"Beggars" become "Choosers"

[GiCi]

It is time for people to start thinking.
Let us review the situation of MS sufferers before the Zamboni's revolution.
Nobody knew the etiology of MS but everybody knew the inevitable outcome. Being diagnosed with MS meant a sentence to a painful and distressing death. Neurologists and allied professionals prescribed all sorts of different treatments for a condition they did not know the cause of. These different kinds of treatment, from shots of prednisolone, interferon injections, spinal antispastic drugs, to stem cell injection have significant, potentially dangerous side effects. In spite of this patients, desperate in their quest for delaying or avoiding the disastrous end result, subjected themselves to all of these potentially harmful treatments. I am not aware of any MS pressure groups asking for evidence: beggars could not be choosers.
Now, thanks to the genial intuition of one man, a plausible explanation of the causes of MS has been put forward and it has open the door to an effective treatment (which as a side point would save the health systems a lot of money).
The endovascular treatment of defective venous drainage from brain and spinal cord has no harmful side effects and has an insignificantly low mortality and morbidity (complications).
When I was on the table for my venogram I was praying God that Roberto Galeotti would find something wrong with my veins because I was not resigned that nothing could be done for me. I nearly cried when I saw on the screen the stenosis in my jugular veins.
I believed that I had nothing to lose when I decided to have the procedure: at the worst I would not have benefited from it. Fortunately I did.
As I said before I refused any offer of treatment before since diagnosis: I could not accept the concept of treating with potentially harmful means a condition with totally unknown etiology.
Now many MS sufferers want undisputable proof that Zamboni is right before embracing a possibility of an effective treatment with no harmful side effects.
Beggars have become choosers.

[LR1234]

There are risks involved Gici that can't be ignored....Being on blood thinners can be dangerous and complications can occur which can be life threatening. CCSVI is a potential way of treating MS and I am personally quite excited about it all.
Even though we are beggars we still have to be choosers and weigh up the pros and cons of every treatment offered and that includes CCSVI.

[Loobie]

I believed that I had nothing to lose when I decided to have the procedure: at the worst I would not have benefited from it.

BIN - freakin' - GO. My motivation entirely. I would like to post your post on my blog if it is OK with you.

[Ernst]

I truly like how GiCi writes. Splendid.

[cheerleader]

LR-
Just to be clear- GiCi had Zamboni's Liberation procedure, which is a ballooning with a small dose of heparin during the procedure...much less invasive than the Stanford stenting procedure with coumadin for 2 months after.

There are risks involved in most medical interventions....but if the risk you are taking does not address what is causing your disease- why bother?

Neurologists and allied professionals prescribed all sorts of different treatments for a condition they did not know the cause of.

GiCi is right. Jeff's neuro told him outright she didn't know what was causing his MS. Dr. Dake looked at his closed jugulars and said "Well, that can't be good for your brain." The choice for Jeff was easy.

He was also very fortunate to have the option to treat his CCSVI with a local doctor. Not all are as fortunate....that is why I'm still around.
cheer

[LR1234]

Hi Cheer, I wasn't aware that only a small dose of heparin is involved in Zamboni's procedure. I have contacted Dr Z and Dr Simka in the hope that one of them can treat me one day but I just think it is important for us all to remember that no procedure is risk free. (even though many of the drugs that are promoted for MS have much higher risks)

[Sharon]

Cheer wrote

There are risks involved in most medical interventions....but if the risk you are taking does not address what is causing your disease- why bother?

The exact reason I did not take any of the injectible drugs. My MRI's were void of active lesions and inflammation --the injectibles treated inflammation - I didn't have it, so why submit to daily or weekly shots which caused you to have site injection reactions, flu-like systems, fatigue, potential liver toxicity, drained your pocket book because of expense and on and on.....And, most importantly to me, you were still going to be disabled in the end.

The CCSVI procedure was a risk...IMHO much less than the drugs. And, it actually fixed a problem. As you mentioned, Dr. D said,"Well, that cannot be good for the brain." I am anxious to see Zamboni's patient reports after the Liberation Procedure. Let's hope they are similar to GiCi's.

Sharon

[Jamie]

I believed that I had nothing to lose when I decided to have the procedure: at the worst I would not have benefited from it.

BIN - freakin' - GO. My motivation entirely. I would like to post your post on my blog if it is OK with you.

speaking of which, I keep checking for an update......

[Loobie]

On the docket for this evening!

[Jamie]

Good man!

[IHateMS]

Is Wobbly free to speak now?

[mrhodes40]

I don't think his group is free yet, they were just operated on in January. Gici's group is 2 years out I understood from his post

[Daisyduck]

We just returned from Stanford, and this is our /my seccond time for the re-check MRI/V and another Doppler, and chat with Dr. Dake. All is well, and the stents are allowing the venous blood to flow well. Off Coumadin and Plavix, and soon no more black and blue marks all over!
We heard stories that there is a minor revolution going on out there in the remaining medical world about what the heck is Stanford doing? Treating MS with stents? Dr. Dake had made it clear to us right away that he was not treating my MS but only the underlying venous stenoses, and I thought I'd pass that on so that everyone knows how quickly even Stanford could get out of sorts with the remaining medical community, especially, I would guess, the neuros.
Years ago I watched the MS Society tweek the FDA to close down venom production at the Miami Serpentarium so that the drug Proven would be discontinued. I made many calls to them, but did not suceed, nor did anyone else. I am sure we all were told the same thing I was told by Dr. Dake, and it's so easy to get carried away because we now really feel better. We have to be considering what we say to others so that there should be no misunderstanding. Best regards, Daisyduck

[cheerleader]

Hi Daisy-
Glad you had a good recheck at Stanford. The venom you were given (which is a vasodilator, by the way!) was given to treat your MS, and it helped you. BUT the FDA had not approved it. Dr. Dake is treating venous insufficiency with stents, and that has been FDA approved. The fact that everyone he is seeing with stenosis happens to have MS will be clarified in the weeks, months and years ahead as other doctors and researchers chime in. But Dr. Dake can't be shut down, because he is performing an accepted procedure on people who have proven stenosis in their veins. If neuros are upset about this, they need to read the research and begin collaborating with vascular doctors to test their own patients. Patients need not fear discussing this procedure with their doctors, venous insufficiency is a known disease, and treating the veins with stents is standard procedure.
cheer

[mrhodes40]

Cheer's right.

And to my knowledge there is not a soul that did not understand that it was stenosis Dr Dake was treating, not MS. He always makes that very clear and I have repeatedly said on this forum that treating the stenosis for its own sake is reasonable if a person talks it over with their doctor and is clear on what it is they are undertaking and IF it helps your MS, well, good deal.

Bottom line is that this venous insufficiency exists in people who have proven it via MRV.

IMHO someone would have to PROVE that leaving it and not repairing the circulation is perfectly OK for the MS brain before the FDA shuts anything down. Otherwise they are getting in the way of an approved procedure being applied for an approved use (venous stenosis) because it may not impact a second disease.

Here's a good example: the superior vena cava can be blocked by a tumor from lung cancer, it happens. It results in confusion and other neuro problems so they stent the SVC even though it will not do anything for the cancer at all. The treatmenti s done strictly to alleviate the circulation issues.

Treating CCSVI is the same thing.