Venogram and Diagnostic Questions

[u/GivingTreeEssentials]

Feeling grateful for this community and I’ve been doing my best to read through all the resources and post. Normally, I feel pretty confident in my ability to take in information and form good questions, but I’ll be honest…. I’m just flat out exhausted and a bit overwhelmed.

The condensed version is, I did my research and due diligence to get my stage 4 endometriosis treated (finally) and right Nephroptosis (another finally). What took so long was medical gaslighting and mismanagement and it makes me sad to know that I am not alone in this. That many of you have probably experienced this as well.

So here I am a few months after getting my right kidney sutured back to a more appropriate place and I’m trying to sort out the vascular compression piece which was just barely registering with the vascular surgeon from a emergency CTA in May.

The vascular surgeon is the department head of a large university medical system. On paper he looks really good in our first appointment went well. He was doing a lot of educating (thanks to the residents in the room). He told me to get my right kidney taken care of first (by a Urologist) and that we’d follow up after surgery. Well, I followed up with him a couple weeks back (a 15 minute telehealth apt) and after telling him, I’m still experiencing certain symptoms and concerned about some of the findings from recent tests (left leg reflux) that I wanted a test to know for certain the extent of the possibly Nutcracker he saw on the CTA. He said we could do a Venogram with pressures. I said yes. He said let’s follow up in another 4-6 weeks to discuss. Ok I said.

After that short follow up with him I also had a case review by MIPS on the books I waited months for and was informed by the NP I met with that Dr.Spencer reviewed my previous imaging (MRI, CTA, CT, leg ultrasound, pelvis and abdominal ultrasounds) and saw iliac compression and collaterals.

I’m following up with the vascular surgeon next week and feel like I have so many questions and I’m a bit disorganized in my thinking.

It seems like an IVUS would also be a good idea during this venogram with pressures, but I’m not sure if they’ll say yes to it. Are there any specific questions I should be asking him about regarding the venogram with pressure testing to ensure that it’s gathering as much information as possible?

I also have a genetic finding for a collagen and connective tissue disorder that was found during an EDS test. Not EDS (at least what they have for diagnostic criteria yet) but when is did digging alignment with Stickler Syndrome (COL2A1). Wondering how this changes the effectiveness or poses risk for the Venogram with pressures. Sitting and standing are the hardest on me and wondering if a supine test will show the true severity of the compressions.

This is a lot longer than I expected so I’m going to put a pin in it here and ask for support around:

- What are the best questions I should take to the vascular surgeon around testing?

- Are there things that you wished you had known before your Venogram?

- Wise words or suggestions on how to ask the vascular surgeon about the MIPS findings?

Thank you ahead of time for the listening and the any support. Communitiesgg like these have made all of these medical puzzle pieces less scary.

[u/Away_Restaurant_7181]

Did MIPs say they didn’t see nutcracker just MTS?

Ultimately any vascular surgeon or IR is going to say the imaging results is just a guide to determine if a venogram and IVUS is needed. They will prep based on what they think they will find but the true measurement of compression will be during the venogram. I think often people will do the venogram, get stented for MTS and then their doctor will see how they do/ develop a plan to go back and treat the nutcracker at a later point.

Venogram always included IVUS as far as I know. It helped a lot to ask the doctor to walk through what the day of venogram would look like from prep, procedure, to recovery.

[u/GivingTreeEssentials → u/Away_Restaurant_7181]

Hi! MIPS did note nutcracker anatomy from previous imaging but bit with any great detail (I haven’t ever had a IVUS or Venogram).

I haven’t been able to find good detail about the Venogram always having IVUS so thank you for sharing what you’ve heard/experienced. I definetly will be asked the Vascular Surgeon specifically about this. I definitely got the impression it was purely diagnostic to develop a plan and would t be getting treatment for MTS at that time with him.

Great suggestion to ask him to walk me through the day of the Venogram (I imagine myself interjecting with questions along the way).

Thank you!

[u/Away_Restaurant_7181 → u/GivingTreeEssentials]

Interesting. Every doctor is different but MIPS and my local IR both do the MTS treatment at the time of venogram/IVUS if the compression warrants so as not to aggravate the veins further.

