Our Poland Experience (April 14, 2010)

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

Our Poland Experience (April 14, 2010)

Postby bobcat » Sun Apr 25, 2010 4:25 pm

We just returned from Poland, after a long delay due to the volcanic eruption in Iceland. We went to Euromedic where Dr. Symka and his team diagnosed my wife with CCSVI and performed the liberation procedure. Her right jugular was completely collapsed with 0 flow. The team performed ballooning and placed a 14mm x 40mm stent after ballooning failed to keep the vein open in several attempts. If anyone is interested in some of the other details involving the procedure, I can post them later, but it has been documented very well several times within the CCSVI forum.

Since the treatment we have been able to see many improvements in my wife's condition.

- she is now able to lift her right leg with her quadricep muscle which has been non-functional for over 2yrs
- Improved balance
- significantly reduced spasticity
- increased endurance
- increased strength and dexterity in her right hand
- loss of vertigo when looking upward
- normal temperature in hands and feet
- clearer thoughts

All of this has far exceeded our expectations of the treatment and we are very optimistic and hopeful going forward. Many of the improvements above have resulted in an improved fluidity of movement and walking gait. She has since been moving inside the house without the aide of her cane and has been walking outside with her cane in situations where she would have relied on her scooter. She will still use the scooter for longer distances. However we are not losing sight of the long term goal of slowing or stopping the progress of this disease.

We did not take this decision lightly...

My wife was diagnosed with RRMS in 1991, but can remember MS symptoms as early as 9yrs old. Over the years she has been treated with 4 of the major MS drug protocols, all of which have left her worse off than when she started due to the side effects. Last of which, Tysabrai, induced 2 seizures from which she had difficulty recovering. This resulted in a greater dependence on her scooter and we also purchased a handicap accessible van for additional assistance. Although still officially diagnosed as RRMS, she has been moving towards SPMS in recent years. Taking all this into consideration, we pursued the CCSVI treatment with an understanding that there are many unknowns along with concerns involving stent migration and stent lifetime in a vein. We didn't feel she had the 2-4 years it is going to take to benefit from the results of proper medical trials and unfortunately it seems the start of trials in the United States is moving rather slowly.

We have been very fortunate, because even though our neurologist is skeptical, he has been supportive. We live in the SF Bay area and he was able to arrange an MRV utilizing the Dake protocol at Stanford. The results of this test were in 100% concurrence with the findings made by Dr. Symka and his team in Poland. In addition, through a friend, we were able to contact another doctor in Poland that was able to vouch for the legitimacy of Euromedic and Dr. Symka. All of this, combined with the wealth of information in this forum, gave us the confidence to move forward at different points in the process. (A special thanks to Cheerleader who seems to have really driven this forum.)

Having gone through this and benefited from the treatment, we feel an obligation to help prove this out one way or the other. We had an assessment performed by a physical therapist prior to the treatment and we will be returning to them in the upcoming weeks for a re-assessment to help quantify the improvements. From there we will be circling back with our neurologist, and hopefully with his help, look to take all this information back to Dr. Dake and Stanford. Hopefully my wife can turn her experience into a useful case study. A friend who works at the local hospital is also going to try and get my wife in front of their Neurologist Panel for discussion.

We still have a long way to go to understand the full impact of this treatment. We wish you all the best in the quest to stop this disease we have all become too familiar with.

- bobcat
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Postby eric593 » Sun Apr 25, 2010 4:40 pm

That's great bobcat,

Did you add this information to the tracking sticky at the top of the forum? It will be good for you to continue adding information as it becomes available as time passes.

I hope there are continued improvements.
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Postby ozarkcanoer » Sun Apr 25, 2010 4:44 pm

bobcat !!

Another wonderful story ! Thank you for coming here and posting your wife's experience with the CCSVI treatment. Have you considered adding a post on your wife to the tracking sticky ? It's at the top of the board.

ozarkcanoer
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Postby bobcat » Sun Apr 25, 2010 4:47 pm

that's next on the list of things to do....thanks
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Postby ndwannabe » Sun Apr 25, 2010 8:51 pm

Bobcat, congratulations to you guys! I live in Bay Area too. Will PM you.
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Postby Johnson » Sun Apr 25, 2010 9:12 pm

bobcat,

Congrats to you and barbaracat for getting it done. All the best in your new life together!
My name is not really Johnson. MSed up since 1993
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Postby Rose2 » Sun Apr 25, 2010 9:28 pm

bobcat,
Glad to hear your wife was able to be treated and is doing well.
I know how excited and tentative you probably feel.
REST. It is real. I love the list of her improvements so far.
Thank you for your information and please keep us posted.
Good ideas on the pre-treatment assesments.
Sincerely,
Rose ;)
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Postby sofia » Sun Apr 25, 2010 10:42 pm

Excellent news! It always makes me happy to read positive reports from those who has had treatment done. What a nice start to the day :D
good for you guys!
<div>I have lived with ms for 8 years. The last year has been hell, I've gone from shite to even worse every single month, until my liberation in May. </div>
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Postby costumenastional » Sun Apr 25, 2010 11:10 pm

Keep it coming my friend. So the whole world can see.
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Postby mags4short » Sun Apr 25, 2010 11:23 pm

Thanks for the update Bobcat, I hope that your wife continues to improve.

Mags x
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Postby Badger » Mon Apr 26, 2010 5:39 am

Great news!!!

It is so good to here of more and more patients being set on their own road to recovery.

Hopefully everything continues to improve, all the best. :wink:
<em>Badger
RRMS 2004</em>
Appt Katowice 23/24th March
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Postby prairiegirl » Mon Apr 26, 2010 7:18 am

Thanks for posting-- great to hear of the positive results for your wife. Thank you for advocating for CCSVI treatment for others!
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Postby AllyCanada » Mon Apr 26, 2010 5:34 pm

GREAT TO HEAR! :lol:
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Postby Zeureka » Wed Apr 28, 2010 5:06 am

Fantastico and wish you to find lots of joy in these improvements! Thanks for posting :D
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Physical Therapist Post-Assessment

Postby bobcat » Tue May 04, 2010 10:06 pm

Today my wife returned to the physical therapist that performed the initial assessment prior to the procedure. Needless to say he was both excited and surprised by the 25% improvement he was able to "quantify"!! They are now going to move her out of water therapy and into excercises to continue to increase her leg strength and improve balance.

She was so thrilled to receive the validation today!! Not to mention she is waking more and more. Her latest accomplishment was to walk through the grocery store instead of using the scooter....couldn't do that 9 mo ago!

She will meet with her neuro next Friday, although based on some initial feedback from our friend trying to get us in front of the neuro panel has not been positive. "We advised her against it..." was the blunt comment from a fellow neuro within the hospital.

We will continue to press, sooner or later these folks will have to take their heads out of the sand!!! Repeat after me....it's not a placebo effect!

- bobcat
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