-restenosis and need for reballooning
Complications self-reported by venous stent patients-
-accessory nerve damage caused by pinching in the lumen
-vagus nerve aggravation caused by pinching in the lumen
-risk of bleeding and other complications including stroke, due to use of coumadin, heparin and blood thinners as part of aftercare
-risk of venous stent migration into larger veins and the heart
-restenosis of stent site and need for ballooning of stent
-unknown patency for stents in jugular veins
-allergic reactions to pain medications administered during procedure
Risk for both angioplasty and stent procedure:
tearing of veins by catheter
this is the least I can do. So, so sorry-please post other issues if I have forgotten any.
dx dual jugular vein stenosis (CCSVI) 4/09
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Everything you have said is all good advice. That is why I am just participating in Dr Haacke's imaging study and trying to get my local St Louis doctors and researchers interested in this so there are more minds to help identify potential problems with the procedure. I'm still working very hard at getting the news out here. I am still trying to get someone interested in doing the doppler ultrasound in St Louis. To me, that seems to be the place to start. The more doctors who get experience with the doppler techniques for CCSVI, then the more EVIDENCE we will have re MS and CCSVI.
So when I visit my interventional radiologist after my Detroit scan, my main talking points will be interpretation of my scan, and doppler ultrasound.
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I agree totally with Lora.
I want to thank you for the incommensurable work you did and are still doing. Don't put the world on your shoulders. We (MS'ers) too have to do our homework; like Erika did.
A big thank you Erika (I'll be seeing Dr Simka early next year)!
Again Joan, from me the bottom of my canadian hearth, thank you. Happy thanksgiving.
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But this incident does point out one of reasons doctors get the big bucks: unlike you and me, they are expected to both know and fully disclose the risks. It's not clear that is always happening, so I agree that it's useful to enumerate some of the known or suspected risks on this forum, so people considering treatment can ask the right questions.
Years ago I had a septoplasty (nose surgery), also at Stanford. That procedure was much more grueling than my pre-surgery discussions with the doctor lead me to believe. I don't think the doctor lied, but I do think doctors walk a delicate balance between full disclosure and the chance that they'll needlessly scare away patients from having a procedure they sincerely believe will help them. And it's also natural for doctors to believe that they are better than average surgeons, so even if the statistical risk of some complication is known, the risk to their patients must be much less. Just like most people believe themselves to be better-than-average drivers.
So to do my part for your risk list, I'd like to add a couple. When I first read about CCSVI, I did a few google searches on angioplasty and stents. Some risks I read about for plain balloon angioplasty included vein rupture and the possibility of stroke due to clots or plaques being dislodged by the procedure and flowing to your brain. The stroke risk was mostly in the context of arterial angioplasty, where blood is flowing directly towards the brain, so it's not clear how much of a risk this is for venous angioplasty. But rupture is a known risk, and I think one that's somewhat greater for venous angioplasty than arterial, since it's my understanding that vein walls are thinner.
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I'm a smart guy, but thinking I was maybe going to be freed from my cage made me make an unwise choice that I probably would not have made had I been explicitly told to not do things that required lots of effort. Hell, I'd have probably been lifting weights if I thought I could have because we basically just told to get our INR level checked and to stay in touch.
Mr Success was right about one thing when he said I was misleading. He said that "you have benefitted from this right?". Yes I did, but had I not been at the cliff of becoming disabled, and had also been informed of some of the potential risks, then maybe I'd have waited. It's a moot point now and I'm not saying I wouldn't do it again, matter of fact I probably would. But I really can't say that I would have dove in if I was still running and working out hard every day like I did for the first five years of having this.
Once again, that was a good post Scut.
Here are some of the listed side effects:
•Skin reactions to sunlight (photosensitivity)
•Upset stomach (dyspepsia)
•Lack of appetite
•Difficulty swallowing (dysphagia)
And here are some of the rarer side effects:
•Hair loss (alopecia)
•Irritation of the esophagus (esophagitis)
•Irritation of the liver (hepatitis)
•Ulcers of the esophagus
•Increased pressure in the skull (intracranial hypertension)
•Ringing ears (tinnitus)
•Worsening of systemic lupus erythematosus symptoms (lupus or SLE for short)
•A reduced number of platelets in the blood (thrombocytopenia)
•Tongue swelling (glossitis)
•Serious intestinal infections (enterocolitis)
•Vaginal yeast infections.
