Dr. Hepworth told my daughter that it is possible she will not derive much benefit from his surgery unless the vascular compressions elsewhere in her body are addressed. She feels there are many adhesions and compressions throughout her chest, pelvis and abdomen. Dr. Brook Spencer diagnosed Left Iliac Vein Compression but my daughter cannot tolerate a stent of titanium and nickel in her body. Is anyone aware of Vascular Surgeons who look holistically at what is going on in the whole body system instead of just addressing their particular organ? This seems so important given the relationship of compressions to CSF leaks. Also, what imaging would be most useful to look at all these areas and locate compressions and adhesions? (Ideally without gadolinium) Thank you so much.
I’m sorry that Dr Hepworth didn’t feel that the surgery would be helpful for your daughter, but at least he’s honest I guess and not giving you false hope? Did he have any suggestions of doctors for you? I think other members have been referred to specialists that he’s recommended…
I hope that someone is able to suggest a doctor who can help, I don’t know what scan would be helpful as your daughter can’t have gadolinium, as an MRI with contrast would normally be the best scan.
Will pray that you can get some treatment for her , and sending you a hug, must be so hard for you 
I’m surprised he said to treat other compressions first. You usually address from the top down. He ordered me a CT angiogram of chest, pelvis and abdomen.
@mogulmama - Our member @nnaeve would be a good resource for you as she has hEDS & has been diagnosed with much the same problems as your daughter. She also sees Dr. Hepworth & has been told the same things as @Brandy mentioned.
Here’s a link to one of her posts. Scroll to the bottom of the discussion thread for her most recent one that agrees w/ @Brandy:
So kind of you to point this out, Isaiah. It’s all so complicated. I am completely overwhelmed. Add to this Jenn can’t tolerate a stent so whoever fixes the downstream compressions has to have a workaround. The prognosis is pretty grim unless they all get fixed.
Sorry, I wasn’t clear. He most definitely thinks she should have surgery with him and that is the first step. But the other compressions will then need to be addressed. His NP recommended Ty Garland at Vascular Institute of the Rockies but he doesn’t do telehealth and travel will be stressful. Especially if we find out his only treatment is stents…Curious if anyone else has found a vascular compression surgeon who does telehealth?
You are so kind. Thank you.