NDwannabe is IN Poland!

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

Postby ndwannabe » Mon May 31, 2010 9:14 am

Billmeik wrote:hmm so you have ms for sure... did they look at you azygous?


Oh yes, they did. they even had to switch catheters for a thicker one, because apparently my valves do too good of a job of shutting the backwards flow or "invaders" (the catheter)
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Postby Zeureka » Mon May 31, 2010 2:14 pm

ndwannabe wrote:Back from the hospital.

CCSVI not found. Will go home and re-test for Lyme.

********************************************************
Before I go on describing the experience of others I want to mention a few things that were not clear to me after reading everybody's experience (or maybe I just skipped over it looking for IMPROVEMENTS):

    The procedure IS invasive. You feel the catheter going in, the dye being injected, the balloon being inflated

    According to some - ballooning hurts and stenting hurts some more

    You are sore after the procedure. Men in our group either don't complain much or are simply not as sensitive. Women - whether having had the liberation or simply venography are VERY and uncomfortably sore

    Being stuck in bed for approximately 18 hours - no leg bending, no moving side-to-side, bedpan and all is VERY testing and somewhat humiliating. You are made to drink approximately 5 glasses of water after the procedure.

    I feel worse than ever after the procedure (I know this is temporary) - veins might have been scratched, valves disturbed, the dye is toxic, etc.,

********************************************************
Others:

* We did not have anybody with immediate stark improvements. Slight immediate - yes.

--- One more lady in our group did not have CCSVI. She was never given a proper MS diagnosis (no brain / spinal MRI, the spinal tap result was lost by the lab). She is in a wheelchair and has common MS symptoms - foot drop, leg drag, fatigue, balance problems and the "usual" bodily functions problems

--- One gentlemen with SPMS had a rather significant stenosis in his left jugular - was ballooned. He is trying to shake off the after-procedure soreness to see the improvements. His major symptoms were tremors, lack of balance, lack of coordination and brain fog.
He feels slightly better on all accounts

--- Another gentlemen (I think he has RRMS) also had a ballooning only. He saw immediate improvement in his blood pressure. His major symptoms were mental fatigue and yes, the higher than normal blood pressure.

--- Finaly, one lady in our group (PPMS) received the ballooning in one of the jugulars and stent in another. The stenosis on the side of the stent was said to be very long and did not hold after the several attempts of the ballooning. She saw blood pressure improvements (from too high to more close to normal) AND for the first time in her life she felt a little sweat on her neck . Her symptoms are also foot drop, leg drag, fatigue, balance problems and the "usual" bodily functions problems.

***********************************************************

I am still glad I did it (even though very disappointed) - I ruled out something that would have been a "what if?" for the rest of my life.
Sorry to hear you had not such nice experience dwannabee. I also just came back from Poland and my procedure was absolutely painless (except feeling light low-pain,but in no way a pain that made me feel bad)pressure when ballooning).

I do not know where these testimonials you quote are coming from...? Certainly not from patients that were in the Euromedic Katowice hospital? We only had to stay calm inbed for 6 hours afterwards - above reported 18 hours ?! And we were not permitted to eat and drink before the procedure, so until afternoon, but already was it 3 hours afterwards could drink and evening they brought us FOOD ! All in my group were diagnosed CCSVI (also those of day before) and we all had ballooning in our jugulars,day before 1 person azygous, one lady a stent in jugular in addition - the others I talked to did not report any pain at all or only feeling the catheter slightly.I only felt the low pain pressure in my left jugular but when they ballooned my right no feeling/pain at all!

So where are you in Poland? Seems not in the Euromedic clinic in Katowice! You said Tichy? Which doctor/clinic?

5 days after the procedure I feel better as I havn't felt since a looong time! Slight immediate also,but isn't that already something? You may not have MS, but still weard that the above experiences of procedure itself and pain reported is so different to my/our experience in Katowice? I'm sorry for that, if others had to go through such a negative event that for me was overall super-positive. Can you refer to your quotes more precisely where they were coming from (which clinic?) Thanks
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Postby Billmeik » Tue Jun 01, 2010 6:21 am

Ya this is a Kostecki group, not a Simka group Zeureka. Still, last one sounded more like yours.
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Postby ComfortablyNumb » Tue Jun 01, 2010 7:12 am

Sorry that you didn't find what you were looking for. I hope you find some answers at home. I also still have to get answers here at home since they were not able to fix the CCSVI problem in poland.

I was also at Euromedic the same time you were with Kosteci and 3 of us had the procedure the day before Zuereka. Our experience was the same as hers. The two girls with me had slight pain in the neck area from balooning, but we were all out of bed walking around after 6 hours and enjoyed a nice meal.
I could feel the catheter slightly and feel a pressure popping in my left ear when they balooned, but it was not at all painful. I think the anesthesiologist did a fantastic job.
I do not have any bruising and the entry for the catheter was no bigger than a small pimple. I was off sightseeing the next morning after being released at 7:30 am. I belive I was their 481st procedure at Euromedic.

