First time seeing neuro since treatment

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

First time seeing neuro since treatment

Postby magoo » Fri Apr 23, 2010 12:28 pm

Today I attended a Biogen sponsored "Living Well With MS" luncheon and the featured speaker was my neuro.
My neuro was not receptive to CCSVI when I first gave him all of the info from Zamboni's papers. I went ahead and had the treatment, which was very successful in my case without his support. I haven't seen him since treatment six months ago, but he does know I had it done.
I was curious to see if he would talk about CCSVI, although I doubted it. I did want to be there to speak up in case there was any misinformation given about CCSVI. My sister went with me, and as we walked in my neuro ended up walking right in front of us.
He stopped and hugged me and said I looked great. It was a bit awkward and I wondered if he would mention anything about CCSVI. He did, he asked if I was still on Coumadin. I told him I wasn't and added I am not taking any of the numerous medications I was once on. (which he prescribed) He told me he thought that was great and had a shocked look on his face. I told him I was there to hear him speak and he joked about not boring me. I noticed him watching as I walked away IN HEELS, probably shocked that my balance and strength were so good!
His presentation was very respectful and didn't include CCSVI. We were given the opportunity to write questions on cards which would be answered at the end of the meeting. I asked about CCSVI. When this part came, I waited to see if CCSVI would be mentioned. He answered a few general questions and then he said, "well I knew I wouldn't get away without addressing CCSVI". He explained the theory correctly, mentioned Zamboni, and suggested everyone go to the NMSS website to get more information. He discussed the common use of stents in practice with strokes and mentioned the adverse events which happened at Stanford. I wasn't upset because he gave the "negatives" on all of the therapies he discussed. He didn't make it sound bad, he actually said it was a theory which required research. I was very pleased. He also made the comment that in five years everything may be completely changed about what we know.
I now think I can share my experience with him when the time comes. I think he is open to taking the research as it comes and giving it consideration for his patient's sake. I am very pleased and happy I went today!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby dlb » Fri Apr 23, 2010 12:38 pm

Good for you magoo. I'm sure it was very therapeutic for you! It is going to catch on. I'm pasting a blog from a doctor, who had an AH...HAH moment & he writes of his perspective & actually seems to be pitching for the treatment of a known abnormality while taking MS out of the equation... it will come! Stay well! High Heels - I'm so happy for you!

http://healthblog.ctv.ca/post/Why-gover ... ation.aspx
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Postby bluesky63 » Fri Apr 23, 2010 12:56 pm

You must have felt great being able to show living proof that this is not a hoax but a valid medical treatment with lasting, verifiable effects. It's wonderful that the neuro is being fair. It's so emotional reading your experience -- I have imagined what it will be like to present myself to various professionals looking "good" and being able to also say, "Look -- it's no hoax!" I am so happy for you and your family. Bravo for taking the chance and being the courageous pioneer, and for continuing to speak up! :-)
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Postby ozarkcanoer » Fri Apr 23, 2010 1:23 pm

magoo,

I wish you could come to MY neuro's talk next Tuesday !!!

Next Tuesday, April 17, I am going to a talk by my neuro. I haven't yet had testing or a procedure for CCSVI, but I have been inundating my neuro with information about CCSVI since last fall. When he got home from AAN he emailed me and told me that he talked to Dr Zamboni one-on-one !! I think he is still a fence sitter and very skeptical. But he did say he was going to talk about CCSVI at his presentation next week. He did clinical trials on Fingolimod and I'm sure he will talk about that. I never go out in the evenings anymore because of my fatigue and pain. But I am determined to go just to see what he has to say !

ozarkcanoer
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Postby CRHInv » Fri Apr 23, 2010 2:36 pm

Woohoo! A wonderful way to start a Friday! I love the high heels part!
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby zinamaria » Sat Apr 24, 2010 12:29 am

Magoo,

Thank you so much for this post! YOU ARE THE RESEARCH is what I thought after I heard the mild response your neuro has had to CCSCI. But that you felt good about the entire thing is really great and even if slow, the train is still moving! I am jealous, I have to say, at your mention of high heels, Oh I do hope to be wearing them again myself..and you sound terrific and positive which is so utterly encouraging. I thank you again for continuing to update all of us still waiting for Liberation...it really helps to have living proof...some placebo...

peace,
z
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Postby Badger » Sat Apr 24, 2010 2:24 am

I have been back from Poland for 4 weeks now, afer being liberated. I had an appointment for blood samples to be taken on Wednesday, in my Neuros hospital. I never spoke with my neuro prior to going to Poland, I only called the hospital to tell the nurse that I will not be coming back for my treatment, which was Tysabri. My last infusion was on February 15th.

