meet and greet at the Sheraton

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

Postby CRHInv » Fri Nov 13, 2009 10:45 am

Hey Lew!!! Amazing story!!! It is all great. You get busy with life again and just keep letting these improvements 'sneak up' on you. I think that will be just great!!

Casey and I are getting ready to leave the Sheraton and take the train to the airport. This has been such an adventure.

Mark and Brenda are breaking out of the hospital this morning. Hopefully they will get back here before we leave. They truly are amazing and inspiring. I am going to go home and work on my garden, especially after I can lift more than 10 pounds!

I spoke with Sharon's daughter for a minute this morning. Super nice and energetic. I think she is meeting with Dr. Dake this morning.

I have not found Coach. I don't have any numbers or such. Coach, if you guys are reading this, I am sorry I missed you. I will pm you my numbers just in case we can still overlap. I hope things are going well for you.

Well this has been an amazing trip for me. I had big expectations, but just for the procedure. I had no idea there would be this whole other facet. You guys are all amazing and thank you for your support and friendship.

Take care everyone!
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 Rokkit » Fri Nov 13, 2009 12:23 pm

I didn't realize Dr Dake had a new plan for skydog. Did he figure out why the re-stenosis? Or is he just going to fix the new ones and see what happens? Maybe this is private and mark will post what he wants about it later which is totally cool, I just hadn't seen it mentioned yet so I'm real curious.
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Postby Sharon » Fri Nov 13, 2009 1:41 pm

Hi everyone!

Just received a call from my daughter --- Dake said she does not need any further stenting at this time. WOOPIE!!

Celebration tonight!!

Sharon
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Postby CRHInv » Sat Nov 14, 2009 6:39 am

Sharon, I am so glad!!! I was wondering what she found out. This makes my day.

Rokkit, I can't wait for Mark to post. I think they were going to start on their way home today, but take it slow. We might have to be patient.
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 Sharon » Sat Nov 14, 2009 8:34 am

Beth - Hope your trip home was easy. Thanks for giving Carrie a call. She enjoyed talking with you. She could not believe that you were having such an easy time --- I had to remind her that location of the stents is the key factor.

Take some time to heal .....yes, even you, the young mother, needs to take time off for herself!

Take care,
Sharon
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Postby CRHInv » Sat Nov 14, 2009 9:26 am

I am going to take it easy, or at least try. My husband just told me we are having company tomorrow... and I have been gone a week... leaving my dad and my two boys here on the loose... YIKES! I will try to remain calm and just let things be... oh my.

I wish I could have met Carrie and her family. I am really curious about her story. We are probably pretty similiar, except I have had one big episode. Not everyone will 'get' us... but I think we did the right thing. I have tried to find what you have posted about her, but I have always ended up bopping down some other rabbit trail before I tracked it down. Let's see if my new hdtv powers can keep me on track.

:D
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 radeck » Sat Nov 14, 2009 10:43 am

Mark (skydog) just called from the road up to Oregon and told me that I should let everybody know that he's doing well. He had surgery on Thursday to get two more stents in the mid neck area. I asked if Dr. Dake had explained to him why these problem areas weren't seen previously, and he said that they were seen but weren't as pronounced. Mark says he will post more after getting home and settling in.
Last edited by radeck on Wed Jan 20, 2010 6:15 pm, edited 1 time in total.
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Postby mrhodes40 » Sat Nov 14, 2009 11:31 am

Now that's some good news bout Mark, Thanks Rad!!

I can't wait to read his post.........GO MARK!!
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 Loobie » Sat Nov 14, 2009 11:34 am

Go brother!! Can't wait to hear from you.
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Postby ozarkcanoer » Sat Nov 14, 2009 11:49 am

All this good news keeps me going !!!!!! Thanks radeck for the good news about skydog !!!!!!!!!!!
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Postby Sharon » Sat Nov 14, 2009 12:43 pm

We can finally breathe a sigh of relief for Mark. He has had a tough go of this. Glad to hear he is feeling well.

Sharon
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Postby Rokkit » Sat Nov 14, 2009 2:59 pm

That is fantastic news!
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Postby Arcee » Sat Nov 14, 2009 7:45 pm

Oh, that is wonderful! Mark's story all along has been captivating and inspiring. Hope all he best going 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 bestadmom » Sat Nov 14, 2009 8:01 pm

I can't wait to hear from Mark and hope this did the trick.
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Postby skydog » Sat Nov 14, 2009 9:45 pm

Hey everyone, We are over half way home and have stopped at our favorite place to stay on the Oregon coast. Long drive and it is late so I will have to keep this short. I am doing great! High hopes for the future! The short story is we fixed something that needed fixed the first time but really did not show up that well. Dr. Dake did a bit of detective work to figure this one out. We are truly blessed to have him. What a beautiful person! Peace and Health, Mark
Plant a BIG Garden Live in the Moment
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