I am going to Stanford!

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

I am going to Stanford!

Postby CRHInv » Thu Oct 15, 2009 7:19 pm

Well, I have dates. I am going to be at Stanford November 9th and 10th. I have been pretty nervous, but when Darcy gave me the dates, I found myself relieved. (Yep, that's right, Dr. Dake has more help! She said she was new because they were so busy! No one here would have predicted that, would they?)

I am meeting with an internal medicine doctor on November 4th. This name was given to me by the lady I met walking my dog who's husband is an intervential radiologist. Anyway, they didn't want to see any new patients until December, but I told her he might just find this all pretty interesting and gave her a brief idea. She checked with him and I got an appointment! Yeah!

I also called my neurologist today. I asked his assistant if they had ever heard about this, and the answer was no. I told her I would print some stuff out and bring it in, but she wanted it quicker and asked me to email it. I did and I got a call a couple of hours later from my doctor. I was pretty nervous. I really like this guy, he is so smart and so kind, I really didn't want to lose faith in him. Guess what, he is open to it! I told him I was so pleased and he just told me he is a researcher also and you must have an open mind. He has the nicest way about him and a really charming Italian accent. He was cautious, but so open. I was worried he would say I was crazy, but he said that this (Dr. Dake) is not a crazy man and wouldn't do anything that didn't need doing. Awesome!

I feel like I should celebrate, but I think I will just lay down. MS sucks.

Beth
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Postby bestadmom » Thu Oct 15, 2009 7:29 pm

Yeah! Fabulous news. I'm happy for you. MS won't suck much longer for you, and hopefully for everyone.
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Postby Jamie » Thu Oct 15, 2009 8:14 pm

That is great! And good on your neuro, hopefully he'll see the benefit in you and have his curiosity piqued!
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Postby mrhodes40 » Fri Oct 16, 2009 8:04 am

Beth I am happy for you! ANd really pleased that you seem to have a good medical team on your side. :D :D
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Arcee » Fri Oct 16, 2009 8:39 am

Beth, congrats! I agree with Marie that it's great you have a team in place. I really have benefitted from the support of my PCP (and she is out there advocating now for CCSVI with all the neuros she knows) and the clear-headed thinking of my neuro. Best of luck with everything moving forward.
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Postby CureIous » Fri Oct 16, 2009 9:10 am

Super! Were you the one on the telly when I was getting my follow up? Just curious. Mark
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby catfreak » Fri Oct 16, 2009 10:59 am

Cool Beth!!!

Too bad you aren't going the week before while I am there!! I really want to meet some TIMS/CCSVI folks.

Not long now and you will know. Take care.

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby CRHInv » Fri Oct 16, 2009 12:19 pm

Mark, I might just have been the one on the phone. I know you were there while I was talking to them, and it occurred to me to say 'hi' but I can't remember if I actually went through with it. My short term memory is shot. I was thinking of you though!

Cat, I know! I saw your date and thought the same thing! I can't wait to hear how your appointment goes.
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Postby Sharon » Fri Oct 16, 2009 1:29 pm

Woo, hoo Beth! Good for you. November 9th will be here before you know it.

So now we have Angela, Alex and Darcy - can we call it the TIMS Stimulus Package? :wink:
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Postby CRHInv » Fri Oct 16, 2009 6:55 pm

So now we have Angela, Alex and Darcy - can we call it the TIMS Stimulus Package?


Love it!
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Postby CureIous » Sat Oct 17, 2009 12:12 am

CRHInv wrote:Mark, I might just have been the one on the phone. I know you were there while I was talking to them, and it occurred to me to say 'hi' but I can't remember if I actually went through with it. My short term memory is shot. I was thinking of you though!

Cat, I know! I saw your date and thought the same thing! I can't wait to hear how your appointment goes.


Yeah, Darcy said someone was on the phone with her but I told her not to tell me lol. At first I thought she meant someone was IN the office when I was there. Then it all made sense. That's cool though, you were on the phone and I was high fiving everyone there! Okay wasn't high fiving but almost! I told her don't worry about it, we already know everyone on here anyways!

This is probably the oddest thing any medical study has seen, something so new and breaking, merging with the internet, sometimes to the good, and sometimes to the bad, insofar as secrecy is concerned! Genies out of the CCSVI bottle! So great to see many new stent-o-teers are on here.

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby magoo » Sat Oct 17, 2009 9:06 am

Fantastic Beth!!!!!!!!!!!!! It will be great:):)
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 SammyJo » Sat Oct 17, 2009 1:56 pm

Congrats on getting your appointment at Stanford!
I'm glad they have more staff for patient coordination.
I have my appointment 10/27.

Consider adding your experience to the CCSVI Tracking project.

It is a good idea to take the MS disability evaluations before you do the procedure, so you capture your status objectively beforehand. We have some questionnaires for generating scores on your MS status, thus numerical measures that make it easier to assess our progress as a group. This way we will have a TIMS CCSVI 'snapshot' that shows the changes over time.

This tracking project is helpful to other patients who are trying to decide if they should pursue treatment, and also to physicians who are following CCSVI.
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Postby CRHInv » Sat Oct 17, 2009 2:02 pm

Will do!
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Postby ErikaSlovakia » Sun Oct 18, 2009 12:22 am

SammyJo wrote:I have my appointment 10/27.


Great, Great, great!!! :D
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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