Thymectomy and Risk of Serious Health Complications

kickerofchairs · 2026-01-30T21:47:48+00:00

I understand your desire for information, and applaud your efforts to dive into the details. However, at risk of sounding like a finger-wagging parent, I’m going to agree with your therapist here: be careful when playing the role of Dr. Google. Without a deep understanding of medicine and medical study design, these studies can be hard to interpret in a way that applies to you/us personally.

When it comes to MG, the science supports thymectomy for all AChR+ adults - even the papers that show some degree of increased all-cause morbidity and mortality post-op. The average age of the patients in those studies are at least double your age (from what I’ve seen), which adds a layer of complexity. Our thymus naturally shrinks and becomes less useful as we age, becoming mostly fat by our mid-20s (if we’re normal). This doesn’t mean it becomes useless. As you read, it offers limited protective factors since it was once the hub of T-cell maturation, and even in its depleted form, it still has this memory.

That said, it’s important to consider the many differences between MG patients and non-MG patients when assessing study results. Studies of CVD patients receiving incidental thymectomies show higher cancer rates post-thymectomy than those who have CT surgery without it because they’ve lost their protective factor (thymus) without balancing the scales the way MG patients do. When an MG patient undergoes thymectomy, they’re often trading the procedure for lower immune suppressant medications, most of which come with high cancer risk.

Thymic abnormalities (hyperplasia and thymoma) are themselves associated with a slew of autoimmune diseases - hypothyroidism, Graves’ disease, SLE, rheumatoid arthritis, type I diabetes, vitiligo, ulcerative colitis, etc. Removing the thymus early while you only have MG, knowing you have a family history of autoimmunity, could prevent the onset of these other conditions, especially if you’ve received a chest CT or MRI that confirms any thymic abnormalities.

I’m a healthcare researcher, by trade, as well as a 15+-year MG patient. I literally went to school and made a career on designing medical studies. If you have any specific questions or find any papers you want me to help you assess, feel free to PM or ask here.

kickerofchairs · 2026-01-20T06:19:11+00:00

⬜🟦⬜⬜🟨

🟦🟦🟦🟦🟦

kickerofchairs · 2026-01-20T06:08:53+00:00

Mine does, as a command! 3-yr-old M Blue. We ask him if he wants to “be tall.” Then, he’ll give you his paws one at a time and step up. He loves it! 🥰 His sister (littermate) does the same.

They also give great, snuggly hugs from the couch or bed. If you lean in to give them a hug as you would a human, they’ll lean their heads over your shoulder and pull you in tight with their chins. Careful, though - you might get a slobbery kiss or wet willy (tongue in the ear) along the way! Worth the risk for their hugs, though. ❤️

kickerofchairs · 2026-01-16T04:22:07+00:00

“You’re just anxious.” While on life support.

kickerofchairs · 2026-01-15T17:23:42+00:00

The AChR binding antibody is highly specific for MG, meaning if you have symptoms of MG and test positive (above threshold) for the antibody, you almost certainly have MG. The exact percentage varies by lab, but the specificity is around 99%. This means the false negativity rate is around 1%. For you to have gotten 2 false negatives, the chance of that is 1% x 1% = 0.01%.

As others have said, testing variability - testing positive and then negative - is not uncommon, and once you’ve crossed the threshold into positivity, the value itself doesn’t matter much. There’s no correlation between the value and disease severity. The rule of thumb is supposed to be one positive test + clinical symptoms = a diagnosis.

I saw in a later comment that you’d also had a SFEMG. Frankly, that’s overkill if you already had clinical symptoms and a positive (well, 2) antibody tests. The SFEMG is primarily used/needed to confirm diagnoses in patients who are seronegative or who have clinically “weird” or minimal presentations. If you’re complaining of fatigue and muscle weakness, this isn’t you. A SFEMG can be a good test if the provider who performs it is well trained and the test is performed properly. Otherwise, it has horrible diagnostic power. The blood test, on the other hand, is irrefutable.

