meet and greet at the Sheraton

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

meet and greet at the Sheraton

Postby Loobie » Wed Nov 11, 2009 10:16 am

What a good day yesterday. I got to sit down with Mark (skydog) and Oliver (Radeck) and their families. It was absolutely awesome to sit down and talk face to face with people who are going through the exact same thing. And what wonderful people. I think we talked for 2+ hours but it felt like ten minutes as everything you wanted to say gets washed out with enthusiastic greetings and warm feelings and before you know it, you're just bs'ing with friends. It was great to meet you guys and Oliver I have to say that your baby boy is flat out one of the most beautiful and well behaved 8 month olds I have ever seen. I couldn't quit staring at his 'Siberian Husky' eyes. Watch out for that guy, he is going to be a real heartbreaker.

And Mark, your spirit is the big thing you come away remembering; just as I'd imagined from all your posts. I just had a great time and I hope we can see each other again today. It was a beautiful fall day in NoCal yesterday and we hung out by the pool until we all got too chilly. What a great day.

And then it was on to the medical center to meet Beth (CHRInv) and fam. Once again, salt of the earth people. We are just all so cool.

So now it's off to get my check up for round 2. Let's hope it went as well as round 1's check up went. :lol: ! It was great meeting you and Pat and KC. You've got a great family there. And then when Dake walked in and was like "what are you doing here?", it was awesome. I think he knows how much we are all pulling for each other and supporting one another. Just a great day all around.

So now I go back in the tube in a couple of hours. Let's hope the round 2 stent took like the first two. I am hoping he doesn't have to go in and 'clean up' or anything. My INR was so stable this time except for one time at the very beginning, but it was never low, so I hope that means that what was supposed to happen, happened.

We are definitely a crew, and no matter how all this turns out, we need to have a reunion at some point. There is just too much we have gone through seperately together! So it's a dreary start to the day today, nothing like the blue skys and shorts weather of last time, but it's all good.

And lastly Mark, I sent you much good juju last night that Dake is able to fix you up. You are a very vital, outdoorsy dude and I just hope you can get fixed up. Seeing that glimpse initially after last time leaves me hopeful that maybe Dake's accumulated knowledge to this point will allow him to see it like he's seeing something he knows what to do with. Let's hope for hang gliding in the future and hopefully you don't have to go to that happy place this time when they're in your head!
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Postby Loobie » Wed Nov 11, 2009 10:18 am

OK, misplaced smiley alert! I am not used to laptops and my smiley was supposed to be after "we are just all so cool :lol: ".
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Postby Sharon » Wed Nov 11, 2009 10:35 am

Oh, how much fun! When I was reading your post Lew, I was in a spot of envy --- it is great that you all had a chance to meet each other -- finally able to put a real face to the picture. Cheers to you all for taking the time.....when do we start planning the reunion? I wonder if Dake could do a group one year follow-up--hmm? :roll:

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Postby CRHInv » Wed Nov 11, 2009 11:52 am

Ok you guys, if you hang out anymore, call me! I'm back at the sheraton and I would love to join you. I think Lew and Mark have my number, radeck,I'll pm you!! 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 mrhodes40 » Wed Nov 11, 2009 11:56 am

Man all the cool kids went to Cali this week........... :lol:

My heart is with you all
marie
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 » Wed Nov 11, 2009 12:32 pm

Beth, I'll be callling you for a dinner date tonight . I won't get done unitl about 6:00 or so, I'll keep you posted, but my host family will be at the King Tut exhibit in San Fran., and they won't be home until later. I hate to eat alone! So I'll be calling you before I go see Dake which should be about 4:30 or so. I loved meeting your family, me and your husband are cut from the same cloth I believe!
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Postby CRHInv » Wed Nov 11, 2009 1:52 pm

Sounds great! I want to hear what Dr Dake had to say!!!
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 CureIous » Wed Nov 11, 2009 2:04 pm

mrhodes40 wrote:Man all the cool kids went to Cali this week........... :lol:

My heart is with you all
marie


Seriously, got half a mind to jump in the car for an impromptu follow up! :)
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 radeck » Wed Nov 11, 2009 3:03 pm

Lew, thanks for posting! I (and my wife) had a great time yesterday, and felt privileged meeting you two amazing human beings and also Mark's lovely wife Brenda. The two later showed us photos and movies of their beautiful home and surrounding area in Oregon on their laptop. I second Cureious in that I was thinking about taking another day off to hang out more and also meet Beth and Sharon's daughter :roll:

Meanwhile I'm thinking often about your guys follow-ups, that Dr. Dake sees a way forward for Mark.

And thanks for the compliments to our son. We have people going crazy over him so frequently, perhaps we should have gotten into modeling for some organic baby clothes or something like that :wink:
Last edited by radeck on Fri Dec 18, 2009 10:43 pm, edited 2 times in total.
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Postby CRHInv » Wed Nov 11, 2009 5:01 pm

Radeck-Sorry I mssed you guys! It really would have been great to meet you all.

