Treated for CCSVI almost a YEAR ago! Here's where I stand...

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

Treated for CCSVI almost a YEAR ago! Here's where I stand...

Postby magoo » Fri Sep 10, 2010 7:36 am

The one year mark is quickly approaching for several of us. October 19th, 2009 was the day I had my procedure at Stanford. Two severe blockages were opened with stents in my jugulars. The initial recovery had it's ups and downs, but the results were life changing.
Looking back, I am amazed at the year I have had. I did so many things which were not possible in the six years before. I am not perfect, but I do have enough of my life back to LIVE! I am very grateful!
My most significant improvement is cognitive. I was unable to think or speak clearly before treatment. I was unable to learn or follow directions. I had NO memory. These things are very hard to deal with. I am entirely able to move forward with a sharp mind and clear memory now. This is a good thing when raising two kids!
My fatigue, stamina and balance have also remained strong since treatment. This is huge since I typically spent most days exhausted and dizzy, which kept me in bed more than I'd like to admit.
I no longer tremble and ache when exerting myself. My muscles recover much faster now.
I no longer suffer from anxiety. This could very well be the result of not worrying about the toll MS will take on my everyday life. Whatever the reason, I am comfortable and happy and very outgoing.
I had improvements in my migraines. I do get headaches still, but not the disabling kind I had before.
The numbness was gone for a good seven months, but has begun to creep into my evenings again. The severity is not where it was before, only about a 30% increase.
The only concerning issue for me is a slow, steady increase in leg stiffness and neck/shoulder pain. It was unmanageable prior to treatment even with medication. I am able to manage this with ibuprofen now.
I do wonder why these things have started creeping back into my daily life.
I am hoping Dr. Dake will be able to evaluate my veins, and if anything is narrowed again, fix it next month. My azygos was determined to be fine, but since then we have learned better imaging techniques and nuances, so who knows? I would like to move into my second year with a clear picture of my situation. I am willing to have additional work done if the need arises.
One of the things that stick in my mind regarding this treatment is how many people wanted to see the results of treatment after a year. Well, here we are. It may not be perfect, but it is a whole lot better than before Zamboni published his discovery and got the CCSVI ball rolling. CCSVI/MS is probably a lot more complex than we imagined, but at least we are working towards discovery. Those of us who have undergone treatment are aware of the fact that we are swimming in uncharted waters. It may take time, but eventually the research will provide clear answers. This is a very hopeful time for people with MS.
Thanks to all of the people who answered questions and supported me before my treatment. Most of them are not around any longer and are truly missed. I assume they are out there LIVING!
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 Trish317 » Fri Sep 10, 2010 8:11 am

Thank you for sharing all that, magoo. I'm so thankful for all the CCSVI pioneers. My darling man was diagnosed with PPMS in 2007 and will have the procedure next Tuesday. We're cautiously optimistic.

Sending you good thoughts for continued healing and health.
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Postby KDGO » Fri Sep 10, 2010 8:14 am

Rhonda

Thank you so much for posting. This is great to read your year update.
Have fun with your boys :)
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Postby Blaze » Fri Sep 10, 2010 8:18 am

Thanks so much for sharing. That information is so useful. It is great to hear you are doing so much better than before.

Stay Strong!
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Postby bruce123 » Fri Sep 10, 2010 8:26 am

Thank you for this post.

As my wife waits for her call from Albany we feel the anxiety that everyone feels and your report is a great help.

I fully agree that we will learn so much more about this over the next few years. My hope is that we can find out why it helps some people and not others so that the diagnosis and treatments can be modified to help everyone.

In the past we had only hope. Now we have a reason for hope.

