Appt with Dr Kostecki

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

Appt with Dr Kostecki

Postby ngocky » Thu Mar 04, 2010 11:15 am

Hi all

We have received an email from Dr Kostecki today listing prices etc and informing us that we are booked in end of March.

Has anybody else been contacted from him? We are also on the waiting list with Dr Grozdinski in June for procedure.

If you had a choice, who would you choose? Dr Kostecki or Dr Grozdinski. Any comments?

Thanks

N xxx
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Postby Vhoenecke » Thu Mar 04, 2010 10:16 pm

Hi Ngocky,

I received information from Grozdinski and that is where I will be heading in June. Hope someone answers as to who they would rather go to. I am just going to the only one that responded to me. Sent Simka e-mail in December, lots of people hearing but I never got a response.
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Appt with Dr. Kostecki

Postby grammastang » Sat Mar 06, 2010 3:12 pm

gnocky
Do you know if Dr. Kostecki has now started to answer previous emails and making appointments? I emailed hm a couple of months ago to which he replied "more information to follow soon". Is this that you are receiving an appointment from him meaning that he is indeed setting up dates for ptients. I think I will email him again.
Lynda
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Appt with Dr. Kostecki

Postby grammastang » Sat Mar 06, 2010 3:25 pm

ngocky
sorry got your name wrong
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Postby ngocky » Sun Mar 07, 2010 3:11 am

Grammastang - we didnt even get an email to say more information to follow. We actually sent a couple of emails to him and spoke to him 3 times back in January and February. His email gave us details of how much it all costs and what the itinerary would be and said we were booked in for end of March.

So its a proper email re liberation procedure. Yes, I suggest you contact him again. Let me know how it goes.


Good luck

Nx
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Appt with Dr. Kostecki

Postby grammastang » Sun Mar 07, 2010 10:42 am

ngocky
You spoke to him? Could I please have his phone number? Does he speak English? I had an ultrasound and mrv at False Creek Surgical Center in Vancouver last tuesday. Dr. Simka was there. I also have emails to him but still waiting.
Lynda
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Postby ngocky » Sun Mar 07, 2010 12:08 pm

I am from england so I called the no. 00 48 501 444 784

I presume his no. is 501 444 784. You'll have to find out the appropriate international dialling code. If you still cant get through, I'll have a check of it for you.

He seems a nice man. He told us at the time that its an experimental procedure etc etc. He speaks english yes.

What were your results like? Positive, negative? My husband was tested in UK and it was concluded that he had slight narrowing of his left jugular vein. We are trying to send off his scans to get a second opinion from various places. One of them being from the one and only Dr Zamboni. Watch this space..........................

Best of luck with Dr Kostecki. Let me know how it goes

Nx
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Re: Appt with Dr. Kostecki

Postby happy_canuck » Mon Mar 08, 2010 12:14 pm

grammastang wrote:I had an ultrasound and mrv at False Creek Surgical Center in Vancouver last tuesday. Dr. Simka was there. I also have emails to him but still waiting.
Lynda


Hey Lynda! It's good to meet you in ThisIsMS after meeting you in person at FCSC last Tuesday. I am waiting to get my MRV and ultrasound reports interpreted together, but they both show evidence of CCSVI.

I did meet Dr. Simka several times. He did my ultrasound, actually. He is a soft spoken fellow and a bit of an introvert, I think. It may be just because English is not his first language. He has an extremely caring manner and a kind face. I posted a blurry picture of him on the CCSVI at UBC MS clinic page...
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />
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Appt with Dr. Kostecki

Postby grammastang » Mon Mar 08, 2010 1:16 pm

Hi HappyCanuck,
What do you mean waiting to get the reports interpreted together? By whom? Dr. Simka said I needed treatment after the ultrasound that he was in on but it makes no sense to me. Also I read my mrv report and it doesn't sound like there is a problem. I emailed Dr. Godley my confusion and he said "Yes this is often the case so we use both modalities but you have pathology" I am thinking that they found something on the ultrasound when in the sitting position and the mrv is lying down. I sent an email to AMEDS in Poland and received a reply this morning

Dear Lynda,

Thank You for Your interest in AMEDS.

We will be happy to help You.

This is the general message we send to our patients.
I hope You will find here a lot of useful information and answer to most
questions You might have regarding CCSVI examination and treatment.

If You are interested in learning more and in becoming our patient, please
let us know, so we can enter Your name into our waiting list.

GENERAL INFORMATION

AMEDS is a new project focusing at providing a variety of advanced medical
services with participation of highly respected and experienced medical
professionals in Poland.

At present we are in the process of final formal arrangements aiming at starting the
CCSVI medical examination and treatment services anytime between April 5th
and April 12th.

Our goal is to offer the highest possible level of medical service provided
at the modern medical facility near Warsaw in Central Poland.

We are working now on developing CCSVI specific detailed medical examination
and treatment procedures as well as requirements, training support staff, getting the
entire CCSVI center organized.

