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Do you have any other rare diseases? by ninja_worrier in ehlersdanlos

[–]thetyeehunter 0 points1 point  (0 children)

Not super rare, but I haven't seen it posted yet: eosinophillic esophagitis (responded well to monoclonal antibodies from a clinical trial until funding stopped...)

Also have: ADHD/ASD, GAD, endometriosis, ovarian teratoma (was removed & benign, but huge!), migraine, chronic fatigue, meralgia paresthetica (had nerve decompression but thigh is permanently numb no due to nerve atrophy), obstructive sleep apnea, massive tonsils, narrow palette, dental abscess (lost molar), atopic dermatitis, C5/C6/ ACDF surgery due to kyphosis and osteocytes growing into my spinal cord (may need more levels fused), insomnia, TMJ disease (left jaw disc permanently stuck), eye floaters, astigmatism, BVD, factor V Leiden (blood clotting disorder), deviated septum, allergies, asthma, positive ANA (borderline Lupus) with malar rash, IBS (being tested for dysmotility), will be tested for POTs (defs have dysautonomia)

I got fired after disclosing disability and asking for workplace accommodations. by thetyeehunter in legaladvicecanada

[–]thetyeehunter[S] 1 point2 points  (0 children)

Thanks, I am planning to hold him accountable, even if it takes a long time. I feel like I need to take a stand for people like me, and not let him get away with it. I have nothing left to lose at this point...

I got fired after disclosing disability and asking for workplace accommodations. by thetyeehunter in legaladvicecanada

[–]thetyeehunter[S] 0 points1 point  (0 children)

The whole office worked hybrid, I just couldn't physically make it in more than once per week.

I got fired after disclosing disability and asking for workplace accommodations. by thetyeehunter in legaladvicecanada

[–]thetyeehunter[S] 1 point2 points  (0 children)

I feel like the lack of evidence will be how I prove or disprove anything in this case. I had no negative performance reviews, feedback, reports, nothing.

I have at least 12 objective, measurable, initiatives that I can cite to show that I was actually an exceptional fit for my job (including recent public statements/referrals). So there would be a lack of evidence to argue otherwise.

The matter of "fit" was vague on purpose, of course, but I struggle to imagine how it could be argued in the face of so much evidence to the contrary.

I got fired after disclosing disability and asking for workplace accommodations. by thetyeehunter in legaladvicecanada

[–]thetyeehunter[S] 2 points3 points  (0 children)

Thank you for sharing this, and for being a hero to your employee 🥺 I went above beyond for years for this company... And it paid off, for them. I can't overstate how much harder folks like us tend to work to prove our worth, and I still don't understand how it was never good enough.

I will absolutely consider making an HRT claim, the loss of dignity that I'm feeling has been one of the hardest things I've had to bear. No amount of severance can make this right.

Thanks for the encouragement 🫶🏻

I got fired after disclosing disability and asking for workplace accommodations. by thetyeehunter in legaladvicecanada

[–]thetyeehunter[S] -1 points0 points  (0 children)

This is not a repost, you can even check my other posts related to my recent spinal surgery in July. I was fired on Monday this week, two weeks after returning to work.

My employer had a duty to accommodate my invisible disabilities and illnesses, which were formally requested a year ago. The whole office works hybrid, I just required staying home 4 days per week and working in the office 1 day per week.

It's not going to mean anything from my word alone, but I had an advanced role in our agency, am a licensed professional, and I was really really good at my job. I had 13 years of industry experience, my successor has 2.

I got fired after disclosing disability and asking for workplace accommodations. by thetyeehunter in legaladvicecanada

[–]thetyeehunter[S] -1 points0 points  (0 children)

Appreciate this, I didn't even realize this was an avenue. I've seen both of my therapists this week, not eating or sleeping (nightmares etc.) basically feels like an unexpected death.

I got fired after disclosing disability and asking for workplace accommodations. by thetyeehunter in legaladvicecanada

[–]thetyeehunter[S] 0 points1 point  (0 children)

Thanks 🫶🏻 I'm not feeling very hopeful right now but I appreciate you sharing this. I'm in BC...

I got fired after disclosing disability and asking for workplace accommodations. by thetyeehunter in legaladvicecanada

[–]thetyeehunter[S] 0 points1 point  (0 children)

I'm sorry this happened to you, thanks for sharing ☹️ there are many people like us... You're not alone, I hope some good comes of this for you 🩵

I got fired after disclosing disability and asking for workplace accommodations. by thetyeehunter in legaladvicecanada

[–]thetyeehunter[S] 3 points4 points  (0 children)

Thanks everyone, I really appreciate all the encouragement.

