PLEASE READ RE:Livabird Bulgaria Misadventure

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

PLEASE READ RE:Livabird Bulgaria Misadventure

Postby LivabirdsHubbie » Thu Oct 07, 2010 7:32 am

All,
Just wanted to highlight this as a short 1 off topic.
Lots of you have read of our nightmare here in Sofia over the last 2 days, if not you can catchup under the forum Livabirds Bulgaria Adventure.

I just want to ensure people know that the Hospital has been absolutely amazing in helping us. They have moved us to a hospital room and are feeding both of us. They are taking this very serious and are doing everything they can to help. They have made special arrangements to give Livabird(jayne) her procedure today, she is there now.
Joseph has been fantastic and continually is checking to see everything is fine.
Geya tours has made some mistakes whether down to procedures or cultural differences, but they have tried very hard today to make amends, even giving me 200 euros to see us through for a while.

Please Please don't cancel your procedure because of this misfortune, afterall i was stupid enough to leave my wallet like that... this was no reflection on the hospital staff whatsoever, Prof Grozdinski is absolutely amazing and such a caring person, sure did put my faith back in them.

There are many people that i would like to thank as without their support i don't know if we could have come out of this...

I won't start naming names (Belinda, Michelle) as i know i will forget people, but suffice to say all our FB friends all all the TIMS people are amazing, in todays world it is so nice to see there are lots of caring compassionate people.

Well think that is it, will post in Livabirds Bulgaria adventure once she is back

A huge THANKS to all

Rick
User avatar
LivabirdsHubbie
Family Member
 
Posts: 91
Joined: Thu Jul 08, 2010 3:00 pm
Location: Northampton UK

Advertisement

Postby LivabirdsHubbie » Thu Oct 07, 2010 9:40 am

Well all is done, not happy at all, won't say details publicly yet... pm if you want details, but the sooner we are out of this place the better
User avatar
LivabirdsHubbie
Family Member
 
Posts: 91
Joined: Thu Jul 08, 2010 3:00 pm
Location: Northampton UK

Postby LivabirdsHubbie » Thu Oct 07, 2010 11:06 am

Thanks, might need to get the name of your Vascular Sugeon :lol:
User avatar
LivabirdsHubbie
Family Member
 
Posts: 91
Joined: Thu Jul 08, 2010 3:00 pm
Location: Northampton UK

Postby PCakes » Thu Oct 07, 2010 11:28 am

LivabirdsHubbie wrote:Well all is done, not happy at all, won't say details publicly yet... pm if you want details, but the sooner we are out of this place the better


LBH.. please, why are you not sharing this info? there are many MSers and friends of MSers using this site to make decisions.
There should be nothing wrong with informed review.
It is up to the treatment facility to provide adequate service. If they are not..we need to know.

IMO.. i suspect that they pulled up their socks assisting with your wallet issue for just that reason.
Our voices are loud and clear.

I pray that your wife will recover well and that your trip home be safe.
pCakes
User avatar
PCakes
Family Elder
 
Posts: 849
Joined: Sun Dec 13, 2009 4:00 pm
Location: Canada

Postby Cece » Thu Oct 07, 2010 11:31 am

How awful....

And I was already worried for people going to Bulgaria after your experience, now it seems even worse.
Cece
Family Elder
 
Posts: 9024
Joined: Mon Jan 04, 2010 4:00 pm

Postby PCakes » Thu Oct 07, 2010 11:40 am

Cece wrote:How awful....


first the volcano..now this.. i am both sad and infuriated for you both.. i'm so sorry..

hopefully the 'implication' alone will inspire deeper research into treatment choices..
User avatar
PCakes
Family Elder
 
Posts: 849
Joined: Sun Dec 13, 2009 4:00 pm
Location: Canada

Postby LivabirdsHubbie » Thu Oct 07, 2010 11:46 am

PCakes wrote:
LivabirdsHubbie wrote:IMO.. i suspect that they pulled up their socks assisting with your wallet issue for just that reason.
Our voices are loud and clear.

I pray that your wife will recover well and that your trip home be safe.
pCakes


Sorry to much of a skeptic now... i suspect the reason was they told me 2 people have already cancelled their appointment because of this... one was due next week...
i also think they rushed Jayne in today, because Prof Grozdinski was aware Jayne was thinking of not doing it... this way they pushed it through and now will get their money... sorry but this is what we have been subjected to
User avatar
LivabirdsHubbie
Family Member
 
Posts: 91
Joined: Thu Jul 08, 2010 3:00 pm
Location: Northampton UK

Postby TMrox » Thu Oct 07, 2010 11:56 am

I hope that Jayne feels better after the treatment, that is the most important thing.

Very sorry about your wallet and the stress that this has added. Take a deep breath. You will soon be back home with your loved ones.

Don't pay attention to emotional/moral blackmailing. If people cancelled their appointments is probably for the best. Nowadays there are many centres offering CCSVI treatment. One needs to go to a place with experience and trustworthy.

It is important to share the good and bad experiences so we all can learn from this process. Thanks for sharing your experience there.

Rox
Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.
User avatar
TMrox
Family Elder
 
Posts: 263
Joined: Tue Jun 01, 2010 3:00 pm

Postby Villagemaid » Thu Oct 07, 2010 1:53 pm

WOW...I am so sad and sorry to hear of your misfortune!

It really goes to show that people have to do thier homework when deciding on a facility.

I had my procedure done on September 8th and it was the MOST positive experience. Everyone was very helpful, polite and the hospital was immaculately clean.

I, personally, highly reccommend Tokuda Hospital and Bulgaria. That is because I had such a positive experience, as did others I know.

Thank you for sharing this experience as people should have the knowledge from a wide range of experiences.

