My second trip to Poland

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

My second trip to Poland

Postby Brynn » Sun Mar 14, 2010 1:10 pm

So, I had my surgery on January 21st. At that time, I had angioplasty with a stent placed into my right jugular and had the angioplasty only on my left. I saw tremendous improvements with no fatigue, improved balance, warm hands and feet, a stronger voice, better breathing, no more sore neck and my constantly low BP of 100/60 had gone to a normal 120/80. I felt so good that I began physical therapy and pool work. Fast forward to about 6 weeks later, and I began to have some bad days and in the first week of this month, I realized that all of the gains I had made are gone. Of what I listed above, my breathing is still better, but everything else has gone back. It is probable that the left jugular has become restricted again. Euromedic has been good enough to squeeze me in for a probable second stent on my left side toward the end of April. It will be a bit hard to wait, but now I know the improvement that I can look forward to getting back! I believe in this treatment now, more than ever because after 6 weeks of proper BP readings following my surgery, my BP last Wednesday was back down to 100/60. Obviously for my body, having the proper flow on one side is not enough to keep me well and improving….So, back to Poland I go and the adventure continues! :D Bye, Brynn
41 years old, dx 1998, current EDSS 6.5
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Postby ozarkcanoer » Sun Mar 14, 2010 1:16 pm

Brynn, I'm so sorry for your setback... Good luck with your return trip ! Let us know all about it.

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Postby kc » Sun Mar 14, 2010 1:21 pm

Good luck Brynn, maybe restenosis happens more than just 50% with angioplasty. I have been reading a few stories about restenosis with angio and I am rethinking my stent attitude.

Good luck again we are with you!

kc :wink:
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Postby Brynn » Sun Mar 14, 2010 1:27 pm

Thanks, guys. Yeah, I probably should have pushed for a stent on the left side too, but who knows...at least this time it won't be 25- C! Brynn
41 years old, dx 1998, current EDSS 6.5
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restenosis

Postby jak7ham9 » Sun Mar 14, 2010 1:27 pm

so sorry brynn. ithink we will all have a lot of restonosis until we get decent stents or grafts. BUt at least you know it works! I get operated on march 22 and as excited as i am certainly think i will need to return for further work. barbara
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Postby ErikaSlovakia » Mon Mar 15, 2010 12:48 am

Hi Brynn,
oh, I am so sorry. It must be frustrating to gain something and then lose it.
Well, all of us just learn...
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby Asher » Mon Mar 15, 2010 12:58 am

brynn, end april seems so far away, but see it in percpective; i'm scheduled some time in '11. Ik sound like in a few weeks weeks from now you'll have your life back. Bless and thanks for sharing.
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Postby magoo » Mon Mar 15, 2010 10:24 am

Brynn, Sorry about the setback. I am so glad you were able to get back in relatively soon. It may be frustrating, but at least you know what's happening. You have a great attitude and I wish you the best of luck on your second trip!
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 SandyK » Mon Mar 15, 2010 10:51 am

Best of luck Brynn!
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Postby Katie41 » Mon Mar 15, 2010 5:40 pm

Oh Brynn, I'm so sorry! That is the only thing I'm afraid of....that they won't do enough. I did hyperbaric O2 chambers last summer and had amazing (short term gains, so I know what the increased O2 can do. Hopefully, you will be back to your best self and stay that way!
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having to return to poland

Postby caraboo » Tue Mar 16, 2010 5:28 am

Brynn wrote:Thanks, guys. Yeah, I probably should have pushed for a stent on the left side too, but who knows...at least this time it won't be 25- C! do you have to pay the same money when you return to polandBrynn
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Postby Brynn » Tue Mar 16, 2010 8:57 am

I am not being charged the same amount as the first full procedure.
41 years old, dx 1998, current EDSS 6.5
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Postby Brynn » Tue Mar 16, 2010 9:06 am

Magoo, SandyK, Katie41 Thanks, ladies! Yeah, I will hang in there! :D Now I just have a better idea of what I will get back to. In the meantime, I am going to try to spend more time in the pool building muscle, in preparation.
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Postby sunlounger » Tue Mar 16, 2010 9:43 am

Hi Brynn,
Glad to hear your going back in April and you will get those improvements back I.m sure :D

I am having a doppler next week 24th as I think I could of restenosis,
Because I did not have any improvements it's hard to know :?
I hope so then theres another chance :D
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Postby Aaron » Tue Mar 16, 2010 10:09 am

Hi Brynn,

I have been tossing around the idea of going to Poland for this procedure.

I do have a few questions, if you don't mind.

What does the procedure cost?
(I am having an MRV in the states next month)
Does the hospital have English speaking staff?
How long would I need to stay in Poland?
How do I get an appointment for the Liberation Treatment?


Thanks and Be Well!
Aaron
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