For quite some time now I have been pondering why all my so called MS symptoms went away after my angioplasty in 2010 but my legs never got 100% better. In fact, over time, since my CCSVI treatment, my legs have been getting progressively worse. My symptoms: difficulty walking, heaviness, swelling, pain, numbness and feet turning blue. I speculated it might be because I had a membrane growing inside my left jugular stent that was occluding blood flow but I figured it was more than that. I have thought that because we are born with venous malformations of the central nervous system what is stopping us from having other venous malformations throughout our body? I had also heard that the azygos, iliac and renal veins can play a part in lower body mobility. When I was treated in Poland they only looked at my azygos and jugulars. I decided to look into getting those other veins looked at along with seeing about the membrane in my stent.
I did a lot of research before deciding to go Vascular Access Center in Seattle, Washington on July 28, 2011 with Dr. McGuckin. Why didnt I go back to Poland? I really would have loved to, as I trust Dr's Simka and Ludyga implicitly, but Euromedic doesnt look at the renals or iliac. The findings from VAC were left iliac 50% stenosed, right iliac normal, left renal 50% stenosed, right renal normal, My azygos had a tight web like stenosis and was 80% blocked after cutting out the webbing the flow was still blocked so they put a stent. The membrane in my left jugular was cut out and blood flow was returned. My right jugular had restenosed 50% and was ballooned also.
My legs did not get any better after treatment, unfortunately, so I got a referral for a Doppler sonagram in Salem, Oregon while I was down there visiting my Mom. EUREKA! Chronic venous insufficiency in both legs! Ever since I was DX'd with MS I was told my leg problems were MS. NOT TRUE! I am back home now and plan on getting referred to a vein specialist. From what I understand, it looks like vein ablation treatment will remedy my problem. This is the same treatment they use for varicose veins. click here
I went into all of this CCSVI stuff for answers and closure. Instead I am faced with hundreds of more questions. This new paradigm about so called MS is just in the beginning stages and we are the guinea pigs. There are no definitive answers-YET. I will be surprised if it happens in my lifetime. Most IR's are just looking at the central nervous system veins and I know it's much bigger than that. There isn't enough sharing of information between the clinics that are doing the treatments and studies. Knowledge can be attained through trial and error and by covering up errors we will not learn from others mistakes, unfortunately.
I now, no longer believe in MS. I know I have venous issues throughout my body and not some auto immune disorder. I still dont have all the puzzle pieces but I certainly am further ahead then when I was blithely trusting my neurologist.
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Dear Ginger,
ReplyDeleteI have never really believed in the auto-immune disorder theory about my case either. It might be the case for other people though since MS could be so variable from one person to another. MS is just a label for a disease or a condition that the experts are trying to understand. However, the connection between the inflammatory response, the venous system, the genes , the enviromental factors and so on is unrefutable.
One MS person who experiences on and off symptoms from mild to more severe during the day, depending on so many variables, cannot deny that some systems or organs are affected and reacting . Where are the symptoms originating from ?? I do not know but I have my idea about it. I can generate MS symptoms to myself rapidly if I do certain things. This is not normal!! One of the f...ing problem I have with the neuros is that their expertise is limited to the box ( brain), so looking outside it seems to be a challenge for them. They are protecting this box : " DON'T TOUCH THIS !, LA LA LA LA .." I feel like they are forgotting that medicine is a whole ( it is holistic, not linear) . This is why we need a multidiciplinary team of experts to look at this disease and quick!!!
Transparency is lacking in this CCSVI world of experts. No exceptions . No doubt. Humans are humans even if they have good intentions. People like you and I can see it. Also, it is obvious that remaining stasis are one the culprits. So, we need to find the cause of those stasis otherwise CCSVI will remain a band Aid like the drugs are.
This is a complex issue and veins are probably causing a cascade reaction when they are not draining properly so creating permanent stasis throughout the system. This is only some of my thoughts. I am no expert and feel that I am playing "Dr.Joe knows everything" sometimes. So, excuse me for thinking out loud.
