S, just 4 wks ago, and am still evaluating myself before I feel I can make a clear statement about the impact or lack thereof. I have other contributing factors because I fell and injured my back in July.

I use a cane or walker and am SPMS. You walk with no assistance, correct?

thanks for sharing!