Hi from Jeff, re. my stent treatment at Stanford

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

Postby chrishasms » Sat Jun 27, 2009 8:48 am

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Postby Artifishual » Sat Jun 27, 2009 9:17 am

This is unbelievable at the almost exact moment I was about to read Marie's post my cell phone rings. It is the nurse from Baylor in Houston calling to let me know that my nuero has contacted Dr. Lin and they have had some sort of dialog about getting me tested. She told me that Dr. Lin would be out of his office until around July 14 so not to expect a call until after that.

God is working in my life! My best friends wife had a total mastectomy and reconstructive procedure done yesterday for breast cancer. Her preliminary tests showed to be all clear, now we are only waiting for the pathology report. She is 35 and they have two of the sweetest little girls.
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Postby Loobie » Sat Jun 27, 2009 11:14 am

Good luck guys from the bottom of my heart.
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Postby Lyon » Sat Jun 27, 2009 11:22 am

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Postby peekaboo » Sat Jun 27, 2009 1:47 pm

Arti - this is good news...we are getting somewhere a little a time. O am sure your persistance gave it a nudge.
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Postby Sharon » Sat Jun 27, 2009 4:12 pm

Save travels Cheer and Jeff!

We well all patiently wait (yea, right!!) to hear from you :wink:
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Postby cheerleader » Tue Jun 30, 2009 7:38 pm

Artifishual wrote:This is unbelievable at the almost exact moment I was about to read Marie's post my cell phone rings. It is the nurse from Baylor in Houston calling to let me know that my nuero has contacted Dr. Lin and they have had some sort of dialog about getting me tested. She told me that Dr. Lin would be out of his office until around July 14 so not to expect a call until after that.
God is working in my life!


Shannon...So glad to hear your neuro and Dr. Lin have talked about the testing. This is terrific news, and is thanks to your squeaky wheel persistence. Good for you! We'll get other doctors to look into CCSVI, but it's not going to be easy at first. God is indeed working, in all our lives...

It's 8 weeks today. Jeff's up at our house in northern ca...he drove up as advance team. Our son and I fly up on Thursday for the 4th, and then we drive down to Stanford together. It's been hot up there, high 90s, and he's been doing yard work, weed whacking, visiting with his parents, rebuilding his Dad's computer, working on his music...he just called me. He sounds "ebullient". He said he is still feeling more energetic and healing everyday. He's surprised that the energy level continues to improve. He's able to work in the heat, and his leg pain is much less. He forgot to pack his baclofen for his nighttime leg spasms, and he's been sleeping just fine. He hasn't felt this way since MS came into his life...and he's really excited.

I'll try to get him on to post, either before or after Stanford-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby chrishasms » Tue Jun 30, 2009 7:55 pm

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Postby mrhodes40 » Tue Jun 30, 2009 8:20 pm

He forgot to pack his baclofen for his nighttime leg spasms, and he's been sleeping just fine
I am so glad to hear this! I thought maybe I was imagining it! my spasms are reduced too I will plan to try no spasm meds once my belly is totally cleared because I can't afford a bad spasm in there but maybe in two weeks !!

I ordinarily take baclofen and requip at bedtime...
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 chrishasms » Tue Jun 30, 2009 8:48 pm

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Postby cheerleader » Tue Jun 30, 2009 8:57 pm

chrishasms wrote:I can't look at this anymore. It's killing me. I keep having these thoughts that there is a shot in heaven I may get my life back. I'm so jealous.

I am happy for you but am soooo jelaous.


Chris...I'm really sorry, buddy...you know we all want the same thing for everyone with MS. And I don't write these things to give false hope, or to make folks feel bad. Remember, Jeff was only a 1.5 on EDSS, he was just diagnosed 2 years ago...but it is very hopeful to see Marie and Jeff's leg spasms calming down. I'm hopeful there will be healing, but we're all just in the beginning stages of this. stay tuned,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby catfreak » Wed Jul 01, 2009 8:12 am

Cheer (Joan) and Jeff,

This is very exciting for those of us out here wondering and waiting. You and your family are in my prayers. Whatever the outcome of the test may be you have seen a change in your Jeff that you must be reeling over. Any improvement is a blessing when it comes to MS.

Tell Jeff I love his music and look forward to all the new stuff he is working on. Such a talented man. Happy 25th anniversary! We just had our 25th also on May 25th.

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 Loobie » Wed Jul 01, 2009 9:16 am

11 more days until X-mas in July for me!! Dr. Dake was very interested in discussing my MRI's I had just done. Maybe there's all kinds of active stuff going on and he is just so curious. Can't wait to get out there!
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Postby cheerleader » Mon Jul 06, 2009 11:05 am

Family's here at Stanford...Jeff just went in for his 8 week MRI/MRV. We had a terrific vacation in northern California, and are so thankful for Jeff's new energy and heat tolerance. Whatever the scans show, we'll let you know. Later today- dopplers and our Dr. Dake visit. We hope to have a minute with Mel and Jamie. IslandGirl, we'll miss you...but good luck with it all.

It's 11am PST now. We'll check in later-
xox,
Joan
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby cheerleader » Mon Jul 06, 2009 4:18 pm

wow...things have gotten busy here since last time!
Dr. Dake won't be able to go over the MRI/MRV results just yet...still waiting for info from the various departments. Just wanted folks to know it may be a bit before we get the full report...but it has been great to see the good doc again. We briefly ran into Jamie and Mel (actually...we were in the same waiting room, but didn't know it :oops: )
Jeff's getting an x-ray now, to check stent location. We'll let you all know more as we get it, but we're driving home tonight...will get in late.
best,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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