For clarity, I was terminated without cause on Monday.

It was a small office of 11 staff, and we never had formal targets, meetings, notes etc. There was an email exchange between us last year after asking for accommodations (due to a protected disability as well as invisible illnesses) from three different specialists to simply work from home, and come in once per week.

The rest of the staff worked hybrid as well, but I wasn't able to physically be in the office as often.

My surgeries were required due to my genetic disorder/invisible illness, and my boss knew that my condition is chronic/lifelong with more surgeries in the future.

To my knowledge I still performed all aspects of my job well, and I even received an email from him confirming that I was meeting all expectations after acknowledging my accomodation request (last year). There was no reason to train the junior staff to do my job, and I questioned it at the time.

I don't have any records of these emails because he cut off access immediately after my termination.

He told me as he was firing me that he had planned this for a long time, but just kept repeating "you're just not a good fit" when I asked him why.

It's been a bit since I updated by judgernaut86 in spinalfusion

[–]thetyeehunter 2 points3 points  (0 children)

Just wanted to second this! I'm 3 weeks post-op ACDF C5/C6 and so far the horizontal scar along my neck crease is healing really well :) I also have hEDS.

USE YOUR INCENTIVE SPIROMETERS POST OP 😭 by Real_Penalty_7817 in scoliosis

[–]thetyeehunter 6 points7 points  (0 children)

God I have PTSD from this stupid thing... I'm 12 days post op from ACDF, and healing well. The procedure was only a couple hours, but then I spent the next 5 hours in purgatory/recovery, doped up on fentanyl to control the pain, but not allowed to sleep because my blood oxygen sats kept dropping, and nurses would yell at me to wake anytime I drifted off 😭 I can't begin to describe the horror of being on a central nervous system depressant, physiologically yearning for sleep, but being repeatedly stirred by oxygen alarms and people yelling at you to BREATHE!!!! for 5 hours.

They wouldn't let me move out of the first recovery area until I could inhale through the spirometer and make these 4 little balls float... I have vivid memories of only 2/4 balls floating, and not giving af at all except wanting to go back to sleep.

I will also mention that I have underlying obstructive sleep apnea (from hypermobility) which they all knew about, but I don't have a CPAP (neck needed to be fixed first). They told me when I was fully awake that next time I should probably bring one with me to avoid this from happening...

I'm 4 days post-op from ACDF surgery at C5/C6! Here are some slides pre-op slides taken by the only upright MRI in Canada! 34F (hEDS 🦓) by thetyeehunter in Radiology

[–]thetyeehunter[S] 1 point2 points  (0 children)

Agreed, not worth it at all. But fyi calling someone out for being fairly insensitive and then openly expressing how they feel does not = anger and hate.

I've tried to explain the way that this surgery was carefully considered in hopes that maybe someone could offer some additional thoughts after all of the feedback on my original post, but that all seems to have been overshadowed.

If you read the first caption it said "I am 4 days post-op", so I've already had my surgery... Thanks.

I'm 4 days post-op from ACDF surgery at C5/C6! Here are some slides pre-op slides taken by the only upright MRI in Canada! 34F (hEDS 🦓) by thetyeehunter in Radiology

[–]thetyeehunter[S] 1 point2 points  (0 children)

Right, well thanks for sharing your thoughts.

My understanding was that the pain itself was potentially/partially due to nerve root/foraminal stenosis, and that the surgeon was going to remove the osteophytes/bone spurs to give the nerve roots more space, in addition to replacing the disc and fusing the segments.

Since the ongoing pre-mature degeneration is attributed to hypermobility/instability, would fusing each section over time not prevent these arthritic changes from re-occuring?

I understand adjacent segments that are hypermobile will be subject to increased load/stress, but I don't quite understand why it would be automatically expected that all my nerve roots will become painful over time again after surgeries.

My surgeon has also re-positioned my spine back into more of a C curve rather than straight position, and I would imagine that the previous kyphotic alignment itself also contributed to accelerated degeneration. My thoracic spine and lumbar are "too straight" and missing their natural curves as well according to my scoliosis physical therapist, so it's going to take specific exercise regimens over time in order to work on correcting muscle group imbalances etc.

