Lady Stewart-Stanford Update

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

Lady Stewart-Stanford Update

Postby Sharon » Wed Aug 05, 2009 8:51 pm

It is 8:45 pm Palo Alto - Sharon has been in her room for about 30 minutes. I spoke with her briefly - she had three stents - 2 left and 1 right (I think that is what she said---it has been a long day, so please excuse). She is groggy -- her throat hurts. Her sister Susann is with her - thanks Susan for coming all the way from Louisiana to stay by your sister's side. Sharon will post more when she gets home to LA.
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Postby cheerleader » Wed Aug 05, 2009 10:22 pm

Thanks for the update on LadyStewart (Sharon) and CureIous (Mark), Sharon. Getting hard to keep track. Also glad to hear you're off the blood thinners (although Jeff just hollered "No fair!!!" He's got two more weeks and is counting the minutes.) Safe travels home to everyone. Any news from our dear Marie???
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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby catfreak » Thu Aug 06, 2009 7:24 am

So glad for the update on Lady Stewart. Thanks.

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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 ladystewart » Fri Aug 07, 2009 12:19 pm

I am back. I had NO rest (2 boys with me). Everything fine so far. I have 2 stents on my right and 1 in my chest. Laughing hurts!!! Throat sore but starting to feel better. My sister (from Atlanta just got on a plane) I am so thankful for her assistance!.

More later----
Sharon
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Postby peekaboo » Fri Aug 07, 2009 1:35 pm

Welcome home -

Glad to hear you are managing post op even w/ your boys in tow :wink:
I look forward to hearing further accounts of your "Stanford experence"

Holly
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Postby Sharon » Fri Aug 07, 2009 3:08 pm

Sharon -
So glad you are back at home and I hope resting!
Laughing hurts

Yes, I think most of us know how that feels - no comedy shows for a couple of nights. :lol: :lol:
I was glad that we were able to connect by phone - sorry that I did not make it over to the hospital to meet you.
Take care and let us know how you are doing.

another Sharon
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Postby catfreak » Fri Aug 07, 2009 5:30 pm

Sharon,

Glad you are home and trying to rest! Keep us posted.

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 MaggieMae » Wed Aug 12, 2009 9:19 am

Sharon,

It has been too long. How are you doing these past few days?
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Postby ladystewart » Wed Aug 12, 2009 10:05 am

I am doing well. Thanks to all! Laughing and pain is going away. My typing is still slow but I expect more later! My husband called me a 'computer nerd' and I was into PM/IT. My sister has a Masters in english--I read alot now--ughhhhh. I can't wait until better things.
FYI-I was losing muscle on my right side(leg/foot). Blood is going back now because my feet swell--yeah. I am trying to exercise in the am everyday to get blood moving everywhere. I have an appt with my neuro on 8/25--I will get information about PT at that time.
:lol:
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Postby Sharon » Wed Aug 12, 2009 12:25 pm

Sharon -

It was good to hear from you..I wish it could have worked out for us to meet each other at Stanford ...maybe another time.

You wrote:
I am trying to exercise in the am everyday to get blood moving everywhere. I have an appt with my neuro on 8/25--I will get information about PT at that time.

I think any movement we can start doing is going to help us. Glad to hear you are exploring physical therapy. My feeling is that there are too many muscles and nerves that have not been working for a long time---I am using everything that I can to get them stimulated...Pilates, strength training, Feldenkrais, and golf.

It will be interesting to hear what your neuro has to say.

Take care, and keep us updated
Sharon
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Postby Loobie » Wed Aug 12, 2009 1:01 pm

Sharon wrote:I am using everything that I can to get them stimulated...Pilates, strength training, Feldenkrais, and golf.


OK, I give. What the heck is Feldenkrais? :lol:
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Postby Sharon » Wed Aug 12, 2009 1:50 pm

Lew - I knew I would catch you on that one :lol:

http://altmedicine.about.com/od/therapi ... nkrais.htm
http://tinyurl.com/nheubu

I have taken Feldenkrais classes off and on for a little over a year. Basically, the class teaches you how to move. With MS, we have many areas of our body that just do not move correctly -- much of this is caused by compensating movements. The foot is dropping so in order to get it through the gait step without tripping, you hike the hip. When you hike the hip, the knee is taken out of the gait action--it does not bend. In time this becomes your "new" walking memory.

Feldenkrais is used by dancers and pro athletes (yes, Lew, football players). It is becoming part of physical therapy rehab for people with strokes. Personally, I have been in class with a fireman who could not turn without his back hurting, a lady who had "frozen shoulder", a dancer who could no longer jumb and bend her knee, a few MS people, a lady in her 80's who could not get up off the floor----the Feldenkrais helped all of them In fact, the firehouse now uses the training as part of their physcial routine exercise.

It has helped me to learn new ways to move my body with the physical deficits that I have.

Sharon
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Postby Loobie » Wed Aug 12, 2009 4:28 pm

I'm looking into that right there. I need to learn how to walk with my funky gait because it is just causing my IT band syndrome to not go away, and it hurts like hell. Thanks for the info!
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Postby skydog » Wed Aug 12, 2009 4:55 pm

Thanks Sharon, I have lost a lot of mobility from swinging the left leg at the hip and had not put 2+2 together. Over the past couple of years I have lost the ability to lift my left leg which probably has allot to do with compensating for the drop foot. I will look into Feldenkrais as a new option for gaining back some much needed mobility. Cheers, mark
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Postby Jamie » Wed Aug 12, 2009 7:16 pm

That sounds very useful.
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