neuro problems after treatment?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

neuro problems after treatment?

Postby mennb » Wed Sep 22, 2010 9:23 am

New here, was wondering if after having CCSVI treatment, has anyone had trouble with neuro's not wanting to see them again ? Seen a video of this problem in Alberta. Comments. Treatment commencing in 2 California.

Who cares, right ?
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Postby san » Wed Sep 22, 2010 10:28 am

I have my bi-annual appt on Monday with my neuo. Shouls be interesting... Had angio of both rt jugular and azygos on Aug.27...
Will I be escorted out of the building? Stay tuned.. :wink:

Angio certainly didn't help with typos!! :wink:
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Postby ozarkcanoer » Wed Sep 22, 2010 10:41 am

My neuro was very understanding. He is a very well respected doctor and MS expert. He called me before I left for my procedure to wish me good luck, and he also called me two days after I arrived home to see how I was doing. He is not at all a CCSVI "believer" and I understand and respect that. The science has not been done. But he didn't blame me for my decision. I am very lucky.

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Postby Ali888 » Wed Sep 22, 2010 11:41 am

I see 2 neurologists. Prior to going for the procedure, the one at the MS Clinic compared the treatment to bee stings. When I returned and he could measure the actual improvements, he said "But how long will it last?"

Prior to the procedure, my 2nd neurologist said that he was too old to get his head around the idea. It went against everything he had ever been taught about MS. At the same time, he also said that if he had MS he would probably have the treatment done. I have not seen him since having the procedure, but his office did call and ask me to bring in all scans and paperwork that I have. They booked an extended appointment time so that he could do a thorough examination. He is very interested.

He is so interested that he has even seen others who have had the procedure done that were not even his patients...he just wanted to talk to them.

I wish we could get him onside!
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I'm lucky

Postby fiddler » Wed Sep 22, 2010 12:45 pm

I posted this on my blog last week:
I always felt that I am lucky that my neuro and GP are more open-minded than the average medical professional... and my meeting with my neuro today reinforced that feeling. Some of the things that I learned (or sometimes only felt was implied - I don't want to put her at odds with colleagues who are MS "experts"):

1. I am one of four "liberati" she has as patients.
2. In her assessment of my condition, she notices that I have had some improvements in my symptoms. This is the first time that this has happened since I was diagnosed in 2004.
3. She agrees that, given the results of the long-term studies regarding CRAB drugs and my slightly elevated liver enzymes, I should stop taking Betaseron.
4. When she goes to Europe in October for a conference, she intends to get information from her colleagues regarding CCSVI, liberation (and also their experiences with LDN).
5. When she goes to Europe, she intends to set up a meeting with one of the Polish centres that are doing the liberation procedure.
6. With regard to things like LDN and CCSVI, it's not surprising that big research money is slow to come, because those aren't treatments that will produce profits for the biggest funders of medical research in North America, the drug companies.
7. Many neurologists are not against giving the CCSVI theory a good and fair investigation, but it is hard for an "ordinary" neuro to go up against (or even question) their colleagues who are the big-name MS neuros in Canada.
8. In New Brunswick, at least, open-minded neuros are quietly discussing the possibility of doing more regarding CCSVI (especially follow-up on "liberati") with interventional radiology and vascular specialists, but these others don't see that we have the technology or human resources in the province (except perhaps in Saint John) to do a credible job of that.

A really good meeting, and one that should give hope to others who have found their neuros less receptive, or at least openly so.
Dx SPMS in 2004.  Liberated 29/04/2010.
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Postby hannakat » Wed Sep 22, 2010 1:59 pm

You don't have to tell the neuro about it if you feel there is a conflict. I haven't told mine that I plan on being tested/treated for CCSVI because in talking to his secretary earlier in the year, I found that he is not supporting it. He doesn't have to.

My psych doctor doesn't hear everything my PCP, neuro, OB GYN, opthamologist, etc has to tell me...I feel no need to tell all of them everything when it isn't their 'specialty'. But then again, I have no problem keeping things to myself.

Why cause a possible problem for yourself if you're worried about it? Vascular and neurology are 2 completely different fields. If the neuro notices things, hip hip hurray! The neurologist has no information that can help you with the vascular outcome of CCSVI and there is no solid information about the future course of this. Find a good vascular doctor to discuss the outcome changes with. Good luck and hope to hear that you're healing!!!

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Postby sou » Wed Sep 22, 2010 3:37 pm

For me it has worked the other way round. It's me who does not want to see the neurologist.
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby Cece » Wed Sep 22, 2010 3:43 pm

hannakat, I think that is excellent advice that I will be following.
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Postby Donnchadh » Wed Sep 22, 2010 8:47 pm

I had a particularly satisfying experience with my neuro today, which I am savoring. I called up this morning to cancel my upcoming office visit, giving the reason that I was mis-diagnosed. The receptionist said OK; she would cancel it and asked if I wanted to re-schedule it later. Realizing that she didn't grasp my point, I just said no.

Later on today, I got a call from the neuro's office asking me about what I meant by misdiagnoses?

I told her that I had "CCSVI" -- which she had no idea what I was taking about. I spelled out CCSVI and told her that I had a venogram showing that I had bilateral stenosis in the internal jugular veins. Also that I was on a waiting list for an Interventional Radiologist for a venoplasty.

She meekly said "OK" and goodbye.

Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!
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Postby MrSuccess » Wed Sep 22, 2010 10:24 pm

Donnchadh - as nice as it seems to be able to say and do what you did ... I would be concerned about burning some important bridges .

While I agree that the Neurology people have not reacted to CCSVI very well ...... we must remember that CCSVI has some BIG players in this profession , on your side.

Such as Dr. Salvi ....... who is on Dr. Zamboni's CCSVI team.

And the Buffalo CCSVI - MS study investigators .... Drs. Zivadov & Bianca-Weinstock [ hope I got their names spelled right :wink: ]

And Dr. Hubbard ..... of course .

I would venture a guess .... many more who privetly support CCSVI investigation . If for no other reason ..... than to dispel the theory .

It is my understanding that Mrs . Zamboni continues on with her DMD and no doubt is still under the care and guidance of a Neurologist .......

Like Dr. Zamboni has reminded everyone ...... this new idea - CCSVI - will require everyone to work together ........ to get the answers .

What could it hurt to call back and take that appointment ?

You may actually help CCSVI advance in the medical world .

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Postby Donnchadh » Thu Sep 23, 2010 6:39 am

What would it hurt?

First of all the last office visit, admittedly an extensive one, cost $1,000.00.

He ended up with the standard "there's nothing that can be done in your case" speech. When asked, he condescendingly explained that "MS" is an autoimmune disease and my neck trauma was just a coincidence that at most was "a trigger event."

Why in the world would I want to waste any more money or time on a dead end?

Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!
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Postby MrSuccess » Thu Sep 23, 2010 11:31 am

Donnchadh- that condescending attitude seems to be par for the course ... more often than not . And to pay a grand to get it .... :twisted:

Fortunately ..... many others give neuro feedback ..... as being positive.

Now that CCSVI has some wind in it's sails ......... it will be a very difficult path to follow .... WITHOUT ........ stepping on toes.

One must remain pleasant .... yet firm ..... when dealing with health care providers. Some people naturally ..... have this skill / ability.

I think with practice ...... it can be learned. :idea:

Watching Dr. Zamboni's reactions and responses to CCSVI questions posed by those questioning the validity of his CCSVI theory ...... is a very good template of how to conduct yourself.

The answer is ...... know your stuff ......... and counter punch ...... but in a polite intelligent manner . Sort of like '' Columbo '' :wink: :idea:

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