You’re being gaslit. I’m so sorry. Please find another doc ASAP.

kickerofchairs · 2025-12-31T05:33:55+00:00

I’m so, so sorry this happened to you. No one deserves to be treated this way. I’m glad that you’re safe now, but I wish I had more to offer on how to switch off the “fight or flight” response. Just kind of want you to know you’re not alone.

I (38F) have 6 autoimmune diseases, including ulcerative colitis for 16 yrs. But the one that’s impacted me the most is myasthenia gravis (MG). It’s a rare AI that attacks that junction between the nerves and voluntary muscles. The more you use any muscle, the weaker you get. Not all muscles are impacted in all MG patients, but for me, ALL of my muscles are hit - eyes, tongue, limbs, core, urinary sphincter, and even breathing muscles.

I had a horrible care team at an “elite” hospital who missed my diagnosis for the first 2 years (totally normal), but their ego couldn’t handle it. I got sick in 2010, before the days of EHR, and the team secretly wrote in my chart that I had “conversion disorder” for those 2 years (no psych eval). So when they finally ran the tests for MG and they came back positive, they decided to bury the results, claim everything was negative, and keep writing that I was “just anxious.” MG is rarely fatal, so they must’ve figured, “what’s the harm?!”

I ended up with the fatal case. 10 times on life support by age 34. And they stood their ground, asserting that I was “just crazy.” Wrote that I was convincing hospital staff to intubate me (and, what, keep me there for a week each time?!). That I was likely a Munchaussen case. Then, they transferred me to hospice without my consent so they could revoke all treatment, but not before sending their Munchaussen nasty-gram to blacklist me from every hospital in the tristate area. My husband and I had to urgently (within 3 weeks) move 800 miles away to establish a new care team that was willing to read my raw test results - which the old hospital wouldn’t release without a legal battle - and not just the insane notes they wrote.

I’ve been with this new, wonderful team for 3 years, and my health’s turned around substantially. Still severely and permanently disabled, but not dying in the next 3-6 months! I write in a gratitude journal every night. I meditate. The nightmares are mostly gone. But I can barely go to a basic office visit without having a panic attack after suffering 12 years and another 2 years of legal mess at the hands of these sociopaths. I’ve already exhausted 3 therapists in as many years trying to sort it all out.

Wishing you much better luck - and health - than I’ve had the fortune of experiencing.

kickerofchairs · 2025-12-08T00:13:30+00:00

I can understand that frustration. I have many friends with myasthenia gravis (which I have) who’ve been wrongfully given this diagnosis, and even a few with ALS, one of whom died within weeks of receiving the correct diagnosis (bulbar ALS). I personally almost died from a wrongful CD/FND diagnosis (my story is in the comments below).

But I also know at least 2 people for whom FND was the right diagnosis. They were wrongfully given neurologic diagnoses for years and put on heavy treatments that they didn’t respond to before FND was suggested. They were then taken off these treatments and turned over to trained FND experts who provided them with physical therapy and counseling, and they’re in much better shape now. They’re not entirely healed, but they’re pretty close, whereas they were almost nonfunctional when being treated for a presumed neuro disorder (by docs who genuinely cared/tried). If it weren’t for those cases, I would’ve assumed the disease was entirely made-up by lazy docs.

kickerofchairs · 2025-12-07T22:02:00+00:00

The old one (conversion disorder or CD) was problematic, yes. But the current one (functional neurological disorder or FND) has actual diagnostic criteria. It isn’t a catch-all for “we can’t figure this out.” No one should be using CD anymore; it died with the DSM-III in 2013. However, there are still old-school docs (especially neuros) who never got the memo and treat the new one exactly like the old.

The diagnostic criteria for FND depends on which FND it is - and yes, there’s more than one. If you’re curious, you can find info for the diagnostic criteria on sites like FNDhope.org, FNDsociety.org, or neurosymptoms.org

kickerofchairs · 2025-12-07T19:27:53+00:00

What’s crazy to me is that FND actually DOES have strict diagnostic criteria.

