Pelvic Embolization Done!

[aunie]

Okay so awhile back I had posted that I was going to go through a procedure for pelvic congestion. Well I finally had it completed on may 24th, so I am about 3 days post op. I had vein embolization done by an interventional radiologist at UT southwestern in Dallas, TX.

First I would like to explain that I had and an MRA of my pelvis and it confirmed irregular flow in both my ovarian veins, but it wasn't hugely obvious if I had a network of them and how bad it was. I had to basically go ahead and go through with the procedure and hopefully they would find something. I am so glad I did! I knew I had all the symptoms and I could literally feel the blood flow in my pelvis so I knew they had to find something. Sure enough he started the venogram and injected the dye and wow did all those nasty veins light up. It was a mess!

It was a way easy procedure, I just laid on the table and I got to watch the whole thing, I didn't have anything for pain, just a bit of versed to keep me calm. I tend to react really strange to meds so I opted out of the morphine,but anyone else who does fine with it can have something for pain, although I didn't need it during the procedure, it was relatively painless. I ended up having 46 coils placed in my ovarian veins and some branches to completely block the flow.

Okay so I know everybody wants to know what it did for the pots, right? Well Im not sure yet. Before I went into surgery I had been literally flat for the majority of my day, not able to withstand any standing for more than maybe ten minutes at a time, sitting up maybe a few hours max. Probably the worst down period I have ever had.

So from that I have improved slightly. When I stand I do not feel that huge rush of pressure and blood falling to my legs and pelvis. My head seems clearer and my legs seem not as blue or puffy. Right now that's about all I can tell.

I am still mostly bed bound because the post op pain and swelling is keeping me from moving around too much. Sitting up puts pressure on my pelvis and makes it ache a lot more. My legs are still wobbly and I am still really tired, but to be honest I feel like it's mostly my body trying to recover from the surgery and the lack of movement prior to surgery. I am optimistic that in another week or so I will be healed from surgery and I can start building my strength back up.

I don't know if this is what caused my POTS, but it definitely wasn't helping me get better, right now I have alot of healing and catching up to do, but I do think the surgery helped. I am still running tachy and having allergies and flu like symptoms, but Im hoping that this little glimpse out of the fog will give me strength to try other treatments as well.

Right now I am not on any meds for the POTS. Im hoping to try some after I heal. I still need vein therapy on my legs too.

I will post about how I'm doing for the rest little bit and let you all know how I am progressing. Next week could have the possibility of bringing a dramatic change!

[sue1234]

I really hope this gives you some improvement in all areas of your health!! Definitely keep us updated on how you feel.

What doctor explored this issue with you? Your gyn?

[aunie]

Actually is was Dr. Amer Suleman in Dallas. He was reading some past ultrasounds and labs I had from a few years ago and he stumbled on an Ultrasound that said I had varicose veins on my uterus. He referred me to the radiologist to see if embolization would be a good option, since he was thinking the dilated veins were contributing to my symptoms.

Back when I had the ultrasound, we didn't know I had POTS, and the gyno I saw thought the veins were no biggie. Not the smartest doc I've seen for sure.

My new gyno agreed with Dr Suleman and thought it was a good idea, but I just barely saw a new gyno a week before surgery and I was pleasantly surprised, he actually knew a little about POTS and definitely believes Pelvic Congestion exists.

[sue1234]

I have my yearly gyn appt. coming up. I'm going to ask my gyn to explore this theory with me, as whe is just so nice. Last year, during my first appt. with her and explaining my POTS life to her, she kept saying, "You just shouldn't have to put up with that". She referred me on to a neuro(no help there). She thought she was helping me by referring me. If I could find the compassion and interest in a neuro or cardio that my gyn has, I'd have some kind of symptom control.

Anyway, she's going to surely be pretty open to checking me over thoroughly for pelvic varicose veins, as I had them pretty bad with all my pregnancies. I can't imagine stretched out veins snapping back into shape after that much engorgement!

Definitely update on any changes you notice!!

[nunntrio]

Please keep us updated wether this procedure helped with POTS. I have been treated for PCS and have coils in my left ovary. However they did not get all my bad veins when they initailly treated me. I am debating wether or not to have these veins treated/coiled. My vein Dr. believes that could be contributing to my POTS but he did not feel they were bad enough to be sole factor. My vein Dr. said he would be willing to embolize my veins but he is not sure of the outcome in respect to POTS. I actually went to Dr. Suleman last week to get his opinion. He did a bunch of tests and I will go back up in a few weeks for a follow up. Anyway thanks for sharing your story and please keep up posted.

[juliegee]

Interesting! Thanks for sharing, Aunie. Dr. Peter Rowe at Hopkins believes that pelvic congestion is ONE factor in addition to an autonomic dysfunction that comprises CFS.