Yet my endodontist prescribed it like it was nothing, so I took it, but looked up the side effects and almost stopped taking it! She said I would be fine, and I was, no side effects at all. Got more from taking Amoxicillin than this stuff.
So yes, it is a balance between giving complete and accurate warnings, augmented by realistic percentages, then let the patient decide. I was sent home with a thick packet of after care stuff. Still haven't read it since it was mostly boilerplate "if you have a fever contact your doctor" kind of common sense stuff....
So hopefully our good Dr. will add another layer of complexity onto the aftercare instructions and make some adjustments. He aint no dummy.
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And my two cents: I received a lot of aftercare instructions in writing and verbally. Not sure if it is because I asked questions or not, but, for example, I got a demo about how not to move my neck (temporarily), how not to lift things for awhile, lots of conversations about Coumadin (including a talk from a pharmacist), and ongoing reminders, for weeks, to stay hydrated.
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
Thanks for starting this topic. Dr Zamboni's work holds the most hope I've had for 20 years.cheerleader wrote:Complications reported by Dr. Zamboni ... -please post other issues if I have forgotten any.
I have Multiple Sclerosis. I’ve been intrigued by Dr. Zamboni’s work which shows what appears to be a direct connection between vascular blockages and restrictions preventing or slowing down blood draining from the brain. This results in reversal of blood flow towards the brain which results in high levels of iron, free radicals which destroy brain cells and general inflammation. (1) In other words, if true it appears we now know the pathology of MS is not viral or immunological but a vascular problem resulting in a basket of immunological symptoms called Multiple Sclerosis.
As a patient who has taken charge of my own treatment, I’ve commenced research into the theory behind Zamboni’s work, an historical review of our current theories regarding the pathogenesis of multiple sclerosis, and the risks associated with the procedures being suggested - percutaneous coronary intervention commonly known as angioplasty.
The first thing that has become apparent is that angioplasty is big business. More than a million of these procedures are carried out each year in the U.S. alone. From the reading I’ve done attempting to nail down the mortality rates associated with the procedure, it appears 1-2 percent of people undergoing the angioplasty procedure die during the procedure. (2) Not after, during.
That was higher than I’d expected. And those stats are “soft” in the sense they are based on the review of angioplasty procedures found in a database that cannot claim for its data quantifiable characterizations required to give its data clinical context. In other words, the data was not collected for the purpose of determining the risks of angioplasty but as a matter of public record. Thus the data is not exhaustive nor can it claim it is sufficiently representative of heart patients to be the last word on anything. The stats could be significantly higher or lower given various details of the patients’ condition, age, etc.
Nonetheless, these stats are revealing. In my short period of research I’ve discovered the full statistics (e.g. showing statistical dependancies such as age, condition etc.) are not that easy to come by in a form easily comparable or transferrable to other situations. (3) So I used these statistics as they are conservative when compared to any of the specific issues like age or condition, showing angioplasty in the best light. (4)
So is a mortality rate of 1-2 percent acceptable for this procedure?
Since I have absolutely no idea, except that it seems awfully high, I thought about giving this risk some context by comparing it to something we all understand - traffic fatalities. People are aware we take a risk venturing out onto the public roads yet we assume that risk without much question or comment unless the weather prevents us from going out. So what is this risk that appears acceptable to most of us?
Public statistics tell us that 15 people out of 100,000 registered drivers die in traffic accidents each year. (5) A little educated extrapolation can convert this to deaths per use of vehicle which is perhaps easier to compare to the statistic we are attempting to compare and thereby characterize - deaths per procedure. A little math and educated guessing can easily bring us to a million uses of a vehicle brings about 15 deaths.
That means that based on conservative guesses as to how many vehicular deaths there are per use of a vehicle, conservative statistics regarding angioplasty mortality, angioplasty is still about 700 times riskier than dying due to a traffic accident.
