Last November I noticed that the lump in my armpit, which I had previously assumed was a benign lipoma, was not only getting bigger but there appeared to be new ones on top and bottom of it. My worst fear was obviously cancer so I did an ultrasound of it. It was a giant dilated axillary vein with slow flow, which had several focal outpouchings. Still concerned that it could be cancer from a mass blocking the vein in my chest, I did an MRI. The MRI showed subclavian vein compression between my first rib and clavicle, classic Thoracic Outlet Syndrome. Link below for those of you that are unfamiliar with this.
https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
Well I had been noticing more and more shooting pains going down my arm and up my neck well as down my back over the last year but I assumed it had something to do with my offset clavicle and muscle spasms. I had also been getting worse and worse headaches. Not only was there severe narrowing of vein, but there was a giant ballooning aneurysm immediately proximal to it. Pictures below
Well knowing what I know about the syndrome, things were only going to get worse. Eventually that vein will clot, and it could throw a clot to my lung or fuck up my entire arm. And I’m rather attached to my right arm, it’s the important one. So I did a bunch of research and found the “state expert” in Thoracic Outlet Syndrome (TOS) at U of M. It’s actually a pretty rare syndrome so there are not that many doctors which exclusively treat it, only like seven in the country, and I wanted the best. I wasn’t about to take any chances. So I called to make an appointment but they wouldn’t even see me in the clinic until they had a physical copy of my CD in hand (they wouldn’t let me email them files). It was Friday so I hired an Uber driver to deliver the CD for me because I figured it was the fastest way for them to get it. Well they lost it for four hours so I was frantically calling every number to try to find, and was even close to driving over there myself with a new one. By the time they found it the office was closed.
So Monday rolls around and they finally call me to make an appointment but they say the guy is out of town for a week and a half. So I get the first available appointment, but they tell me that he’ll want a Venogram first with endovascular ultrasound to map the vein and assess for damage. That’s an invasive procedure and there are only a handful of hospitals in the area that I know that even have the required technology for it. I called U of M who told me they didn’t have an appointment for several weeks. Well I was panicking because I was afraid that this vein was going to clot off at anytime and cause severe damage to my arm. I frantically called around and pulled some strings with my old hospital who got me in later that week. They did the procedure and saw that the vein was significantly narrowed and went down to nothing with my arm raised. Pictures below
So that sealed the deal for me- I definitely had the syndrome. I definitely didn’t want the required surgery which involves removing your first rib and a bunch of muscles in your neck, But I didn’t see your choice. I wanted to get ahead of this before the vein clotted because once that happens you need to get emergent de-clotting which requires you to lay completely still for 24 hours with a catheter in your arm and then you can’t even get the surgery for another two weeks. You could also cause severe damage your vein and require vein grafting from scarring of the vein. I wanted to get this taken care of as soon as possible because I basically had a ticking time bomb in the arm and I was afraid to do anything with it. The syndrome entails of something called “effort thrombosis” Which basically means when you use it the muscles contract and the vein narrows and that’s when it clots. I was afraid to even wear lead in surgery to protect me from radiation which basically means I couldn’t do a large part of my job. I was trying to get this fixed as soon as possible to avoid lengthy hospital stays and time off work. Also the pain in the arm was getting rapidly worse with numbness going down my arm into my last two fingers whenever I tried to use my arm. I could barely even write with a pencil. All my symptoms directly fit with nerve root compression of my brachial plexus (a group of nerves going into your right arm).
So I finally get to my appointment, and my boss and I are planning on me having to go get surgery right away. After waiting for almost 2 hours at the clinic, filling out probably 20 pages of completely redundant paperwork (also it was very difficult to write with my right hand so I was using my left), in addition to the two weeks I already waited, and after an 11,000$ procedure, the doctor comes in, introduces himself, and without even doing any kind of physical examination just says “good news, you don’t need surgery”. I look at him completely dumbfounded. I was sure I was getting surgery. He told me that some people’s veins compress when they raise their arms and it’s a normal variant, and my veins have probably “been like this forever”. I asked him about my nerve pain and he said it was probably from my old clavicle injury (which happened a year and a half ago) and referred me to physical therapy (which I had already completed 3 months of over a year ago, and my pain- with completely different symptoms- had been a lot better since) . He said I was “very low risk” to clot.
