A powerpoint presentation from Dr. Haacke. I’m not sure where the quote comes from, but the link is to a pdf file outlining the relationship between iron in the brain, the tools to finds it, and MS. It includes a couple of goods pictures of an MS patient before and after treatment.
I’ll be very interested to see how things go with Mrs. Uzi. I hope you’ll keep updating us, Uzi.
Uzi - sending out a wish that this works! I am very very interested, so please let us know how it goes.
Thanks for the answers. Please keep us posted. Good luck!
Another vote for updates.
And passing on good wishes to those who are suffering/researching.
As someone else with a stake in the disease, I hope you’ll keep us updated.
Uzi, best wishes for you and your wife.
My sister was diagnosed in June '08, and because of severe fatique she recently made the decision to quit her job. She’s only in her forties, with many years remaining for things to get worse - and she absolutely hates the daily injections.
I’ll be very interested to hear of the results of your wife’ surgery.
Meanwhile, a site that offers a mix of sober counsel and humor, suitable for sufferers and their friends/family: http://www.multiplesclerosissucks.com/
In the situation you describe, is the transplant autologous, or from another person (allogenic?). If it’s not autologous, maybe the immunosuppressives are at least partly responsible?
If they are autologous, that’s really fascinating!
Oh, and Uzi - very much looking forward to hearing how Mrs. U does with the surgery. I am crossing fingers etc. that it stops the progression of this awful disease.
Uzi, thanks for starting a thread on this topic.
My sister has MS and flew to Katowice, Poland for the liberation treatment surgery you describe just last month. She’s very pleased with the initial results, noting overnight improvement in her feet and neck (she had had cold purple feet for two years prior to the surgery and daily neck pain for six months). Talking to her on the phone I could immediately tell her voice was stronger. We’ll see if the effects are lasting.
Best wishes to you and your wife!
It is nice to hear reports of people getting better from their surgeries. There seems to be some common initial benefits noted in quite a few patients: Increased circulation to the extremities, decreased sensitivity to heat and cold, and improved bladder control.
My wife told me Buffalo is releasing their study tomorrow. I’ll post the results. Hopefully, they confirm what we all are wishing for.
First Blinded Study of Venous Insufficiency Prevalence in MS Shows Promising Results
Study shows that at least 55% of people with MS exhibit narrowing of the veins compared to 25.9% of the control group. Adding the borderline cases brings the number from 55 to 62.5.
It should be emphasized that what the Buffalo researchers found was an association between narrowed veins and MS (in a small group of people). Whether that has anything to do with the genesis of MS (this could be a secondary phenomenon occurring after onset of MS), or whether vascular surgery has any beneficial effect in MS patients are separate questions.
It’s difficult to figure how such disparate effects could be related to “malformed” cerebral/neck veins.
I share these concerns, amplified when the surgery gets billed as a “Liberation Treatment”.
There have been a lot of treatments touted for MS, with initial positive findings relating to the disease’s tendency to unpredictably get better or relapse. I hope this one offers genuine promise, but it’s way too soon to discard other theories and therapies and embrace major vascular surgery as the answer.
I agree that was a very bad naming decision.
Drug companies are coming out with new techniques. Tysbari can cause your brain to swell and kill you. New oral drugs are used in chemotherapy and cause your immune system to be compromised. And the kicker treatment is to kill off your entire immune system to start fresh. None of the current treatments stop the progression of MS. At most it slows it down.
If a simple angioplasty like procedure can stop MS, then you’d have line ups miles long to get the surgery done. MS patients are tired of the current approach that requires them to inject what is essentially poison into their bodies.
Hopefully, if CCSVI this isn’t the cause of MS, but just another symptom, then maybe it will open up new avenues of research that will lead to effective treatment or a cure.
Questions I’d like answered are why do people like Negative Lite’s sister gain circulation to their extremities if a vein in her neck is opened? What does a blocked vein in one location have to do with a separate plumbing system even if it uses the same pump. Could there be veins blocked in other locations that cause a similar affect in the brain? Dunno. My knowledge of physiology is limited to the term itself!
