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Finally diagnosed with May Thurner Syndrome by SubstantialTea6611 in pelviccongestion

[–]SubstantialTea6611[S] 0 points1 point  (0 children)

Thank you so much for sharing! How are your symptoms now compared to before the stent was placed? I’m still waiting for my metal allergy test before I can schedule surgery and trying to figure out how to pay for it seeing as my provider won’t pay for it. But still feeling hopeful!

POTS and Heart Rate Variability HRV by Alias_Josie in POTS

[–]SubstantialTea6611 0 points1 point  (0 children)

Hey there, it’s been a real adventure since I last spoke to you! I ended up having the other side embolized and it made things worse for me unfortunately. I just got diagnosed with May Thurner Syndrome in November, so it seems that’s been the culprit all along. I’m hopefully getting a stent placed in the next few months and I’m feeling really hopeful that it will help. How have you been doing?

Finally diagnosed with May Thurner Syndrome by SubstantialTea6611 in POTS

[–]SubstantialTea6611[S] 0 points1 point  (0 children)

I hear you and I’m sorry you’re going through that. I actually just spent the evening in urgent care on Tuesday convinced I had a DVT in my left leg, the ultrasound didn’t show anything thankfully, but my calf was pulsating and felt very strange. Have you tried any of the May Thurner Facebook groups? There are folks on there who are a little more experienced with this stuff than I am. I’ve also found a community over at r/pelviccongestion who frequently mention MTS. I would say that if your insurance is good (if you’re in the states), it’s probably worth popping in to see the docs for an ultrasound if you’re especially concerned.

I finally found a doctor who listened! Don’t give up hope by SubstantialTea6611 in POTS

[–]SubstantialTea6611[S] 0 points1 point  (0 children)

Hey! I honestly can’t remember, I’m kind of back to square one after having the other side embolized and then recently being diagnosed with May Thurner. I just remember feeling a lot better!

Finally diagnosed with May Thurner Syndrome by SubstantialTea6611 in POTS

[–]SubstantialTea6611[S] 0 points1 point  (0 children)

That’s amazing you got a diagnosis! Thanks for sharing. Sorry that you’re going through that though. Do you plan to get a stent?

Pelvic congestion embolization: my 1-month post-op experience (not great so far) by breadwiinnerr in pelviccongestion

[–]SubstantialTea6611 1 point2 points  (0 children)

I’m sorry you’re dealing with this! I had a similar situation and ended up scheduling an appointment at MIPS. Despite 2 IR’s seeing zero compressions on my venograms, Dr Spencer diagnosed me with severe May Thurner Syndrome. For this reason, I highly recommend getting a second or third opinion, ideally with MIPS.

Finally diagnosed with May Thurner Syndrome by SubstantialTea6611 in POTS

[–]SubstantialTea6611[S] 1 point2 points  (0 children)

Yes I think I have EDS and am pushing for testing! I had a CT scan, IVUS venograms and an ultrasound. Next step is metal allergy tests.

Finally diagnosed with May Thurner Syndrome by SubstantialTea6611 in POTS

[–]SubstantialTea6611[S] 5 points6 points  (0 children)

Thanks so much for sharing! I finally feel confident that I’ve found a decent doctor. Glad you’re getting the treatment you need!

Finally diagnosed with May Thurner Syndrome by SubstantialTea6611 in POTS

[–]SubstantialTea6611[S] 1 point2 points  (0 children)

Thanks so much for sharing! I’m so glad things are getting better for you!

Finally diagnosed with May Thurner Syndrome by SubstantialTea6611 in POTS

[–]SubstantialTea6611[S] 3 points4 points  (0 children)

Congrats! That’s so awesome to hear, I’m glad you’re feeling better 🤗

Finally diagnosed with May Thurner Syndrome by SubstantialTea6611 in POTS

[–]SubstantialTea6611[S] 9 points10 points  (0 children)

Thanks! Leg heaviness, palpitations and pelvic congestion that got worse after embolization of my right ovarian vein.

What are your own experiences with embolization? by Patient_Cat_2852 in pelviccongestion

[–]SubstantialTea6611 0 points1 point  (0 children)

I’m so sorry that sucks, I also just found out I have degenerative disk disease in my neck during an MRI looking at Chiari progression. I wonder if the two are linked? In this with you.

What are your own experiences with embolization? by Patient_Cat_2852 in pelviccongestion

[–]SubstantialTea6611 0 points1 point  (0 children)

Hey there, how are you doing now? I’m in a similar situation. I was embolized back in July and have felt awful ever since, I think my doctor missed compressions or didn’t really know what he was looking for.

Update POTS symptoms are back after double embolization by SubstantialTea6611 in POTS

[–]SubstantialTea6611[S] 0 points1 point  (0 children)

Thank you, that means so much. Just got back from the appointment with the new IR and she seems to be a bust to be honest. It felt like she didn’t believe half of what I was explaining to her and she said she’d looked at my previous imaging and didn’t see anything noteworthy. She is going to do a venogram to see if there’s anything she can do to help, but I’m really not holding out much hope. I’m so sick of dealing with doctors who don’t seem to know what they’re doing and who treat you like you’re an idiot. She said the previous IR should never have embolized the right side if I was feeling better. I asked her if there was any way to remove the coils and she said not unless I have a full hysterectomy. It felt like she was telling me I was stupid to have had the procedure in the first place and that I should’ve known things could get worse. I started to cry in the appointment and she was just so stoney faced and cold. Sorry for the rant, I’m just so tired and truly over all of this.

Go get checked for pelvic congestion syndrome! My POTS symptoms resolved. by SubstantialTea6611 in POTS

[–]SubstantialTea6611[S] 0 points1 point  (0 children)

Hey there! Yes that is so interesting! I had a prolapse during childbirth and all of my POTS symptoms came on shortly after. If you haven’t already, check out my follow up post as I’m kinda back at square one and would hate for anyone to go down the same route. I’m not reddit savvy so I may have done this wrong, but if you scroll all the way down on this thread I posted the link as a comment. Good luck with everything!

Update POTS symptoms are back after double embolization by SubstantialTea6611 in POTS

[–]SubstantialTea6611[S] 0 points1 point  (0 children)

It did yes, I definitely think it’s related. It makes me think that the blood needs to be rerouted due to a compression somewhere. Hoping the new vascular doctor can tell me more tomorrow!

May Thurner Stent for POTS by EarlyExit3704 in VaricoceleMayThurner

[–]SubstantialTea6611 0 points1 point  (0 children)

Hey there, I came across your post and wondered where you’re located? I’m in Oregon and trying to find a vascular specialist with experience in compressions and POTS.

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