Erika`s procedure in Poland

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

Postby ErikaSlovakia » Tue Nov 10, 2009 11:46 am

Pepe wrote:Congratulation Erika... I have no words to express our feelings for your improvements... :D :D :D :D :D
Pepe


To be honest I CAN NOT BELIEVE it! not to feel the fatigue is quite strange.
I do not know how to relax, before, I had to be in bed almost every day in the afternoon. I start to work on my PC at 8 AM and I am still here. It is almost 9 PM. Of course, I was outside to see a doctor, post office...

How do normal people relax? I do not know what to do, I just work - e-mails, CDs, Forums - my muscles on my neck hurt. I think I should relax, my eys hurt also. I can not do much physical things - I am still weak and I have my other symptoms. This is very new situation for me. I do not have any friends. I go to see two doctors tomorrow a neurologist - she wants to know everything, she is very nice, the other doctor is more my friend - she is specialist in infectology, but she also wants to be informed. The slovak MS magazine wants update. It will be out in December. I want to read more about iron deposition - but I do not know if that is relax. Well, I must think about it. I do not want to complain but I have too much energy. I think I will teach my nephew English and German just as usually - he likes it so far, he is only 10.
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 cheerleader » Tue Nov 10, 2009 12:03 pm

I am so happy to read about your relief from fatigue, Erica. Now you have more energy to live your life...make sure to take time to relax and take care of yourself! How do normal people do this?

Read some good books (not about MS!), listen to beautiful music, spend time with your family and enjoy your young nephew. Eat some good food, watch the sunset. Paint pictures, knit a scarf, bake a cake...find a hobby. Eventually you can begin physical therapy to regain strength. You will learn how to balance your time with helping others and helping yourself. Right now you need to heal-the world will wait.

My prayers for you, Erika, are for your healing and learning how to live this new life,
Joan
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby ErikaSlovakia » Wed Nov 11, 2009 8:50 am

Well, I have read many stories here since July 23.
I do not know if I am really so lucky or the Polish doctors made some magic - may be it is a combination of both but I did not feel any pain AT ALL! after the procedure around my stent neither in my neck - nowhere.
I did not take any painkillers at all. I think they gave me some during the procedure. I still do not have any pain.

I have less headache every day. If some, so I only have headache in the left part of my head.

I got scared this morning. I went out of our house. When I was on our street, I saw the street much better than before. I did not expect it so I got so shoked for next 15 minutes. I still do not have enough time to think how I feel. But I am sure, it was - still is my better vision! To be honest I thaught my left optic nerve was damaged so much that it would may be never be better. It is at least 15 % better. I am sure. I was so shoked to see better after 5 years. So while walking outside I do not just look on the floor I even look often straight like normal people do.
I am very surprised.
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 Quest56 » Wed Nov 11, 2009 9:27 am

ErikaSlovakia wrote:...So while walking outside I do not just look on the floor I even look often straight like normal people do.
I am very surprised.
Erika


Hi, Erika,
This is very good news for you. About your comment at looking less at the floor, I've noticed this as well. For many years now, I've compensated for balance instability by using my eyes to help maintain my balance, this works best if I keep them focused on the ground in front of me.

I've been taking daily walks now for a few weeks to help rebuild my stamina after the stent procedure in mid-September.

I've been newly amazed at how beautiful it is where I live. I've lived here for 20+ years, but am now seeing it as if for the first time. My vision is less focused on the ground as I move around, so I can really take it in.

Anecdotal yes, but amazing to me none the less.

Enjoy...

--Tracy
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
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Former Ampyra User
Regular Botox Bladder Injections
300mg d-Biotin / day
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Postby mrhodes40 » Wed Nov 11, 2009 11:02 am

Your diligence paid off and you are done. I am so happy for you Erika!

better days and better ones even after that are coming! Even at 6 months I am still evolving and finding I am better. I am delighted at your visual improvement! That is great news

Now Tracey and Erick remember to keep notes so you remember what to put on your tracking thread because I guarantee you that with time you will forget how you USED to be and this will all seem normal to you....
8)
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Robnl » Wed Nov 11, 2009 12:16 pm

It's amazing Erika!

Your posts ar4e making my confidence to go stronger!
There are always doubts before doing things like this, but reading the improvements you and others experience....just make it easier rto go!

I'm sure improvements will go on....MS has taken years to get you ill, so recovery will also take its time.

I just can't understand that there is no 'booming' interest until now...but it will come. i'm sure.

