Palo Alto 1/20 to 1/22!!

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

Palo Alto 1/20 to 1/22!!

Postby CRHInv » Fri Jan 08, 2010 12:04 pm

I am going back to Palo Alto for my two month check-up! Skydog is also going to be there. Anybody else going to be around?
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 fogdweller » Sat Jan 09, 2010 2:29 pm

Is Stanford still doing stenting? Is this Dr. Dake?
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Postby CRHInv » Sat Jan 09, 2010 8:59 pm

Hey Fog, No Stanford is not doing stenting right now, this is for a two month follow-up appointment with Dr. Dake. I had the procedure done two months ago tomorrow. It was amazing to meet with others then that were doing their follow-ups. It would have been fantastic to get to meet with others there to have the procedure this time. Oh well, hopefully that will be in others future.
Beth
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 magoo » Sun Jan 10, 2010 4:54 pm

Wow Beth, it's follow-up time already??!! It will be amazing. It is so different this time with all of the new energy:) Dr. Dake will want to know everything.
Best of luck and let us know how it went.
Rhonda
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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 Sharon » Sun Jan 10, 2010 8:16 pm

Wow, Beth!
Two months -- have they really gone by that fast? It seems like a few weeks ago and you were talking to my daughter when she was back for her follow-up. Good luck to you - safe travels.
Hope you or Mark or Sammy Jo are able to update us on the status of things at Stanford.

Take care,
Sharon
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Postby CNClear » Mon Jan 11, 2010 8:34 am

Beth,

Really glad to hear how well you're doing!

SammyJo, you're website has been a real help, I've given out the address a few times, especially to the docs at Kaiser...

If you would, please, try to find out from Dake where the rest of us stand with regard to the study, getting the procedure, etc. I know they are extremely busy, I don't want to bug them so I am 'patiently' trying to wait to hear from them, but since I haven't heard anything at all since meeting with Dake, I am trying not to worry. Dake told me that I would be "...first in line for the procedure..." since I thought I would be getting it, while I was there...just getting ansy, I suppose; and am tired of feeling so lousy all the time. I was hoping to be able to be productive by now...sigh...

Sorry for being so down, I'm almost ready to add my name to Simka's list (just in case) It's hard for all of us to wait, let alone try to stay upbeat while running out of patience...

Any info you can gather for us, would surely be appreciated!

Wishing you all a good trip and great results...

Lisa
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Postby CRHInv » Mon Jan 11, 2010 11:30 am

I will see what I can find out. If you guys have anything specific, let me know and I will put it on my list and see how far I can get. I could tell from Alex last week that she really wants to be able to call you guys. I can't wait for someone to post that they have been called. This place will go crazy!!! Lisa, what if it is you? Isn't Sport at the top of the list too? Sorry, I can't remember exactly who it is. I can't wait to hear it though!
Beth
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 SammyJo » Mon Jan 11, 2010 12:30 pm

CNClear, I will be asking what others can do, for sure. I will post whatever he says can go public.

So far this is my list of questions, if somebody already got this from him, let me know.

1. How do I tell if I need to do the daily baby aspirin, is there a blood test like INR?
2. After 2 month MRV and 1 year MRV, what is the plan is after that?
3. What is a reasonable outlook, how long will stents last, patency etc.
4. How would I know if the stents start to break down?
5. My MS doctor isn't happy about with me pursuing ccsvi. What other type of specialist should I work with? Vascular, stroke rehab, spinal cord injury? Or is a good physical therapist all I need?

Questions other patients are asking:
1. When will they hear if they've been selected for Stanford trial?
2. If you received a Haacke diagnostic MRV report, is that equivalent to your MRV for diagnosis?

Any other specifc questions?
RRMS '95 SPMS '02 | CCSVI 10/09 | Adult stem cells 2012 | http://www.patientsforstemcells.org/
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Postby CRHInv » Tue Jan 12, 2010 7:02 pm

Sharon - I guess this two months has gone pretty fast. It sure was better than the two months before it! I am ready to get off these blood thinners though. That INR testing is for the birds. I hope your daughter is doing well!

