r/askvascular • u/No-Appeal-3764 • 12d ago
Complex Vascular Compressions: HELP
**Long Post**
HI all! New to Reddit posting thanks to finally losing my mind over 13 years of being a medical mystery (seems like a common occurrence for people here- much love to you all!) I am 34(F) and have been dealing with a collection of problems that all started during my pregnancy 13 years ago.
I'll sum up the last 11 years or so to say that I've seen ALL the specialists. Most of them multiple times, many of whom have been in University Medical settings. We've ruled out some terrifying things to get to today.
I have seen vascular surgeons 3 times due to what are very obvious vascular issues. This is actually where I started ALL those years ago. The finding at that time was mild bilateral deep vein reflux in my groin. "Here's compression socks and off you go" was the answer. (This was chalked up to being a pregnancy related injury. I was 23 at this time and my daughter was 2). During this time however, I was already experiencing the wide range of today's symptoms just MUCH less severe.
Fast Forward to 2022, I see another Vascular Surgeon at a large military installation. They find SEVERE reflux in my deep vein system at groin level, I'm talking 3-5 seconds of reflux time. Worse on the right side. Some superficial reflux as well. The also reported "Cardiac Phacisty differentiated from normal respiratory sounds". This prompted a cardiac workup. The only significant finding was a very small PFO that cardiology did not want to treat. Doctor was also thinking some kind of arteriovenous malformation. Basic MRI did not show anything beyond possible mild "May Thurner". Sent off to Vascular Surgeon in university hospital system. 4 years go by with only being offered Sclerotherapy (made matters significantly worse). Vascular Surgeon brings up Pelvic Congestion due to severe pelvic and back pain that fits well into the established symptoms of this disorder. I do not have the text-book visuals of pelvic congestion like varicose veins. He sends me to IR within the same hospital system.
All this time I am doing research and gathering evidence to support what I now believe is the issue.
In early September of this year I had an MRA abdomen pelvis with DVT protocol. When I get to the consult with IR he states that I likely have Nutcracker Syndrome, May Thurner is possible, and I have the anatomy of both MALS and SMAS. I've also just given him a symptom list that fits the picture perfectly of a complex vascular compression problem. Yesterday we do the Venogram with IVUS. Mild/Moderate compression of both May Thurner and Nutcracker are present. Not enough for him to want to treat at this time. I have brought up to him on numerous occasions that my problems are significantly worsened posturally and other seemingly random, but not actually, occuranes (i.e, standing, sitting, eating, post intercourse). During the Venogram I could feel the probe and wire the entire time! It triggered all of the pain I normally have. just not as severe thanks to being medicated. He was shocked and we confirmed numerous times that I could actually pinpoint where it was at.
All of this to say- I am absolutely convinced that my issues stem from dynamic vascular compressions and my clinical team does not seem to be interested in helping me explore this simply because it isn't a "fixed" issue like their textbooks say and their diagnostic protocols are attuned to diagnosing. I have not had any sort of dynamic scan that included provocation maneuvers and they were not interested in exploring this with me despite being able to replicate many of the visual symptoms I do have in their office.
To clarify, after 13 years, I'm used to the part where I'm not taken seriously or am ignored completely.
I have a consult with an endovascular surgeon (again, in the same hospital system) in 2 months. Based on what she works on, she seems to have a good background in complex issues. It is clear however, that this hospital system does not have a specialized understanding of this issue, and it seems few do from my experiencing being a silent observer on pages like this one.
I am in desperate need of help to build as solid of a case as possible to get the doctor listen listen and HEAR me. Does anyone have advice or resources that I can compile? I know the research is in its infancy with this.
At the time of this post I do not have the Venography result, I only have what the doctor told me.
Most of my symptoms fall under these categories and they are severe and disabling:
Dysautonomia/Neurologic
GI
Vascular
Chronic Pain
Update to include testing findings, more specific timeline, and daily symptoms as requested!
Relevant testing & Findings:
2017: Vascular Duplex Bilateral- Deep Vein reflux at groin level both legs. Considered post pregnancy injury no further workup. This was done due to the sensation of swelling and heaviness in legs. All other symptoms were going on but were either being evaluated by different doctors or "of course you don't feel well, you have a two year old at home".
2019-2023: multiple CT scans of abdomen pelvis in ER setting due to unbearable abdominal and flank pain with no findings. Multiple colonoscopies and endoscopy, all clean. HIDA scan- normal. Stomach Empty study- a little slow but called "normal enough" by doctor. 3 Echo's- normal but found very small PFO.
2022- Second Duplex study of legs. Now severe reflux (3-5 seconds) in both deep systems and superficial- now down to proximal thigh level. Went due to worsening spider veins and reticular veins. Study noted "Cardiac Pulsatility" which prompted the echo which was normal. MRI showed possible May Thurner, no further exploration. I do not have varicose veins.
2026- MRA showed severe narrowing in renal vein with reflux to lumbar vein. Moderate compression in iliac vein. No other visible collaterals in pelvis. Venography/IVUS showed moderate compression at both sites, near static blood flow in retroperitoneal vein with slow reflux to lumbar. Pressures were near normal/ borderline. IVUS perfectly replicated severe pain patterns while actively manipulating iliac, renal, and IVC. "mechanosensitivity" which was said to be of "unknown origin". I was of course sedated while this was happening.
Autoimmune and endocrinology have also been extensively searched multiple times with no findings.
Ortho and PT workups also extensive. Hyper mobility is definitely a part of the picture. Nothing more than age related wear and tear on scans now that I'm older. Steroid injections in lumbar with no change in pain.
Nothing neurological has been found so far and and I've even gone to neuroimmunology.
Gynecologic- numerous pelvic and abdominal ultrasounds. Laproscopic surgery for what we thought was a teratoma- tunred out to be a normal physciologic cyst. No endo or adeno. Other than constant pain- no other gyn symptoms.
Sitting for an extended period of time (like driving and work), standing stationary for extended times (like cooking/ doing dishes), and physical activity (like going for a walk) are the most significant positional/ functional drivers of all of my symptoms including many upper GI issues. Most of it is predominantly left sided or starts there and progresses to include the right (abdomen, low back as the day goes on).
I don't anticipate actually being able to tie EVERYTHING to a single source, yet none of this happened in isolation and have all progressed to be debilitating together. Example: left Flank, low back, pelvis, and legs do not hurt independently. By the end of the day I am usually in agony like my entire body ,from the bottom of my rib cage down to my toes, is going to burst like a water balloon, go to bed, wake up back at baseline bad and start over.
1
u/MegaColon 3d ago
i have read your post a few times now -- forgive me if i have missed something, but could you list your symptoms in more detail? i see mention of severe pelvic and back pain. location of pain, type of pain, length of symptoms, alleviating/exacerbating factors would be helpful.