Guinea Pig Dropout

Posting this here for those interested and not in any of the facebook groups I wrote it for.  

Hi all,


Apologies in advance for the long post!  This is about as succinct as I could make it.


Many of you know a few of us were “patient models” at a vascular conference in Austin this week.  At our section of the conference we were organized to be scanned via sonogram as education for pelvic vascular issues.  Four “proctors” scanned us and showed rotating groups of 3-5 individuals (which included doctors, sonographers and others) what they should look for, then handed the wand over and each person got a try. 


We’re all still very much processing our experiences, and they were all very different so I’ll let the others speak for themselves, of course.  There’s a lot to share, and I’m sure I can’t retain 80% of what I learned in the one day I participated, but thought I’d try to “brain vomit” up some of my takeaways before I forget.  I’ll cross post on the PCS, MTS and NCS pages.


 1 - There’s a really important difference between Nutcracker “anatomy” and Nutcracker “Syndrome.”  As learning has progressed about NCS, knowledgeable practitioners have moved on from merely noting a narrowed vein and diagnosing the syndrome to measuring pressure gradients to determine whether blood flow is actually impacted.  If you have symptoms of NCS, the preferred method of determining this it to have Doppler ultrasound imaging done to determine if blood is flowing well or poorly through the renal vein. 


 2- I don’t think it can be over-emphasized how much we need to seek out experienced practitioners with these syndromes.  One of the takeaways we all had from this conference is that the person holding the wand makes all the difference.  For example, there was one “proctor” who consistently didn’t see compressions the other proctors (and some of the students) did.  This created some confusion and frustration for some of us, who have already had conflicting imaging. 


3 -“May-Thurner” is out, “Iliac Compression Syndrome” is in.  Apparently the term “May-Thurner” refers to only one type of possible Iliac Vein Compression, so the more generic term is preferred.


4 - Outreach is ongoing.  Sara mentioned that Dr. Meissner “did the rounds” of Gynecologist  conferences and spoke about these conditions.  Sadly, most gynes still aren’t having it.  Thus so many of us have seen gynes who don’t know about vascular pelvic conditions.  I’ve said this many times and will repeat it here:  if your symptoms are being dismissed by a doctor, it is your choice whether to educate them or move on.  Or both.  I have moved on and sent letters months or years later. 


5 - Research is ongoing, albeit at a trickle.  Sara is currently trying to create a longitudinal study following 57 women, but in order to make it “robust” she must take it outside her sphere of bias and all of this takes time.  We definitely need more of Sara.


6 - We ALL exist in echo chambers.  I was humbled to note presenters on this subject whose names I’d never heard.  I spoke with a doctor experienced with pelvic vascular issues who’s on the East Coast and I was completely unfamiliar with, despite researching pretty hard.  Likewise he had never heard of Drs. Scholbach,  Venbrux, or Hong.  He’d also never heard of Sollinger’s work or ideas regarding auto-transplant, loin pain hematuria syndrome, and lidocaine testing, (he thanked me for educating him.)  This is the way Western Medicine works, and one reason we have to work so hard to find effective treatment.  Transplant surgeons don’t go to vascular conferences.  Vascular surgeons don’t typically go to Gynecologist conferences.  Don’t even hope your gastroenterologist, (whose “stuff” is in the same area,) knows the same things your vascular specialist knows.  There’s just  a lot of knowledge to be learned, and Western medicine compartmentalizes so that no one has to know everything. 


In my opinion, at some point I think most of us must tackle the echo chamber problem head on.  If ever there was a time in your life to pause before being treated, this is it.  Naturally we all want our doctors to know everything, and come up with an immediate solution.  We’re hurting, we’re exhausted, we’re  just desperate for our lives back. But I suggest carving out 20 minutes a day, or maybe a few hours every other Friday, or some such program, to educate yourself before taking action on any of these syndromes, particularly if there may be a compression involved.  Read back pages on support groups like this, pull up studies, see several practitioners even if it means investing in private pay care.  It seems to me it’s very easy to take action which will not work out well for us, out of desperation for a quick fix.  Know that even experienced doctors differ on the best action to take, and the order in which to do it.  Each of us is different and these decisions are very personal.  There just isn’t enough viable data out there to make a truly educated decision, therefore ultimately you will have to just take a leap, but an educated leap is far preferable and takes patience.


7- For those who will need more than one procedure, there are some doctors who prefer a “top down” approach (address Nutcracker first) and those who prefer a “bottom up” approach (Andrea will have more info on this.)  I wasn’t there for the detailed discussion, but know there are experienced practitioners who disagree on this matter.


8 - I overheard a woman at the conference say, “I have patients whose marriages are on the line because of these conditions.” 


I have a personal opinion to share on this subject, and please forgive me if is crosses a line for you personally, but I hear many of us struggle with this and need to hear it.  If you are in a relationship with someone who may leave because you can’t have intercourse, they have some work to do.  There are plenty options for sharing love, pleasure and sexual stimulation other than vaginal penetration.  If this is the only way you are showing each other love, then you both have some work to do.  If that work is ongoing and this person still has a foot out the door, they are not worth your precious time on Earth.  That person is not good enough for you.  That person is not courageous enough for you.  You deserve someone who will fight for your pain-free status as hard as you will. 


9 – OK, lastly, my own experience.  So I was the only one of the five of us who seemed to be showing no compressions or even venous reflux at all on sonography on Thursday.   It would seem I may be one of those people who shows Nutcracker “anatomy,” “physiology” or “phenomenon” but not the “syndrome,”  though I still have a teeny bit of residual doubt.  Keep in mind we never did imaging while standing (which is where I’ve showed most pathology in previous scans) until a very little bit at the end for me.  

I entertained many comments that my anatomy is “very pretty.”  I’m still not exactly sure what that means, but I think they meant “dainty,” as in I have very narrow veins.  My ovarian vein, a mere 2mm wide, is now notoriously difficult to even find, so I was great practice for newbies for a while.  I am aware IRs have had difficulty with my jugulars before because they are just freaking teeny.  At one point someone noted possible internal iliac reflux, but I certainly wasn’t “performing” at the level our other friends were ;-) and eventually everybody was crowded around more fascinating subjects, as I had become basically the “normal” control.


One somewhat random note:  I was the only patient model who has not borne children.  Those of us who have been in this for a while know when these things show up in women like me, or men, there’s usually something other than “simple” PCS going on – a connective tissue disease and/or compressions contributing to symptoms.


So toward the end of the day everybody pretty much lost interest in me.  Not that I’m complaining, I was getting pretty tired of people poking around with cold goo on my belly.  But as I sat on the sidelines I reflected on the fact that I was naturally frustrated that I came all this way and wouldn’t go home with any more clarity on my condition.  My past imaging – intravaginal sonogram, sonogram, MRI, IVUS, etc. have all directly conflicted with one another in terms of NCS, MTS and even PCS.   So I completely lack direction as to treatment.


The organizers did make an effort to have each of us have some face time with experienced doctors, and get their opinions.  Of course by the time it came my turn to speak with Dr. Dougherty, someone had absconded with my very well organized paperwork I’d prepared with notes on all my previous imaging.  Since brain fog is one of my big symptoms and I have a LONG list of symptoms, previous imaging and co-diagnoses, I sputtered.  (Note someone was scanning me and 2 other conversations relevant to that were going on within earshot, and as open as I am, answering questions like “in what way *exactly* does intercourse hurt?” is not 100% easy in a public setting.)  After a few minutes the very soft-spoken Dr. Dougherty noted the conflicting imaging, and his suggestion was to have Dr. Rosenblatt (who practices at Yale in New Haven, CT) take a 2nd look at my IVUS. 


A couple hours later, near the end of the day I noted someone calling Dr. Rosenblatt by name, and boldly introduced myself and mentioned that Dr. Dougherty had suggested he take a look at my IVUS.  He came over and sat down with me.  By this time I’d brought all my imaging reports (and my condensed self-made summary) back up on my laptop. 

