Jacek Kosteki

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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AMcG
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Post by AMcG »

Hello all. I just got back about two hours ago. I have made an entry in the tracking thread but it is not very complete yet. I have also taken photographs of everyone in Dr Kostecki's team and the clinic and I will do a detailed write up as soon as I can. I am pretty tired from the journey back at the mo. But in short Kostecki's team is good. Accomodation was good. Clinic was good. Poland is a crazy place and times of appointments kept moving for no apparent reason. You have to accept that this is Poland and it seems very disorganised from a western point of view but in fact everything gets done and the outcome is well worth it.

I was relieved to find I had stenoses both sides and substantial reflux on one. I have nice little videos of both and my azygous vein which was OK. I had ballooning both sides and a stent on the right. Like everyone else the first thing you notice (about 90 mins after the procedure) is warm feet. For me this became warm legs, warm hands, warm body... It fact I eventually realised it was hot day and everyone outside was going about in tee shirts. I had come in a thick wooly jumper a coat and wooly hat. When I got back to the hotel I was sitting outside in a thin shirt and cotton pants and the sun was gorgeous. While I was sitting there I kept hearing some children playing on a skate board and thought I was hearing things, I eventually saw them about a quarter of a mile away on my left. I had been almost deaf in that ear. In short I haven't felt so good in a long time. I am trying to keep calm and be objective but it is very difficult. You good folks want an objective report so I think I should stop now and gather my thoughts for later but if you are thinking of a trip to see Kostecki I can definitely recommend it. More later.
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colapesce
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Post by colapesce »

Great news! I really hope that the improvements keep coming. Keep us posted.

cola :)
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grammastang
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Jacek Kostecki

Post by grammastang »

Thanks Alan, That is what we all like to hear. So now just put your feet up an relax. Look forward to hearing from you soon. I have 10 more sleeps until I leave for my Liberation journey. :lol:
Lynda
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hale
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Post by hale »

Hi Lynda,

My appointment is a week later than yours. Yes, I got the travel agency information but we are planning to travel around before and after the procedure so I am doing all the planning and making all the reservations, therefore no need for the agency. When I explained this to them and asked for my hospital schedule, they told me they were not "hospital and tourist information center". Duh!
So I am hoping Dr. K will get back to me soon. Otherwise, I will have to camp at the MRI center first thing in the morning and wait. :?

Alan, so happy to hear about your successful liberation. Would love to hear more about it when you get the chance. Do not hesitate to tell us all the details.

Hale
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Johnson
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Post by Johnson »

Alan,

I'm very excited to read of your improved hearing! I too am pretty much deaf in one ear - accompanied by a shrieking, 6 tone tinnitus (it switches back and forth between tones, but there are usually 3 or 4 tones simultaneous.) I have been from ENT to neuro, and back, and forth... The neuro finally told me he thought the deafness originated in the brain stem. Now we know that new neurons can grow in the white matter, so I have been hopeful of regaining the hearing in that ear.

Thanks for that!
My name is not really Johnson. MSed up since 1993
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ndwannabe
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Post by ndwannabe »

Thank you for the update Alan! Quick rehabilitation to you and complete reversal of MS symptoms!

May I ask what was the price for the procedure or are those the details that are reveled when you contact them?

What's the best way to contact Dr. K? Is it by phone? E-mail? Should I just jump directly to contacting the travel agency referenced in this thread?

Thanks a lot!
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grammastang
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Jacek Kostecki

Post by grammastang »

ndwannabe
I contacted Dr. Kostecki by email - kosteckj@op.pl
I am going on May 10th with procedure on May 14th. Dr. Kostecki charges in Polish currency zlotys= pln. mri is 450pln, ultrasound is 350 pln and neurologist consultation is 200 pln procedure if needed is 13,000 pln. Total is 14,000 pln converted to canadian dollar which is par to u.s. dollar = approx $4900.00. This is the pricing I have received from him. Hope this helps. :lol:
Lynda
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AMcG
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Post by AMcG »

Hi Johnson

I am not sure what the cause of my deafness was and I am not sure what has happened to fix it. I am guessing the ballooning made some re-arrangement, maybe pushed something away from my ear. But I may be wrong. I haven't a clue where the auditory nerve runs but obviously it starts at the level of the ear which is below the level of the hypothalamus (which is affected) and the optic nerve is also affected in MS so maybe there is an auditory corollary to optic neurtitis?

ndwannabe

I contacted Kostecki by e-mail: kosteckj@op.pl .

But Katherine is probably a good idea to try: biuro@europanostra.com.pl
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ndwannabe
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Post by ndwannabe »

Thank you guys!

Lynda, best of luck in May!
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AMcG
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Quick update

Post by AMcG »

Just posted this on tracking thread:

Had a poo last night with very little effort. Usually a gargantuan struggle.
Went thru night without going to toilet!
Can do really big yawns. (spasticity in rib-cage much less.)
Dizziness very very gentle.
Entered room carrying tea in one hand, bowl of cereal in other, used my bum to open door and closed door behind me with right leg while balancing on left leg (left side is my bad side) without even thinking about it. Wow!
Wife commented on my walking in the Supermarket. Used to shuffle now stride.

Johnson - also notice this morning that deafness has improved both sides so it is not just a local effect. Could I have had spasticity in the ears I wonder? Is that possible?
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Johnson
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Post by Johnson »

That is all excellent news, Alan -especially the hearing. I told ENT docs for years that I felt that my Eustachian tube was blocked, and I wanted to reach down through my ear, to where I now know there is a major stenosis, and pull something out. Now I know.

I'm hoping to hear the crickets again.
My name is not really Johnson. MSed up since 1993
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caraboo
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ccsvi

Post by caraboo »

Hi Alan,


I am from scotland. I have a appt in Bulgaria in june.
I tried too contact this doctor 3 times, I have never
received a reply. How long did it take for him to reply to
you? I am so happy for you that you are feeling great
signs from your procedure, I wish a long and healthy outcome.



Take care
Caraboo
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AMcG
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Post by AMcG »

Hello Carabou

I wrote to Kostecki on 8th January. I got an acknowledgement straight away but I then did not hear anything until 6th April. If you did not receive an acknowledgement you could try phoning Katherine at Europa Nostra she speaks very good English and is in continual contact with Kostecki. She might be able to tell you if you are even on the list. Her phone no. is: +48 32 3273295. She is usually in her office from 11 o'clock. Kostecki is very difficult to contact on the phone.

Hope this helps.

Alan
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costumenastional
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Post by costumenastional »

AMcG wrote:I eventually saw them about a quarter of a mile away on my left. I had been almost deaf in that ear.
hahaha that s great friend!!!! :)
everything is gonna be perfect you ll see.
just keep us in the loop please ;)
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caraboo
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poland

Post by caraboo »

Hi Alan,


Thankyou so much for the info you gave me, Im going to get right on to it.
Im going to Bulgaria in June, but much rather it was Poland. But as I say i have contacted him 3 times and now is probably too late. Ill let you know how i get on.



Take care
Caraboo
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