UPDATE: Hepworth, Plavix and Maye Thurner Syndrome

HI Everybody! I had my latest appointment with Dr. Hepworth yesterday, and learned some interesting things that I thought were worth sharing.

First, I told him that my symptoms have gotten MUCH better, but if he still thinks surgery would be beneficial, I am ready to schedule it. He said that he thinks my symptoms have improved because the Plavix has “remodeled” my venous system around the compression. He wants me to go back on it for two months and then check back in. I thought that was pretty interesting. I knew Plavix could relieve symptoms, didn’t realize it could actually help provide permanent solutions.

We are scheduling me for surgery, but he says there is probably only about a 50% chance we will go through with it. In the mean time, he wants me to meet with a vascular surgeon, Dr. Rebecca Ur at Vascular Institute of the Rockies. I told him that my lower body symptoms have completely eclipsed my facial problems. My calves are swollen, and I’m having weird waves of tingling/cold, seemingly coming from around my tailbone and running up and down my legs. He thinks I have some kind of pelvic vascular congestion, perhaps Maye Thurner Syndrome. Which is says is related to the problems I’m having in my face. Which is a huge relief. I kept thinking “How could two completely separate weird things both be wrong with me at the same time?” At any rate, he wants me to see her and then we will all come up with a plan.

So that is the latest. Yay for Plavix!!!

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Well that’s interesting! I didn’t know that the plavix could help alter the veins…good that it has though, & presumably you’d have to be on it for the May-Thurner Syndrome too. I hope that it’s not too long a wait to see Dr Ur, & you can get some definite answers.
How long have you been off the Plavix for, or have you been on it continuously?
Good that you may not need surgery!

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I was on the Plavix for most of November. Aside from that, I had a couple of longer courses of it back in the spring of 2020. And, looking back, that was when my symptoms got better. Back then, taking the Plavix made a HUGE difference, especially in the dizziness. So much so that when I went off, it came back and I went straight back on. But lately I don’t notice much of a difference being off or on. Presumably because of the remodeling. But his office just called and scheduled surgery for June 22nd. I’m a little hesitant because I usually go out of town for the 4th of July and that will probably eliminate that. But I figure surgery is probably more important. We will see if it happens!!

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@Blossom found the plavix helpful too, but noticed how much it was helping when she came off for surgery. You’ve got a while to think about whether to go ahead with surgery though!

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Wow @Bopper that is super interesting snd gives me some hope after my surgery even! Im currently back on the plavix for a trial to manage symptoms… really hoping it will help with my pre surgery symptoms (it definitely does help when I’m taking it, but would be nice if I had a permanent effect like you did!) fingers crossed. The vascular institute doctors are great so I hope you get some answers there. Good luck!

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@Blossom, I’m sorry to hear you’re still having symptoms! What’s going on?

Crazy how many odd ailments exist. Thank you for introducing me to a new one. Hadn’t heard of May Thurner Syndrome. It sounds very uncomfy. I hope there’s a not too invasive fix for that if you do have it. Also hope you can get an appt soon w/ Dr. Ur.

Interesting to know that Plavix has potentially remodeled your circulatory system to some degree. I wonder if you had a scan done or testing if that would clearly show up? (Not doubting Dr. H…just curious about what the remodeling would look like.)

Hopefully, you won’t need that June 22 surgery but it’s there for you if you do. Yes, surgery is more important if needed than traveling. A trip can be rescheduled but good health cannot. :blush:

No follow up testing as of yet. But he may be waiting for my meeting with Dr. Ur for that. Yes, so interesting the constellation of syndromes that show up around Eagle. I wish I understood it all!!!

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I was having some lingering presurgery symptoms so I am currently on a plavix trial to help in the meantime as I’m healing. It helps with my symptoms so much, so no use taking NSAIDs or painkillers. But I’ll be going off of it soon to see how I do.

That is so interesting. Hope it’s just a healing thing!!!

This is pretty interesting Bopper. Thanks for sharing it. :hugs: