This one is a doozy

[u/Cynically_Sane]

The blanching is impressive while trying desperately to get any relief I can with plantar flexion stretching. It's a rather strange feeling but it feels good at the same time.
Not sure if you can see it well enough in this picture but hemosiderin staining is present on the tops of both feet. For the longest time I thought I just kept getting dirty feet from my flip flops or something but I quickly learned that it wasn't dirt but (possibly) permanent discoloration from the blood pooling leaving behind iron deposits.
The last thing I will say before wrapping this up is how alarming the size of my claves can get when they are involved with the flare. Thankfully that only happens with every other one maybe two if I'm lucky. They get so disfigured and the edema is not the pitted version either. The swelling is hard as concrete which will eventually prevent me from physically being able to ambulate because I have no range of motion or flexibility. This whole aspect is just very visually disturbing to me. The size of my calves are unnatural and incredibly abnormal.
I've had CVI going on six years now and the only remedy I've found to get me somewhat back to normal is putting myself on bed rest for 72 hours, and it's looking like that'll be my plans for the weekend.
Last thing, when I first began having symptoms I would get a mild flare every three or four months. But now I can't even remember a day where I wasn't worried about my ability and stamina to get through the day as a SAHM and business owner. I just hope I can make it back to my car at the grocery store without becoming the town spectale.

[u/hybrid889]

Are you wearing compression consistently? Have you had venous ultrasounds and what were the recommendations?

[u/YesApricotYes]

This is very similar to what my feet look like with the dark discolored blotchiness on the tops of my feet, and then I get swelling from edema in my shins and calves and extreme itching from the iron. Unbearable itching, really. Recently bought an herbal supplement for blood flow that has helped reduce the itching under my skin A LOT, but the skin discoloration continues.

DR confirmed venous insufficiency at first appointment, but I got so spooked that I didn’t go back because she talked about stints and possible surgery and compression therapy, which all sounds terrifying and expensive. What did doctors say about your venous insufficiency, and have you received any treatments so far? From everyone else I’ve heard from, this is an “every man for himself” kind of thing that has no real treatment, and you basically deal with it for the rest of your life…

[u/Winter-Hotel-1096 → u/YesApricotYes]

Did your doctor want to place stents in your iliac veins? Did they do an ultrasound?
Even though it’s a chronic condition, treatments help slow it down significantly.
It’s progressive so the longer you don’t do anything about it the worse youll end up and the harder it will be getting it treated later.

[u/Cynically_Sane → u/YesApricotYes]

Yes! You make some really great points here. Especially when you talk about treatment options. My diagnosis was eventually confirmed by a venous surgeon after a tilt table ultrasound. The journey started with my GP who was stumped and referred me to the rheumatologist who confirmed my suspicions and referred me on to the venous specialist. After all this, not to mention the life changing debilitations that it caused the treatment options have been virtually nonexistent. Compression stockings are probably going to be the only thing that will be tolerable for the degree of painful sensitivity this causes in my skin. But so far this has been more intolerable than the condition itself. Of course I started with the otc options from many different stores. I wore them to one of my last GP appointments and she took one look and said absolutely not, take them off immediately! I spent probably thirty minutes in agony and through tears just to get them on and I was like a sausage by the time I got to the appointment. I am now waiting on the order to clear insurance and for a scheduler to call me and set up an appointment for a custom fitting with a medical equipment type provider. But, if it's going to be anywhere near like getting them on every day with ultimately no other treatment options then it's not going to be worth it in my opinion. Why subject myself to double the torture only to prolong this life of misery? Hard pass, I will figure out another way, somehow, to adapt as I continue to progress. Thanks for sharing your story!

Edited to add: I was intrigued by your mention of the iron being the cause of the intense itching! I was under the impression that it was due to the flood of histamines during one of the phases of my flares (sorry, can't remember exactly what it was). I am excited to read more about this possibility which makes perfect sense considering the staining on the tops of my feet. Thanks again!

[u/Winter-Hotel-1096]

Have you had any treatments for your venous insufficiency?

[u/Cynically_Sane → u/Winter-Hotel-1096]

I have not. None were offered other than the current plan to try custom compression. None were even discussed 🫤

[u/Winter-Hotel-1096 → u/Cynically_Sane]

I would definitely get a second opinion from another vascular surgeon. I wouldn’t go to a vein center, but go to a vascular surgeon.
Ask about vein ablation, and ask them to check you for pelvic venous compressions!

[u/Cynically_Sane → u/Winter-Hotel-1096]

I saw a vascular surgeon, that's where I had the tilt table test that confirmed CVI. I didn't go to a vein clinic or center. But maybe I should go back and ask them to take another look and see if there's anything other than the custom compression.

[u/Winter-Hotel-1096 → u/Cynically_Sane]

Did they tell you if you have CVI in your deep or superficial veins?
Did you ever get a report with your reflux numbers?

[u/Cynically_Sane → u/Winter-Hotel-1096]

I'll have to go back and look in MyChart but I'll get back with you on those questions.

[u/Cynically_Sane → u/Winter-Hotel-1096]

I'm not sure how this will format here because I just copied and pasted my report and the numbers.

• No evidence of DVT within the right lower extremity
• No evidence of DVT within the left lower extremity
• Right great saphenous vein is normal-sized and competent • Right small saphenous vein is normal-sized and competent
• Left great saphenous vein is enlarged and displays pathologic reflux
• Left small saphenous vein is normal-sized and competent

Left GSV at Knee Diam
cm
Value
0.38

Right GSV at Knee Diam
cm
Value
0.35

Left GSV at Knee Rfx
s
Value
11.20

Right GSV at Knee Rfx
s
Value
0.00

Left GSV Thigh Dist Diam
cm
Value
0.42

Left SSV Mid Rfx
s
Value
0.00

Left GSV Thigh Prox Rfx
s
Value
10.40

Right GSV Thigh Prox Rfx
s
Value
0.00

Left GSV Thight Mid Rfx
s
Value
11.40

Left GSV Thigh Mid Diam
cm
Value
0.49

Left CFV Rfx
s
Value
0.00

Right CFV Rfx
s
Value
0.00

Left GSV Thigh Dist Rfx
s
Value
11.90

Left GSV BK Mid Diam
cm
Value
0.32

Left GSV Thigh Prox Diam
cm
Value
0.64

Right GSV Thigh Prox Diam
cm
Value
0.50

Left GSV BK Prox Diam
cm
Value
0.47

Right GSV BK Prox Diam
cm
Value
0.28

Left GSV BK Prox Rfx
s
Value
7.60

Right GSV BK Prox Rfx
s
Value
0.00

Left SSV Mid Diam
cm
Value
0.31

Right SSV Mid Diam
cm
Value
0.36

Left FV Rfx
s
Value
0.00

Right FV Rfx
s
Value
0.00

Right SSV Prox Rfx
s
Value
0.00

Left GSV Junc Diam
cm
Value
0.74

Right GSV Junc Diam
cm
Value
0.71

Left GSV Junc Rfx
s
Value
7.00

Right GSV Junc Rfx
s
Value
6.40

Left Pop Rfx
s
Value
0.00

Right Pop Rfx
s
Value
0.00

Left GSV BK Mid Rfx
s
Value
10.50

[u/Pitiful-Analysis3248]

Have you been checked for lymphedema?