Our doctors, technicians, medical support staff as well as patient service
personnel are selected to provide the highest possible degree of comfort,
convenience, and effectiveness of the treatment for CCSVI patients.

BOOKING AND WAITING LIST

Unfortunately, until all arrangements are finalized, we are not in position
to set up the appointments - this situation should change however within
four to six weeks from now.

Those who express interest in CCSVI examination and treatment now, are
automatically entered into a preliminary waiting list.

Prior to confirming interest in becoming AMEDS patient, all of those who contact
us will receive detailed information concerning the facility, its exact location,
doctor names and their brief biographies, pricing, procedures, and requirements.

The booking of appointment dates would need to be finalized immediately
after we start the Phase I of booking procedure which should be taking place
before end of March.

During that time we will try to set up examination and treatment dates for
all patients who wrote to us on priority basis. Later on we will set-up
dates for people who register on-line.

We are aiming at avoiding long waiting lists as the patients with MS cannot
be expected to wait indefinitely for treatment.

From what we know, waiting list at another CCSVI clinic operating in Poland
is now longer than 12 months.

This fact caused us to think about creating new CCSVI examination and
treatment center – the AMEDS project, whose ambition is to become the best
CCSVI examination and treatment center in Central & Eastern Europe.

I hope You will stay with us for a period of four to six weeks to set up an
appointment for examination and possible treatment. If everything goes well,
we would be in position to book You for examination and treatment anytime in
April – May - June of this year.

SCHEDULE AND PROCEDURES

If You decide to become our patient, we will pick You up from the
airport and drive You directly to selected hotel not too distant from the hospital, so You
won’t have to worry about finding us.

Any family members that wish to be with You during Your stay at the hospital
can also be accommodated in that hotel, so they can stay with You for as
long as needed.

Typical schedule for examination and treatment will be as follows:

DAY 1:
1. Transportation from the airport;
2. General Examination – blood tests, etc.
3. Doppler + MRV Examination;
DAY 2:
4. One day break at the selected hotel not too distant to the AMEDS center;
DAY 3:
5. CCSVI Treatment;
DAY 4:
6. One day at the hospital bed;
DAY 5:
7. Follow-up examination (Doppler);
DAY 6:
8. One day at the selected hotel not too distant to AMEDS center (for non-European patients);
or
9. Transportation to the airport (for European patients).
DAY 7:
10. Transportation to the airport (for non-European patients).

Points 1, 2, 3, 9/10 are standard for every patient.
If the patient is diagnosed with treatable CCSVI, then points 4, 5, 6, 7, 8 will
happen.

Patients can arrive early or depart late and spend a few days before the examination
or a few days after the treatment at the hotel if they prefer to do so.

Upon completion of treatment, we will drive You back to the airport.

PRICING AND PAYMENTS

The final prices are not yet available as we are still in negotiations of certain
key cost elements, but the total cost for examination and treatment (2 stents)
should not exceed 5.000 EUR for European patients.

For non-European patients the total price may be slightly higher due to additional
insurance cost.

Please, keep in mind that the exact pricing is not yet established and the above
figure serves only as a reference point

Payments for services will be completed either by bank wire transfer or by credit card
at the hospital and will be divided between the payment for examinations
and diagnosis and payment for treatment. It is not likely that we will accept cash payments.

If the Doppler and MRI examinations prove negative as far as CCSVI condition is
concerned, we do not proceed with the therapy and the patients pay only for the
examination.

The prices mentioned cover the medical costs and are separate from lodging and
transportation. Yet, once we are ready with booking procedure, our patients will
have a chance to learn about all key cost elements prior to booking the examination
and possible treatment dates.

FURTHER INFORMATION

If You have daily access to email, You will be contacted with information about
the launch of the service and we will make sure that You don’t miss it.

Also, we are expecting to publish the information on bookings in our soon to
be significantly upgraded webpage.

THE THERAPY AND ITS RESULTS

As far as the therapy is concerned it seems (from what specialists like Dr Paolo
Zamboni – the father of CCSVI examination and treatment, are thinking) that with
approximately 55%-65% of all MS patients, the main cause of degenerative neurological
disorder commonly known as MS is caused by substantial or total blockage of jugular or
azygos veins which play an important role in proper circulation of blood within the brain
and spine.

Once this condition is properly diagnosed by Doppler and MRV examination and treated by
widening the blocked veins by inserting stents or inflating them with angioplasty balloons ,
it seems the process of degeneration of nervous system stops or significantly slows down.

However it is important to note that the damage to nervous system that has already
taken place is not being removed or reversed. The degree of improvement of patient general
condition is highly dependent on the level of damage to the nervous system that has already
taken place prior to the treatment. Generally speaking, if the damage is extensive and prolonged,
the results of therapy are less pronounced.

Nevertheless experience shows that upon treatment the quality of life significantly
improves within majority of patients – although the degree of improvement is
not the same for all of them.

It seems that the next step after the CCSVI treatment would be the stem cell therapy
to rebuild the cells damaged by MS – but from what we know now, this type of therapy
is still to be developed in the future.