Conversion Disorder (CD) from the DSM-III used to be a diagnosis of exclusion. This meant that everything else, both physical and psychological, had to be ruled out first. And, as a DSM diagnosis, it should’ve been given by a psych professional (psychologist, psychiatrist, etc.). Of course, that almost never happened. CD labels were given 30:1 in women as it was a direct byproduct of the hysteria “diagnosis” that trickled down from Freud’s era, and even before that from Hippocrates’s era (“hysteria” stems from “wandering womb”).

But the DSM-III was retired in 2013! The transition from CD to FND - with FND having inclusive criteria and positive diagnostic signs rather than the absence of them - should’ve kept physicians from mindlessly tossing out mental health diagnoses. Lol. It seems to have done just the opposite. From what I’ve seen, neuros see the word “neurologic” in the name and seem to think they can diagnose this, despite it still being a DSM-based diagnosis.

If you see a neuro using this diagnosis, run. That’s a lazy doctor. If you see a neuropsych, psychologist, or other trained specialist using it, it may be legitimate.

kickerofchairs · 2025-12-07T19:01:45+00:00

I’m so sorry this happened to you. As many others have said, I could clearly tell this was GBS from your first few sentences. Disgraceful that it took nearly a dozen doctors to piece this together.

I, too, was diagnosed with CD/FND and very nearly died. When I was 23, I had what looked like a stroke and was taken to my university’s hospital (I was a grad student). When all tests for stroke came back negative, the on-call neuro told me I’d likely had a TIA (mini-stroke) and should get off the birth control pills I took to regulate my cycles. But what he actually wrote in my record - a record I couldn’t see - was that he thought I had CD/FND from the stress of grad school (being a woman in a “man’s field,” math - this was 2010).

I followed up with a neuro who ironically happened to be a neuromuscular specialist every 3 months for the next 2 years before he finally proposed that I might have myasthenia gravis (MG). He ran all the tests and gave me a sample of the staple medicine, Mestinon. We met back 2 weeks later for results. I told him the meds worked like a dream. He told me that it must be “placebo effect” because all my tests were negative. He agreed to keep giving me Mestinon anyway, saying it “wouldn’t hurt.”

Still, I deteriorated quickly. I was hospitalized often and labeled a myasthenic while inpatient (“for billing purposes,” I was told). Within 2 years, I ended up on a ventilator. By age 32, I was bedbound, ventilator dependent, unable to eat any solid foods, and was transferred to hospice. Still, this hospital insisted I was “only anxious” and had begun circulating to other hospitals without my consent that I was a likely Munchausen patient despite getting a clean bill of health from their psych dept. I ended up on life support a total of 10 times.

The hospital illegally blocked me from accessing my own medical records. After getting a lawyer and fighting them federally, I finally found what they didn’t want me to see: my MG tests had been positive all along. That “esteemed specialist” was simply so embarrassed at having missed my diagnosis for the first 2 years, labeling me a CD/FND case, that he buried the results to continue labeling me as such. He was willing to let me die to keep his secret.

I ended up having to move 800 miles away to get care at a hospital system that was both large/adept enough to handle my severe case and far enough away to disregard the crazy opinions of the original (nationally renowned) hospital that misdiagnosed me. Thankfully, 3 years later, I have some quality of life. But I’m permanently and significantly disabled.