I appreciate you very much. Thanks for your thoughts. Mylène ( Excuse my English, I am French)
I mean no disrespect, but congratulations on your diagnosis of CVI in your legs! It always better to have a name for our ailments, and yours is treatable.
ReplyDeleteYour tenacity has certainly paid off. You are being rewarded for not taking "NO", or, "it's your MS" as a final word. You have my sincere admiration!
I hope that your CVI treatment is successful, and those legs start feeling better very soon.
Thanks for sharing your valuable story. You can't know how many people have learned from your experience.
Nicole
Ginger please let me know what they find because after my liberation procedure I am def more limber but like you the biggest problems are with my legs only...and although the procedure released me from the heaviness feeling I still have fatigue in my legs, foot drop, tightness,swelling, knee and ankle clonus. If this procedure works for you in anyway to relieve your lower extremity issues please let me know. Thank you for pursuing these problem further!!! =)
ReplyDeleteThis sounds very familiar. I am going to see Dr. Scalafani for my azygous and recheck my jugulars soon. My sister suffered with PVD (peripheral vascular disease) before she died from colon cancer. PVD involves disease in any of the blood vessels outside of the heart and diseases of the lymph vessels - the arteries, veins, or lymphatic vessels. There has got to be a genetic link to the "MS-like" pseudo symptoms that we have experienced.
ReplyDelete"the enviromental factors and so on is unrefutable. " meant : environmental factors. Sorry for typo mistake.
ReplyDeleteMy legs have also gotten much worse since my CCSVI procedure. I was somewhat disappointed when Dr. Mandato (Albany) entered the groin on the right for the procedure in September 2010. As I understood it, entering on the left would have been a way to evaluate the iliac vein too. The initial positive effects of the procedure on my mobility (less leg pain, better balance) faded within weeks. The only positive benefit I've retained is improved urinary function though I'm still also taking medication for that which I'm unwilling to stop. (The medication had little effect beforehand but since the procedure the serious problems I had have been reduced nearly 90% I'd say.) My stenoses was characterized at about 50% overall; the right IJV was ballooned once, the left twice and the azygos in three locations.
ReplyDeleteMy neurologist (Dr. Weinstock-Guttman at Buffalo's JNI) corroborated my treatment experience with what they're seeing. Some people with lower extremity "MS" (my quotes) don't have lasting improvements with mobility issues but did with bladder issues. A three month follow in Albany showed the blood flow was still good even though I'd suspected re-stenosis at that point.
There's a long history in my family of varicose veins and other vascular issues. I have all the leg issues you've described and coupled with a lifetime of obesity and sedentary lifestyle, I'm starting to really lose ground on my mobility. Currently, I'm back on a Swank-like diet (without gluten) and riding a stationary recumbent bike to combat this and it seems to be helping. I have never been on any of the MS drugs.
I have been far too wrapped up in work and self-pity to spend much time following the CCSVI world with the same zeal I did before my procedure. Even though the improvement of urinary function was a huge quality of life improvement, I'd otherwise considered the procedure a failure. Thank you for your tenacity in this issue, articulating what I've long suspected and providing a beacon for an avenue I can pursue next. (Sorry for the book length comment!)
Thanks for this Ginger! It is very exciting indeed. Makes lots of sense to me as CCSVI. My so-called MS affects my lower body a lot more. Always has. Getting treatment for CCSVI did only a couple of things ... but ... to me was huge! Other than that still the same and HOPing that my flow is improving as time moves on.
ReplyDeleteIt will be one year Sept. 15/10. So I feel that I have given time for the treatment and now I am pursuing the CVI in my legs. Thanks once again to you my dear!! I am now praying I have crappy veins in my legs!! My veins weren't as crappy as I HOPEd for the CCSVI treatment. In fact if there was a 3 out of 5 criteria I would fail. I only had one which still has some issues but will check this further after checking my legs. What bothers me is why would the IRs not check the venous system in the legs too? This is certainly more common than CCSVI. I just find that baffling. Being EXPERTS in the venous system after all.
