Mel's 10 month update

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

Mel's 10 month update

Postby Jamie » Tue Mar 23, 2010 7:28 pm

Greetings,

It's been a long time since I've been on this forum, for those who don't know me I'm Melissa's other half. Melissa is a 34yr old woman diagnosed with MS back in 2007 (seems a lot longer than that!) had HiCy treatment in 2008 at Hopkins, relapsed in 2009 and had three stents placed by Dr.Dake at Stanford in July 2009 as she was in the middle of a relapse.

The relapse disappeared after a few days.

You can click my user info for the whole story of course, this is just a quick update for those who know us and anyone else who may be interested.

Mel has continued to do very well, in fact I only thought about MS and CCSVI today as I saw an article on a tech website I frequent (singularity hub) talking about the Buffalo results which look promising.

We have been lucky enough to put MS behind us for now. Melissa continues to do very well and has no residual MS effects.

Even her eyesight has improved a couple of prescriptions and the pars planitis has stopped and even shows signs of 'clean up' with the snow banks reducing a lot.

Full time at work and is giving a massive presentation tomorrow in front of hundreds of doctors and phd's, she's a geneticist. Unthinkable only a year ago when keeping awake more than 4 hrs at a time was a small victory.

So for Mel this has been a complete success and the best thing is, if something does go wrong and 'it' comes back, we know what to do - there will be a blood flow issue and it can be repaired. That is the biggest comfort of all and allows us to move on (me more than her of course), not like after HiCy when we thought if this doesn't work then that's the end.

I wish you all the same results that Melissa has been lucky enough to achieve.

My mailbox is full on here but I can but I can be reached at jamie.keogh@gmail.com if any of my old pals want to catch up.

Cheers.

Jamie
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Postby Sharon » Tue Mar 23, 2010 8:33 pm

Jamie!! It is so good to hear from you. I do not get on TIMS as much anymore either -- was a wonderful surprise to see you here tonight. I will send you an email.

But, for all those who are "newbies" on the sight -- I just wanted to let you know that Mel was one of the Stanford stenters -- a pioneer in CCSVI. She had previously undergone HyC treatment and then a short year later went to Stanford. It is the best news to hear that she is doing so well. I encourage you to all take a look at Jamie's and Mel's thread which is a story of their journey with MS and CCSVI. And, now to know that you both have gone on with life -- MS is in the rear view mirror --- incredible!!

You are the best,
Sharon
P.S. Snowing here tonight - possible 16" - skiing should be great for a few days -- Denver is just a short drive from Texas :D
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Postby bluesky63 » Tue Mar 23, 2010 9:51 pm

Thank you so much for taking the time to post this very encouraging update. I am so happy for Mel. :-) It is particularly positive for me to hear about the eye symptoms improving, since recurrent iritis is one of my major issues. Best wishes to both of you. :-)
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Postby ErikaSlovakia » Wed Mar 24, 2010 1:51 am

Hi Mel!
Thanks for the update. I wish you 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 costumenastional » Wed Mar 24, 2010 2:35 am

Thank you very much for taking the time to keep us posted. Always wonderful to hear such good updates.
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Postby eric593 » Wed Mar 24, 2010 2:44 am

Good news and thanks for sharing!

Are you keeping an update on the tracking thread at the top of the forum too?

Please continue to let us know as time passes what happens as long term results are so important for us all in our decision-making.

PS - any MRI updates showing improvements?
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Postby colapesce » Wed Mar 24, 2010 3:19 am

This is excellent news! Thanks for sharing.
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Postby MaggieMae » Wed Mar 24, 2010 5:43 am

I think of you and Mel often and as a matter of fact just last evening I was thinking of all those who were treated at Stanford. We only hear from a few on here these days. I'm so glad that things are gonig great for you both. Wonderful!!!
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Nice to hear from you!

Postby CRHInv » Wed Mar 24, 2010 6:40 am

It is so good to hear from you! I was excited to see your thread this morning. I remember months ago when you told us you guys were moving on. I didn't know if we would hear from you again. I am so glad you checked back in. Mel's story was one I looked to to help me decide to go to Stanford. I am so glad she is doing so well at 10 months. I am four months out and doing well also. Again, I thank both of you for sharing your inspiring story.
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 prairiegirl » Wed Mar 24, 2010 9:58 am

Sincere thanks for taking the time to update. It is very interesting to hear from those who had the procedure done earlier. Thanks for being generous in sharing your news with those still searching and learning.
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Postby magoo » Wed Mar 24, 2010 10:19 am

This is so incredibly wonderful to read!! I am truly happy that you both can move on with life and not have MS slowing you down.
I am 5 months out from my procedure at Stanford and I am also living a full life again. Those of us who are patients of Dr. Dake are incredibly blessed.
Thanks for posting this update. Please let us know how you are in the future. I would love to hear about the one year scans!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby Cece » Wed Mar 24, 2010 11:47 am

Thanks for the report and so glad to hear of her improvements!! I am new since the excitement of last summer and the Dake pioneers. It is especially good to hear that the pars planitis is clearing. I have that as well and have considered that separate from the m.s. but it makes sense that it's all CCSVI-related.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby cheerleader » Wed Mar 24, 2010 11:56 am

happy spring, Jamie and Mel!!
Miss you guys 'round here, but really glad to hear Mel is doing so well. We've been so busy, haven't booked Jeff's one year check up yet...can't believe this year has flown by. Don't be a stranger, Jamie-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Amen!

Postby gabbycats » Wed Mar 24, 2010 12:56 pm

It's so good to hear such an encouraging update on Melissa! I pray she continues to do so well and regain her health!
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Postby Johnson » Thu Mar 25, 2010 12:11 am

I don't know your story (I will look it up), and you don't know me, but thanks very much for posting the update of a pioneer.

I'm afraid that a bunch of us newbies have chased away the old guard, but please stay in touch. We all have a debt of gratitude to the early adopters, AND WE CARE!
My name is not really Johnson. MSed up since 1993
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