Fraser's Adventures in Poland...

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

Postby fraser » Thu Mar 18, 2010 5:18 pm

Also, do not for one minute listen to anyone that talks about Dr. Simka and how the treatment is overpriced. You are basically escorted everywhere when you are here, your hotel is included, an eye test, MRV, doppler, THE OPERATION, etc. There are many people that have to be paid. When you see the facility, the nurses, doctors, you will wonder how the price is so low.

Now what they are charging at Stanford, maybe you could say that, but not here in Poland. Although it's early days for my husband, I am just going to enjoy living in the moment for now - it is worth every single penny, and every single hassle we encountered to get here.

6,900 euros, to possibly get your life back...I think so.
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Postby Brynn » Thu Mar 18, 2010 5:32 pm

Fraser, that is fantastic news! They have it down pat over there. Let's see all the good things tomorrow brings! Brynn
41 years old, dx 1998, current EDSS 6.5
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Postby ComfortablyNumb » Thu Mar 18, 2010 8:10 pm

Fantastic!! I couldn't be happier for you both. :D :D

So glad to hear that everything went well and that he is feeling the benefits already. Can't wait to hear more continued improvements and about the rest of your experience in Poland.

Stephen :D
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Postby Lelo » Fri Mar 19, 2010 2:45 am

Hi Fraser :D Had my surgery done the 11th of March. I am with you when it comes to the costs. I heard that the procedure at Stanford is 90000 dollars. Dr Simka has been offered huge amonunts of dollars, from people want to have advantages in the waiting list. They don´t take it, and for me they are the nicest and honest people you can ever meet.
I really keep everybody close to my heart.
ESPECIALLY Marek, my friend forever. :)
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Postby fraser » Fri Mar 19, 2010 9:15 am

This morning we were driven to the hospital at 8:00am to pick up my husband, and the others liberated yesterday. When I arrived at the hospital my husband was ready to go. The doctor provided us with a folder with all prescriptions, and answered last questions. Back to hotel, had prescriptions filled and then gathered with a few others for breakfast.

My husband was feeling so well. We talked over breakfast for quite awhile - all of us feeling very excited about our experiences. I was thinking to myself how strange it was to hear my husband talking, and participating in the conversation for such a long time. I looked at him, and he was actually alert and really engaged in the conversation. Normally by this time he would have totally tuned out, felt exhausted because he was talking "too much" and would probably either of left the room, or would just sit silently trying to recover from his fatigue or dizziness. He was alert for the whole time, probably close to 1 hour. We then left the restaurant and decided to go for a walk. It was a long walk - no discomfort or drop foot. Only discomfort was from the incision site and a bit of stiffness in his neck, but no feeling of fatigue from the walk at all!!
In the past he could never walk too long without his drop foot kicking in
and bringing the walk to an end. Not today - clear head, no fatigue (and with only 5 hours sleep). The other thing I noticed today was something with his foot. Usually the toes on his right foot are stiff and are sort of bent at the joints, with the ball of the foot more of less jutting out or down. His toes are lying flat today.

It really feels like a dream, and totally surreal. All the accounts I read of people feeling "different" after the operation, I didn't doubt but really couldn't imagine. I really didn't think that would happen to my husband - because nothing up until this point has been easy and really it just seemed too good to be true. Maybe it could happen to others, but not for us. All I can say is that it doesn't seem possible that in one day your life can change so radically. The happiness we feel cannot be described. I know some of you are thinking that it's too early to know if these changes will stick, but even if they don't we now know that this is not a placebo and that CCSVI is REAL, and it's not just us but everyone else we've connected with here has also felt a "change".

And so...we will enjoy every moment of this.
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Postby hope410 » Fri Mar 19, 2010 9:18 am

You paint a wonderful visual for your readers.