I had this same procedure, for a different reason, and in retrospect- I think it did help my POTS/NMH. I had a fibroid that grew quite large in a short period of time. It was non-existent on one CT and in less than a year later it was 10cm. The interventional radiologist couldn't believe how incredibly large my pelvic veins were that fed this fibroid. Unlike your procedure, Aunie, this one was incredibly painful. Apparently as a fibroid dies, it emits pains quite similar to a heart attack- death of muscle tissue. However, I was always very comfortable as I had two IV's with plenty of pain meds being pumped in both. I opted for this procedure as I knew a traditional hysterectomy would have been very difficult for me to endure and recover from.

At last check, my fibroid was 4 cm.- very manageable. In the short term, my symptoms were a bit worse, I think from all of the meds used. After that resolved, my autonomic symptoms were much improved. Once that blood supply to my pelvis was normalized by making the veins smaller, I had more blood for the rest of my body to use. My hypovolemic symptoms improved.

If you think this is an issue- check it out. It's a relatively easy way to improve symptoms.

[sue1234]

This is weird--I have seen Dr. Suleman in the past! I did not talk of this with him, however, as I only learned of PCS after my couple of visits to him. I REALLY want to know if this helps, and Nunntrio, if you find out anything.

[sue1234]

I have been looking all day(well, part of it) for any kind of research on how much volume pooling might occur with pelvic congestion. I can't find anything remotely so. Has anyone run into anything?? I would like to have something to bring my gyn, hoping she will refer me on to a vein person.

BTW, I do have the Peter Rowe information, but was looking for something else, also.

[bensman]

I recently had an ultrasound done of my uterus/ovaries. Would my results have noted if I have large veins? My obgyn was only concerned about the ovarian cyst and heavy bleeding. This is interesting.

I was scheduled for a hysterectomy in February but backed out because I didn't have a good feeling about it.

[sue1234]

Volley, I also was supposed to have a hysterectomy about 4 years ago, and backed out due to a bad feeling also. Sometimes I wish I would have gone through with it. My only ovary left kept getting big cysts, then at the last minute, go back small. Back and forth. And, my uterus is/was beginning to fall.

I should have my yearly ultrasound along with my upcoming appt., so hopefully they'll look closely and measure veins, etc. But, then again, I keep reading that they should be visualized while standing, or at least while on an upward tilt, to see how gravity affects the area. I think that would be the wisest thing for them to do, but that will be like pulling teeth around here!

[aunie]

They did see a few veins initially during a pelvic ultrasound. They did not see it on the abdominal part, but the vaginal part.

I think sometimes they are not easy to find, so a negative ultrasound doesn't mean you are clear. Even with the ultrasound results the radiologist wasn't sure, because the MRA/MRI only showed the ovarian veins flowing backwards, it didn't show the nest of varicosities all over. It wasn't until he did the venogram that we saw the real extent of the problem. So he took me into surgery and told me if nothing looked bad he wouldn't embolize anything. Fortunately though we found the big nest and did 46 coils. The record for him is 56 to place in anyone. I wasn't the record, but I was pretty bad and my tests still weren't completely concrete.

I knew that there was a problem, because I could literally feel the blood pooling. I would feel heat and pressure and pain in the area and my legs didn't pool that bad, so it had to have been sittin in my gut. Symptoms can be deceiving though because I did not experience much pain until the last few months and they have been this way for years. So sometimes it's hard to tell.

If you have even a few of the symptoms I think everyone should be checked and properly, because it could help with POTS or even resolve it for some. Just to try to encourage your docs to look thoroughly, it just another thing to rule out for us POTSY patients.

Aunie

[sue1234]

I have a problem with my stomach "bloating" badly the longer I stand. In fact, in the last year my lightheadedness isn't the main issue with standing--it's the growing abdomen that I have assumed was blood pooling. I was thinking it was a POTS-pooling issue, but maybe it is a PCS-pooling issue that is the real issue.

I was just reading up on venous insufficiency somewhere, and the guy that made a powerpoint for his college lecture said that 75% of the blood volume is in the venous system at any given time. If we have venous congestion, that is alot of blood not getting back up to the heart!

[nunntrio]

My vein Dr. said it could cause 30-40% of your blood to pool. However, if I understood him correctly my echo did not show insufficent blood return to the heart. Not sure if this could be causeing my symptoms if my echo show correct blood return. That is why I am having a POTS Dr. look at all of this for me.

[sue1234]

Yea, and all the echos I've ever had were lying down. It would be interesting if they'd do them on an upward tilt...

[aunie]

Sue, I also had that bloating issue! I would look pregnant, and my abdomen would just feel huge. It was really uncomfortable at times!

[nunntrio]

Yea, and all the echos I've ever had were lying down. It would be interesting if they'd do them on an upward tilt...

I had the same thought and asked Dr. Suleman about that exact issue because my echo was done lying as well down. He said it would not matter but I do not understand how it could not matter. I will ask him to clarify that when I see him in a few weeks. I know when I had my MRI done of my pelvic area the internal rediloigist said it was not the best test because it was lying down however it was the easiest first step. Luckily my varicose/reflux veins showed up even lying down.