Takeaway for others: I can’t tell you how handy it is to be super organized with this stuff and have it at hand within seconds, because there is never enough time in any clinical setting, and in this case I was aware this person was under absolutely no obligation to spend time with me, having come over from another area of the conference and basically doing a favor, so I really felt pressure to not waste his time. 

To my surprise, after hearing my 2-minute summary (which I’d gotten better at by that time of the day) he wanted to know if I’d been tested for Lyme.  I have a folder of blood work inside my medical records folder and was able to bring some Babesia testing up pretty quickly.  Being based in CT (where Lyme disease was named, after Lyme, CT) I’m sure Dr. R has more than average awareness of the disease.  I explained that in addition to testing high at one point for Babesia, a Lyme co-infection, I’ve also lived in Bali and West Africa, so who knows what kinds of parasites and heretofore un-named critters I’ve picked up over the years.  He noted that my testing wasn’t done by the only lab he trusts in California, and suggested I send some blood to them even if I have to private pay – IgeneX.  So, note to self.  We also discussed EDS, my pelvic symptoms and other things.


In a few minutes he looked very intense, asked me to stand up, picked up the sonogram wand and (I swear without moving a millimeter) went right to this one spot in my left inguinal area.  I’m a little unclear here – seems like he was pretty sure he saw something, then moved to the right and didn’t see what he was looking for there, then back to the left.  He put the wand down and made his proclamation: he thinks I have a “Peri-uterine vascular malformation.” 


I’m still a bit unclear about the details on this, but it seems to be a diagnosis of exclusion for him.  I have certain very specific symptoms of pelvic vascular pathology, but reflux and compressions aren’t showing up on me in the same way they are on the others.  I asked if there’s another name and he said there isn’t, it’s just a thing with a generic name. 


He added that the good news is it’s treatable by sclerosing the malformation.  The bad news is that it has a high rate of recurrence.  I asked if he thought EDS may exacerbate rate of recurrence and he said unfortunately yes, probably.  The other bad news is the way he approaches this vein is intravaginally via sonogram with a needle (do I remember this correctly?  Sheesh.)  I looked him deliberately in the eye and said, “I will be completely out on anesthesia for this if we do this, right?” and he thankfully said, “Yes.”


Dr. R. wants me to have a venogram to confirm said anomaly.  I explained that I have Medicaid in NY and can only see docs in NY if I want to be covered, and there’s a narrow range of those who take Medicaid even in the state.  He suggested I see Dr. Khilnani, was was also at the conference and practices in NY.  He gave me his email address and we agreed I’d send my imaging for a 2nd look and coordinate with Khilnai for a venogram.


I called Khilnani’s office and of course he doesn’t take my insurance, but one of his associates in his office does, so I emailed Dr. Rosenblatt and we are discussing.


Dr. Rosenblatt spent maybe 20 + minutes with me total, staying after the conference had ended to speak with me, which I really appreciated.  Even more appreciated was his empathy for my situation; he said, “You’ve endured a lot and I’ve very sorry for all you’ve been through.”  I know how hard it can be to pull out empathy when you’re talking about this stuff all day, every day, and at the end of the day, and well it nearly brought me to tears.  We’ve all been told we’re just not strong enough, and it was just really nice to hear that from someone who really didn’t have to be there or say anything.


So that’s where it is at this moment. It was pretty intense.  I learned a lot.  I think others learned from me, too.  I recommend it.  But plan your rest afterwards!  We’re all a bit sore and a maybe bit more cognitively and emotionally overwhelmed. 


I’m grateful to everyone involved, especially Sara S, and my other fellow scan-ees.  It was really great to meet them all as real, 3-dimensional people, even have dinner with some and process not just the conference but this whole life-with-little-understood health experiences with others in person. What an amazing, smart, forward-thinking, compassonate group of people.                                  Thank you, thank you all.


Peace out,  Niki

Guinea Pig

Photos by Emory Collinson        © Niki Naeve 2015