Thanks so much for your forward thinking and being a TRUE PIONEER Ginger. You are one awesome woman
Thanks for the insightful post. Since my CCSVI treatment last August, my legs have gotten worse, as well. I've been telling people that if I took my legs out of the equation I'd be 100%. You've given a lot of us food for thought! I, for one, will be pursuing CVI!
ReplyDeleteDon't take this the wrong way my Queen but, you are a Venous Pitbull!!! You were my inspiration when I spoke with you on BlogRadio 20 months ago and you continue to be so now. I too have seen many of my improvements abate after Angioplasty one year ago but one of the remaining benefits (thank God) is the lifting of the "London Fog". Clarity of thought or rather the return of cognitive function is a unifying component in this debate and it has returned my ability to engage with my kids, my Wife, my LIFE. We are only at the starting line. If the MS Societies devote their research dollars to the true cause of symptoms we will have our answers in short order. Interventional Radiologists are investigators by nature and the appropriate professionals to conduct these research. The Neurological community is populated with educated speculators with as much reliability as Standard & Poors has in assessing the quality of Toxic Mortgages.
ReplyDeleteYou ARE wrong one one thing my Queen, WE WILL find many of the answers in our lifetimes. If we can get Alain Beaudet to swallow his Bu----it in 10 months and commit to clinical trials (mind you stage one and two are redundant) we will see the snowball rolling downhill and the ensuing avalanche will obliterate the autoimmune THEORY forever. Thank you Queen McGinger for your unrelenting search for the truth. We ALL owe you a great debt of gratitude.
Hi Ginger
ReplyDeleteI feel like we are living in parallel universes! I too had angioplasty(no stents though) in Katowice and have improved significantly but for my right leg. You sound like you have experienced what I have. It just does not seem to have gotten the memo about feeling better that the rest of my body received.
In any event, I am fascinated with the notion of lower body venous abnormalities. Would love you to post more details including the specifics of contemplated surgery, ability to get it in Canada( I am from Manitoba). I don't feel the walking/leg issues are neurological, but have more of a mechanical explanation, this might be it!
Ginger, your research may be the KEY for so many who haven't had the complete results from treatment!! Fingers are crossed & I look forward to reading your updates! You are a true pioneer & one of my heroes :) OH... and my dad keeps asking how you are... I think he has a crush on you! hehehe :)
ReplyDeleteHi Ginger,
ReplyDeleteBecause i'm in the same stuatiion as you, ccsvi treatment helps but walking is getting worse, i'm gonna check my legveins....
I'll let you know...
Robert
Just read this article and have to share it as Zamboni mentions leg venous problems associated with iron over abundance http://neuro-sens.com/special-reports/9-general/209264-chronic-cerebrospinal-venous-insufficiency-ccsvi
ReplyDeleteHi,
ReplyDeletewell, for me no problems with the leg veins, Doppler shows gooed functioning valves and good blooed flow....
Robert
Hi Ginger
ReplyDeleteSounds familiar to me.
After my procedure January 24, 2011(both jugulars, azygos, vertebrales) also my legs make problems. The energy, a clear head and strength is back, but I get many blue spots on both legs. They don't disappear anymore. Before procedure I had sometimes dropping foot on a longer walk, one time left one time right. But this gets allways better in a short time. Now, after 5 Minutes my right foot drops. It feels like somebody turns slowly down my gas for the function of my legs. I know that there is a further problem with my veins. May-Thurner? I know, these are my veins! I'm looking for information (everything about leg and pelvis and ccsvi) to give to my very open minded doctor. He sent me to the angiology to test my leg-veins. After that to an MRI of the pelvis. I hope, he found something. Next Thuesday I will see him to discuss the next steps.
From Switzerland
wolke
Hi Ginger,
ReplyDeleteI've been waiting for someone to address this issue. I started improving after my liberation procedure...until I developed a clot in my left jugular and everything went into reverse. However, the reason that I had the CCSVI testing was that I've known for years that I have chronic venous insufficiency, and if I have it in one area, why not another?
Thank`s Ginger for your updates. Gonna check my iliac, renal, leg and arm veins. I'll let you know when I got my results. Hope there's a lot of CCSVI. Be better and better!
ReplyDelete