Best wishes
:D Stephen
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Postby Billmeik » Tue Jun 01, 2010 7:54 am

I want to hear more aobut your experience comfortably numb ( i like that name)..so you got a negative from Simka? Not many of tos available when you're batting 95%...
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Postby Billmeik » Tue Jun 01, 2010 8:18 am

thinking back it sounds like you didnt get a negative but they couldnt do anything about your ccsvi. Details?
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Postby ComfortablyNumb » Tue Jun 01, 2010 8:28 am

Billmeik wrote:I want to hear more aobut your experience comfortably numb ( i like that name)..so you got a negative from Simka? Not many of tos available when you're batting 95%...


I didn't get a negative but there was nothing they could do since the angioplasty didn't hold and they can't stent the Brachiocephalic trunk. they said it was a cardiac issue.
I dont want to hijack ndwannabe's thread so here is mine: http://www.thisisms.com/ftopict-11821.html
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Postby ndwannabe » Wed Jun 02, 2010 8:35 am

Zeureka wrote:I do not know where these testimonials you quote are coming from...?


I am not quoting anybody's testimonials. I am describing MY OWN experience and the experience of people in my group.

We had the procedure at Dr. Kostecki's clinic.
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Postby Billmeik » Wed Jun 02, 2010 10:01 am

I cnt help thinking that you should get a 2nd opinion from simka ndwannabe.

Dont know how that would work but that's how I'll handle it if this happens. Send my wife home and stay for that second. There are some cancellations happening at the end of june.
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Postby Zeureka » Wed Jun 02, 2010 10:53 am

Billmeik wrote:I cnt help thinking that you should get a 2nd opinion from simka ndwannabe.

Dont know how that would work but that's how I'll handle it if this happens. Send my wife home and stay for that second. There are some cancellations happening at the end of june.
Before continuing with speculations, I hope you don't mind if I ask Erika by private msg a bit her view on this - I think she knows Kosteki - did she not have her doppler with Kosteki and Simka together, and they cooperate? Or was that another doctor?
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Postby Billmeik » Wed Jun 02, 2010 2:58 pm

kostecki's name is on the last Simka paper as a co-author.
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Postby ErikaSlovakia » Thu Jun 03, 2010 2:29 am

Zeureka wrote:
Billmeik wrote:I cnt help thinking that you should get a 2nd opinion from simka ndwannabe.

Dont know how that would work but that's how I'll handle it if this happens. Send my wife home and stay for that second. There are some cancellations happening at the end of june.
Before continuing with speculations, I hope you don't mind if I ask Erika by private msg a bit her view on this - I think she knows Kosteki - did she not have her doppler with Kosteki and Simka together, and they cooperate? Or was that another doctor?


Yes, I know Dr. Jacek Kostecki. He was doing my first Doppler together with Dr. Simka in August 2009 in hospital in Tychy.
I also have to say that I had my procedure at EuroMedic in Katowice in November 2009. I had to stay in bed for 13 hours. After that I was walking and after 2 hours I saw 2 or 3 drops of blood from my wound. The nurse told me to stay in bed again. It was OK after 2 more hours. I think it is individual. Maybe they wanted me to stay in bed because I was only the second with MS and they saw my wound not me.
Regarding pain, we are all different. Some people might have pain and some not. These procedures are not new for them not even for Dr. Kostecki`s team but MS patient are new for them. Even not MS patients have some little minor complications.

The best would be (as one of my friends says), to be the healthiest multimillionaire in the world :D
Sorry for the little joke - I know whole situation is not very funny.
I do not have any major problems but I still have some MS symptoms. I still do not know if this was enough. We all might need something else. I might go for another procedure in the future - I do not know. We do not know what the science discovers in the future - I hope it will be something positive and soon.
Have a nice day!
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 alanbrowne » Thu Jun 03, 2010 6:36 am

Hi All,

I had the procedure in Tychy with Dr Kostecki nearly three weeks ago now.
No-one in our group had to stay in bed for 18 hours, just the usual 6. I had to stay a little longer because I had a bleed.
As for the procedure, not sure if they have changed the way it is performed, but I didn't feel anything really, a little uncomfortable in the groin and the popping when they balloon but that was it really.
After the stent was placed my neck was a little sore, but nothing too bad at all.

Alan
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Postby judipom » Thu Jun 03, 2010 1:14 pm

Just want to thank you all for posting your experiences about the procedure. It really helps to know what to expect. Judi
RRMS Diagnosed 1997
My house burned down, now I can see the moon.
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Postby StentorKate » Fri Jun 04, 2010 3:04 pm

I was also with Dr. Kostecki and experienced no problems.
I think it depends entirely on the person.
Of the 6 of us who Dr. Kostecki in mid May, the only one who suffered any "pain" was a Bulgerian lady, who seemed to have more issues with fear than pain. She spoke NO English, no one else spoke Bulgerian - her husband spoke a few words of English and didn't really communicate a lot of what was going on, or what she could expect to her.
One member of our group was found to have NO blockages in any vein and no faulty valves - she was tested for Lyme's in Poland, found to be negative and sent home with a list of tests that she should have done, the results being forwarded to Dr. Kostecki as she was now a part of the study.
I know of 5 others who saw Simka, 4 had no problems, 1 did - so I think it depends on the person. Each person tolerates pain differently, clots at a different rate, uses different prescribed and OTC medication - there are just so many variables.
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