Thanks again,
Bruce.
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Postby magoo » Fri Sep 10, 2010 9:03 am

Trish and Bruce, waiting for treatment is exciting. I have a friend who was treated in Albany 2 weeks ago and when I saw her the other day I broke down in tears. She looked so good! Her gait was 90% smoother, her face was brighter, her speach was clear and quick, her energy was awesome and overall she looked taller and younger!!! She had a great experience and is so happy about her improvements. (this after a negative doppler in Atlanta) (not to knock Atlanta, but I mention this to keep people searching for answers).
Blaze and KDGO, thanks for your kind words!
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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thanks

Postby blossom » Fri Sep 10, 2010 10:27 am

hi there, so glad that you still keep us informed. even though we all have not been fortunate enough "yet" to see results as good as yours it is always good to hear about the ones that have. the good results the bad results being known i feel are both important not only for us but so that it gives these dr.'s and researchers the drive to keep at this so soon they will reach that happy medium. so hope you keep the veins and good news flowing.
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Postby ozarkcanoer » Fri Sep 10, 2010 10:39 am

Rhonda, I am so happy to hear your 1-year story !!! I had my treatment a little over 3 weeks ago (Aug 17). I have been up and down, optimistic and pessimistic. But I do have a clearer mind, less fatigue and less pain. I measure my progress by how many books I have read since Aug 17. All summer before that I could barely read a page a day. I have read 3 books start to finish since Aug 17 and I remember the plots !!!! And I no longer spend all day in bed in pain and no tears too. So we have a lot in common head-wise.

When my 1 year date comes along I hope to be able to be just like you and report a new quality of life. You know I have followed your story since I started on TIMS last fall, and your story and all the other pioneers gave me the push I needed to JUST DO IT !!!!! So congratulations and thank you for your story.

ozarkcanoer
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Postby magoo » Fri Sep 10, 2010 1:09 pm

Blossom and OZ, Thanks, and my hopes are high for a better quality of life for all MSers!
OZ, sounds like you have a lot to celebrate after 3 weeks. I hope you continue to see positive results!
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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Thanks

Postby Gordon » Fri Sep 10, 2010 4:29 pm

Magoo, I know you not but have followed your efforts. From one of your greatest presidents I repeat the following


Far better is it to dare mighty things, to win glorious triumphs, even though checkered by failure... than to rank with those poor spirits who neither enjoy nor suffer much, because they live in a gray twilight that knows not victory nor defeat.

Theodore Roosevelt

God bless and my prayers have been sent to my Lord

treated one 3 weeks ago, comign along nicely.

Gordon
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Postby hannakat » Fri Sep 10, 2010 4:43 pm

Thank you Rhonda! I'm still waiting for a call....not in any particular hurry but looking forward to the eventful day when my veins will be checked and opened.

Hearing from someone who had it done a year ago is so meaningful...... don't know how much it's appreciated!

I also hope those missing are out there living! We've all certainly put in our time so let's hope for more and more of us out there living our lives!

Stay and be well!
~^,,^~
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Postby Vhoenecke » Fri Sep 10, 2010 6:12 pm

Thanks so much Rhonda for not forgetting about your TIMS friends. Sounds pretty good to me after a year. We are so lucky to have this procedure available to us now, what hope did we have two years ago and so many have been done now.

I was concerned about your return of numbness and stiffness. Do you think that you could have a vein or two narrowing again?
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Postby garyak » Fri Sep 10, 2010 7:05 pm

magoo you write with an intellectual,clear mind - thanks for the update and gl, gary
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Postby Ruthless67 » Fri Sep 10, 2010 8:47 pm

Rhonda,

It is great to read your well written one year update. I'm delighted to hear that over all you are doing well and that most of your improvements are holding.

But I too am concerned over the return of your numbness though.

You are aware, I'm sure, that some of Lobbie's improvements haven't held. It will be interesting to hear what Dr. Dake has to say at the one year check-ups.

I thank both of you, and the rest of the pioneers, from the bottom of my heart for letting the rest of us folllow your journey through this process.

Progress is being made, but I believe there is still much to learn.

Most all of the pioneers that do check back in say even though their gains have not been necessarily "Jaw Dropping" they have been, as you say, life changing, and they would do the procedure all over again.

Lora
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Postby elyse_peace » Fri Sep 10, 2010 10:20 pm

Rhonda,
Congratulations on your anniversary. Thank you for posting. Sorry about your new stiffness. Hoping that it resolves.
Best wishes for your second liberated year.
Elyse
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