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Ooh, looks like I am the first one to post in the CCSVI section!
Dr Diana, I was wondering what your thoughts on the IJV valves are?
My diagnosis seems to stem from the fact I have malformed valves – they are not the same as a lot of MS patients in that they do open but they are mis-shapen and it seems to be slowing the flow down somehow, creating stenosis but not a great deal of relfux.
Would be interested to hear your thoughts on valves and whether they should be treated or are they needed?
Chicken Boo,
I also have malformed jugular valves, especially the left one and that one will not stay open with angioplasty. My IR wants to put in a stent in my left jugular and the upper azygos (it has a web that two angioplasty’s has not resolved), but wants to see if I can wait it out till dissolving stents that are being developed in Europe are available in the US.Have you had CCSVI treatment?
Along these lines, how many here who have had CCSVI treatment had their renal and iliac’s also looked at and treated? My IR does those veins also and on my second procedure (I went in to have pelvic congestion syndrome treated – yet another vein issue) and looked at all my other veins again and my left iliac won’t stay open and was determined to be May-Thurners Syndrome (I got a stent put in for that one). But also, my left renal vein will not stay open either, though it is only stenosed 50% (all my others are 70-80%).
So, I have two theory’s: One, if you have CCSVI vein issues, you probably have vein issues all through your body (I suspect the veins in my legs are faulty too, but haven’t had the US done on them yet). Second, in doing some research on the renal vein, it is linked to Nutcracker Syndrome and people with NS tend to have autonomic disorders. Dr. Diana, have you ever heard of this connection?
Hi OFH,
Thanks for the reply.
No, I do not plan to have treatment until things are more developed – my fear is that I may end up with worse synptoms if I were to restenose or worse to clot etc. I am also not comfortable with current treatments to disable the valves but I believe Zamboni is current working on a device to trim the valve leaflets or similar. If I ended up with a worse problem than I started with perhaps it could give me MS!
I too wondered why the jugulars and azygos should be the only veins with problems – after all if it’s connected to EDS that could easily mean valves problems all over the body.
I have not heard of pelvic congestion syndrome before but interestingly I had to go for a pelvic U/S recently due to what I thought was pain in my right ovary – the scan was all normal but the gynae did say that the pain was very low for ovary pain, close to the iliac *something* (I missed what he said exactly) so perhaps that’s more vein related pain.
Ooh, looks like I am the first one to post in the CCSVI section!
Dr Diana, I was wondering what your thoughts on the IJV valves are?
My diagnosis seems to stem from the fact I have malformed valves – they are not the same as a lot of MS patients in that they do open but they are mis-shapen and it seems to be slowing the flow down somehow, creating stenosis but not a great deal of relfux.
Would be interested to hear your thoughts on valves and whether they should be treated or are they needed?Hi Chicken Boo, IJV valves! My thoughts honestly, vary with the tide of information. You probably know I just spoke at the National CCSVI Society meeting in Canada, so I got to rub elbows with the best, and we are learning as we go. My IJV valve was faulty on my right side and I had a large IJV (“garden hose”) on that side. And yuck, I can FEEL the reflux (on both sides to some degree), so I was fine with the IR ballooning that valve to toast (an 18mm balloon). But I wasn’t on mast cell treatment at that time, and now both IJV’s ache a bit (9 months later). So I wonder about an endothelial backlash with an immune reaction now. There is so much we don’t know yet, but my gut is telling me to open the valve and take all precautions to avoid an immune response (including mast cell treatment and rigorous trigger avoidance) before and after treatment. Next week, I may have a different answer! ha
Chicken Boo,
Along these lines, how many here who have had CCSVI treatment had their renal and iliac’s also looked at and treated? My IR does those veins also and on my second procedure (I went in to have pelvic congestion syndrome treated – yet another vein issue) and looked at all my other veins again and my left iliac won’t stay open and was determined to be May-Thurners Syndrome (I got a stent put in for that one). But also, my left renal vein will not stay open either, though it is only stenosed 50% (all my others are 70-80%).So, I have two theory’s: One, if you have CCSVI vein issues, you probably have vein issues all through your body (I suspect the veins in my legs are faulty too, but haven’t had the US done on them yet). Second, in doing some research on the renal vein, it is linked to Nutcracker Syndrome and people with NS tend to have autonomic disorders. Dr. Diana, have you ever heard of this connection?