Congratulations on the success of the procedure and I hope for good roads ahead. Please keep us up to date on how the post-treatment period goes.
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Postby tipsyturtle » Fri Mar 19, 2010 9:23 am

Fraser,
I am deeply touched by your account and I wish you and your husband wonderful days ahead.
Thank you, thank you for sharing!

jo :D
Katowice, April 7/8
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Postby annad » Fri Mar 19, 2010 9:30 am

I feel a bit like you did . . . I believe in this, I believe it's happening to others but just can't picture it happening to me. Maybe because it has been so long since I've felt 'normal' or better.
Continued wellness!
Thank you for sharing your experience!
Fantastic!!!
:)
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Postby Brynn » Fri Mar 19, 2010 10:54 am

YES! That is exactly how it goes! :D Crazy, but true! And you will continue to see improvement. I would recommend however, that you keep a daily log. It will make it easier to be able to compare his condition in case he begins to regress like I did. I do however, have a 7 week memory of what I look forward to getting back to next month! Congratulations! Enjoy! :D :D Brynn
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Postby ClaireParry » Fri Mar 19, 2010 1:12 pm

It is wonderful to hear your experiences in such detail. So important for myself, going over a week tomorrow.

I truly hope that the improvements continue to come.

It's a wonderfully exciting time.

Claire
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Postby ComfortablyNumb » Fri Mar 19, 2010 3:06 pm

FANTASTIC. :D :D

Couldn't be better news. Thanks for keeping us up to date. I am glad to hear all the glowing reports.

Stephen
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Postby Johnson » Fri Mar 19, 2010 3:54 pm

Fraser,

I am so glad to read your account. I know you had some trepidation with the stent, but that is pretty much moot when your husband is feeling so well, so fast.

As far as whether the benefits remain, I think that even if they lasted a couple of weeks, or months (let alone forever), it would be a wonderful holiday from MS. I know a woman who just spent ~$10,000 on a month-long holiday trip to Antarctica, Easter Island, etc. Heck, a holiday from MS sounds better than that.
My name is not really Johnson. MSed up since 1993
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Postby fraser » Fri Mar 19, 2010 11:50 pm

Thank you to everyone that has left such wonderful, encouraging words of
support. It is so exciting to share our experiences with the MS community, especially those interested in CCSVI. So, a huge thank you - your replies, and words leave tears in my eyes!

I know how much a positive report about Poland would have meant to us during the decision making process. Unfortunately I read too many negative reports about CCSVI, stenting, etc. Even though Canada's W5 report supported the whole CCSVI theory, since then there have been more negative stories than positive. I think that is why we left home feeling very nervous, and uncertain. If you are coming to Poland, as many of you seem to have your dates - do not be worried AT ALL. Just look at it as a chance to find out information about your particular condition. Once here you will see what I have been talking about - you will have complete faith in Dr. Simka and his team. We were especially worried that they would say that my husband could not be fixed because of all the things we heard about PPMS. They didn't even ask us what type he had! They saw the problem and, said a stent was appropriate in his case and showed me the evidence. He is a very cautious doctor about using stents so I know it wasn't his first course of action. When he is operating, he tries the ballooning first to see if it holds and if it doesn't he will use a stent. When you see the improvement first had, even with a stent it won't matter in the least - because my husband felt so wonderful, feels so wonderful, I can see the difference that it has made so I am cool about the stent now (& I was pretty scared about the whole stent thing before leaving!) Also, I should note that not everyone in our group received stents - 2 patients did not. The ballooning seemed to work for them, so that is all he did. There were 2 patients that were back for further treatment because their ballooned veins eventually reverted back to their previous state. He then used a stent, but he'd rather use ballooning, and I really like that approach.

Had a wonderful evening last night with the other CCSVI patients. Had drinks on the rooftop bar, and dinner together as well. When you're eating breakfast in the morning make sure to introduce yourself to others in the restaurant that you suspect are there for treatment - it has been so comforting to share our experiences with these other like-minded people.

My husband is still sleeping - I think he may have slept through the night, (which is a rarity!). Each new day right now is very exciting.

Thank you again for all your kind, encouraging words.
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Postby fraser » Fri Mar 19, 2010 11:59 pm

PS. Forgot to tell you that last night throughout dinner my husband was talkative the whole time. We were socializing for 6 hours and he didn't fade or tune out once!! By the end of the evening I was tuning out, but he was still going strong! It was really, REALLY incredible.

Someone in the group noticed he has better colour in his face, which I had noticed earlier in the day as well.

I think that's all to report for now!
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Postby colapesce » Sat Mar 20, 2010 5:07 am

hi Fraser,
Many thanks for posting these reports. They really cheer me up! Hope all continues to go well for you both.
cola
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