I was so confused. Was this pain and numbness I has been experiencing all in my head? Did I just THINK I was supposed to have those symptoms and that’s why they manifested??? Was it all in my head? Was I crazy???
I walked out of there with my head down, embarrassed, and thinking I might be crazy. So I decided to test it out. I went home and did some yoga, like I used to, and my arm swelled up and turned purple. My friend who is a physical therapist did some basic tests and I had the classic pain and numbness with some basic arm maneuvers she knew to test for TOS, in addition to my arm turning purple.
Now I was just even more confused and scared than ever. I basically felt like I had a ticking time bomb in my arm. According to the “expert” this was all normal and I should be able to resume normal activity. So my options were to either stop using my arm- no exercise and I can’t perform surgeries- or ignore the pain and wait for it to clot so that he’ll do surgery on me and fix my arm and get rid of the debilitating pain. He told me I could go get a second opinion- at the Cleveland clinic. A 3.5 hour drive away.
I spent weeks; hours and hours and hours reading and researching about TOS. I read every article I could find, studied all the different possible causes trying to figure out exactly what caused this and how I could fix it. I looked at my imaging over and over and over, studying every detail. I would stand in front of the mirror and examine all my muscles for symmetry. I went to a should surgeon to see if maybe fixing my old clavicle fracture would solve the problem- but he wasn’t sure, and it would’ve been a 6 week recovery and invasive surgery that turns out would’ve actually made the problem worse. It is such a rare syndrome that most doctors only come across it a handful of times in their entire career. I sent my imaging to probably 10 different doctors- radiology, sports medicine, orthopedics, vascular surgeons- anyone I could possibly think of that might have an answer for me. I could take a huge gamble on the clavicle surgery, I could wait for it to clot, could try Cleveland clinic but was afraid it would be a huge waste of time, or I could just learn to live without my right arm.
It consumed me. It was all I could think about for months, and the pain got worse and worse. I was in emotional and physical agony, and everyone I talked to told me something different. I was going to all these different doctors who were just sending me to other doctors. No one could give me an answer and I was scared all the time. I was doing ultrasounds on my arm every single day. Then one day I looked in the mirror and I saw this:
I had a giant ballooning external jugular vein in my neck- and that DEFINITELY wasn’t “always like that”. That means it WAS getting worse- and it wasn’t just all in my head. I sent pictures to the “expert” at U of M of that vein in neck, and this picture, that happened when I tried to do yoga:
I got a response back from his nurse that just said that he had nothing to offer me because he “doesn’t do surgery before it clots”. She again said I could go to the Cleveland clinic for a second opinion. My boss called him and was able to talk to him directly (while I wasn’t) and had a long conversation with him about it. He told my boss that it was a very invasive surgery that takes 6 hours and is a three month recovery, and a lot of people have chronic pain issues after. He even gave my boss the name of a doctor that does a less invasive approach through the armpit who was in Grand Rapids- which he never told me about. And most importantly, he said he doesn’t do surgery until it clots.
I tried messaging him a few questions on the patient portal about if I should go on blood thinners or if there was any less invasive surgery that could fix the problem and I just got another response back from his nurse saying that “he discussed the results with my referring physician and that I should talk to him”. WHAT. My “referring physician”???? I told them MULTIPLE times that I was my OWN referring physician. My boss only called to try to help because he saw how much pain I was in. I was so incredibly insulted. He had a long talk with my boss about it where as he would barely even speak to me. I knew more about my condition and my imaging then my boss by far.