Hi ourfullhouse, I had my iliac looked at, too, and all was fine. I didn’t have my renal looked at because I have no signs or symptoms of kidney issues. Docs have been using stents for renal veins forever — especially for dialysis patients. I completely agree with your theory that we likely have venous issues all over (hence the development of POTS, varicosities, etc. Why should IJV’s get all of the glory, right? I also see the vascular changes in the fundus of the eye. MS patients can get autonomic dysfunction, but not as easily as EDS patients, it seems. That makes sense to me because EDS patients have weak vessels to start out, and MSers end up with weak vessels (likely due to mast cell degranulation — my hypothesis). It’s as if EDS patients start out with one foot in the MS box. I will mention, though, that many MS patients I’ve met with autonomic dysfunction actually had undiagnosed EDS! Imagine that! I have an EDS friend being evaluated for Nutcracker Syndrome now, but my feeling, again, is that she has mast cell disorders, as she has MANY veins affected (and has CCSVI). Great thinking! 🙂
Hi Chicken Boo, IJV valves! My thoughts honestly, vary with the tide of information. You probably know I just spoke at the National CCSVI Society meeting in Canada, so I got to rub elbows with the best, and we are learning as we go. My IJV valve was faulty on my right side and I had a large IJV (“garden hose”) on that side. And yuck, I can FEEL the reflux (on both sides to some degree), so I was fine with the IR ballooning that valve to toast (an 18mm balloon). But I wasn’t on mast cell treatment at that time, and now both IJV’s ache a bit (9 months later). So I wonder about an endothelial backlash with an immune reaction now. There is so much we don’t know yet, but my gut is telling me to open the valve and take all precautions to avoid an immune response (including mast cell treatment and rigorous trigger avoidance) before and after treatment. Next week, I may have a different answer! ha
Hi Dr Diana,
Mast cell treatment, must admit I don’t know much about that so will have to look into it 😉I do not have significant reflux (but I have *a little*) in my veins but I often getting fluttering/pulsating sensations roughly where the valves are (mine are assymetric). I always thought I was getting some sort of strange sensations in my thyroid gland but now I realise it’s vein/valve related.
What did they do to modify your valves? If anything?
Have you read about Dr Zamboni’s new thoughts on the valvulotome for the IJV? I feel this is heading in the right direction… For me personally I do not have MS so I guess I can currently say there’s no doubt in my chicken and egg scenario (no pun intended!) so WHY am getting stenosis – my money is on faulty valves due to hypermobility.
And the possibilty of Lyme – still 50/50 on that one.
Hi Dr Diana,
Mast cell treatment, must admit I don’t know much about that so will have to look into it 😉I do not have significant reflux (but I have *a little*) in my veins but I often getting fluttering/pulsating sensations roughly where the valves are (mine are assymetric). I always thought I was getting some sort of strange sensations in my thyroid gland but now I realise it’s vein/valve related.
What did they do to modify your valves? If anything?
Have you read about Dr Zamboni’s new thoughts on the valvulotome for the IJV? I feel this is heading in the right direction… For me personally I do not have MS so I guess I can currently say there’s no doubt in my chicken and egg scenario (no pun intended!) so WHY am getting stenosis – my money is on faulty valves due to hypermobility.
And the possibilty of Lyme – still 50/50 on that one.
Hi Chicken Boo, for more info on mast cell disorders, tmsforacure.org is good — and I have a video out with a link to the latest protocols, or you can find the article under “handouts”. Worth your time! For my valve they ballooned the heck out of it! Yes, I know all about the valvutome from Dr. Sclafani, actually. Valves are a work in progress. My valve was asymptomatic for 46 years! I do know that mast cell mediators can actually change our collagen from type 1 to type 3 (which is much “looser” and “leakier”). That is what happens in varicose veins… Hang in, OK? 🙂
Interesting stuff, as always!
Did Dr Sclafani treat you or do you mean you’ve been ‘learning’ from TIMS? Do you know if ballooning valves is common practice in other types of stenosis/valve problems?
I’m 50/50 about getting treatment, my desperation changes daily, with my symptoms! My mum had a major varicose vein removed in her early 30s. Wish I could have mine removed in a simple procedure!
Interesting stuff, as always!
Did Dr Sclafani treat you or do you mean you’ve been ‘learning’ from TIMS? Do you know if ballooning valves is common practice in other types of stenosis/valve problems?
I’m 50/50 about getting treatment, my desperation changes daily, with my symptoms! My mum had a major varicose vein removed in her early 30s. Wish I could have mine removed in a simple procedure!
Hi, Dr. S. and I have been talking, and he saw my clinical trial dealing with CCSVI, so we got to know each other a bit. Ballooning vs cutting is in constant debate right now — I’ll know more after the ISNVD conference in Feb. and will tell you all the latest thoughts. Remember, that’s what they are not. Thoughts. Nothing is in stone yet! I was OK with having my ballooned. ANYONE having CCSVI treatment, should likely be on strict mast cell protocol before, during and after angioplasty though. Just my own thinking there… 🙂 Diana
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