Today is a reward, 5 1/2 months post surgery

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

Postby cheerleader » Tue Apr 06, 2010 5:03 pm

Hey Rhonda--
so beautiful! Thank you for sharing.

Jeff just got back from SKIING all day with our teenager. Up at high altitude (he couldn't do that before his procedure) on the slopes, for over five hours. My son said, "Wow, Dad is a good skiier!" He didn't remember from the last time they went, over five years ago. Jeff felt great. His balance and leg strength were back, his breathing was great, and no fatigue.

My heart is so happy, yet at the same time, so heavy. I can't believe that the neurologists at Stanford don't want to study you, Jeff, Sharon, Lew, Mel, Rose and others. I know they read these boards... Test the Stanford stent patients. Look at their one year MRIs...evaluate them!!!! I dare you! If their CCSVI procedures were junk science--show us why. Because we have evidence of healing.

Downhill skiing is not placebo affect--staying up, working, living, playing in the hot sun, in the cold snow--these are activities you all couldn't do until Dr. Dake relieved your venous obstructions. And it is real. This isn't going away. Jeff has his one year testing in a month. Maybe I'll pop in and get us a check up with the neurology staff. Don't you think they'd love to meet us all???
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Rose2 » Tue Apr 06, 2010 5:26 pm

Cheer-
congrats to Jeff for SKIING! Wow. Doesn't that just say it all???
To anyone that has ever skiied, I mean. How much strength he has regained. Terrific.
As I regain my strength I realize how two-folded MS is. You lose so much of your own strength from NOT doing stuff so it exaggerates the real MS strength loss. The fatique does not allow you do do anything when you are tired, so how can you stay strong?
Well, a little bit of good old O2 in the brain is like water in the well.
Yes, see if you can find out why the Stanford Neuros don't want Show & Tell in their own backyard.
Baffles me.
Sorry if I hijacked this Rhonda!
Congrats. Rose ;)
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Postby Brynn » Tue Apr 06, 2010 8:56 pm

Fantastic, Rhonda! What touches me the most is that your kids got to be with their active mom again! My three year old hasn't had a chance to see mine yet...I am three weeks away from my second stent, so you helped to keep me excited, my friend! :D You and Jeff are our symbols of success! What's next, perhaps a mini triathalon? :D :D Take care, Brynn
41 years old, dx 1998, current EDSS 6.5
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Postby Brightspot » Tue Apr 06, 2010 10:10 pm

Thanks for your post Rhonda. Tomorrow afternoon I will meet with my member of Parliament, to lobby for screening and treatment for CCSVI for all at risk Canadians. I have printed off your story, and it will be part of my pitch. I am hoping to be able to make a presentation to the Canadian Parliament Standing Committee on Health in the near future, and I am so glad to have your "from the heart story".
Best wishes for continued improvement.
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Postby Johnson » Tue Apr 06, 2010 10:37 pm

I add my thanks to all the others, Rhonda. Like Brynn, I have a three years old, who has only seen me deteriorate as I move into SPMS. Yours, and the others' testimonies give me great hope - something I didn't have 5 months ago.

PS - I know the feeling of recognizing MSers, and not knowing whether to approach them, or not. I have decided to "damn the torpedoes". I will likely be more convincing after treatment though.

Keep healing!
My name is not really Johnson. MSed up since 1993
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Postby thornyrose76 » Wed Apr 07, 2010 2:04 pm

Okay, this to me is proof that the Liberation Treatment weorks! You are giving me a real sense of relief... I have to ask, what were you like before physically, have you had any physio? What has the past 5 mnths been like for you?
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Postby CRHInv » Wed Apr 07, 2010 2:05 pm

Rhonda, just bumping your wonderful story so it can keep the hope alive for anyone who missed it yesterday.

Yes everyone, these stories are what we want for everyone. Stay strong, and stay hopeful.

Cheer, I don't get it either... Doesn't it seem like others should be more interested in our amazing results? I would certainly be glad to share. I should share more here, I will work on that.

Take good care everyone!
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 magoo » Wed Apr 07, 2010 2:34 pm

Before the treatment I suffered from extreme fatigue, weakness, cognitive impairment, balance problems, severe pain on right side, migraines, trembling, heat intollerance, numbness, dizziness, stiffness in arms and legs, and anxiety. I had 3 episodes where I lost the ability to walk for a time. It was not good and I was getting worse at a steady rate.
I didn't feel really well the first week after the surgery, but after that I was on a steady climb of improvement. I did overdo it several times and that did set me back here and there. I had some nerve damage and some headaches for several months.
I do get a return of some symptoms when I am sick. It has scared me a few times. But, when I am better...everything goes away! I haven't been able to get an answer from any doctor about this??? I guess they just don't know yet.
Not to brag, but today I hiked a mile up a mountain to the most beautiful waterfalls!!!! And now I am happily awaiting my chinese take out and tired in a very good way :D It's Spring Break here and so far I have been able to do everything my family has planned!! It's so nice not to be home in bed anymore!
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 CRHInv » Wed Apr 07, 2010 2:41 pm

Keep the stories coming. You should have a few more days of Spring Break!
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 Rose2 » Wed Apr 07, 2010 3:12 pm

So glad you are having a great spring break with the kids. and DITTO to everything you have written. Especially all your symptoms pre-treatment. I have forgotten them all. If I had it to do again, I would start keeping a symptoms journal before Liberation so that the comparison would be written down. I did not do that but I advise it for you up and comers!!
Today I kept taking stuff out to the mailbox and the dog looked at me lilke I was crazy for stopping there, so we went for a nice long walk. I wasout the door at 7:00am for my carpool to the subway and am getting all my bookwork done.
A friend came over to visit, and she is STILL staring at me. She just cannot get over how I well I am doing and this goes for everyone I know. The improvement is DRASTIC, HUGE, WONDERFUL.
She kept asking me again how, why, etc. Even tho I have tried to explain it every time, she just cannot wrap her head around it. And she admits she wants to understand it but she just cannot.
Maybe that is what is happening with the Neuros! Maybe it is just too big an idea to wrap their brain around. Maybe?
Rose ;)
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Postby thornyrose76 » Wed Apr 07, 2010 6:27 pm

Keep us posted with your progress, it's just so promising to me, fills me with a sense of peace, alot of people! :D
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Postby bluesky63 » Wed Apr 07, 2010 10:12 pm

I am so happy for you and for your family. I have an 11-year-old son who has no memory of me not needing a wheelchair. What a different life this simple procedure could mean! :-)
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