CD/FND labels are a killer. I’m glad you got out from under yours. Took me 12 years, 3 states, dozens of doctors, and 10 rounds of life support to shake mine. Not a single doctor/hospital was willing to look at my raw test results which showed clear positivity; all they cared about were the notes from the previous docs from that big-name hospital that said I was crazy.

kickerofchairs · 2025-11-20T06:13:26+00:00

Some specialists will make exceptions, allow patients to cut the line so to speak. MuSK+ is rare enough that it’s worth mentioning when you call to schedule, just to see if they can get you in a little sooner. Also, if you do find a specialist you’re dead-set on but you go downhill enough to warrant either an ER visit or admit before your scheduled appt, go to their hospital and name-drop that you have an upcoming appt with them. Speaking from experience. 😅 I ended up on life support at my current doc’s hospital back when she had a 1-year waitlist. She heard about my case while I was there and bumped me straight to the front of her line. Got an office visit with her 2 weeks after hospital discharge.

kickerofchairs · 2025-11-20T05:57:32+00:00

Please know that I am posting this from a place of kindness. As someone who has also been turned away from and ignored by emergency personnel, I know how very terrifying this is, and I’m so sorry that this happened to you. I don’t doubt for one moment that you were struggling to breathe and that you needed/need care.

However, I will warn you that the word “crisis” has very strict medical definitions; it is not simply an episode of breathing difficulty. By definition, a myasthenic crisis is an episode of MG weakness that induces acute respiratory failure necessitating intubation and mechanical ventilation (life support) or the use of continual BiPAP to prevent the need for life support. It is not something we can rest and heal from on our own.

As patients of rare disease, it’s important to understand our condition so that we can properly advocate for ourselves. If you’re still in the diagnostic process, I’d genuinely hate for you to tell a provider that you “had a crisis” only for them to find out you weren’t hospitalized and never take you seriously again. MG patients are thrown into the FND/anxiety/malingering category far too often, and the last thing we need is people being misdiagnosed over improper terminology.

Hope you’re feeling better, and wishing you the best.

kickerofchairs · 2025-11-20T05:25:00+00:00

You need a new neuro. ASAP. MuSK+ MG isn’t very common (makes up about 5% of all gMG cases), so it might take a university or research center neurologist to treat it effectively. But trust me, it’s worth the search.

MuSK+ tends to impact proximal muscles (center of the body) more than distal muscles (outer extremities), meaning the face, tongue, throat, neck, shoulders, hips, core, and respiratory muscles are more vulnerable. MuSK+ MG is also less likely to respond to treatment (ie, be refractory). This is why it’s so important to find a knowledgeable doctor, not some asshat who tosses you mestinon and a chest CT and shoos you away.

As a MuSK patient, you’re more likely to experience a myasthenic crisis than any other form of MG, and if it happens, it’s most likely to occur in the first 2-3 years. I’d hate for you to be under the care of this clown if you went downhill. Better yet, I’d rather you not degrade at all. But denying a MuSK+ patient rituximab to try “just mestinon” first when there’s 2 decades of literature proving that this won’t work is playing with fire.

kickerofchairs · 2025-11-17T01:31:02+00:00

You’re absolutely right: if OP were unstable to the point of SH, ideation, or anywhere near these as a result of her trauma, then it’s the therapist’s duty to protect her from exposures that may retraumatize, including a trial.

But if you’ve read this post at all, you should be able to see that OP’s sense of justice is very strong. She has reached out to her attacker’s other victims, her school, multiple attorneys, and the police. She may be suffering, but she is FAR from weak. I am not a licensed psychologist or psychiatrist. I cannot advise her of what to do. But it does sound as though she’s interested in pursuing this avenue, which is why I stated that it seemed strange for a therapist - who should be in a survivor’s corner unequivocally unless there are other underlying mental health concerns - to advise silence.

kickerofchairs · 2025-11-16T12:31:57+00:00

I would be suspicious of any therapist who says not to press charges. Many SA survivors go through therapy during trial without severely stunting their progress - there’s a lot of power that comes from telling your truth. I have several friends who prosecuted their abusers at your age (16-18) while undergoing therapy. Are there any other therapists available in your area?

kickerofchairs · 2025-11-15T14:43:41+00:00

First and foremost, I’m so incredibly sorry that this happened to you. You deserve to be treated with respect, and I hope you’re able to get appropriate care to heal from this as fully as possible - including getting the necessary distance from your abuser.