Uzi, FWIW, here’s my sister’s latest report three weeks post-op:
Before her operation she could barely maintain a phone conversation her voice was so weak.
I’m not a doctor, so I can’t offer any ideas on how Liberation Treatment works or is supposed to work. It might well be a placebo effect. I keep my doubts to myself though - if it’s working for her, that’s all that matters.
Again good luck with your experience.
Update from today’s Wall St. Journal: Stanford Medical School has stopped allowing a vascular specialist to insert stents into the jugular veins of MS patients, following complaints that the procedure has not been properly tested.
The specialist (Dr. Dake) had a 40-patient stenting program going, based on the preliminary research of Dr. Zamboni suggesting that MS is connected to vascular insufficiency in the brain. Some patients reported improvement after getting stents installed. One died of a possibly unrelated brain hemorrhage and another had to have emergency surgery after the stent dislodged. From the article:
*"Some doctors say the procedure is highly experimental and the improvements reported by patients could simply be a placebo effect, since the course of the MS disease is so unpredictable. Stephen L. Hauser, chairman of neurology at UC, San Francisco, says it’s “extremely unlikely” any vascular cause, such as vein blockage, could be the main culprit in MS.
Dr. Dake responds that critical neurologists “don’t want to acknowledge that a vascular surgeon in Italy found something that’s been right under their noses.”*
That last comment by Dr. Dake disturbs me. It’s uncomfortably close to the “they don’t want you to know” accusation directed against physicians in mainstream practice by proponents of alternative medicine. Why wouldn’t “critical neurologists” want to embrace a therapy if it truly has been shown to effectively treat MS?
Other warning flags from the article - positive reports relying on testimonial evidence in a disease that notoriously has unpredictable periods of improvement and relapse; and it’s curious that the article reports Zamboni found no instances of jugular blockage in non-MS patients (compared to over 50% with blockages in MS), while other studies have demonstrated that about 20% of patients without MS have such blockages. How is it that Zamboni found none?
I hope something good comes of this research, but increasingly I suspect enthusiasts are going down a blind alley here.
We’re going to Poland on Saturday for the surgery. The cost is ~$10K. The risk is minimal. The potential benefits are more than worth the cost if true. The only other option is to keep using drugs that may do more harm than good. Cost of the drugs? A hell of a lot more than the 10K and are continuous.
Over the last little while there has been quite a bit going on. A lot more people have had the surgery and more places are doing it all the time. Many people are reporting improvements.
The issue with the medical community is polarizing. This article (2nd one down) by Ashton Embry on ThisisMS brings to light a few issues. Many nay-sayers seem to have a conflict of interest. That doesn’t make them wrong, but how many people take seriously climate scientists who denounce global warming if their research is paid by the oil companies? The same goes with neurologists who are funded by the drug companies.
I’m sorry I missed this way back when you posted it, but the fact is, I don’t know. I can try and remember to ask my friend, but she’s away on vacation for the next 2 weeks and there’s a good chance I’ll forget!
Pretty much every doctor who does research has been paid for their services by a pharmaceutical company at one time or another - or if not payments to the doctors directly aside from standard examination fees, then payments to their workers for their work done. If you exclude doctors who’ve been paid by pharmaceutical companies, you have few left to choose from.
I’m not saying there’s anything unethical going on in this. I work in medical research on the human testing level. Pharmaceutical companies from all over the world come to our department’s doctors and ask us to participate in multicenter, international studies. Almost all of the studies are “double-blind” so we don’t even know who is getting the study drug versus a placebo. The results are sent to monitoring companies who double-check our work and analyze the data. We couldn’t influence the data in the vast majority of cases.
Of course undue influence happens. But I don’t think it’s wise to automatically exclude doctors from having something to say on a topic because they’ve done research for a big pharma company.