Interrupted - What a pain in the neck! (5 wk update Pg 3)

[Interrupted]

Am I understanding this right: your first doctor did not treat the lower valves (in the jugular near where it merges with subclavian?), what did he treat then? Higher in the jugulars?.

The report from the procedure says...
Right: 1 x ballooning "stenosis on levels of valve with delay outflow...performed in lower part of the vein"
Left: 2 x ballooning "severe stenosis with delay outflow" (nothing more)

The thing is, if it was spotted (which I don't believe it was because nobody told me anything about valves!) that the valves were in the one case not working and in the other malfunctioning, how would angioplasty have helped? As far as I know valves are a bit of a moot point as to how to treat currently and it's a toss up between kissing balloons, cutting balloons, stents or potentially transplants...?

For 7,000 pounds you got a procedure that missed the nonworking valves and the malformed valve..

Included there is... one trip to Ireland, flights and doppler. One week in Poland, flights, procedure and extra two days stay. And one trip to Glasgow, flights and doppler. It's cost a hell of a lot of money for me to get worse, and as I say i'll be paying for it in two ways for a long time! lol

Sorry it has turned out this way. Absolutely if you have to get off the merry-go-round and waiting this out, that is a reasonable choice. I'll be interested in what you hear back from Dr. Simka if you care to share it.

Hey it's cool, i'm up a creek so to speak but y'know I had to try, and the negatives are going to happen to some of us. We know this as i've said before.

Yes of course i'll report back. Every bit of info is necessary at the moment for things to advance.
You never know, I can always rob a bank and try again one day

Thanks Cece xx

[CCSVIhusband]

Am I understanding this right: your first doctor did not treat the lower valves (in the jugular near where it merges with subclavian?), what did he treat then? Higher in the jugulars?.

The report from the procedure says...
Right: 1 x ballooning "stenosis on levels of valve with delay outflow...performed in lower part of the vein"
Left: 2 x ballooning "severe stenosis with delay outflow" (nothing more)

The thing is, if it was spotted (which I don't believe it was because nobody told me anything about valves!) that the valves were in the one case not working and in the other malfunctioning, how would angioplasty have helped? As far as I know valves are a bit of a moot point as to how to treat currently and it's a toss up between kissing balloons, cutting balloons, stents or potentially transplants...?

I don't believe this is true. Dr. Sclafani has talked about ballooning them and pressing them into the veins of the all (EDIT - THIS WAS SUPPOSED TO READ INTO THE WALL OF THE VEINS ) ... basically eliminating them. At least I think I remember that (again key words being think I remember).

I know nothing I say is going to help right now, but I'm sorry to you ... and I wish it was 10 years in the future and all of this (CCSVI knowledge) was much further along and you could go to the hospital right up the road and they'd know what to do ...

All the best to you. Search around and see if you can get an answer as to what to do about those valves.

Dr. Zamboni said valve problems in the IJVs were the most common things he found though (not stenosis) ... so they must be treatable! (see Cheer's post from earlier today).

[Interrupted]

Ok will do, thanks CCSVIhusband. I will forward these results on to Poland and see what they say, I mean I had it done early because I was worried about clotting or collapse being a potential cause of my worsening but thankfully I seem to be ok these counts. Whatever they say I will carefully consider and report back here, but I really do feel I need a break for the moment, and to be honest i'd be scared of things getting even worse if I do it again. I'm still learning to cope with the fallout from the last one

And thank blossom, burg and Drury for your kind words and support. Best of everything to you all xxx

[bluesky63]

Hi there. This sounds like a really tough time, especially when you describe how it's gone downhill from where you were before you even had the procedure.

I don't know your history or anything, but I see that you're focusing on the role that possible restenosis after the initial procedure may have had in making you feel worse. Is there any chance you might be sick? Is there any chance you picked up a germ in the facility? It's an invasive procedure, and you could have germs introduced. I have to say that many of the symptoms you describe are the way I feel when I am ill -- MS symptoms are so much more debilitating when you're sick, even with a virus, and fatigue is also much, much worse.

Is there a doctor who can do a basic screen and check your bloodwork? You might want to see if there is any other explanation for your symptoms. It would be great if you found something that could be treated. You still have to sort out the disagreement among the reports, but at least you could look at your bloodwork and get plenty to drink. Best of luck to you!

[Cece]

The report from the procedure says...
Right: 1 x ballooning "stenosis on levels of valve with delay outflow...performed in lower part of the vein"
Left: 2 x ballooning "severe stenosis with delay outflow" (nothing more)

The part about stenosis on the levels of the valve sounds to me like they may have ballooned the valve. Valves can pop back out again for restenosis without clotting, that may be what happened? Wishing you rest and healing.

[Interrupted]

@ Bluesky: A very valid thought that everyone should consider. But I did ask for a FBC 2 weeks after I came back and it was fine. Will be checking on results of last week's tomorrow morning. Thank you for the thought x

@ Cece: Yes, I mean reading it now it seems it may be so on the one side, though Simka said "stenosis" to me after he did the doppler. Little was said after the surgery because the surgeon never came to talk to us, we just got the report in text. I shall hope to find out more with their response. Upon originally reading the report I just thought it meant in the area of the valve not "on" it, so to speak - a mystery at present

[Drury]

Interrupted,

I know doctors have said flying does not come into play when you have CCSVI but I still am inclined to wonder. Assuming you have made several air trips for your treatment and followups I wonder if that has had any impact? - not to mention traveling in general can cause stress on ones body.

I just put that out there and really hope you can take it easy for a while and slowly heal. You have been through so much.

Wishing you well,

Drury