Then I went back and read his note from my visit and saw this:
They included an entire bullet point about my “behavior”. What the actual fuck. They even went so far as to say I was agitated and “hyperkinetic”. First of all, of course I was agitated and angry! I came to the “expert” and got a ridiculously expensive invasive procedure per his request just to be completely blown off. I told him my veins “weren’t always like that” because I know my own body! I came there expecting answers and left more confused than ever. It felt like he basically didn’t believe me when I told him my symptoms and how debilitating they were, and how they got worse at exactly the same time as my veins got bigger. I wasn’t just “demanding surgery” I just wanted answers! He was supposed to be the EXPERT on this syndrome! And there are DEFINITELY provocative maneuvers that you can do on physical exam to check for TOS- none of which he did. He didn’t even touch me at all let alone do a physical exam. Sure there wasn’t any evidence of vein damage YET and that’s exactly what I was trying to prevent. My goal was to fix this in the least invasive way possible to prevent a much more invasive surgery down the road, as well as alleviate my symptoms and be able to use my arm again. He treated me like I was some dumb young girl that knew nothing about medicine, when ALL of the research I read about this syndrome stated that it was a progressive disease which would only get worse. In fact, there is actually a specific syndrome called “McCleary syndrome” which is when venous TOS presents BEFORE it clots. Link below:
https://pubmed.ncbi.nlm.nih.gov/24334914/And look at that- it’s treated the same way.
I by NO means actually wanted to get my rib removed and undergo a huge surgery. I just wanted the problem fixed as quickly and easily as possible, and I wanted my arm back!! I knew going to PMR for my old clavicle injury would’ve been a giant waste of time and traveling back and forth half way across the country to see another expert would’ve been VERY difficult and time consuming. I just wanted it fixed. So yeah, of COURSE I was angry. I felt completely blow off, disregarded, and frankly insulted. And then after reading that I just became more angry. An entire bullet point on my “behavior”. Seriously? You’re going to criticize me for being upset??? It felt like the intent was to discredit me. Make it look like I was making this up on purpose to try to get surgery. Now why in the hell would anyone possibly think that? Well I’ll tell you why…
The only other doctor I see through the U of M health system is my psychiatrist, the one that HPRP forces me to go to. So my previous problem list there only had “substance abuse” and “adhd” listed. Also, in the giant packet of paperwork they had me fill out before I even saw him they specifically asked about ANY previous recreational drug use and even listed them one by one with check boxes for if I had EVER done each one. It was a yes or no. Doesn’t matter if I tried cocaine one time 10 years ago or if did it multiple times a day- it was just yes or no. They even had the balls to ask if I had EVER been to a 12 step meeting. Now why the hell does any of that matter if I’m there for my arm??? They even had two full pages of questions on “pain Catastrophizing” asking crap like how much “time I spent worrying about being in pain”. I honestly don’t understand why any of that matters when I have an actual physical condition that is significantly effecting my quality of life.
I 100% think that he blew me off because he saw “substance abuse” on my chart. He saw that and automatically discredited me. He immediately assumed that I was overreacting, drug seeking, and exaggerating. He actually even called me “histrionic” in the room – (when she stated in her note that he “pointed out my behavior”- he actually said I was acting histrionic, which is obviously very offensive so of COURSE that made me angry!!!) He basically TOLD me that I was overreacting!!! To my face!!! Who WOULDNT get upset about that?? This is my arm, my job, my life! He was the only “expert” in the state! And he gave me no answers and basically accused me of making the entire thing up. I 100% believe that was because of preconceived notions he had about me, directly caused by my monitoring contract. Yet another great example of how these contracts do more harm than good, and how labeling someone with a substance abuse problem can cause them great harm. It felt like he only believed me after my boss, an older man, confirmed that I was telling the truth. And to call him my “referring physician” was so incredibly insulting. I AM the one who diagnosed myself, who spent hours researching, who knew MY BODY and what wasn’t right. I am a DOCTOR, and a damn good one. I have a list of over 50 cases in just one year where I know I directly saved their life by making an amazing call and finding/diagnosing something other people missed. I stay late hours every single day researching cases and reading so that I do my very best on each and every patient to find what’s wrong and diagnosis it appropriately. I’ve been told by several doctors that I am the “best radiologist they have ever had” and that is because I put in incredible amounts of effort to study every detail and compare it to the published literate to figure out exactly how to help people to the very best of my ability. I always think of the Spider-Man quote- with great power comes great responsibility. I have a very unique and specialized set of skills that very few people have, along with a photographic memory and a great encyclopedia of knowledge, that I work incredibly hard to maintain. I’ve made more life changing diagnoses than I can count and made significant impacts in people’s lives, although most of them have no idea who I am. Radiology definitely has to be one of the most under-appreciated yet critical fields of medicine, and there is a HUGE difference between an average radiologist and a good one. Radiology is an art and a lot of judgement calls, and I’m almost always right. And that’s because I CARE. I put in the extra effort and time and keep learning new things every day so that I can be the best radiologist I can be, and make the biggest impact possible. I work 60-80 hours every week and never get to take breaks. Every day I go home feeling like I’ve just fought in a war, mentally and physically exhausted. Now to be treated like someone who doesn’t know medicine at all, some histrionic crazy little girl, it deeply hurt. I kill myself every day trying to help others, and no one was there to help me when I needed it most.
