Date in Malta with Zamboni's team ...yet I may refuse.....

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

Date in Malta with Zamboni's team ...yet I may refuse.....

Postby Luvsadonut » Mon Feb 14, 2011 7:22 am

Well, the date has finally arrived, I have a date for procedure after being scanned at the Scotland clinic in Sept last year. Recent developments from the clinic in Scotland mean that instead of potentially travelling to Scotland ( I live near London) the opportunity has arisen to be treated by a team headed by Prof Zamboni in Malta, Prof Oscar Maleti is the surgeon in charge of the procedure. The thing is, although I was diagnosed 11 years ago, Im pretty stable, my main symptom is stiffness/heavy legs which stops me walking over 1k. I have a good job with a fund management firm in the city in London, I support my wife, who gave up her job, and child of 2 years and things are relatively not too bad. However, after following this forum for over a year Ive convinced myself that the earlier Im treated the better, Ive read on numerous occasions that people who are less effected by the monster have a better chance of a good recovery. The problem is, now the decision time has arrived Im scared of the op not being a success, the fear of me losing my job due to the op not being a success is seeming like a huge obstacle. If anyone has any thoughts or have been in a similar position please let me know...I feel completely clueless!! Any input from sceptics, enthusiasts alike would be very, very appreciated.
thanks
Darren
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Postby Motiak » Mon Feb 14, 2011 7:41 am

I'm probably alone in this but I say wait. There's a much higher chance of good than bad for you if you go through with it but if you're not in a position to handle potential badness then it feels to me like it makes more sense to wait and let the procedure be further perfected.

edit: Just to clarify my stance, I haven't had the procedure just done reading. So, don't take my opinion as first-hand opinioning.
Last edited by Motiak on Mon Feb 14, 2011 6:29 pm, edited 1 time in total.
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Postby Daisy3 » Mon Feb 14, 2011 7:46 am

were in a similar position. Should we wait or go ahead? my hubbys main problems are his nystgamus and walking. If we found other things to help those symptoms I don't think we would rush.

Please keep us updated on what you do..were in London too:-)
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Postby SCGirl » Mon Feb 14, 2011 8:30 am

Hey Darren -
I am in a similiar situation. I have a great job and my two biggest symptoms of MS are fatigue and foot drop. My concern is what I will be like down the road if I don't at least go this route. I have a date ( this week!) in NY and I have been back and forth over what I should do. All of the medicines that come out have terrible side effects and I feel like somewhere down the road I am going to get worse. Medicine treats the symptoms not the disease. I want to be able to enjoy the rest of my life with my young son. I understand your hesitancy, I had it too. But faith and prayer has sent me in this direction. Wish me luck as I hope you are able to find what is best for you.
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Postby EJC » Mon Feb 14, 2011 12:15 pm

This is a tough one Darren. I can completely understand your hesitation.

Have you discussed this with work at all or choosing to keep them in the dark?

How does your wife feel about all this?

For Emma (my partner) it was an easy choice, she was way further down the MS road than you are.

It's tough, it's not something anyone here on this forum can actually help you decide, you have to weigh up the pro's and con's and make what's probably the biggest call of your life (bigger than the biggest fund you manage!)

Have you considered asking for a conversation with the surgeon? That may make your mind up either way.

I don't feel it's even my place to give an opinion on what I think you should do, but I do wish you good luck with whatever you decide.
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Postby Luvsadonut » Tue Feb 15, 2011 3:16 pm

firstly thanks for all your input everyone it really helped me, I have decided against going to Malta, I felt that it was a little too sudden. I still have doubts about the procedure and ideally I would like to discuss them with the consultant prior to the op, which Ive been told I can do in Edinburgh. If I was in Malta the chances are that I wouldnt really object to anything as I would have already made the commitment by flying over there. Im pretty high on the waiting list in Edinburgh so it shouldnt be too long before I get to speak to the consultant about the procedure, then hopefully I can get it done with a little bit more confidence than I currently have. The issue I have is in relation to the treatment of malformed valves, my right and left jugulars are malformed and I was told that the possible treatment would be to flatten the valves to allow the flow, however, if the valves are flattened permanently will this not create a risk? Also, if the valves are flattened, thereby being further damaged, if they were to move from the vein wall after being flattened would that possibly create severe stenosis? Hopefully, these are the questions that Mr Reid will hopefully be able to answer and put my mind at rest. Thanks again for the input guys and fingers crossed and the best of luck to you all.
cheers Darren
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Edinburgh clinic

Postby Trent » Thu Feb 17, 2011 3:46 am

I had my scan in Glasgow at the end of October 2010. I'm in the #720's on their list for Edinburgh, so I've no idea how long it will be before I'm offered an appointment. Any suggestions?

I am a 69 y/o male. Are there others of this age or older having this treatment? It's been with me half my life. I was dx'd in 1985 (first symptoms mid '70s), no relapses or exacerbations until 2004, (and no drugs either), just a slow inexorable downhill drag, to the point where since last summer I've been wheelchair and/or bed confined. I never needed to take any time off work until I took early retirement in 1994/5.

I'm pleased to read on this thread that those who have had slow progression may see good improvements. That would be a huge plus, if it does work out like that. My scan showed blockages on both sides, one side longer but less constricted than the other.

