Akaheather's One Year Checkup at Stanford and ....

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Akaheather's One Year Checkup at Stanford and ....

Postby akaheather » Sat Sep 25, 2010 8:53 pm

NO RELAPSES
NO NEW LESIONS
STENTS IN PLACE
BLOOD FLOWING

Woohoo!!
I KNOW, I KNOW !!! Lesion count is not every thing. But, after seeing several bright white enhancing lesions in the past couple of years, I was thrilled to receive a clear MRI.

In case you don't remember me, I was seen by Dr. Dake seen last year on October 8th and I received three stents, two in my left IJV and one in my right. When Dr. Dake's staff performed my MRV, in additon to stenosed jugular veins, they also found an actively enhancing lesion on my MRI. My EDSS, at that time, was somewhere between 1 to 1.5 and I had RRMS. I was first diagnosed with MS in 2004.

The morning after my procedure I felt like I had been hit in the base of my skull with a 2 by 4. I also had a lot of pain in my right shoulder. The lower skull pain cleared up pretty quickly, but the shoulder pain lasted for almost 8 months. In March, I also started having a daily headache just above my eyes which lasted for about 3 months. (I have no idea whether or not the headache was related to my procedure. I just thought I would add it as a disclaimer. ) Other than these "side effects", I have been feeling pretty well.

My symptoms upon arrival to Dr. Dake's office included fatigue, brain fog, tingling in hands and feet, intermitant tingling in legs after heat exposure and/or excercise.
Since having the procedure, fatigue and brain fog have improved. Tingling in hands and feet cleared immediately after surgery while tingling in legs has continued. (I am convinced that this is due to nerve damage from a previous relapse, but I could be wrong. At any rate, it doesn't happen all the time so, if this ends up being the only symptom I'm left with, I'll take it! Thank God!)
In summary, I am feeling great. I LOVE MY STENTS and am extremely happy to NOT BE GETTING WORSE!! (So far.) 8)
Even more importantly, I am THRILLED to have lived this past year with less fear than I have felt in the past six years!
I'll be sending my prayers for Liberation for All!
Heather
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Best Wishes

Postby Serendib » Sat Sep 25, 2010 9:19 pm

Dear Liberated One,

Thank you very much for keeping all of us informed. It is a huge encouragement to all of us stuggling with re-stenosis.

I wish you the very best of health in the coming years.
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Postby CureIous » Sat Sep 25, 2010 10:47 pm

I love my stents too. I have to, they're the only one's I got!

Excellent report, you must have been close to the last one's at Stanford last year?

I haven't changed one iota lifestyle-wise in the past year, except reading and writing 10x more than I used to which keeps me muy busy. I think I should get some ECGC or start chewing on green tea leaves just to cover all the basis..

It's going to be 107 here tomorrow, we're going to the park! No really!

Much continued success..

Mark
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 magoo » Sun Sep 26, 2010 10:54 am

Hurray Heather!!!!!!! Thanks for posting and letting us know about your first year. I'll be heading to Stanford for my 1 year check up in a few weeks. I can't wait to see my MRI!
Congratulations!!!! May your next year be just as good!!
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 Lyon » Sun Sep 26, 2010 12:58 pm

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Last edited by Lyon on Sun Nov 20, 2011 5:12 pm, edited 1 time in total.
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Postby Nasti » Mon Sep 27, 2010 2:00 am

Congratulations!!!
I am feeling just like you. However, I had a 3 mos postop checkup with a doppler, and my jugs, esp the stented one, was 6 mm right after the surgery, and now it is 4.5 (pre-op it was like 1.3 at the nec and .2 at ear height). Have you noticed this narrowing fashion in your post-op examinations?
Though, whatever the size, it still works properly, and that's why I love it too :)))
Best wishes...
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Postby cheerleader » Mon Sep 27, 2010 7:52 am

Great report, Heather!!

So happy to read of continued health and healing. Thanks for sharing with all of us-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Billmeik » Mon Sep 27, 2010 1:29 pm

any one know any numbers on how many of dake's early patients have had a clear mri after one year?
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Postby CRHInv » Mon Sep 27, 2010 4:23 pm

Woohoo! I am so glad you took the time to let us know how you are. I am so glad you are doing so well. I too go back for my one year in a few weeks and I am feeling pretty darn good. I will let you know what I learn.

I love this part:
Even more importantly, I am THRILLED to have lived this past year with less fear than I have felt in the past six years!


Placebo schembo!
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 Billmeik » Sat Oct 02, 2010 9:40 am

I think your sig shoule say

Placebo shemebo

I am a patient fairly desperate to know if ccsvi is true. These mri's after a year are the best evidence that it is true out there as far as a neuro is concerned. How many are there?
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Re: Akaheather's One Year Checkup at Stanford and ....

Postby akaheather » Tue Nov 22, 2011 6:38 pm

Just returned from my two year follow up with continuing good news.
No new lesions.
Blood flow still looks good.
This time, after reviewing results from his updated protocol, Dr. Dake did notice a malformed valve in my right IJV (one long flap instead of two short). Not sure if this is necessarily problematic at this point, but mildly reassuring to think that we might have a likely suspect if things take a turn.
Still praying for liberation for all!

Heather
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Re: Akaheather's One Year Checkup at Stanford and ....

Postby CRHInv » Tue Nov 22, 2011 7:43 pm

Hey! I just got back too. I was probably there just before you.

I am so glad to hear you are doing well and the interesting valve information he found in your test results. I love that these guys just keep getting smarter and smarter.

My results were all good too!

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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Re: Akaheather's One Year Checkup at Stanford and ....

Postby cheerleader » Tue Nov 22, 2011 7:47 pm

Whoo-hoo! Two good 2-year reports! Great news, ladies. Agree with Beth...really glad the doctors are all working together now, and noting different aspects of venous malformations and how to treat them.
Thanks for the updates Heather and Beth! Jeff's doing really well, now 2 1/2 years.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Akaheather's One Year Checkup at Stanford and ....

Postby Robnl » Wed Nov 23, 2011 4:20 am

ah, more placebos :lol:
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Re: Akaheather's One Year Checkup at Stanford and ....

Postby magoo » Fri Nov 25, 2011 7:33 am

Great news Heather and Beth! :-D
Although I will not be going to Stanford for my 2 year check-up, I wanted to post that I am doing amazingly well too! I have had a recent MRI which is absolutely stable. So, nothing new for two years!!
I hope more of the Stanford group check in and let us know how they are doing.
Happy Holidays!
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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