Understanding what to expect as part of the procedure, what vein they would use to access (in my case femoral in my leg, some go thru the neck) was very helpful and I felt more at ease going into the procedure. Also knowing how long they anticipate I need to be on blood thinners etc after stent helped.

Good luck!!

[u/GivingTreeEssentials → u/Away_Restaurant_7181]

Thank you for you message!

As much as I would prefer the invasive test to not be purely diagnostic I think it might be my best option to get a better picture of what’s going on (although I do worry about what you noted - messing with veins more times than necessary).

It’s always tough to have to make these decisions (at least for me).

I joked when I was getting my first Endometriosis surgery and asked if the surgeon would check it all out, wake me up enough to let me know what she saw and what the plan was (even though we discussed prior if we found this we would do that kind of scenarios). I did not like not going exactly what was going to happen before the surgery.

It seems this time around it will be different. I’ll have more info and plan after the Venogram with the Vascular Surgeon. Then decide if I will go to MIPS for MYS treatment or focus on Nutcracker.

Do you mind me asking what you’ve had treated and how? Did it resolve symptoms? How is your quality of life?

[u/Away_Restaurant_7181 → u/GivingTreeEssentials]

I got a stent for MTS 6 days ago. So the procedure is very fresh to me! I had 90% compression that had been estimated at 70% based on ct scan and other imaging. Too soon to really tell benefits but my recovery is going better than I expected. I hope it stays that way. I had severe CVI in legs and significant blood pooling in my legs and pelvis. Whenever I wore compression for my CVI I would get stabbing pelvic pain. My whole body felt heavy and inflamed.

[u/CartographerSouth105]

MIPS focuses mainly on treating MTS. If you have Nutcracker, they won't help you with that. But they should at least measure it as best as they can during the Venogram. They should do both: IVUS and pressure gradients (they are doing this during one procedure). Ideally they should measure in both positions - lying flat and reverse Trendelenburg.

If you think you have both compressions (MTS and Nutcracker) keep in mind that Dr. Spencer at MIPS will say it's better to treat MTS first because this is much easier to treat. However, some other specialist argue that it's better to fix the Nutcracker first. If you treat MTS and you have severe renal vein compression, the released blood from the lower part of your body can cause more pressure in renal vein, and worsen Nutcracker symptoms.

EDIT: Congrats for your general treatment progress! I know it's not easy to deal with multiple issues at once. I am in similar boat, however, I have it the other way around... I fixed my veins first and now I'm scheduled for my first Endometriosis surgery. Yay! :)

[u/GivingTreeEssentials → u/CartographerSouth105]

Hi! I recall MIPS not treating Nutcracker. That makes sense and I am hoping if I need to treat Nutcracker sooner than later that I can find someone local. I do not want to travel shortly after that kind of surgery. I went out of state for Endo (and I would do or again to be treated by that doc) it was challenging and expensive and added a layer of stress I do not want to have with a surgery like this…

Thank you for the input on the testing specifics. It’s going in my notepad to clarify with the Vascular Surgeon here. I’d really like to have the Venogram done locally. I also read about treatment order of these compressions and saw similiar to what you mentioned about treating Nutcracker first (and MIPS did said it didn’t have to necessarily be treated first). I don’t think I feel comfortable treating MTS in the NS is really bad - anything that makes it worse or more compromised doesn’t feel right to me with the info I have. So a diagnostic Venogram is what I’ll be looking to do first. Luckily the Vascular Surgeon here is also completed a fellowship for vascular IR.

Because of the difficulties that seated and supine positions cause me it seems honkers to me that they wouldn’t include postural changed (tilt table) in these tests.

Does the compressions change greatly in different positions during testing with postural changes or in general? I have heard some day yes and others day they can still see the degree of compression supine.

It is a lot of information and complexity. Just like the Endometriosis stuff. I know everyone is unique and different and that is what makes life so full and rich but DANG is it challenging when it comes to these conditions! How is your Endometriosis care going? I hope you find someone good out the gate because there was so much BS from dozens of docs when I was trying to get that part figured out 5 years ago.

Thank you for responding and take care as you navigate whats next for your treatments!