You say you are expecting an appointment soon? So, what waiting list number are they up to for treatment?

I was told at Glasgow that there is no evidence to show that anyone is worse after the proceedure, but I have an open mind about that.
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Postby EJC » Thu Feb 17, 2011 5:59 am

Emma had malformed valves in both her jugular veins and both were ballooned.

Once in, Dr Reid found that her left Jugular was malformed in it’s entirety and whilst he did open the valve to a degree he was careful not to “over treat” this particular side and risk a rupture.

Before Emma’s procedure I asked the very same question about the valves, basically, don’t we need them? And if we do effectively destroy them will there be any future problems?

His response was that there is a percentage of the population born without valves in the jugular to start with, (I forget the number quoted but 5% - 10% springs to mind) without any adverse side effects.

It means you’ll not be able to be a fast jet pilot or circus performer but in normal everyday life there appears to be very little downside if any at all. But do take your own medical advice on this point – don’t trust the writings of a person on a forum you’ve never met!

We also asked physically what was done to the valves. For want of a better description they are “burst open” or “ruptured” until they lay flat against the walls of the veins with a balloon.

The re stenosis rate of treated valves seems so far to be extremely low – (in the region of 1% to 2% - again do your own checking on this).

Emma also had a blocked azygos vein which was ballooned in the normal manner.

If it’s any consolation I feel you’ve made the right decision. Emma and I decided we would prefer to wait for Emma to be seen in Edinburgh rather than abroad – but that was peace of mind and back up if anything untoward happened. We’re glad we waited, Dr Reid really does make you feel comfortable with what you’re doing. He is also very straight about possible problems and the whole theory of CCSVI being in it’s infancy.
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Postby Luvsadonut » Thu Feb 17, 2011 1:50 pm

Trent, I dont know what number I am on the waiting list but when I spoke to the girl in the office at EHC she said that they doing procedures at the moment for people scanned in August/Sept. As I was offered Malta I can assume that Im probably near the top of the waiting list, I was scanned 20th Sept, so Im sure your date wont be too far away. Although, if they get wheelchair access resolved before you get offered a date, the people in wheelchairs who were scanned before you will probably be moved ahead of you in the queue.
EJC, I also read/heard that 10-20% of people are born with out jugular valves however Im still uneasy as
a) I spoke to a vascular consultant who has no association with CCSVI after my scan and he said 'well what about when you bend over etc', so it seems that he wasnt sold on the idea.

b) although people live quite happily with no valves, their bodies have adapted naturally to the fact they have no valves and probably figured out the best way to live without the valves. In our case Im a tad worried that it is a different situation as our bodies are used to having the valves (albeit the valves not working correctly for x amount of years).

Sorry, dont mean to be negative or scaremongering but hopefully Dr Reid will give a sound scientific reason why our bodies will cope.
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Postby EJC » Thu Feb 17, 2011 2:45 pm

Luvsadonut wrote:Sorry, dont mean to be negative or scaremongering but hopefully Dr Reid will give a sound scientific reason why our bodies will cope.


Not scarmongering at all, we asked the very same question of Dr Reid.

My non medical mind tells me that valves are there for a reason and if we take them away there would be some form of side effect...it's logical right?

Well so far Emma has no ill side effects with valves in neither jugular operating.

True, you're not going to be able to stand on your head for extended periods.

Have a chat with the good Dr.
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Postby Cece » Thu Feb 17, 2011 3:17 pm

here is some of what Dr. Sclafani has said on the subject:
www.thisisms.com/ftopicp-151062.html#151062
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Postby 1eye » Thu Feb 17, 2011 6:37 pm

I was in the position you're in (except the Procedure didn't exist). Without warning, you can get paralysed . I know from experience. And I know I would not hesitate. But I do understand, believe it or not. I have a good friend with small children who has clots in two stents, and will likely go no further.

If you are walking, and working, you have time on your side. I stopped working about two years before becoming SPMS. Working keeps your blood moving, in a lot of cases. By the time you are really sure, there will likely be a lot of progress made. If you do do it, do it not for yourself but for the other people in your life who will benefit by having a better you. Believe me, they count more than you do. But if you are worried, but insist, get a good procedure. There is no substitute for a good interventionalist, who has done a lot of procedures, And do talk to them. Make sure you are both on the same page. If it is done by an expert, there is little risk.
"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 EJC » Fri Feb 18, 2011 6:18 am

Cece wrote:here is some of what Dr. Sclafani has said on the subject:
www.thisisms.com/ftopicp-151062.html#151062


Thanks Cece, excellent link which I'd missed.
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Postby Cece » Fri Feb 18, 2011 7:41 am

1eye wrote: If you do do it, do it not for yourself but for the other people in your life who will benefit by having a better you. Believe me, they count more than you do.

I disagree, 1eye, I think you count for a lot.
But if you are worried, but insist, get a good procedure. There is no substitute for a good interventionalist, who has done a lot of procedures, And do talk to them. Make sure you are both on the same page. If it is done by an expert, there is little risk.

total agreement here :)
We may have to figure out how we are defining expert and which IRs truly are experts.
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