Livabird's Bulgaria Adventure

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

Postby LivabirdsHubbie » Thu Oct 07, 2010 7:38 pm

AnnaP wrote:Hi Rick,

I'm really sorry for your and Jayne's misfortune. I hope she will get better soon.
I was in Bulgaria in June. I and others from the UK, Greece and Canada had the best experience. Dr's Grozdinski and Petrov are the best. The hospital is top notch, and the nurses' were wonderful. The hospital hotel and the Greenville hotel were very clean, comfortable and very accomadating.
I want people to know there are different experiences, some good and some bad.

Thanks AnnaP, you are right everyone must judge for themselves...
Jayne was in total pain during the procedure and they did nothing for her... no one spoke english, she got back and pee'd the bed, i told the nurse and actually showed her, she just looked and left jayne lying in urine for over 3 hours... not until i started yelling at them... i was up most of the night cause jayne was sick and was on her bed pan, she threw up everywhere... the nurse did come but could not do things on her own, i had to move jayne around and help change the bed... she would not even wipe jayne I had to look after removing all the soil etc.... Well there is probably plenty more... but that is all i am going to say... I have had enough on this place and am leaving TIMS now
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Postby scorpion » Thu Oct 07, 2010 7:42 pm

LivabirdsHubbie wrote:
AnnaP wrote:Hi Rick,

I'm really sorry for your and Jayne's misfortune. I hope she will get better soon.
I was in Bulgaria in June. I and others from the UK, Greece and Canada had the best experience. Dr's Grozdinski and Petrov are the best. The hospital is top notch, and the nurses' were wonderful. The hospital hotel and the Greenville hotel were very clean, comfortable and very accomadating.
I want people to know there are different experiences, some good and some bad.

Thanks AnnaP, you are right everyone must judge for themselves...
Jayne was in total pain during the procedure and they did nothing for her... no one spoke english, she got back and pee'd the bed, i told the nurse and actually showed her, she just looked and left jayne lying in urine for over 3 hours... not until i started yelling at them... i was up most of the night cause jayne was sick and was on her bed pan, she threw up everywhere... the nurse did come but could not do things on her own, i had to move jayne around and help change the bed... she would not even wipe jayne I had to look after removing all the soil etc.... Well there is probably plenty more... but that is all i am going to say... I have had enough on this place and am leaving TIMS now


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Postby SandyK » Thu Oct 07, 2010 8:23 pm

Whoa...I am not attacking you. I am trying to get the feel of what is happening to your wife. I read the staff in Bulgaria is great then I read the opposite. Am I the only one confused? Maybe. If I am than please accept my apologies. I met no disrespect.
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Postby Jugular » Thu Oct 07, 2010 8:43 pm

What an unmitigated disaster. I sincerely hope that some good comes out of it for you and your wife, if only to return home safely and without anymore trauma.
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rating

Postby LivabirdsHubbie » Fri Oct 08, 2010 12:16 am

Thought it only fair to summarize and rate our experience, will try to be non-bias and only think of the facts.... bear in mind only a couple of hours of sleep.... out of 10...
Geya tours - 5 but increased to 7 because of the help eventually
Lisa is really nice and did try to help eventually..
Tokuda Hostel/hotel - 2
No security at all
Half the rooms are not ensuite so you need to leave your room for toilet
This is bad especially if you are wheelchair bound...
Hospital Staff - 5
Nurses were not helpful, care is not good
Joseph - 10, very nice guy and i believe 100% genuine
Hospital food - 8 so far, both meals have been very good
Doctors
Prof Grozdinski - 10+
Even after everything he was really good and i believe quite genuine
Vascular Surgeon - 7 not overly impressed although did the job
Procedure - verdict still out, but for now 6
very painful... told we would have Dr Petrov but that was not the case
we asked specifically to go in the left for illiac, told yes but they ignored
and went via right
Sofia - can't say as circumstances prevented us from seeing outside hospital
people not overly friendly
Police - 1 they would not even come here as a result of robbery;... we had to
get to the police station - Geya tours brought me there so some kudos
as a result

Overall - 6

So would we come back
Probably not, but would have to think about it as Prof Grozdinski is very good

Would we recommend it...
From the procedure itself, probably yes and because of Prof Grozdinski
It is a shame all else let Prof Grozdinski down...

Sorry to all for such a rollercoaster of good and bad... but that is just the way it unfolded...