HOPE IT ALL GETS BETTER from here on out!!!
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
User avatar
Villagemaid
Family Elder
 
Posts: 198
Joined: Sun Mar 14, 2010 4:00 pm
Location: BC, Canada

Postby Villagemaid » Thu Oct 07, 2010 2:02 pm

Whoops.....I finally read your ENTIRE post....slowly this time...lol...

I now understand that you are not dissing the Hospital and the staff, rather you are commending them on the help they have offered you.
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
User avatar
Villagemaid
Family Elder
 
Posts: 198
Joined: Sun Mar 14, 2010 4:00 pm
Location: BC, Canada

Postby hope410 » Thu Oct 07, 2010 2:04 pm

LivabirdsHubbie wrote:Sorry to much of a skeptic now... i suspect the reason was they told me 2 people have already cancelled their appointment because of this... one was due next week...
i also think they rushed Jayne in today, because Prof Grozdinski was aware Jayne was thinking of not doing it... this way they pushed it through and now will get their money... sorry but this is what we have been subjected to


Told you what?

What have you been subjected to?

Your message is so vague that I can't quite understand what you are trying to say about Jayne's treatment. You seem unhappy with her treatment. Was her treatment unsatisfactory in some way?

I understand your wallet was stolen which is an unfortunate circumstance that could happen anywhere really. I'm just not quite clear on what ELSE happened that you aren't happy with. Can you please share for others considering going there so we can make informed decisions? Your messages are too vague for me to get anything out of them as to what exactly you are unhappy with outside of the wallet loss. Thx.
User avatar
hope410
Family Elder
 
Posts: 125
Joined: Mon Mar 08, 2010 4:00 pm

Postby LivabirdsHubbie » Thu Oct 07, 2010 2:06 pm

Thanks Villagemaid, we did our homework for a long time which led us down this path....
Maybe it is just us.... but certainly not a positive experience especially when they let my wife lie in a urine soaked sheet and leg bandage for 3 hours... after being told numerous times.... only when i started yelling at the nurses... and they got the doctor.... he said the bed will be changed but the urine soaked bandage wil be ok

Sorry i am tired and staying up as my wife woke up screaming.... and has thrown up 4 times... is worried she will choke.... oh well i have lost all my money all my cards... my wifes dignity so why not sleep as well....

Just one opinion everyone must make up their own minds...
User avatar
LivabirdsHubbie
Family Member
 
Posts: 91
Joined: Thu Jul 08, 2010 3:00 pm
Location: Northampton UK

Postby scorpion » Thu Oct 07, 2010 2:42 pm

LivabirdsHubbie wrote:Thanks Villagemaid, we did our homework for a long time which led us down this path....
Maybe it is just us.... but certainly not a positive experience especially when they let my wife lie in a urine soaked sheet and leg bandage for 3 hours... after being told numerous times.... only when i started yelling at the nurses... and they got the doctor.... he said the bed will be changed but the urine soaked bandage wil be ok

Sorry i am tired and staying up as my wife woke up screaming.... and has thrown up 4 times... is worried she will choke.... oh well i have lost all my money all my cards... my wifes dignity so why not sleep as well....

Just one opinion everyone must make up their own minds...


It looks like the first post was written when you first arrived at the hospital and the next posts were written after your wife's procedure. I am so sorry to hear what has happened to your wife. It makes me sick to my stomach to read your story.
User avatar
scorpion
Family Elder
 
Posts: 1323
Joined: Wed Nov 05, 2008 4:00 pm

Postby LivabirdsHubbie » Thu Oct 07, 2010 2:47 pm

hope410 wrote:
LivabirdsHubbie wrote:Sorry to much of a skeptic now... i suspect the reason was they told me 2 people have already cancelled their appointment because of this... one was due next week...
i also think they rushed Jayne in today, because Prof Grozdinski was aware Jayne was thinking of not doing it... this way they pushed it through and now will get their money... sorry but this is what we have been subjected to


Told you what?

What have you been subjected to?

Your message is so vague that I can't quite understand what you are trying to say about Jayne's treatment. You seem unhappy with her treatment. Was her treatment unsatisfactory in some way?

I understand your wallet was stolen which is an unfortunate circumstance that could happen anywhere really. I'm just not quite clear on what ELSE happened that you aren't happy with. Can you please share for others considering going there so we can make informed decisions? Your messages are too vague for me to get anything out of them as to what exactly you are unhappy with outside of the wallet loss. Thx.


It is a very long story... but after just having to change my wife in the hospital.. becuase the nurse could not manage on her own... i am pissed off at the moment... i won't go into more details but if you want to pm i will ...
lots of people commend the hospital and rightly so for them.... we do not... enough is said now... yes a wallet can be stolen anywhere... but though we would be safe in the hospital... perhaps they shouldn't give disabled people a room where you have to go next door to go to the toilet....
User avatar
LivabirdsHubbie
Family Member
 
Posts: 91
Joined: Thu Jul 08, 2010 3:00 pm
Location: Northampton UK

Postby Interrupted » Thu Oct 07, 2010 3:39 pm

Good Lord, i'm so sorry to hear about your nightmare continuing LBhubbie. I'd so hoped this would be the end to the worry for Livabird and all would be well. Send her all our love, and we're all sending you strength to make it home safely x
28/07/10, 04/10/10, 16/11/10 - Dopplers x3 Ireland, Poland, Scotland.
12/10/10 - 1st procedure, Poland. Symptoms worsened. No improvement.
Verdict: I urge caution + am taking a back seat watching research ATM.
13/02/12 - Started Wheldon ABX protocol.
User avatar
Interrupted
Family Elder
 
Posts: 212
Joined: Sun Jan 14, 2007 4:00 pm
Location: UK


Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service

cron