Please, keep in mind that all of these statements are still based on available data
of limited scope as the CCSVI discovery is still at the early stage of development;
still too few patients have been a subjects of detailed research over the long time period.

Nevertheless I personally know people who suffered from MS, gone through CCSVI
testing and treatment and confirm that substantial part of their MS related
conditions have gone away – significantly improving their quality of life.

For more information concerning the therapy, please watch the following
material: http://www.youtube.com/watch?v=tV14jnVW ... re=related

FOLLOW UP

Following the successful CCSVI treatment, You will be required to take blood thinning
medication on daily basis. Also, we will recommend a follow up visit to AMEDS
within six months after the treatment to check on the condition of veins which were
subject to treatment.

Should You have any questions or concerns, please do not hesitate to
contact us. We will try address all Your questions promptly.

You can share this message with other MS patients, if You feel that it is
appropriate.

Best regards,


Marcin Duszyński



Marcin Duszyński

Also I read on facebook about Dr. G trying to get something going on here in Vancouver. Sounds good! Hope it is soon
Lynda
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Appt with Dr. Kostecki

Postby grammastang » Mon Mar 08, 2010 1:56 pm

hey happycanuck.
I just received this email from Dr. Kostecki
Dear Lynda,

There are some details:
I invite you to Poland in 22-23.03.2010.
23.03.2010 - doppler ultrasound in Tychy
24.03.2010 - MRI of veins in Zabrze ul. 3 Maja 13-15
27.03.1010 in Tychy Wojewódzki Szpital Specjalistyczny nr 1 Street: Edukacji 102 - procedure if necessary.
After procedure you have to stay in hospital one or two days.
The cost of procedure 13000pln; doppler ultrasound 150pln; MRI 450pln; consultation of the neurologist 200pln.
If you want some help with transfers, hotels etc please contact
EUROPA NOSTRA Travel Agency
ul. Wejchertow 5
43-100 Tychy, POLAND
tel: +48 32 3273295
fax: +48 32 2278130
mail
WOW
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Re: Appt with Dr. Kostecki

Postby happy_canuck » Mon Mar 08, 2010 2:22 pm

grammastang wrote:hey happycanuck.
I just received this email from Dr. Kostecki
Dear Lynda,

There are some details:
I invite you to Poland in 22-23.03.2010.
23.03.2010 - doppler ultrasound in Tychy
24.03.2010 - MRI of veins in Zabrze ul. 3 Maja 13-15
27.03.1010 in Tychy Wojewódzki Szpital Specjalistyczny nr 1 Street: Edukacji 102 - procedure if necessary.
After procedure you have to stay in hospital one or two days.
The cost of procedure 13000pln; doppler ultrasound 150pln; MRI 450pln; consultation of the neurologist 200pln.
If you want some help with transfers, hotels etc please contact
EUROPA NOSTRA Travel Agency
ul. Wejchertow 5
43-100 Tychy, POLAND
tel: +48 32 3273295
fax: +48 32 2278130
mail
WOW


WOW WOW WOW!!

Your head must be spinning.

In answer to your question about my report, the scans showed abnormal abnormalities, if you can believe it. Both Dr. Simka and Dr. Cooperberg were unsure if angioiplasty would help and recommended a venogram as a logical next step. This was all from the ultrasound. The MRV report said a venogram could verify some of the strange goings-on as well. So...I want ONE doctor, probably an IR, to put the two reports and both sets of scans side by side and interpret them for what this means for my health. Maybe he'll have to do a venogram first :-)

Keep us posted here or PM me about your plans to Poland!

Sandra
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />
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Re: Appt with Dr. Kostecki

Postby ErikaSlovakia » Tue Mar 09, 2010 1:25 am

grammastang wrote:hey happycanuck.
I just received this email from Dr. Kostecki
Dear Lynda,

There are some details:
I invite you to Poland in 22-23.03.2010.
23.03.2010 - doppler ultrasound in Tychy...


Dear Lynda,
can you please say hi to Dr. Kostecki from me?
He was doing my first Doppler together with Dr. Simka on August 7, 2009 exactly in the same hospital.
Thank you!
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 Vhoenecke » Tue Mar 09, 2010 7:11 am

Did anyone answer as to whether they would prefer Kostecki vs Grozdinski? I am sure they are both fine. It is likely that no one has seen both.

Val
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Postby ngocky » Tue Mar 09, 2010 8:55 am

Val

That was my original question. No one has answered yet. I am not sure who we will go with. I am sure they are both just as good.

Nx
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Appt with Dr. Kostecki

Postby grammastang » Tue Mar 09, 2010 1:16 pm

Dear Erika
Dr. Kostecki caught me completely off guard. Unfortunatly 2 weeks is not enough time to arrange flights from Vancouver BC Canada. He is keeping in touch with me for an appointment in April or May. When I do get to see him I will definitely say Hi to him for you. I will keep you posted
Lynda
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