I was sitting in the waiting room, expecting the nurse to call me to take some blood and my neuro came out and called my name. I went in and told him I have been to Poland, he replied "I have heard". He appeared slightly annoyed and he then said " If you had spoken to me prior to going, I would have advised against it as it is only a theory and there is no evidence to support any of the claims" I stated that there has been trials and began to rhyme of all of the names of the Dr's involved in the trials. This left him speachless for a few seconds before he took me to have a look at me.

After doing this I sat down with him again and he never commented on how I was. Normally he will explain if he thinks I have improved or that I am worse, not this time.

I told him that I will stay off Tysabri and he stated that Tysabri will still be in my system. This is despite the fact he has told me previously that Tysabri will stay in your body for 6-8 weeks. He wants us to believe that we need the drugs!!

I know for a fact that I have improved and he knew this but could not admit it, shame on you!!!

He would have known that I went to Poland as the nurse would have told him but I have also been in the newspaper here in Glasgow, so it would have been rewarding to see him squirm when he read this.

:wink:
<em>Badger
RRMS 2004</em>
Appt Katowice 23/24th March
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Postby ClaireParry » Sat Apr 24, 2010 3:12 am

And walking away in killer heels!!!!!! Ahhh, those were the days LOL

Sounds like a good day. Well Done x
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first time seeing neuro

Postby aliyalex » Sat Apr 24, 2010 7:21 am

i think most of the neuros are well meaning, just misdirected by faulty research and big pharma. it is important to give them the benefit of the doubt. hopefully they will come around. maybe it is not our timing, but such is how things shift into new paradigms.

for many of us we dont have the luxury of time. i know i dont.

nonetheless, we need to keep our eyes open and keep being the pioneers. i suspect if magoo didn't go to the talk, ccsvi would have never been mentioned. we need to keep "showing up" as many of you couragously report doing and planning.

i loved that statement-we are the research. so true.

then there is the smaller percentage of neuros who are not well-meaning. we can't and wont be stopped by them. if ccsvi continues with the same promise we see now, these entrenched mean-spirited ones represent the death throes of the old paradigm. not a pretty sight, but necessary.

i cant go to rallies, conferences anymore. i can't get out of my chair myself. but i can see the process from a larger perspective and I CAN GET LIBERATED.
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neuro

Postby elyse_peace » Sat Apr 24, 2010 9:15 am

Magoo -
Congratulations! Well done. It is great to hear how well you are doing. Well enough to go to a luncheon AND speak up for CCSVI, AND in HEELS !!!
It is great to feel hopeful. I have lost the ability to walk unaided in the past two years, and I only go out to go to the doc and PT. This after a life of hiking daily. Oh, to be LIBERATED ! It's so good to have an option.
Keep up the good work and thanks for your pioneering spirit.
:)
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Postby zinamaria » Sat Apr 24, 2010 10:05 am

"well I knew I wouldn't get away without addressing CCSVI".

What disturbs me most about this statement is this: Why would he want to get away without mentioning CCSCI?? I would want to say, You bet you can't get away without addressing it!!
One more time, Magoo, good for you, for your determination, for your effort on behalf of all of us, for you are the living proof...what more could a doctor want?

z
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Postby zinamaria » Sat Apr 24, 2010 10:06 am

oops. CCSVI...

z
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Postby Katie41 » Sat Apr 24, 2010 12:42 pm

Rhonda,
What better proof than a lady in high heels!!! :D :D :D :D :D :D

Badger,
Or a guy able to look up at the sun without falling over!!! :D :D :D :D :D :D

Ginger,
Or a gal riding her bike without falling off!!! :D :D :D :D :D :D

Or all the others who now live normal lives: play in the park with their children, run in the backyard with their dogs, feel their fingers and toes, sit in the sun, and a myriad of other everyday living life activities!!! :D :D :D :D :D
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Postby Sharon » Sat Apr 24, 2010 1:03 pm

Rhonda -

What a great story! Not only about you and your high heels, (whoo, hoo!) but about your doctor and the fact that he is actually able to say the letters CCSVI. If we go back to your posts from nine months ago, this would not have been the case. I also appreciate the fact your neuro was balanced in his talk about the other therapies. It will take time before CCSVI is listed along with the DMT's --- we are getting there -- it has been a learning process for all of us.

Thanks for taking the time to advocate for CCSVI!

Sharon
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Postby magoo » Sat Apr 24, 2010 2:24 pm

Thank you for all of the positive feeback!
I have to say it is soooo nice to be able to walk with confidence in heels again. I had to dust them off!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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