Livabirds California Adventure

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

Livabirds California Adventure

Postby LivabirdsHubbie » Wed May 18, 2011 4:46 am

Hello to all our old TIMS friends. We are back, sorry it has been so long, since Oct'10 when we went to Bulgaria.....
So just a quick update ... Livabird is not doing well at all after Bulgaria, she had no benefits at all and is in fact worse than ever...
We have now decided that she will be third time lucky and we fly to California to PI on June 29th(livabirds birthday), consultation with Dr Arata on June 30th, procedure on July 1st(Canada Day, quite fitting)
We will then just relax and have a family holiday until July 18th....
As always we will keep you all up to date with her progress and our hopefully not so adventurous adventure this time, as you remember Poland was the volcana, Bulgaria was the robbery.... so California, well they are due for an earthquake 8) 8) 8) , but not while we are there...
Anyways good to be back and sorry we don't have any better news... but we will keep going.....
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Postby aries78 » Wed May 18, 2011 5:08 am

Bulgaria was the robbery....maybe it didn't worked for you but it worked for others. And yes, I've read the story of your adventure there.
It is very rude and so easy to make that kind of comment on public forums for people who had the procedure and it just didn't worked for them....
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Postby 1eye » Wed May 18, 2011 5:20 am

Hallo, Livabird's Hubbie...

You know the old expression, once bitten, twice shy? I am not saying that. I am not saying you should not do this. I think this is potentially a very good thing for you. The only thing is, don't hurry. The human body takes a lot more time than we think it does to heal. Plus my friend went and got stents in a big hurry like that after what she thought was a treatment failure and I think she didn't give it enough time. Luckily you will likely be followed up, where she wasn't, and ended up with permanent clots.

So, if anything, *this* is the time for careful testing and monitoring. There have been reports of late improvements. Mine are still happening. I can now do octaves on the piano and I am inventing finger exercises. (I am still working on that song, Erika, but I got hung up on Jackson Browne's Farther Along. Don't worry, I won't try to sing it or anything.) Give yourself a chance.

Of course, I may be wrong. That is always a possibility.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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what was rude aries78

Postby LivabirdsHubbie » Wed May 18, 2011 5:34 am

Are you referring to the robbery or the fact there were no benefits....
I don't actually think either are rude...

I know many have had benefits, my wife did also have improvements after Poland, just nothing from Bulgaria...

If you don't want to hear the truth don't read the post
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Postby 1eye » Wed May 18, 2011 5:49 am

I think, like me, Aries78 might not know exactly what kind of robbery you were referring to. I assumed you got mugged, maybe, Aries78 thought you were talking about the procedure. I am glad you had benefits the first time around and I'll shut up now. :)
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby LivabirdsHubbie » Wed May 18, 2011 7:16 am

Thanks LR1234, i felt the same way...
We are still advocates for the procedure, otherwise i would not have remortgaged my house to raise the money to take my wife to California
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Postby 1eye » Wed May 18, 2011 8:32 am

Hey I was not trying to criticize. If you feel you got mugged by the medical system in Bulgaria, I might have some idea, even without the language barrier. My mistake. I still say go slow, and measure things as much as you can. You might have some good luck, even if it's by mistake. :wink:
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby Cece » Wed May 18, 2011 8:38 am

By volcano in Poland, he might be saying that the procedure was explosive....

Although I recall there being an actual volcano with a lot of ash that interfered with air travel.

An actual robbery, as well. And, upcoming in California, an actual earthquake.

I hope she sees actual results from this next procedure. :)

Only concern is because Dr. Arata is using the larger balloons and breaking the annulus. Our TIMS doctors (the real ones) have stopped doing this a few months ago because they were seeing more thrombosis and collapse/occlusion of the vein.
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Postby dania » Wed May 18, 2011 8:53 am

LR1234 wrote:I am annoyed at the fact that people making any negative comments about a treatment centre are criticised.
There are many people who are still looking to be treated and I think it is important for them to have all the facts.

Liverbirds hubby is allowed to comment that the procedure did not work for his wife and to criticise the centre if he decides to.

