Erika`s procedure in Poland

[whyRwehere]

I hope it is your English only and not true that your wife is boring! My husband is using a stick, it is better than my hand, as we don't argue about who's not holding their hand right.

[6max]

sorry, my wife is bored ...
and if I haven't my wife's hand I walk like a drunk robot.
If the stick is in right side...I fall down to the left
I told 6-6,5 EDSS not 5-5,5

[ErikaSlovakia]

Hi Erika,
I'm Massimo , always italian and always i don' t speack english...always
I ' m very happy for your angioplasty
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...
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

Ciao Massimo!
- e-mail of Dr. Simka - you can find it on his web page, it is:
mariansimka@poczta.onet.pl
- I still have the same problem with my balance - but I must be patient, it can take even 6 months or more until more things are getting better
GOOD LUCK!!!
- all these doctors were there: Dr. simka, Dr. Ludyga, Dr. Kazibudzki and Dr. Świerad
Erika

[6max]

Ciao Erika
Were you so fast before surgery ?
Thanks a lot,
Massimo

[ErikaSlovakia]

Ciao Erika
Were you so fast before surgery ?
Thanks a lot,
Massimo

I am sitting in front of my laptop almost whole day. I must reply on 5 forums + some e-mails.
Anyway, I can not do much.
Erika

[ErikaSlovakia]

I am still without headache pills because I only have light headache.
I am not sure about the balance but I think I do faster movements than before. May be I only feel little bit more confident.
When I move more - more than 10 second I get hot and I am sweating more than before. My feeling to faint is not that strong anymore.
I still have the same problems to read some text. When I get hot I see worse just as before.
I do not feel the fatigue - it is the same from the first day - I strongly hope it remains like that.
Of course I am also happy regarding my headache.
It is so nice to wake up without headache, not to feel nausea, I have beakfast every morning - nice.
I am still like drunk and dizzy but I am patient.
My pulse is lower. I am more quite and satisfied like I did some big job - of course I did a big job.
I am still weak - I thing I am simply not fit. I only look good but that`s it.
It is just make up. I should do more sport but I am still not able so I just do the relaxation gymnastics.
Erika

[ozarkcanoer]

Oh, Erika !!!! I am so terribly fatigued and have headaches and double vision. I'm so glad that your headaches are better and your fatigue is gone. You have given me hope that I can feel good again !! Take it easy and don't push too hard. And keep us updated on your progress.

[Dovechick]

Erika, I'm so glad to hear that you are making good progress and coping with life with renewed energy.
Your experience is encouraging for those that follow in your footsteps. I hope that my daughter will be one of them. Her condition seems similar to yours so your experience will be something to compare hers to when she gets the procedure done.
Best wishes for continued health and progress.

[6max]

Ciao Erika,
I read your improvement after surgery and I' m very satisfacted
But I would like to know how many €/$ I have to save up for surgery
Sorry for my many questions...
Massimo

[ErikaSlovakia]

Ciao Erika,
I read your improvement after surgery and I' m very satisfacted
But I would like to know how many €/$ I have to save up for surgery
Sorry for my many questions...
Massimo

More people ask this, I also got some PMs.
So in case you get one stent, the price is around 2.100 - 2.300 Euro.
Many people knew about my problems with the health insurance. Well, the company did not help me but it was my bank. As I started to get my little income for disabled people, the were willing to lend me 1.000 Euro. I had 400 Euro savings, so I payed 1.400 Euro and of course all other expenses - hotel....
The doctor from today also told me the health insurance company was supposed to help me and they should pay for it.
I think it is just too new for them so they did not know what to do.
In case, you need more stents, it will be of course more, but each patient should ask the doctor for the price.
Even these numbers are just + or -.
Erika

[CureIous]

Erika, so very proud of you and all you have accomplished with so little resources at your disposal, you are truly an inspiration to us all. I know post-op the heat/sweating and other symptoms (stopped up right ear for example) came and went and there certainly seemed to be things that were changing and adjusting. Now it's 3 months out post-op, and things have leveled out quite nicely. All that weird stuff that was going on is gone for good. It is weird to be able to think clearly and remember things and not use walls to balance on (it was getting a bit irritating to rub on walls at times). To not "wind down" during the day to being a blob of jelly by nightfall. Now there is not enough hours in the day!

Anyways keep us posted as I know you will and so glad you were able to get help.

Mark.

[ErikaSlovakia]

Hi Mark,
thank you!
I also think it will only be better. I can not complain about anything. Some feelings are just new to me, like the heat sometimes. I always get scared I will feel bad because of the heat but it is just a little problem.
I did not expect the improvements during the first days. I could not understand it. I was very surprised.
It was not any big miracle but anyway it was not normal for me.
I enjoy not having headache a lot. I still have light headache often but after so many years it is really "cool" not to feel the fatigue so much and not to feel the headache so much.
And I do not feel the nausea, only sometimes but a little. My mother is so happy I eat my breakfast. I am also happy I do not have to listen to her complains - do not tell her anything!
I do not feel my stent so I can not even complain about any pain regarding the stent. Ithink the stent is sitting very happy in my vein
Erika

[6max]

Thanks a lot , Erika
Have a nice day/week

[AndrewKFletcher]

Hi Erika

In the interest of science and to settle this once and for all would you be prepared to sleep horizontal for one week and report any differences you notice during and at the end of that week?

Foreverspring followed a similar progress to yours without surgery using the inclined bed therapy method.

I and many others would be very interested to learn what can and can't be attributed to IBT.

Best

Andrew

[ErikaSlovakia]

Hi Erika

In the interest of science and to settle this once and for all would you be prepared to sleep horizontal for one week and report any differences you notice during and at the end of that week?

Foreverspring followed a similar progress to yours without surgery using the inclined bed therapy method.

I and many others would be very interested to learn what can and can't be attributed to IBT.

Best

Andrew

Dear Andrew,
my very first reaction after reading these word was: "Oh No Forget it
But then I thought as you say in the interset of science and for the other patients in the whole world. I will ask one of my brothers to take the piece of wood away.
I dont like the idea but I will do it.
Erika
P.S. I still believe the no "good morning headache" and no nausea in the morning is because of the IBT.