That’s when I found a clot. Only 3 weeks after this doctor told me I was “low risk to clot” I found one. I was obsessing doing ultrasounds on myself every day just to check, and one finally appeared. I grabbed my boss and had him look too and he agreed, it was real. It was small and behind one of the valves in the aneurysm, but it was definitely there and it was definitely new. A couple days later I found another one behind another valve and in a few of the smaller veins in my neck. And my neck had started to swell up. This is exactly what I was afraid of, and what I knew was going to happen. The vein gets damaged and it starts with small clots that get bigger and bigger until they block the entire arm or go to my lungs or both. I was right, and this proved it.
Our hospital’s vascular surgeon texted me about a mutual patient right at this time, so I thought, hey what the hell, maybe I’ll ask him if he knows anything about what I should do. I sent him the same MRI clip that I included at the beginning of this post. It was 7 seconds long. He immediately texted me back and said- your SCM muscle, clavicular head, is significantly hypertrophied (basically one of the muscles in my neck was way bigger than it should be) and that’s what’s causing the narrowing. He figured out from just a 7 second clip on his phone something I had spent months trying to do. I had shown that same clip to at least 10 other doctors at this point, in addition to the TOS “expert”, and not one person had figured that out. Once he pointed it out it was like a lightbulb finally turned on in my brain, and everything made sense. It was suddenly so obvious that I felt like an idiot.
I had probably read at least 10 different papers on all the different potential causes of TOS at this point, and this was not listed in any of them. I did read that trauma can cause muscle hypertrophy (enlargement) but never seen this specific muscle as a cause. My best guess is that the offset alignment caused the muscle to gradually get bigger and bigger until eventually the vein hit its limit. It probably started with a small clot that dissolved on its own but caused damage to the vein which caused it to scar and narrow, and that’s when everything got suddenly worse. The clot(s) probably caused swelling which was pressing on the nerves nearby. The puzzle was finally solved, and now that I knew exactly what was causing it I could figure out how to fix it.
I discussed it with the vascular surgeon and devised that if this muscle was the cause of all my problems, let’s just cut it out. The standard TOS surgery includes first rib removal and scalenectomy, which is a smaller muscle directly behind this muscle, which turns out was also asymmetrically enlarged. Since the muscles alone are the problem, why cut out a rib if you don’t have to?? When I was researching this I found a VERY small amount of literature on doing a scalenectomy alone without the rib, but which showed equally good results in cases caused by muscle hypertrophy, like mine. This was very very strange to me. Why was this never presented to me as an option by the “expert”? It’s a one hour surgery compared to 6, and only a few week recovery until you’re fully functional compared to over 3 months with the rib. It wasn’t a surgery my surgeon had ever done before, but he had done things very similar for different reasons. At this point I didn’t even care, I just wanted it fixed, and anyone that was willing to try I was down. I don’t think this surgery had ever even been performed at my hospital before. I was explaining it to my own anesthesia staff and OR nurses, who were also my coworkers. I was ready for this to be over.