Sammy Jo - Your list of questions looks a lot like mine! I can't wait to hear what you find out. Take care and safe travels!
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 CRHInv » Tue Jan 19, 2010 6:05 am

Okay! I am leaving tomorrow. Skydog should be on his way. Anybody else?
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 Rose2 » Tue Jan 19, 2010 8:07 pm

Beth,
Have a good time! Enjoy it this time around!
We are supposed to have one heck of a rainstorm here tomorrow so be a careful driver.
I would love to come visit but I have tons on my To Do List!!!!
I am soooo happy every day now I can't get the grin out of my face!
My husband just stares at me in wonder.
I have planned and am giving my husband a birthday party this weekend.
Yep! I haven't done that in 10 years, or more!
Tell everyone at Stanford Hi for me! Sincerely, Rose
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Postby CRHInv » Tue Jan 19, 2010 8:45 pm

Hey buddy! If that to-do list gets lightened up you better come see me! Wow, a birthday party. I remember how much work that was last time I did that. That is really nice (and ambitious) of you. I will say hi to everyone for you!
Keep grinning and take care,
Beth
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 magoo » Thu Jan 21, 2010 6:41 am

Hey Beth,
Did you arrive safely? Keep us updated. Best of luck and enjoy your visit with Dr. D!
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 Rose2 » Sun Jan 24, 2010 6:15 pm

Hey Beth,
Did you go? Are you home? How did your MRI/MRVs look?
Did you get caught in that torrential rain we had. My gosh it was alot.
Can't wait to hear your reports! Sincerly, Rose
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Postby CRHInv » Mon Jan 25, 2010 5:29 pm

Okay, my daughter and I are back from my two month visit with Dr. Dake. Sorry it took me so long to post this. Really, the computer at the Sheraton 'ate' my first post. Anyway... everything went great, super great. We got to visit with Alex beforehand. She is really terrific. She is still very excited about helping all of us, but it has really turned into a big job. She seems to just keep moving forward.

Dr. Dake thought my MRI looked better, although he was hesitant, like he didn’t want to get my hopes up, and wanted to see what the neurologist (?) said.

We talked about my improvements that I have shared here already. I have had one more improvement that I don’t have in the tracking thread yet though. It is one of those that really crept up on me. For probably 15 years or so my feet have been stiff in the morning. They didn’t really hurt, but they needed to loosen up for five minutes or so before I could walk normally. I just noticed last week this is gone! I didn’t even know this had anything to do with my MS.

I got to see the films Dr. Dake has of my procedure. This was super interesting and it is nice to know more. He had told me that I had a very large collateral vein routing the flow around the abnormal valve on the left, over to the right side, but I had no idea. That thing was huge! The pressure gradient had been 4. He showed me the new MRV. I could see my stent, 12x28, right where it should be, and the flow was all good. So, I am off the warfarin and will continue on the Plavix and aspirin daily. I think the Plavix is for six months and the asprin is for life.

Okay, the rest of the trip. My daughter and I got to visit with Skydog and his friend. That was really fun. It was raining pretty much the whole time we were there, but it wasn’t too bad. I had bought rain coats for us… really, we live in Arizona, so we don’t even own real raincoats! Since we just use the Caltrain and the Stanford buses when we are there, we spent a good amount of time walking around in the rain. It was nice to spend the time with her doing something different than we usually do, although you can be sure she found the time to get to Palo Alto Mall. If you go, that place is amazing. It isn’t the fanciest mall building-wise, but the merchandise is really something. Dr. Dake had said he would like another update in a year, but maybe we could get it taken care of close to home and send him the information. My daughter let him know we would be back. She loves that place!

Okay one more thing happened today. I had cancelled my six month visit to my neurologist before my trip to Palo Alto. At that time the office assistant had told me that more patients had been inquiring about CCSVI. Anyway, the normal wait to get an appointment is many months. I called today and left a message that I had my scans and would like to come in. Guess what??? I got a call this afternoon and they scheduled me in a cancelation spot for Wednesday morning. I think they are interested, don’t you?

Take good care everyone!
Beth
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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