Difficult Options: I typed a great long post and... - My Ovacome

My Ovacome

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Difficult Options

ScardyCat40 profile image
23 Replies

I typed a great long post and then I lost it but this is the abridged version.

The pleural team want me to consider three options: ligation of the thoracic duct, introducing a embolus into the thoracic duct or an indwelling catheters. The first procedure would involve going to see the cardiothoracic surgeon I saw last time that shot me down. Last time I saw him we did not get as far as discussing what the procedure would involve. The second procedure would be undertaken by a radiologist. They have someone at the hospital that has done it once before I don’t know what it involves. The third procedure might be difficult as when I saw them 3 weeks ago they assessed me for a permanent drain on both sides but did not think it would be possible.

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ScardyCat40 profile image
ScardyCat40
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23 Replies
Cheryl4677 profile image
Cheryl4677

I’ve lost my post too!

ScardyCat40 profile image
ScardyCat40 in reply toCheryl4677

It’s annoying isn’t it? I was using the app and swiped down and it was gone

TinaB1 profile image
TinaB1

I was wondering why the surgeon for the first procedure has been difficult. These are some very difficult choices.. xx

ScardyCat40 profile image
ScardyCat40 in reply toTinaB1

He was annoyed I had not seen a dietician and not not tried the more conservative options. He said the surgery has a very low success rate and would only be considered as a last option

TinaB1 profile image
TinaB1

I was thinking that you should go for the best option despite difficult doctor personalities. I wonder which one might be best. Xx

Lily-Anne profile image
Lily-Anne

Okay so if it were me

I’d want more info on 2nd option

Option one has over 90% success rate but if consultant doesn’t inspire your trust I’d ask to see a different one who can do the same procedure

Not feeling option 3

🍀 do let us know before you decide (gives me more chance to research lol)

LA xx

ScardyCat40 profile image
ScardyCat40 in reply toLily-Anne

Where did you get the 90% from? I need more info about both options 1 and 2

Lily-Anne profile image
Lily-Anne in reply toScardyCat40

ncbi.nlm.nih.gov/pmc/articl...

ScardyCat40 profile image
ScardyCat40 in reply toLily-Anne

Wow thanks for finding that. I have read it through and now understand why this procedure is rare. The techniques required are not used by radiologists because of the advent of scanning techniques and it can be difficult to cannulise the thoracic duct decause of its small size.

The 90% success rate applied to the group that mostly suffered from a traumatic chylothorax ie from surgery or an accident. The nontraumatic group, which would include malignancies the success rate was 70% and this dropped to 50% in the follow up but they don’t really explain the drop. However this is still better than the reported success rate of surgery and conservative management.

I have read a few papers on the ligation of the thoracic duct and most of them imply that it is most successful in the treatment of traumatic leaks but not really used for nontraumatic leaks

Maus123 profile image
Maus123 in reply toScardyCat40

Agree with Lily-Ann but have no medical background. Read good things about option 2: ncbi.nlm.nih.gov/pmc/articl...

Although the text is a bit older, from 2011, the conclusion reads:

--

CONCLUSION

TDE is an important alternative and first line of treatment to patients with traumatic and nontraumatic chylous leaks with no associated mortality, minimal morbidity, and a high success rate.

More research is needed in the subgroup of patients with nontraumatic chylous leaks, with attention paid to better identifying the cause and location of chyle leaks. This could greatly improve both planning and outcomes of TDE.

--

All the best with the treatment.

Maus

ScardyCat40 profile image
ScardyCat40 in reply toMaus123

But the 90% success rate applies to the traumatic group which includes those that have had a Chyle leak following surgery. I would fall into the non traumatic group where the success rate is lower and finding a more experienced radiologist may be challenging

Maus123 profile image
Maus123 in reply toScardyCat40

Ah ok. That's a challenge then.

You sound like you researched your options already pretty thoroughly though, and I hope you choose the one that makes the most sense to you.

Good luck with the surgery!

Maus

ScardyCat40 profile image
ScardyCat40 in reply toMaus123

Well that post that Lily-Anne posted helped but I probably need to read a few more for a balanced view

Tesla_7US profile image
Tesla_7US in reply toLily-Anne

LA, you are wonderful. Really, researching this is useful to us all. I applaud your keen mind, curiosity and gumption! Even though in US, I'm travelling this road with all of you and learning much as we each persist.

ScardyCat40 profile image
ScardyCat40

I think what concerns me about option 2 is the lack of experience of the radiologist but I guess they don’t see that many chylothorices

Tesla_7US profile image
Tesla_7US in reply toScardyCat40

Lack of experience is a BIG DEAL! Whatever you decide, be certain the person doing it has done it MANY, MANY times. Medicine is imperfect. Ask for a more experienced radiologist!

ScardyCat40 profile image
ScardyCat40 in reply toTesla_7US

There isn’t a more experienced radiologist this is a very rare procedure

Tesla_7US profile image
Tesla_7US in reply toScardyCat40

Scardy, I understand. This is a very tough decision and you need a lot more information to make the best choice for yourself. Of course, you would want to go with whatever has the greatest chance of success.

ScardyCat40 profile image
ScardyCat40

The big concern for option 3 is that it would help relieve my breathing but I would be constantly losing essential fats and lymphocytes from my system. This could eventually lead to malnutrition and immunodeficiency.

tara108 profile image
tara108

Don't know anything about what you are facing but just wanted to say I am thinking of you and hoping and praying that you find a good and successful solution. Hugs from Australia

thomas62 profile image
thomas62

I also want to send you my good wishes. Like tara 108 I also don't know anything about what you are facing but do hope you can come to a successful conclusion as to the best way forward.

Caroles1 profile image
Caroles1

I too have no experience, but sounds like you have some of the lovely ladies on board and they have your back. You just need to weigh up all your options and see what you are happy with, it’s your body, your choice and go with who you have the most faith in,

Love Carole xx

koffeekat99 profile image
koffeekat99

I have no experience of the options or the decisions you are about to make.

It sounds like there is no right or wrong answer here. So it sounds like you are already doing what I think I'd do, i.e. ask more questions about the favoured options.

X

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