I woke up from surgery and could instantly feel my fingers again. The pain going down my arm and up my neck and down my back, it was instantly, permanently, and completely gone. It was a flat out miracle. Sure my neck hurt like hell, but I knew it would be temporary. The surgeon came to see me and told me that he could physically SEE the nerves and vein being compressed, and watched them open back up. I was 100% completely right the entire time, about everything. I wasn’t crazy!!!! It wasn’t all in my head!!!! And I finally had my arm back. I owe that surgeon my life. The difference is that he BELIEVED me. He knew me and he knew I wouldn’t be making this up. He took the extra time and care to actually THINK about it for a second and we came up with a SIGNIFICANTLY less invasive way to fix my problem as quickly and easily as possible, which is all I wanted all along. We thought outside of the box and it made a HUGE impact on my life.
My boss called the “expert” at u of m after the surgery to tell him what happened. You know what he said? He said “I’m glad it all worked out. I don’t do that surgery”. You don’t do that surgery??? It’s literally PART of the standard TOS surgery. Why would you remove more than you have to??? It made no sense to either of us. Is this guy just a robot that does exactly the same surgery on every patient no matter what? Even though there are many many different causes? And to “not do surgery before it clots” even when you know the dangers of it clotting? And I still want to know where he came up with me being “low risk to clot” when I developed a clot only 3 WEEKS later!!! Not years, not months, WEEKS. If I wasn’t a radiologist who could ultrasound it every day to check this would have been much much much worse, and who knows how long I would have been in agony. I was back at work 2 weeks later and fully functional within a month, back to yoga and rock climbing. I had to fight for myself every step of the way. I had to figure it out all on my own. It was terrifying, painful, and consumed me for months, but I knew i was right. And I 100% was.
The system failed me, because the system is broken. When you get labeled with something like “substance abuse” it changes your entire life. Everyone treats you differently. People treat you like a untrustworthy criminal and always assume the worst. And it’s even worse when you KNOW that you’re NOT an addict. I KNOW with every fiber of my being that I am in complete control of my own body. I went on pain meds for a week after my surgery and stopped them no problem. But how do you prove you’re not an addict? You can’t prove a negative. My psychiatrist told me in the beginning of my contact that I had to be in it because he “couldn’t prove I WASN’T an addict” – direct quote. How can you prove anyone isn’t an addict?? What about innocent until proven guilty? I told him I would’ve willingly done weekly drug tests for the rest of my career if I didn’t have to be in this contract. If I could have control of my own body back and make my own medical decisions and do things that are LEGAL like drink alcohol or take Sudafed for my allergies or take medications prescribed to me at my own discretion. But no, it’s all about covering their asses. They don’t want to get in trouble if they let me go and I show up to work drunk or something. This isn’t about my best interest, it’s about protecting themselves. I even offered to do a breathalyzer before work every day if they would let me drink on my days off, but they said no to that too. And they do random blood tests for alcohol that go back three weeks. If you actually want to prove that I’m not an addict shouldn’t you allow me to use legal things responsibly on my days off to show that I can be a responsible adult for after the contract is over? Wouldn’t that be a way to actually prove it? But we all know that’s not what this is actually about- it’s about covering their asses. And it’s about control.
So if you learn anything from this, please learn that labels can be dangerous. Yes of course there are people out there who are actually addicts and need a program like this to keep them in line, but a lot of people end up pigeonholed into it who don’t need it or deserve to be there, and it is disastrous. It effects the rest of your life. People will always view you as a “drug addict” and a label like that is almost impossible to escape. And if you are in my position, my best advice is to keep fighting. Don’t let them break you. Stand up for yourself and what you know is true. You know yourself better than anyone else. We can beat this.
For those of you who are wondering why that one image said “figure 4”, well I wrote up a paper on myself that I’m currently trying to get published so other people can learn from it. Now I’m pretty much an expert on TOS too
Silent No More 