So the mortality risk is certainly higher than traffic fatalities. Whether or not this will give the MS patient pause is of course up to the patient. And we each will have to consider not just mortality, but the non-lethal risks which are many. For example, we haven't mentioned stroke, paralysis, inflammation or other problems with stints which are used by most surgeons, re-blockage, excessive bleeding, etc.
I suppose I’ll get over the small shock of these mortality statistics and make a more educated decision over the next little while as I let these facts and the many others I will be researching over the next few weeks “settle”. I haven't fully considered or examined these stats not having obtained the raw data - yet. But all the “big” words aside, this ain’t rocket science. And putting foreign objects in my body IS invasive, notwithstanding how angioplasty is characterized by supporters.(6)
I'd like to see stats on the MS procedural angioplasties. I have no doubt they’d be significantly lower than those related to vascular based angioplasty. One important difference, I think is that people with MS aren't typically as at risk for stroke and other dangerous and potentially lethal cardio-vascular events as are patients already suffer suffering heart disease. This will undoubtedly reduce the cardio risks to people with MS who undergo the procedure.
And stints do indeed have problems with rejection, collapsing, re-blocking etc. The most modern stints have slow release medication to prevent clotting and scaring and rejection of the stint.
My research is far from over and any thoughts you have are appreciated.
I’ll also leave you with a quote from an article from 1962 which article spent a great deal of effort dismissing the vasular basis for MS without any relevant clinical trials whatsoever. However, the article ended with the following almost prescient words:
"It may be of aetiological significance that the sites where plaques were commonly formed are areas where relative vascular insufficiency can be postulated."
Brownell, Betty and Hughs, J. Trevor - The distribution of plaques in the cerebrum in multiple sclerosis, Oxford (1962)
(1) Here is Dr. Zamboni's paper where his iniitial results are given where he found 95% of people with ms having blood drainage problems resulting in iron build up in the grey matter.
(2) This study is based on a review of a 300,000-patient national database owned and administered by the American College of Cardiology. Marilynn Marchione and Linda A. Johnson, Associated Press – “Study supports angioplasty safety”, March 30, 2008. http://seattletimes.nwsource.com/cgi-bi ... 518&zsecti
(3) There is even a debate in some circles regarding whether or not the procedure is contraindicated. This little report will set aside these issues and do a best attempt at accessing the risks. See http://www.heartprotect.com/about.shtml .
(4) They are quoted in an Associated Press article regarding the issue of whether or not the regulatory requirements to carry out angioplasty should be limited to institutions with cardio emergency staff and expertise. The article argues it should be allowed and thus the statistic is, if not quite accurate, used to support the procedure and thus would represent the mortality rate as low as possible to retain credibility.
(5) U.S. Traffic statistics: http://www-fars.nhtsa.dot.gov/Main/index.aspx
(6) Angioplasty is merely opening restricted arteries/veins. This is typically done with a “balloon” which is inflated in the restricted area, pushing the veins walls out, and then removed. Sometimes a stint is used to maintain the opening. 70% of angioplasty procedures are done with stints which are a piece of wire mesh that simply holds open the artery/vein. Dr. Zamboni has gone on record saying that stints are too risky to use.(See CTV W5 interviews.) However, in the normal course of angioplasty the decision to use stints is made at the time of the procedure. This may explain what appears to me to be a high level of use of these products.
The only caveat in the mortality rate you state is that angioplasty in the arteries is used in cardiac patients who have clotting, thrombosis, blood pressure and coronary arterial disease. In other words, their hearts and arteries are diseased and plaque-ridden. In MS patients, it's the malformation of the veins, but the blood and heart are good. My husband's heart, blood pressure, cholesterol and serum thrombin numbers were all healthy and normal. He had no clots or plaques in his veins. If it weren't for the damage in his brain from jugular reflux, he's an extremely healthy man. But his jugular veins were closed. He chose to have them repaired, but we know more today than we did then. There just aren't enough of these venous procedures to go by- and they are not analogous to arterial angioplasty.
But, I suppose, we can also list death as a complication. It's important to understand risk/benefit ratio.
dx dual jugular vein stenosis (CCSVI) 4/09
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