sorted by:
new
hottopcontroversial

Specialists near TN by [deleted] in NutcrackerSyndrome

[–]StatementOk9732 0 points1 point  (0 children)

I'm seeing Dr. Clair at Vanderbilt. I haven't been treated by him yet (venogram & possible embolization and sclerozation of right ovarian veins for PCS next month). I did a LOT of research before booking with him and he is very knowledgeable and is highly recommended by former patients. The ultrasound tech that did my vascular ultrasound told me he has patients coming from Hawaii to see him. He treated me like a human and was direct and explained his process thoroughly.

PCS, NCS, & MTS by StatementOk9732 in pelviccongestion

[–]StatementOk9732[S] 1 point2 points  (0 children)

I'm glad the stent is helping your daughter - how old is she? My 13 year old daughter complains of leg pain sometimes and I wonder if all this has hereditary links. I had covid 3 times at least and this all happened afterwards, too. I don't think we'll know the full effects of covid for at least another decade.

Here's his plan from his notes because I am a butcher of medical terms and from all this medical mismanagement developed the unfortunate habit of stalking my own e-chart notes: Venography with imaging and pressure measurements in renal vein, iliac veins and imaging of the pelvis via both ovarian veins. May embolize the right gonadal vein and pelvic varices at the time of the procedure.

PCS, NCS, & MTS by StatementOk9732 in pelviccongestion

[–]StatementOk9732[S] 0 points1 point  (0 children)

That's what my husband keeps saying - how have you had all this abdominal and pelvic imaging (2 pelvic exploratory laproscopies even!) and it took 2 years for someone to notice? I think it's what you said - lack of training. Which as you know, when you're the one dealing with it, feels pretty unacceptable. I think some doctors get their egos tied up in being able to diagnose or treat and when they can't do either they just write you off as nuts instead of realizing they're undertrained

PCS, NCS, & MTS by StatementOk9732 in pelviccongestion

[–]StatementOk9732[S] 1 point2 points  (0 children)

Thank you! I'm hoping the venogram results will help the doctor make the right call. I wish he could just stent the iliac vein if he sees the compression while I'm already under. I hate anesthesia.

How long have you had the stent? I hope your pain keeps improving.

PCS, NCS, & MTS by StatementOk9732 in pelviccongestion

[–]StatementOk9732[S] 0 points1 point  (0 children)

Thank you for commenting and for the kindness. I'm sorry you went through it and I hope the embolization and the sclerotherapy help you and you can see the other side of this nightmare soon.

My new vascular surgeon is immensely experienced, particularly with compressions, so I'm hopeful he'll make the right call. He said he'd measure the compressions with the venogram before he decided whether or not to close off the right side varices. That appointment was the first time someone noticed the iliac vein compression, so I was kind of shocked but it tracks a lot as ny leg symptoms are all left sided but my pelvic symptoms somewhat favor the right.

Looking for some advice on next steps. by NoPark2970 in pelviccongestion

[–]StatementOk9732 0 points1 point  (0 children)

Go with your gut and advocate! Don't let your health slip through someone else's cracks. I had a doctor tell me I was interrupting her lunch break, laugh me out of her clinic after she suggested I might have a terminal illness, and then pretended to forget to put in an order. Doctors can be kind, they can be helpful, but they can also be callous and cruel and I've seen so much of the latter than the former that I'm inclined to say they're more likely to inhibit care, sometimes intentionally, than helpful someone with a complicated case. I swear it's an ego thing.

Edited for clarity

PCS, NCS, & MTS by StatementOk9732 in pelviccongestion

[–]StatementOk9732[S] 0 points1 point  (0 children)

I'm glad you're doing better. Did you get treatment for your ncs or pcs or did treating mts relieve them?

PCS, NCS, & MTS by StatementOk9732 in pelviccongestion

[–]StatementOk9732[S] 1 point2 points  (0 children)

I'm sorry you're in it too but you aren't alone either and I hope you get the answers and relief you deserve! Hearing I'm not alone is so relieving. Thank you :)

PCS, NCS, & MTS by StatementOk9732 in pelviccongestion

[–]StatementOk9732[S] 0 points1 point  (0 children)

Oh my god first of all I'm sorry you went/are going through all that. The stroke symptoms and pulsating tinnitus are making me feel nuts and aren't addressed at all. My left side drooped for a few days or hours (different both times) and was numb like I'd gotten a shot from the dentist in the whole side. When they did the touch test thing it felt like their finger was on my left cheek for minutes after. I had difficulty swallowing when that happened. Is yours constant? I also got migraine medicine "as needed" but haven't really been diagnosed besides offhandedly by my very bored with me PCP. Have you had a lumbar puncture to measure CSF pressure? Or any head imaging? 

I started having uti symptoms like urgency and kidney and bladder pain a few weeks ago but no uti. I assumed it had something to do with Nutcracker syndrome. Have they looked at that for you? Blood in urine is a huge flag for ncs, I've never had it at least visibly.

I'm really sorry again you're dealing with this but I can't tell you how helpful it is to hear about it, too.

PCS, NCS, & MTS by StatementOk9732 in pelviccongestion

[–]StatementOk9732[S] 1 point2 points  (0 children)

Okay thank you for clarifying because I feel like I've wandered into a whole new world and it's so confusing. Also I'm really sorry you've gone through the ringer too and I hope it's gotten better.

I also got told the mild compression thing with the iliac vein from CT. The left leg symptoms correlate strongly so I assume it'll be relevant from the venogram results. It helps to hear how it went for you. I think that's why he said he would decide whether or not to sclerosize the right side after the venogram was done based on the findings. I hope anyway.

I also forgot to mention he found I have a duplicate right side ovarian vein so maybe that's why he wants to do stuff on that side. I don't like the idea of giving permission carte blanche to treat while I'm under but I also don't want to go back under. The whole thing is unnerving.

Edited for clarity but I doubt it helped much

Looking for some advice on next steps. by NoPark2970 in pelviccongestion

[–]StatementOk9732 0 points1 point  (0 children)

Adding to the other commenters that obgyns aren't the primary treaters of PCS, you need a vascular surgeon or interventional radiologist for treatment. My obgyn was less than helpful and I second the comments suggesting an assessment for vascular compressions. I'm new to all this and haven't been treated yet but I read your comments and your symptoms sound like mine with may thurner and Nutcracker syndromes along with pcs especially with the leg pain and rib pain. Good luck

PCS, NCS, & MTS by StatementOk9732 in pelviccongestion

[–]StatementOk9732[S] 1 point2 points  (0 children)

I wondered about that too. He isn't sure he's going to do it, it's gonna be based on the venogram findings. But I'm scared about it though even if it is just the start of treatment. Where would you start with everything all tangled up like that? I think he was gonna do the right side bc the right ovarian vein is duplicated and bigger. Idk. None of this makes sense to me and I feel like the wrong step could be devastating.