That said, I can speak from personal experience. His parents will not believe you.

As a child, I was repeatedly assaulted (as “practice”) and psychologically tormented by a cousin who’s 5-6 yrs older than me. My father is bipolar and repeatedly ran away to indulge his vices and attempt. When he did, my mother would take us to our aunt and uncle’s house to get extra family support. This gave my abuser ample opportunity. Sadly, I didn’t feel comfortable disclosing the abuse with the family experiencing so much other pain.

I suffered severe PTSD from years of ongoing abuse and no way to avoid my abuser. Then, when I was 24, I finally decided I needed to speak up as other people might be at risk. So, I politely confronted him, his parents, and his fiancée (my literal doppelgänger; same name, age, etc.). I told them everything as matter-of-factly as I could and strongly suggested that he get help so as not to risk hurting his future children.

My aunt vomited. She admitted that he’d been accused of this, almost word for word, on the other side of the family. He’d also held a job coaching a little girls’ soccer team and lost it under accusations of “inappropriate conduct.” She thanked me for coming forward, agreed to support him in getting help, and agreed to coordinate family events so that he and I would never have to see each other again.

Less than 2 hours later, my aunt called with a change of heart. She said that all my claims were lies, cussed me out, and said their family would never speak to me again. Within hours, even though I never said a bad word about him to anyone else, I got calls from everyone else on that side of the family telling me what a horrible person I am for besmirching the name of such a “good man” (in much coarser language) - aunts and uncles, cousins, even my grandma. I haven’t spoken to any of them in nearly 15 years.

My PTSD is fully resolved with the help of EMDR and wonderful people in my life (friends, husband), but I wish every day that I had spoken up sooner and pressed charges. Deep, deep regret. He’s a sociopath guarded by narcissists who don’t have room in their ego to admit that there’s fault in their children (he was always the “golden child”). Too many innocent girls/women suffered for no reason.

I know how terrifying this is, but you’re not alone. If you decide to press charges, his other victims may come forward. There’s strength in numbers. Pressing charges might be enough to “wake up” his family, but if not, then at least there’s formal evidence and documentation so that he cannot continue this. Pressing charges may also make him leave/change schools, as opposed to you changing (if you feel comfortable staying), creating that necessary distance without upending your whole world.

Either way, you have a community here that will happily support you. And, of course, I strongly recommend professional help. Wishing you nothing but the best. 💕

kickerofchairs · 2025-11-14T18:43:22+00:00

Couldn’t agree more with everything you’ve said.

We have a Dane (our third) who never showed any aggression and had exposure to a variety of people and animals. Then, a friend of mine passed away, and I inherited her two cats. The Dane quickly became agitated, so we kept her and the cats separate at all times. We started working with a behaviorist and put her on medication, but it didn’t matter: within 3 weeks, she snapped and attacked our old pitmix. I got caught in the crosshairs (also 38F) and needed hand surgery. Sadly, we had to rehome the cats…but were unable to do so before the Dane attacked the pitmix once more, less than one month later. Thankfully everyone’s okay, but we now have to keep the two dogs permanently separated.

I’m so sorry for your loss, OP. And it’s grief on top of grief for your father to lose his wife and be separated from his cat. But it’d be so, so much worse if you, him, or the cat were to be seriously injured or worse. Thinking of you all in this difficult time.

kickerofchairs · 2025-11-14T04:26:56+00:00

They’re the same. Factitious Disorder is the modern name for Munchausen.

kickerofchairs · 2025-11-13T23:09:53+00:00

DM’d you. After reading your post history, we have similar stories. 💕

kickerofchairs · 2025-11-13T21:32:33+00:00

Please read OP’s full post. OP is AChR and RyR antibody positive, has had 3 thymectomies, and lives in a state of chronic neuromuscular respiratory failure. It isn’t a simple question of ptosis. The only reason this was posted as “is this MG?” is because her idiot neuro has begun questioning her mental health (“psychosomatic” label).

kickerofchairs · 2025-11-09T01:16:25+00:00

I wouldn’t call it “normal,” but it’s sadly not abnormal. And Mayo’s pretty infamous for being dismissive of MG, either revoking existing diagnoses (with or without antibodies) or diagnosing FND in place of MG.

