CCSVI treated a year ago...

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

CCSVI treated a year ago...

Postby magoo » Thu Oct 28, 2010 8:45 am

I had the procedure done at Stanford by Dr. Dake a year ago on October 19, 2009. I had numerous issues, especially cognitive deficiencies, fatigue and constant pain and stiffness. I had severe stenosis of both jugulars from my ear to my jaw. I had two stents and although my immediate recovery period was rough, within a week I had significant improvements. I really did benefit in almost all areas and began a new life.
I have learned a few things over the past year about my body. I have learned that I retain some stiffness in my legs. I am sure this is due to permanent damage, which of course won't be repaired by opening my veins. I can certainly live with this since I now have had enough time to realize it is not getting worse.
I also have learned that any kind of inflammation or activation of my immune system triggers my old symptoms. This caused me great concern in the beginning, but over the year having gone through it a few times, I know it is only temporary. I always regain everything once the inflammation is gone. The weakened areas of damage in my brain and the over active immune response can still somehow get to those areas. I feel very comfortable now that this is the way it is and I don't worry. None of this is "new", it is all "old" damage just being stimulated.
Dr. Dake is the most wonderful and intelligent doctor. He has been there for all of us who were treated by him. He continues to fight for us everyday. He is a very important piece of this discovery. His work will help to start figuring out this very complex issue. I have never doubted his expertise or his guidance. I am so happy to have had stents to correct my stenosis because I don't have the concern of restenosis. The follow up care and blood thinning therapy he prescribed has prevented many of the scary things I see happening with stents now.
As for my stents...they are great! As for my MRI...it is stable! I haven't taken Copaxone since before my treatment and the last time I took a break from it I had 4 new lesions within 8 months. This is victory for me!!!
I met two wonderful ladies who were treated around the same time as I was while in Palo Alto. The energy and excitement around that table was quite amazing. We have all had a life changing experience. We all do not fear MS any longer. We are the reason this treatment has moved forward. Our stories are so amazing, our lives are so improved, and the energy we have now is explosive! It's quite remarkable. MS has never been something you can stop or recover from... until now. There are no words to describe how grateful we are.
So my experiment with CCSVI has passed the 1 year mark and I feel very lucky and happy with the outcome. I feel I may have stopped this MonSter in it's tracks and I hope it continues for my lifetime. If not, I can't tell you all how grateful I am for the past year. It feels good to be a mom again, a wife again, and myself again.
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 blossom » Thu Oct 28, 2010 9:05 am

thank you for shareing your story. i am so happy for you and those others it is helping. hopefully soon there will be help for all of us and we won't have to travel all over God's creation to get it and the after care which is so important won't be such an issue. the best continued healing and happiness.
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Postby welshman » Thu Oct 28, 2010 9:31 am

Stories like yours are the inspiration that others need to get the treatment. Yes there are still many doubters out there, there are still so many unanswered questions, yes we still need more research, but the fact is treating the veins does do good to the rest of the body. Just like nobody knows what causes MS or how to cure it, then we still have a lot to learn about why opening veins stops the need to go to the bathroom so often - just one of the benefits but why :?
Wishing you years and years of continued good health without the MonSter around your neck.
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Postby sou » Thu Oct 28, 2010 9:35 am

I am so happy for you.

Let me introduce some militarism. I sometimes wonder if those scars within our CNS will someday be considered as "battle scars" from a war that we once won... I only hope this comes true. I wish I didn't have them and could walk, but it would be my honor to be a winner, despite the heavy losses.
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby prairiegirl » Thu Oct 28, 2010 1:14 pm

Great news, Magoo! You are one of the posters here who has given so much hope to people. It is terrific that your CCSVI treatment was such a success, and because of you early "pioneers", so much more is being learned all the time by both patients and doctors. I thank you for giving me that message of hope for people such as my daughter, and I wish continued good things for you on your road ahead.
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Postby pklittle » Thu Oct 28, 2010 1:32 pm

Thanks for being a pioneer! What a great story you shared. I still have hope that I can be helped thanks to reading things like this.
You should go on a vacation and celebrate!


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Postby Johnson » Thu Oct 28, 2010 4:47 pm

That is a wonderful account, magoo. Thank you. Your writing and your photo reveal your own happiness, and give hope and courage to many.

Here's to a new lifetime!
My name is not really Johnson. MSed up since 1993
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Postby bruce123 » Thu Oct 28, 2010 5:06 pm

Thank you Magoo. You write beautifully and continue to inspire us.

Bruce.
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Postby happydance » Thu Oct 28, 2010 6:14 pm

Thanks for the update Mango. Glad to hear you enjoying life again, and your kids have mom back.

I was wondering what tests did Dr Dake all do for your one year follow up? Also what meds are you still on? Will you have to take more than just aspirin for the rest of your life?

TIA

Best Wishes,
happydance
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Postby magoo » Thu Oct 28, 2010 6:27 pm

A sincere thanks for all of the well wishes! :D
I am proud of the battle scars and a celebration vacation sounds good...if only my AC didn't go out and need replacing. :evil:
I had an MRI and MRV. If there were any concerns Dr. Dake would have done a venogram. In my case it was not necessary. I take aspirin and one pill for pain at bedtime. A big change from the handfull I used to take!
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 happy_canuck » Fri Oct 29, 2010 1:11 pm

magoo, your words are inspiring to those of us who follow in your footsteps! I wish you continued success and healing and loads of fun with your family! Thank you for this post and thank youfor being a pioneer. If you don't mind, I am going to link your words to the Facebook CCSVI at BC page to pick up spirits there.

~Sandra
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />
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Postby magoo » Fri Oct 29, 2010 1:24 pm

Thanks Sandra :D Go ahead and link!
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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Vitamins may help

Postby MarkW » Sat Oct 30, 2010 11:41 am

Hello Rhonda,
Thanks for posting a one year report.
This may be wasted advice but Vitamin D3 may help stabalise your immune system. Daily dosage is 5000 iu/day. If you are wanting to help re-myelination them B vitamins could help. B12 5000mcg sub lingual, daily plus B complex (not sure what is the US formulation). These vitamins are not expensive so its worth doing a 2-3 month trial. I hope you are still making sure you have plenty of anti-oxidants

Kind regard,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby magoo » Mon Nov 01, 2010 8:59 am

MarkW,
Thanks for the post about vitamins. I take some and would be willing to boost my intake. It can't hurt! I appreciate the advice :)
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 Direct-MS » Mon Nov 01, 2010 4:43 pm

Rhonda,

It is great to hear that the benefits of CCSVI treatment continue after one year (no great surprise) and, as has been said before, you are truly a pioneer.
I would note that MS involves both a vascular problem and an immune dysregulation. Just as it is important to get the vascular problem fixed (as you have done), it is equally important to keep the immune problem (created by genetic susceptibility and environmental factors) well controlled. This can be done best with nutritional strategies and I encourage you to seriously consider adopting nutritional strategies to complete your recovery process. If you think you are feeling great now, I can assure you that you will be feeling even better once you eliminate immune stimulants such as dairy and gluten and increase immune regulators such vitamin D, omega 3 EFA and antioxidants.

All the best,

Ashton
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