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 DVT surgery options + my short story

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curmitt



Posts : 4
Join date : 2011-08-13

PostSubject: DVT surgery options + my short story   Sun Aug 14, 2011 11:45 am

Hi all, im 28yr male from Australia and I suffer with what is now a chronic DVT in my leg. It extends just below my groin to my lower calf. Like many I have been given the old treatment of stockings and not much else but frustration. It started after i tore my calf muscle in a steep drift, and it just never really got better 100%. After being given a bum steer off one professional, i went around 6-8weeks before seeing a physio and then given treatment for a torn calf muscle. A few months later I was still in pain(swelling ect.. all in hindsight classic dvt signs). After seeing physio again they sent me to the doctors -> then for dvt scan-> then hospital after finding a large dvt.
So 18 months later and coming off the blood thinners medication and no reduction in clot size, I am told I will have to wear a stocking for the rest of my life....I hope another 50 years. This seems like a terrible option and it kind of leaves you feeling shut out in the cold, and im reading many peoples sentiments are very similar. Though the stocking make a massive difference to my pain levels, they are hot, uncomfortable and anoying and feels to me like a bandaid solution to the problem.

Unfortunatly my Vascular surgeon tells me there is no surgery for chronic dvt, which seems odd cause it dosnt seem like a real big ask to shove somthing up a large vain and clear it out. They do way more complex stuff then that to hearts, organ transplants ect...
So anywayz, after a week or so of trawling the net im seeing youtube videos of surgeons removing DVT's, people talking about having theirs removed ect... so i cant understand why am i being told theres no surgery for my DVT, and the guy im seeing is a university proffessor on vascular stuff.

So im on a quest for info on DVT surgical removal, what types of surgery there is(seems there more then one way to do this), and where and who in Oz can i see to get the ball rolling on this. I would rather have this thing removed earlier then later. I understand there is gonna be valve damage, but i dont care. That will more then likeley result in me having to wear a knee high stocking which i live with, small price to pay really.

Any info people can help me with will be much appreciated, what i have now is a bit scratchy and inconsistend. Just after so solid surgery options info.
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dero
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Join date : 2007-12-09
Age : 57
Location : Near Ottawa, Ontario Canada.

PostSubject: Re: DVT surgery options + my short story   Mon Aug 15, 2011 2:23 pm

Eh Curmitt,
Welcome to LADVT, look at it as an elite Club for DVT survivors, because that is what we all are, survivors. Many have not made it this far after either getting a clot and "IT" becoming a PE and then suffocating them, I have not had a PE, but a friend who has had one told me that that, is how it feels, you can't breath... May they R.I.P.
I have been wearing a FUGLY (compression sock) for the last two years and like you have said, they are uncomfortable, hot and for the time being yes a band aid, but a band aid I have come to appreciated. Like you also pointed out, it does help with the pain and swelling. After having just clotted in the opposite leg, a second FUGLY is being ordered. I wear it from the time I get up to the time I get back in bed. I know I COULD NOT go a day without it, specially at work, I do a lot of standing on my feet(what other way is there?) scratch and I have seen the results of a day without the FUGLY and I did not like it.

As for the operation you are seeking, I think it is too late for you to have it, you have to understand the process that the clot goes through.
In the first 4 to 6 weeks it (the clot) melds with the inner wall of the vein where it is,becoming scar tissue. I don't know the protocol for this in Ozland, but in Canada they only operate (remove the clot) if the patient's life is threatened by the clot and this can only happen in the earlier stage, before the clot actually starts melding with the vein.
Like you pointed out, yes there are some damages being done to the valves while the clot does meld to the veins, it actually keeps them open, so preventing them to act like a lock system (maritime system).
This is what is called, PTS (Post Thrombotic Syndrome ) the compression replaces this lock system...

It seems that we all ask the same questions when we initially get the clot and we all get the same answers,
"here is the sock and I'm sorry."

I have talked with a specialist (Hematologist in the Thrombosis field)that has been researching "how to fight PTS" her whole career and in a nutshell, the conclusion was, "here is the sock and I'm sorry".

It actually took them 50 years to come up with a replacement drug to Warfarin and still that is not a 100% done thing (still many things are wrong with these new oral anticoagulant drugs, but it's a step in the right direction, maybe PTS is next, who knows?
Until then, I will be wearing two FUGLIES, I won't like it but eh, I don't like what NOT wearing them does to me...
Hope this helps, if you have any questions about anything I talked about, please ask...

dero

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curmitt



Posts : 4
Join date : 2011-08-13

PostSubject: Re: DVT surgery options + my short story   Mon Aug 15, 2011 11:39 pm

Thanks for your reply. I seen a Vascular surgeon today, and same thing. Compression stockings are the only answer. He claims that the clot is not nessacarily restricting flow, the swelling is to do with the valves being rooted now. As such clearing the vein would do little to improve the situation, infact it would make it worse! due to the fact I would have a big open vain with all rooted 1-way valves. The only answer would be to invent a new unheard of mechanical "One way" valve to install into my vein, and it would need to be a few of them(there is around 14-16 valves natraully in the leg). He explained that currently the blood flows in other undamaged veins at the moment(if the the clot is not bypassing blood, which im having a test for in november) and its better that way because they still have working valves. Its just they are too small to cope with all the blood flow and thats where the swelling still comes in.
He continued to say that the Clot itself is a secondary issue now, the main issue is trying to stop ankle/feet ulcers which people suffer because of blood clots, and thats done by the compression stockings.

So in short, my options are limited to, do-nothing, start inventing vascular 1-way valves or wear stockings. The only thing i can really hope for is i get good results in the november leakage test and i can move to a knee high stocking instead of a full legnth bugger.
All the Trellis, AngioJet, Thrombilysis, thrombectomy surgery's are basically for clots less then a week old or conditions that are life threatening. After that the body starts to coat them in a protective coating and they harden, in the process your vavles are rooted and thats the end of the show.

The only thing in hindsight that i wish the doc orginally would have told me was, to wear stockings at the start. An interesting point the vascular surgeon made, was that the stockings not only help the swelling by helping to purge the blood out, but the encourage a natural body defence that dissolves clots(its still yet to be discovered why exactly this is), however this is too late for me now as the clot is hardened. If the doc got me to wear stocking immediatly when i started warfarin, my clot may have shrunk a bit more then the measly 1 inch (25mm Oz) that it did.

So fortunatly now I am much wiser then I was at the start, but that only makes me wish things had been done differently back then. Given time i will learn to get used to this dam stocking and I will just be moving on. Hopefully someone out there is smart enough to invent a fix for this over the next decade or 4 and we can all have some releif from this.
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T-Bone



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Join date : 2010-10-10
Age : 54
Location : Vancouver, BC

PostSubject: Re: DVT surgery options + my short story   Tue Aug 16, 2011 9:04 pm

I saw a show on the growing replacement heart valves using stem cells. They talked about being able to grow lengths of veins or artries so why not veins with valves?

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curmitt



Posts : 4
Join date : 2011-08-13

PostSubject: Re: DVT surgery options + my short story   Wed Aug 17, 2011 3:18 am

Thats mad, I dont see why they couldnt make new ones with valves then. Be nice if they hurry up with that.
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