Any regrets...
only leaving my wallet unattended for 5 minutes in hospital room
At the end of the day this is all for my Wife Liva and if it meant just a little more quality of life I would do it all over again, although she would say differently...

Any good...
Well the amazing support we got from friends here and Facebook, Belinda was a god send and an amazing person...
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Postby Algis » Fri Oct 08, 2010 1:22 am

Thank you for the summary.

As you said: very sad the dedication and work of the Doctor Grozdinski is shadowed (even hurt I believe) by the logistic aspect.

The best of wishes to Liva - And thanks again for your continuous feed of information.
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Postby LivabirdsHubbie » Fri Oct 08, 2010 6:22 am

call me a hypocrit for posting yet again, but i feel you deserve the update:
We just met with the medical director, he was very nice and very very apologetic... he assured us that he has already put measures in place and we believe this. The doctors have been very good today been in about 4 times just to check... This is largely thanks to Michelle who has emailed endlessly to Prof G.. I have told Joseph that we rate him 10 out of 10 but Prof G gets 10+ from Jayne saying she would never come back, she now says she would come back especially for Prof G
Prof G and the MD have met with the Head Nurses and Dr Petrov to give all what we have said.
We truly believe they have taken this very serious and things should improve...
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Postby Rokkit » Fri Oct 08, 2010 7:04 am

I sincerely hope when you get a chance to recover from all this that you notice some improvement from the procedure. You deserve it. And I hope you'll continue to post here.
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Postby esta » Fri Oct 08, 2010 12:03 pm

if you're still here, what procedure did you get in the end?
I'm very sorry for all your troubles, and don't have a clue how I'd react...
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
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Postby hope410 » Fri Oct 08, 2010 8:17 pm

Sounds like quite an ordeal and much discomfort that wasn't necessary. I can understand why you were upset.

I'm sorry it's been such a difficult experience for you both. Hopefully your wife is under better care now and can begin the healing process.
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Postby LivabirdsHubbie » Fri Oct 08, 2010 8:56 pm

esta wrote:if you're still here, what procedure did you get in the end?
I'm very sorry for all your troubles, and don't have a clue how I'd react...


Hi Esta
In the end she had angioplasty in both jugulars and the azygos.
The left jugular had restenosed and was 50% blocked. In poland it was 80% blocked so not quite as bad.
The right jugular, in poland wass 100% blocked and a stent was put in. Here it has stenosed above the stent, it was 80% blocked above.
The azygos whas 50% blocked. Poland did nothing with the azygos, well they said she had 2 azygos, not true, besides you can't detect this with a doppler which is where they told us....
She had a doppler the day after procedure, another thing Poland did not do but might be doing now... The doppler showed the blood flow is still good
Hope this helps
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Postby esta » Sat Oct 09, 2010 11:20 am

oy, she has alot to recover from...all the best...
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
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update on rating

Postby LivabirdsHubbie » Sat Oct 09, 2010 10:45 pm

Hi All, just to update the rating 3 days post procdure
Livabird is doing very well, lifting her legs, lying on her said... lots of colour... talking up a storm.... swining out of bed... and moving around... this is amazing for her...
Here is the updated scores:
Hospital Staff - 9
Nurses are being really really nice now... smiling and always checking on Liva
Joseph - 10+, bumped up from 10
Doctors
Prof Grozdinski - 10+++++ - amazing man
Vascular Surgeon - 8 he is now smiling and very friendly.... knew it was there
All other Doctors - 9+, they have been wonderful all of them, always looking in and talking to us

Will we come back for check-up - Absolutely...

What a change from just 3 days ago... but they have made such an effort...
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Postby whyRwehere » Sun Oct 10, 2010 12:38 am

I have to wonder if the change of attitude is due solely to your postings. If that were the case, I would still worry about going there; I think they have shown their true colours, and the "niceness" may not last. Glad to hear your wife is doing well, despite what seemed like a nightmare.
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Postby LivabirdsHubbie » Sun Oct 10, 2010 2:18 am

Hi
It may be due to postings, but i actually think meeting with the Medical Director helped as well...
We have talked to lots of people here that have had the treatment and had a very positive experience...
So maybe it was just that we had bad luck and they were not sure how to deal with what happened to us... i think they have learned some lessons as well
At the end of the day everyone must make up their own minds, but as i said, even after all of this we would still comeback, so that is saying something...
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