Brynn's Trip To Poland! I am Here!

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

Postby Brynn » Sun Feb 07, 2010 12:00 pm

Hi everyone! So sorry to have dropped off the radar. I came home to tremendous jet lag, a tremendous amount of my occupational work and then I get the flu last weekend and pretty much spent 30 hours in bed. :( After a very busy work week that I am catching up with now and finally getting my strength back after the flu, I am hoping to get back to my last procedure update and my sticky thread entry in the next couple days. My physical benefits have continued, so I will go on and on very soon! :D Take care, Brynn
41 years old, dx 1998, current EDSS 6.5
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Fantastic

Postby Dovechick » Sun Feb 07, 2010 12:07 pm

Fantastic, look forward to it...
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby SandyK » Sun Feb 07, 2010 2:40 pm

I can't wait to read it!
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Postby costumenastional » Mon Feb 08, 2010 7:31 am

Bring it on :)
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Postby Brynn » Sun Feb 14, 2010 2:40 pm

Happy Valentine's Day everyone! Well, I am now 24 days post-op and thought that I'd better finish up with my procedure tale. I showed up at the hospital on the morning of the 21st with instructions to come on an empty stomach. This is for the blood draw that they did first thing. The thing that I would recommend asking is whether you can eat AFTER that blood draw is done. I didn't, and regretted that, as you will read...I was hooked to a catheter and then remained in my bed for the day. Bring a book or your Ipod. :D I am not sure whether they hook everyone to a catheter but know that my roommate and I were both on one. Anyway, initially we had been told that Dr Simka would do my doppler at noon but in the end, I did not see him until about 5 pm. My husband popped in and out but seemed welcome to hang around as much as he liked. By this time, I finally asked about eating something and by now, it was too close in time to the procedure, so ask right after the blood draw. As Dr Simka did his doppler on my neck, he pointed out the restrictions on both sides...the right jugular was quite blocked and the left was, too, but not quite as badly. They finally came for me at about 9pm. I think they did at least three of us that day, although there were us two women and three men in the other room, so it may have been up to 5 of us! Given the fact that I wasn't originally supposed to be there until September though, you didn't hear a single complaint from me! :D Oh, also early on, the nurse had done a quick shave to my groin area, just to each side of the groin area where the vein runs. That was really a non-issue. In the operating area, I was given some drug through my IV that just sent my eyes spinning and then they appliad iodine to the entire groin area to prep for surgery. Several cloth drapes were laid down, isolating where they would be working. From that point, Dr Simka stood by, while Dr Ludyga and the cardiologist did their work. I recall feeling the slightest feeling of a flutter in my neck on both sides. Dr L moved forward to tell me that the left side looked good with just the balloon and that he wanted to put a stent in my right side. Done. All told, the surgery was done by 10:30pm. I went straight to bed and then woke at about 3am and ate a banana that my husband had left for me. Pretty slam dunk! The next morning, my dressings were changed and I left the hospital and moved to our hotel. I was very pleased with the professionalism. Feel free to ask me any questions! :D Brynn
41 years old, dx 1998, current EDSS 6.5
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Postby mshusband » Sun Feb 14, 2010 3:03 pm

Has anyone heard about the other clinic in Poland starting up treatment? Do you think it will be as reliable as Simka? Would you wait to be treated there or would you be willing to be one of the first ones to go ... based on the fact that there is a year long line for Simka?
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Postby Brynn » Sun Feb 14, 2010 5:31 pm

My understanding is that it is Dr Simka who is organizing the second clinic over there, so I would suggest contacting him to see if that is true. mariansimka@poczta.onet.pl Bye, Brynn
41 years old, dx 1998, current EDSS 6.5
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Postby annad » Sun Feb 14, 2010 6:42 pm

Hi Brynn,
thanks for sharing your experience! Can you tell us about the improvements that you've seen?
thanks!
:)
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Postby Brynn » Sun Feb 14, 2010 6:54 pm

Hi Annad, here is the link to my tracking sticky. Mine is toward the bottom of page three. http://www.thisisms.com/ftopic-8346-30.html Bye, Brynn
41 years old, dx 1998, current EDSS 6.5
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Postby cah » Sun Feb 14, 2010 7:05 pm

Brynn, you can link directly to your post:

http://www.thisisms.com/ftopicp-91553.html#91553

(done by clicking the tiny white papersheet-icon in the top left of your post and then copying the address.)

btw, it would be nice if you could tell us here in this thread when you have updated your entry, as the thread-icon only turns orange when there's a new entry but not when a post has been changed.

Thanks for your entry and all the best!

Cah
"There is only one good, knowledge, and one evil, ignorance." Socrates
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Postby Brynn » Sun Feb 14, 2010 10:11 pm

Thanks, Cah! I am always so impressed by how tricky this site is. I will do all that from now on! Take care, Brynn
41 years old, dx 1998, current EDSS 6.5
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Postby Brynn » Sat Feb 27, 2010 1:27 pm

02/27/2010 Boy, time flies! I am still feeling good. This is largely a copy of my Tracking thread update. http://www.thisisms.com/ftopicp-91553.html#91553
My physical therapy is productive, but rebuilding will be a long process. I am so anxious to get stronger, that I get impatient with that at times. My most pleaurable thing is the swimming pool. The bouyancy and some boards allow me to walk laps in the pool and really concentrate on correct walking. It feels great and really stretches me out, too. I would REALLY recommend it! Here are my ongoing benefits:
Warm hands and feet, more normal color. The swelling is gone.
Stronger bladder
Normal breathing
Neck pain is gone
Better balance
Right foot is becoming increasingly responsive
Fatigue is largely gone
Stronger core muscles/trunk strength

On the downside, which really isn't down, is the emotional side of recovery. I am now walking the line of overdoing it physically, in my efforts to rebuild muscle. That can cause frustration due to pure unreasonable impatience. And YES, I do still have about one day out of ten that is truly a bad day. But I will say that my BAD Days now are better than my best days last December, before the procedure...
I have finished my blood thinning shots that I brought home from Poland and would recommend to everyone going to Poland, that you get a better explanation of after care issues than I did. I did not ask those questions and have not been able to get my emails through. I just went to the Supplement store and got several items for vein health and that promote thinner blood. I will post those after I have been on them for a few days. For the most part, it's all good!

Take care, Brynn
41 years old, dx 1998, current EDSS 6.5
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Postby magoo » Sat Feb 27, 2010 3:03 pm

What a great report Brynn!
I can relate to the impatience you feel. I was the same way. I felt strong enough to do more, but my body was so out of shape that I overdid it a lot. Just know that there is no reason to worry about doing it all "right now" because the loss of fatigue and your gains will continue.
I think I was always worried it may be temporary in the beginning, but now I know it's permanent and I am less anxious to get it all done NOW. It is such a wonderful time for you and you should enjoy every moment. To gain abilities you thought would be gone forever is just amazing.
I am so happy for you. Enjoy every minute of your new healthier self!
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 Brynn » Sat Feb 27, 2010 7:55 pm

Ditto, Rhonda. That is just what I needed to hear, since I have had all of those same worries! I will email that report you wanted this evening. :D Thanks!! :lol: Brynn
41 years old, dx 1998, current EDSS 6.5
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Postby Katie41 » Tue Mar 02, 2010 12:02 am

Hi Brynn,
Check you pm, please.
Thanks,
Katie41
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