I however will say not only did it not work for me but I got a P.E and clotted vein whilst still in Bulgaria...I called the emergency dr in 8 times that night plus I reported how I felt to both main Dr's at the centre and was not helped at all. I am fully mobile and do not lhave a physical disabillity so spent a lot of time chasing dr's and nurses around the corridor begging for someone to help me, when that failed I got on a plane risking death back to the UK where I was promptly treated with heparin and given oxygen as the P.E had severely affected my ability to breathe. I am very annoyed at the treatment I received in Bulgaria and feel to this day I am lucky to be alive!!


So sorry for the rant but I do want people to know if they are going to Bulgaria (which I strongly suggest they don't) to bear in mind my experience.

I did get robbed and injured!!

Sorry to hijack your post Liverbird's hubby that poster just really wound me up! I hope all goes well for her and that she has some improvements soon x

LR, sorry about the P.E. I know what that feels like I have had two. And when I went to the hospital here in Canada they did not pick it up the first time. It was when I coughed up blood that they did a lung scan and found it. With the second one, the doctor did not believe me. Even the when he that looked at my lung scan he missed it. Luckly the technician that did the scan believed me and looked at it and pointed it out to the doctor.
I think there is more than 1 place in Bulgaria that does the procedure. I had it done in the Tokuda Hospital. Nursing there is not like here or in the states.
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clarify

Postby LivabirdsHubbie » Wed May 18, 2011 9:30 am

just let me clarify..
by volcano i mean volcano, we had to pack the car and drive from the uk to Poland because all flights were grounded.....
by robbery i mean robbery, my wallet was stolen from the hospital our first day there and we were left with no cash or credit cards, don't get me wrong Prof G was fantastic and so was tokuda hospital after i met with the CEO of the hospital, i had to put a complaint in about the nurses, but after that they were just great...

hope that clears up the confusion...
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7 days and counting

Postby LivabirdsHubbie » Wed Jun 22, 2011 9:57 am

Well this came up fast, 7 days until we leave, well hopefully...
As you all know the issues with Poland and then Bulgaria...
and now the Virgin Atlantic pilots have voted 98% to strike, and yes you guessed it we are flying with Virgin !!!!!!!!!
First time we have flown Virgin, first time they have ever in their history voted for strike..... must be Livabird......

Will keep ya posted
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Postby Interrupted » Thu Jun 23, 2011 8:51 am

Yes, I think second post was a misunderstanding of terminology. Good ol' text!

Remember well the problems you had with both, and wish you both the very best for California. Livabird certainly deserves some relief (actually you both do!) after all this so far. Fingers crossed for you and all positivity to you! :D
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.
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1 day to go

Postby LivabirdsHubbie » Tue Jun 28, 2011 5:06 am

Well, almost time, we fly out tomorrow.... procdure on Friday
Will keep you posted on how it goes... as usual pictures will be posted on FB
Fingers crossed 3rd time lucky
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Postby livabird » Tue Jun 28, 2011 9:00 am

well super squeamy bird is pretty well packed. can hardly wait for food there. hate food here. i can wait for the other little thing. see you in disneyland
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quick update...

Postby LivabirdsHubbie » Fri Jul 01, 2011 8:27 pm

We arrived safe and sound in California after a 12 hour flight.
Settled in quite nice, Patrick picked us up at LAX, what a great guy...
Jayne met with Dr Hewett yesterday where he went over her scans from Poland and Bulgaria. He showed us where her azygos was damaged in Bulgaria, but was hopeful that Dr Arata could sort it out. He was really good and explained everything he saw on the CD's.
Last night we met with a whole CCSVI gang that are here as well, really fun night.
Jayne had her procedure today with Dr Arata. He is really great and was upfront and completely honest. He said that the benefits are not as prevelant on the second or third treatment, but was hopeful.
He came and talked to me after the procedure, he said the azygos was ok he managed to get in and balooned it again. He also said the stent in the right jug was stenosed but he opened it up completely. the left was the worst this time and he popped the valve and he was very happy with the result, he said the blood flow was so much better.
Jayne is feeling very good and is in a deep deep sleep, something she hasn't done in months and months.
I will update more as we go on here in California, but at this point, it was the best decision of our lives and well worth remortgaging the house for
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