Malea
Senior Member
- Messages
- 260
I have a question for a close friend who is in urgent need of help.
She has myopathic EDS, dysautonomia, ptose of stomach and colon, CCI/AAI and her jugular veins seem to be compressed (they are visibly thick and swollen).
Since years she can’t really eat and drink anymore because of extreme pain and pressure in the stomach. For weeks now, there is also practically no digestion even when doing daily enemas. All of this feels very close to complete failure/shutdown of the GI-tract.
She receives TPN over a port but the veins seem to collaps when it’s given. (Jugular Veins growing visibly thicker and thicker during i.v. until she has to stop)
Her long-stomach hangs down to the bladder and her colon is also way too low. She really needs the right kind of surgery but doctors here in Germany have veeery different opinions about which surgery to do. None of them has any background with EDS. They also don’t take the jugular vein compression thing seriously.
So my most important question is:
Does anyone of you know of a EDS or other expert somewhere in the world she could contact that deals and has experience with this kind of severe GI-problems?
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Edit Extra information:
There might be questions about possible compression disorders coming up. She is diagnosed with nutcracker, an atypical form of MALS* and SMA, for which she already had surgery that brought no relief.
It is not very clear how these disorders are related to the ptose of the organs.
*the hypertrophic diaphragm presses the truncus during inhalation.
She has myopathic EDS, dysautonomia, ptose of stomach and colon, CCI/AAI and her jugular veins seem to be compressed (they are visibly thick and swollen).
Since years she can’t really eat and drink anymore because of extreme pain and pressure in the stomach. For weeks now, there is also practically no digestion even when doing daily enemas. All of this feels very close to complete failure/shutdown of the GI-tract.
She receives TPN over a port but the veins seem to collaps when it’s given. (Jugular Veins growing visibly thicker and thicker during i.v. until she has to stop)
Her long-stomach hangs down to the bladder and her colon is also way too low. She really needs the right kind of surgery but doctors here in Germany have veeery different opinions about which surgery to do. None of them has any background with EDS. They also don’t take the jugular vein compression thing seriously.
So my most important question is:
Does anyone of you know of a EDS or other expert somewhere in the world she could contact that deals and has experience with this kind of severe GI-problems?
————————
Edit Extra information:
There might be questions about possible compression disorders coming up. She is diagnosed with nutcracker, an atypical form of MALS* and SMA, for which she already had surgery that brought no relief.
It is not very clear how these disorders are related to the ptose of the organs.
*the hypertrophic diaphragm presses the truncus during inhalation.