This Is MS Multiple Sclerosis Knowledge & Support Community

Alan it's so good to hear about your improvements everyday. Hope to have something good to report myself when it's my turn

Do you know the brand and type of your stent? Dr. Simka recently said that they were using stents modified for veins. Maybe Dr. K is using them too, who knows?

Also, what is your medication, and for how long?

Thanks for the answers.

Hale

Hello Hale

Sorry I do not know which stent I have but I will mail Tychy and ask. The medication I am on is: Aspirin - 1 per day. Clexane 60mg 1 per day for 2 weeks. Plavix (clopidogrel) 75mg 1 per day for six weeks.

Alan

These are my last two updates to the tracking thread.

30/04/2010
Muscles behind left ear relaxing – strange popping or crunchy noises in ear – in fact neck muscles relaxing all round. Can turn head easier.
Very clear-headed
Very sharp eyesight
Can do 1 foot in front of another walk
Strangely have had small but persistent skin infection on both hands for over two years. It is now clearing up.
Ears continue to improve – I did not expect this so it cannot be placebo.
No headache and sense of weight on head and shoulders when wake up. Head feels light.
NO FATIGUE – I have been getting up before 8:00 a.m. and by 11 p.m. I have been pleasantly tired and easily fallen asleep. So normal!

02/05/2010
Previous improvements have been maintained. Small things I have noticed: Notice air-movement on face when outside. Hands are pink and skin slightly shiny. Legs feel like a pair again. Looking in a mirror eyes are shiny. Still very gentle dizziness.

In general I now feel very close to normal. Thinking about the supposed placebo effect three things I have noticed I did not expect to get. So they cannot be placebo. I am thinking of the deafness improvement. The moist shiny eyes I now have and the shiny softer skin. My thought is that restored blood flow has made my conjuctivae start to work again and my sebaceous glands have started to work again. The deafness could be skin quality improving inside my ear? These are just little things but tend to support the idea that the whole thing is a vascular problem and that it is not placebo. If my links work here are some pics of my veins.


Shot at 2010-05-02


Shot at 2010-05-02

Cheers

Alan

Thank you for keeping on posting! VERY interesting to see your pictures.

On a side note - I e-mailed Kosteki a week ago - no reply. Is this normal, or should I re-send? (see, now you are a "Kosteki expert" )

So happy for you...

Hi A McG,



Ive sent pm too you, dont know if you got it.

thanks
caraboo

Ndwannabe

I would talk to Katherine. Her phone no is earlier in this thread.

Alan

AMcG wrote:Ndwannabe

I would talk to Katherine. Her phone no is earlier in this thread.

Alan

Thank you Alan, Katherine promptly replied! I actually used her e-mail address and meant to call if I would not get a reply, but I did!

I was told that the next opening will be somewhere in June or July (which is JUST fine!). I supplied whatever missing information needed and will now be patiently waiting.

I wrote to her too. Giving up on Canada.

Hi All

Just been reading the news. May 5 in Canada might just turn out to be a great day for CCSVI. Really pleased.

My condition is still great. I think I have now made all the initial improvements I am going to. I am expecting there to be more when my brain has had time for re-myelination and to recover function that was more severely impacted by the CCSVI. So I will probably report in a month or so.

I also need to say something about Kostecki and Katherine. I naturally was very pleased at my experience in Tychy and very grateful to Dr. Kostecki and Katherine and was keen to encourage other people to go. This may have caused problems that I did not intend. The set-up in Tychy is a voluntary non-commercial effort not like Euro-medic. That is obvious by looking at what they charge.

Dr Kostecki is not motivated by profit but is acting from compassion for MS sufferers and his interest in the science. He is very committed and hard working and very busy with his other medical duties as a full-time vascular surgeon. Unlike Euromedic he does not have a team to administer the process of arranging appointments and liaising with patients. This function has been performed free by a friendly travel agency called Europa Nostra. The result is that he can only arrange a small number of procedures per month. It has been the case in the past that arrangements have been made and patients have not turned up. Those places are then lost which is a great shame when only a small number are available in the first place.

Because so much is being done on goodwill they have asked me to make it clear to prospective patients that they cannot operate like a commercial operation. So they are unwilling to accept tentative enquiries. They want definite applications which will be followed through. Similarly Europa Nostra wishes to have payment in advance not because they are profit oriented but simply because they have been let down in the past.

I have met all the people involved and I can assure you they are good-hearted and committed people and are not driven by profit. I am very concerned that MSers and the people in Tychy should treat each other right. I would recommend people to go but I would ask people to accept the situation as it has been described and do things in the way Europa Nostra and Dr Kostecki have asked.

I hope this helps.

Alan

Alan, thanks for posting this.

I am not very clear about "payment in advance". I was under impression the payment was rendered after the procedure is administered

Now, mind you, I do NOT have a problem with paying in advance, it just was not communicated to me (oh yes, it would help if I said that I received my invitation today!)

I replied saying I accept, now I feel that I should have asked where I should transfer money? Or "in advance" means once we are in Poland? How does the money transfer happens there anyway?

It's late and my brain is not working well. This might all make sence tomorrow morning

Hi All,

Just thought I would add, they ask for payment in advance for the transfers, hotel, MRI, Doppler etc, not the actual Liberation Procedure.
I was lucky enough to have a cancellation appointment for next week where the person failed to transfer their advance fees.

Like Alan said, they all seem to be extremely nice people just wanting to help.

Alan

Hi

When I referred to advance payments I meant Europa Nostra. Katherine will take your payment for the hotel and transfers. For the appointments you will need to take Zlotys.

Alan

AMcG wrote:Hi

When I referred to advance payments I meant Europa Nostra. Katherine will take your payment for the hotel and transfers. For the appointments you will need to take Zlotys.

Alan

Hi Alan,

I think they may have changed this, I have paid to Katherine in advance for everything apart from the actual Liberation Procedure, which can now be paid by Credit Card.

Alan(2) !!

so do you think they'll be ok if I say no stents? Just angio.I already have imaging and probably I dont need stents.

If they say they have to stent I'm a no-go.

Their attitude is to stent only if everything else fails, they certainly don't push for stents and they will respect your wishes ! I needed a stent, but when I asked them to try again with the balloon first, they did and only then did they ask me what I wanted to do.
So, really, don't worry Billmeik !
And I just have to say, as Alan did (AMcG) not to forget that Dr. Kostecki and his team are not into this for financial benefits ! Dr. K. worked everyday till late, even Sunday ! Such dedication, humanity and professionalism is rarely found, if you ask me... I really hope people will respect that and not loose his time when he has so little of it to start with.