Sharon-I would love to meet your daughter if she has the time. I think I had pmed you my number.

Just spent some time at the pool with Mark and Brenda. Amazing people! This has been an amazing trip in so many ways! Who would have thought?
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 » Wed Nov 11, 2009 5:25 pm

Beth - check your PM's

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Postby Sharon » Wed Nov 11, 2009 5:42 pm

Hey, Sheraton party people --- I think Coach is hanging around there someplace. She was supposed to have testing done today and procedure tomorrow. Lew have you heard from her?

Sharon
Last edited by Sharon on Thu Nov 12, 2009 7:05 am, edited 1 time in total.
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Postby Loobie » Wed Nov 11, 2009 10:39 pm

I did see Ledell (her :lol: ) today. They were staying about 6 miles off campus at another hotel. I had talked to them actually in the waiting room outside MRI. We really didn't spend too much time after I was done at the Sheraton as Mark had a 7:00 appt. Me and Beth and her daughter hung out for a little bit, but yesterday we got to spend some great time together.

Dr. Dake told me I am the "poster child" for what he wants the stents to look like. He basically told me that there was nothing else he could do for me in terms of drainage and I'm "opened up big time". So now I can go back and try to hit the exercise a little harder. I did feel good today. I accidentally walked WAY more than I intended and did fine. For some reason I left my schedule at home. So since I'd done it all twice already, I just went after MRI to get my blood drawn. Well as everyone whose already done this knows, that is on the first floor, but way off to the left of the entrance. For some reason I thought it was on the third floor. So I go up and walk all the way down to the end and that was the ultrasound lab! So I go all the way back to the elevators, go down one floor and walk all the way down to the end again. Well that was the Children's Hospital! So I did it all again and finally remembered that the blood draw was on the first floor. So I walk all the way down there only to find out I wasn't scheduled for that! At least the doors to Dake's office are down on that end. Oh and I forgot. The ladies at the information desk sent me down to Occupational Health for my blood draw after I had screwed up twice, and that's on the other side of admitting! So I would imagine I walked about a mile. I wasn't loving it when I was done, but I didn't do bad at all. So I'm happy about that.

I talked at length to him about Dr. Haacke and he says "he is the man", so I'm real excited to get that done mid-December. Dake is going to Manhattan sometime very soon to meet with another interventional radiologist that will be in cahoots with Haacke. Pretty cool. Not sure what Ill get out of it, but if nothing else I'll do it now and then 6 months from now and see if my iron level is getting 'washed out'. All in all a great trip. I was really using this as a marker for my ability since there is so much walking involved. I didn't think I'd do as well as I did which tells me my expectations are outpacing my reality. In other words, I'm getting better in my walking, but since my expectations are so high, I don't notice like I should. Dr. Dake could not stop telling me how good my gait looked compared to last time, and this was after my marathon "quest for phantom blood draw". So if you read my blog you'll see maybe why I still look at this as all still being full on there. I still guage myself off of a healthy baseline. That is so self defeating. I'm working on it, but I really would like to get healthy enough to run again. Maybe, maybe not, but I can't just ignore what everyone else is telling me. Maybe it's just because my legs still hurt and get tingly, and to me it hasn't 'worked' until that goes away. Well that would be all the way back to healthy, and I kind of doubt that will get to that point.

My shoulder is feeling better. So in true Lew fashion, I plan on kind of pushing it, but I'm going to stay at that level for as long as I can. I have always stopped and reversed course back to easy because it hurt too bad. I'm going to give it a shot. I'm going to work to a sweat for an entire month, of course if I'm able to do it safely, and see if it starts to show some results instead of just making me feel like ass. My hope is I just have a hurdle I have to get over to trip into gaining from my exercise. Right now it just feels like punishment. But I could always do more, but I know what I'll feel like the next day so I don't. I mean it's not like "damn my legs are sore". It just hurts completely differently. So maybe I just need to push through that if I can and see what's on the other side. I've never worked through atrophy and that, so that could be what I'm feeling. I've only worked through "I'm a bit out of shape, I'm sore, I expect it and just have to keep going". So starting Friday I'm a gym rat again. I hope to God I can keep it up. my jugs really did look awesome. They literally looked like straws from the top and from the side Dake said they looked like an interstate. So if this is it, I've got it done right so we'll see what we see.
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Postby Sharon » Thu Nov 12, 2009 7:24 am

Lew -

A "poster child" :) :) This is such great news. You have had to beat this with a stick -- now put the stick away and start to heal and have fun with life.

FYI on the exercise - I would suggest not pushing the shoulder through pain. My trainer was very careful -- I went to pain and then backed it off a bit. This seemed to work for me - I am back to my pre-op exercise routine and the shoulder is good.

Have a safe trip home.

Sharon
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Postby LR1234 » Thu Nov 12, 2009 7:47 am

Good to hear your jugs are looking good Lew:) now I suppose it is a waiting game to see how much difference it makes to your progression and disability.

How are you doing these days Sharon? we have not really had a symptom update from you for a while xx
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