Update on my neighbor D.

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

Update on my neighbor D.

Postby cheerleader » Sun Dec 06, 2009 4:13 pm

Got a wonderful call today from my across town neighbor. Our sons are school friends and we have many mutual girlfriends. I referred her to Stanford last summer. D. has been in a wheelchair for a couple years, tried all the chemo drugs, everything, and was slipping fast. She had 4 stents placed in July. At that time, they did an MRI and found a "growth" on her brain...not a tumor. D. said that all the neuros at Stanford looked at it and didn't know what it was, but they would keep their eyes on it. When she went back in October, three months after her stenting, it had disappeared.

Dr. Dake told D she was probably the worst case he's treated. She had venous stenosis throughout her body. D. got 2 more stents placed last trip and she called me today to check in and thank me. Her bladder, spasms, energy and stiffness have all improved. Her voice is stronger and she can take deep breaths. She is doing physical therapy and hopes to get more mobility. She hasn't progressed and for the first time in a long time feels she is actually improving. I told D. I really appreciated her checking in. She wanted to post on the tracking thread, but isn't on the computer much, so she asked if I'd pass along her story. She's happy to be at home, healing and with a sense of hope.

I hope Dr. Dake has included her in his written paper. He's in press now, already accepted. I'll have details on that later.

Thanks, D. You gave me a huge infusion of hope today. Keep healing. You are an inspiration-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Salvatore24 » Sun Dec 06, 2009 4:21 pm

Fantastic news :D
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Postby Johnnymac » Sun Dec 06, 2009 4:34 pm

Very encouraging! Thanks so much for passing the info on!
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Re: Update on my neighbor D.

Postby Rokkit » Sun Dec 06, 2009 4:57 pm

cheerleader wrote:Her bladder, spasms, energy and stiffness have all improved. Her voice is stronger and she can take deep breaths. She is doing physical therapy and hopes to get more mobility. She hasn't progressed and for the first time in a long time feels she is actually improving.

That is awesome!

cheerleader wrote:I hope Dr. Dake has included her in his written paper. He's in press now, already accepted. I'll have details on that later.

And that is awesome!

Thank you so much Cheer, for all you've done and are doing. I can't wait to read that paper.
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Postby jay123 » Sun Dec 06, 2009 6:25 pm

Thats great for her but also with all the setbacks that have personally bothered you - Cheer- I hope this is another example the great thing that you have helped start!!
Congrats for her and thanks to you!!
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Postby mrhodes40 » Sun Dec 06, 2009 8:22 pm

Wow that is a great report thanks!! I love this
Her bladder, spasms, energy and stiffness have all improved


This is great I am so happy for D! :D :D

Like D I too have spasm reduction that is remarkable and it has made a difference in physical therapy possibilities. We'll see where it goes, but more anecdotal reports of such a thing are very positive! Thanks.
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 jr5646 » Sun Dec 06, 2009 10:17 pm

Does that send chills down your back or what???


Thank you for sharing that, Cheerleader...
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Postby ErikaSlovakia » Mon Dec 07, 2009 12:27 am

Cheer,
please, say hi to D. I wish her the best!
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby ClaireParry » Mon Dec 07, 2009 1:51 am

I'm so glad she is feeling better.

I have problems taking breaths and it is really un-nerving. I'm tired of my neuro telling me it's a panic attack!!!

Send her my best wishes

Clairex
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Postby Mutley » Mon Dec 07, 2009 3:26 am

That is so wonderful!! Please pass on my best wishes.

Thanks for posting Cheer!
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
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Postby CRHInv » Mon Dec 07, 2009 5:57 am

She's happy to be at home, healing and with a sense of hope.

I am so glad you shared this with us! Thanks!
Tell D. to take good 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 ozarkcanoer » Mon Dec 07, 2009 6:33 am

:D What a wonderful story for a dreary Monday morning in St Louis !
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Postby Sharon » Mon Dec 07, 2009 7:04 am

Thank you Cheer for updating your friend "D"'s story.
At that time, they did an MRI and found a "growth" on her brain...not a tumor. D. said that all the neuros at Stanford looked at it and didn't know what it was, but they would keep their eyes on it. When she went back in October, three months after her stenting, it had disappeared.


This is very interesting - "D" had something on her brain which could not be identified and now it is gone. Similarly, on my follow-up, my MRI showed the two capillary telangiectasia in my pons to still be present but less apparent. (a capillary telangiectasia is a vascular malformation which is usually asymptomatic).

It is wonderful news to hear that "D" is noticing some improvement -- and to hear that she is hopeful for more mobility -- a great positive attitude for someone a few months ago was scared of where the MS was taking her.

Sharon
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Postby coach » Mon Dec 07, 2009 1:24 pm

Thankful that D is doing well and hopefully can look forward to further improvements and no more progression.
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Postby MS_mama » Mon Dec 07, 2009 8:08 pm

the deep breaths got me there--as I have always had this problem with taking deep breaths. Even got my lung function checked, and it's okay. I just chalk it up to the mysteries of this darn disease. Well, another thing I hope can get fixed if I ever have a chance to be tested and treated!
dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />
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