Robert
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Postby bluesky63 » Wed Nov 11, 2009 12:20 pm

This is so amazing to read. You must feel like you are in a whole new world. It must be like waking up from a dream and seeing the world again as it used to be for you. :-)
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Postby ErikaSlovakia » Wed Nov 11, 2009 12:28 pm

bluesky63 wrote:This is so amazing to read. You must feel like you are in a whole new world. It must be like waking up from a dream and seeing the world again as it used to be for you. :-)

Yes, it is new world. As I still do not have time to think about it, it surprises me. Moreover, I did not expect it so soon.
I have no idea what surprise comes next. 8O
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
ErikaSlovakia
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Postby ozarkcanoer » Wed Nov 11, 2009 12:49 pm

How wonderful to have this beautiful gift of vision !!!! I hope every day surprises you with feeling better and happier. Thanks for sharing your journey with us !!!

ozark
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Postby ErikaSlovakia » Fri Nov 13, 2009 1:30 am

Today is the third day I only have no and if so only mild headache.
I am not so busy anymore, so I have enough time to do things slowly not under stress.
So I would say I had stronger headache after the procedure only for 4-5 days. But it was not stronger than my MS headache, so do not worry.

Of course I would be happy if my MS headache does not return. But I think I must give more time to my brain and to my veins. I am a patient patient.

Anyway, it is very nice to have only mild or no headache I do not have to take any pills for this.
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
ErikaSlovakia
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Postby ErikaSlovakia » Fri Nov 13, 2009 4:20 am

I have tested to have a shower today with more warm water than usually and I also washed my long hair. I had to do it separately until now. E.g. just hair in the morning and the body in the evening.
I was scared to do it but I wanted to try.
My heat tolerance is at least 50% better. I did not have problems to finish my shower, I did not have to sit, I did not have to interrupt it, my left eyey went worse as always after beeing in some warm place.
I felt a little weaker but it was not that bad as 3 weeks ago.

I feel little tired and sleepy. I still have the muscle stiffness on my shoulders - just too much internet for last couple of days.
I think my body is telling me: "Erika, you have done everything you had to do in these last 2 weeks, now you can feel tired and have rest."
But I also know, it will be up and down.
Moreover the weather here is cloudy, raining, dark sky, at 5 PM it is getting dark a lot and 6 PM it is dark completely.
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
ErikaSlovakia
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Posts: 1125
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Location: Slovakia, Europe

Postby Robnl » Fri Nov 13, 2009 6:57 am

Erika,

Try not to 'cross the line' too much :P
It will be very tempting to try new things, but remember to build it up carefully.

But it sounds great!! :D

I wish i already had the surgery....

regards,

Rob
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Postby ErikaSlovakia » Fri Nov 13, 2009 7:26 am

Robnl wrote:Erika,

Try not to 'cross the line' too much :P
It will be very tempting to try new things, but remember to build it up carefully.

But it sounds great!! :D

I wish i already had the surgery....

regards,

Rob

You are right. I started with some slow relaxation gymnastics - something like yoga - it is for my neck and shoulders. It helped me SO MUCH.
I just go for short walk every day - 30 minutes - I can not walk more anyway, with my cane of course + this relaxation gymnastics.
I am not even thinking about lifting anything. I know I am very weak.

Next Tuesday I go to see an angiologist not far from my town - only 33 km. I can drive there. He would like to have more info. Very good.

I know exactly how much you want to have the procedure. I know now I only go "downstairs" - little by little but my bloodstream is finally fine!
Oh man, it is very good feeling just to know that. I even felt dirty before.

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
ErikaSlovakia
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Postby ErikaSlovakia » Sun Nov 15, 2009 1:46 am

My procedure on TV Silesia.

If I understood it well in polish, you should be able to watch my procedure online on November 17th at 4:40 PM Polish time (Vienna time).
You can also watch it later as they keep it in their history.

History is here:http://www.tvs.pl/tv/program,na_wage_zdrowia,50.html

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
ErikaSlovakia
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Joined: Wed Jul 29, 2009 2:00 pm
Location: Slovakia, Europe

Postby 6max » Sun Nov 15, 2009 3:23 am

Hi Erika,
I'm Massimo , always italian and always i don' t speack english...always :roll:
I ' m very happy for your angioplasty :D
i' m sorry but I ' d like to know 2 informations
1) You said :
Correction of my information.
Dr. Kazibudzki is actually vascular surgeon. And there was also Dr. Świerad who is interventional cardiologist, and his assistance was very important since he has experience in intravenous endovascular procedures in the area next to heart.

Could I have e-mail where I have to write because , I' m sure, in spring I 'll go to poland to do your surgery... :wink:
2) I 'm 6- 6,5 EDSS...I 've very imbalance, I can walk only with the help of my wife's hand...and my wife is is bored :? And I 've PPMS, so not RRMS :(
Imbalance is going better with this surgery or not , always the same??
Have a nice sunday,
Massimo
Last edited by 6max on Sun Nov 15, 2009 3:40 am, edited 1 time in total.
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