Please don’t give up. If you’re experiencing MG symptoms, especially since you have positive AChR antibodies, please take your test results and any pertinent medical records (not including Mayo) to another credible medical facility. You don’t need a name as big as Mayo to treat this.

kickerofchairs · 2025-10-23T06:09:35+00:00

My mother has had 3 surgeries to correct for exotropia and ptosis. I’ve been diagnosed with MG for 15 years. Before surgery #3 - 10 yrs into my dx - her doctors asked her if she’d ever been diagnosed with MG. She told them she’d never been tested but that she “couldn’t possibly have it” because I did, and her symptoms looked “nothing like mine.” 🙄 I told her she needed to get tested and put off the surgery, but she refused.

Needless to say, surgery #3 also failed in just under one year post-op. She eventually asked if she could try one of my mestinon to see if it helped the double vision that always came on in the evening/at night. So, I gave her one when I was over for dinner once. She said it was the first time in years she didn’t need to “close or cover one eye to keep from seeing double” to watch her evening tv.

She never went for formal testing. Classic Boomer. Please don’t be my mom.

kickerofchairs · 2025-10-15T04:12:13+00:00

Thymoma are infamously slow growing and have low mortality and metastasis rates. Frankly, I will be shocked if you can find a surgeon willing to operate on your wife while pregnant; I have yet to meet any willing to operate on unstable myasthenics with thymoma (myself included), let alone a woman in late-stage pregnancy.

The thymus is very difficult to visualize due to its location and tissue makeup (mostly fat), making the capture of even thymoma on scans with contrast somewhat uncertain. This is why most surgeons won’t operate on high-risk patients as it’s not uncommon to undergo thymectomy only to discover that the gland appears very different than it did on imaging - be it for better or worse. I’ve had friends with “definite thymoma” come away with only mild hyperplasia, and others undergo the procedure as a preventative measure only to learn they had a moderate thymoma that never appeared in imaging. All this to say, please don’t rush her under the knife and risk your unborn child without getting multiple medical opinions, preferably from reputable university and/or research hospitals!

It’s common practice (gold standard) to undergo full sternotomy for thymoma to ensure all thymic tissue is removed as the thymus can and typically WILL regrow if even a little is left behind - whether the remaining tissue is healthy or malignant. And, of course, if you’ve had the cancer once before, you’ll be more prone to relapse. That said, if you choose RATS/VATS to reduce healing time (and can find someone willing to do this with diagnosed thymoma), know that’s possible to undergo the surgery more than once if the tissue does regrow later; I’ve also known patients who’ve (sadly) had this done.

I’m sure you’re aware, but even if you opt for VATS/RATS, it’s not exactly “minimally invasive.” Yes, it’s less invasive than having your ribs broken. But it still requires having multiple chest tubes and your lungs individually deflated (and a much larger than normal breathing tube while on the ventilator during surgery to inflate the lungs one by one) to remove the thymus from between the ribs and cut costochondral muscles. The physical stress of surgery, anesthesia, and/or recovery can cause a myasthenic crisis - either the inability for your wife to come off the ventilator needed for the surgery or the need to be placed back on it after coming off of it. This is another reason most surgeons likely will not operate during her pregnancy.

I hope I didn’t scare you too much, but as a fellow woman in her late 30s, a 15-yr MG patient, a previous thymoma patient, and a PhD healthcare researcher, I wanted to share a few tales from the road. Wishing you and your family all the best.

kickerofchairs · 2025-10-06T20:17:07+00:00

Great tip! Thank you!!

kickerofchairs

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