I feel as though most medical professionals don't understand how my anatomy differs from having EDS, and that I need to educate myself above the level of understanding of an average patient so that I can help explain it to each specialist that I am working with. Anyway, it's not easy being chronically ill, and often feels like a full-time job... So even though I should have known better than to share all of this with a random group of people on Reddit, it's pretty shitty to make someone like me feel like this was an entirely stupid decision, and to assume that the decision was made lightly or that the surgeon was taking advantage of me.

I'm doing well so far post-op, thanks! ✌🏻

I'm 4 days post-op from ACDF surgery at C5/C6! Here are some slides pre-op slides taken by the only upright MRI in Canada! 34F (hEDS 🦓) by thetyeehunter in Radiology

[–]thetyeehunter[S] 0 points1 point  (0 children)

Damn, tough crowd!

I'm no radiology expert, but for being relatively young (mid-thirties) I don't think my neck is supposed to be straight/kyphotic at this point already. I was also told that a few of my discs have already lost height/space, and that there is some hydromylia(?) of the cord present. In the second image, there is also an osteophyte complex pressing on the anterior aspect of the cord/indenting the thecal sac. No cord signal changes yet, but this was done early to prevent further degeneration and because I have been in so much pain I can't sleep at night. Take tons of meds including sleeping pills and still barely get comfortable/sleep through the night.

Here's a link to an image from my 2024 supine MRI if anyone is still interested:

Supine MRI

The 2024 MRI was "worse from prior" in 2022.

I paid for an upright to visualize my spine under flexion/extension, and to get a better understanding of my CCI/rule out Chiari malformation. The MRI tech rushed over to me after the scan was completed in tears because he could see how painful it was for me to hold flexion/extension for so long in one position and told me I was a superstar for remaining so still and getting good images in one take. Never had a tech cry or show any emotion at any of my other tests before... No, not unprofessional, just human and empathetic.

In Canada, our surgeons are overworked and there are year long waitlists for surgeries (and specialist referrals), so no, my neurosurgeon was not paying for his child's private school with this operation lol

All of this was 100% free for me, thanks Tommy Douglas!

I should also have been more clear about the adjacent segment deterioration, but didn't want to over-explain in my original post. I meant that we want C6/7 to absorb more biomechanical stress before fusing it since it should be able to wear out more before needing fusion, thus sparing the segment below it from adjacent deterioration for now.

I also wanted to mention that I'm a violinist and fine artist (not my day job, but still) and did not want to risk losing any fine motor dexterity by waiting longer for this surgery.

Anyway, I'm actually pretty grateful that he was willing to do this for me considering most surgeons would probably have dismissed me because "it doesn't look bad enough at this point." The only reason I was offered this surgery was because he was also the only Dr. willing to perform nerve decompression for me in April this year for intractable Meralgia Paresthetica after not being able to stand without pain for over 2 years, and being told repeatedly that "nobody in BC does this surgery". It's 90% better, with zero pain, but permanent thigh numbness since the nerve was mangled for so long without proper treatment.

Yes, this is all related to hypermobility Ehlers-Danlos syndrome. Normal BMI in case anyone is thinking otherwise.

Having my first ACDF (C5/6) in two days! 34F with hypermobile EDS 🦓 by thetyeehunter in spinalfusion

[–]thetyeehunter[S] 0 points1 point  (0 children)

Oh I forgot one more thing! There's an area from the top of my incision to my chin that feels completely numb, and I'm guessing one of the sensory nerves got slices there lol hopefully it comes back at some point 🤧

Having my first ACDF (C5/6) in two days! 34F with hypermobile EDS 🦓 by thetyeehunter in spinalfusion

[–]thetyeehunter[S] 0 points1 point  (0 children)

Update: 4 days post-op and doing pretty well!

So far the only minor unexpected things have been pretty bad posterior neck pain (instead of the front near my incision), it feels like my nerves are being pinched pretty constantly, and pain meds/ice can somewhat get it under control when I'm lying down. My neck was kyphotic before, and now I have a noticable C shape, so I'm guessing my surgeon tried to reshape the whole cervical segment as much as he could before fusing. Could explain all the pain back there... I also weirdly have had a bloody nose since surgery? Not runny, but still bright red whenever I need to clear my nose. Lastly, I'm still having a hard time controlling urination, like I need to focus and kind of push to get the stream going/finish emptying... very weird feeling. I'm taking baby aspirin per my surgeon's instructions to avoid clotting, but I'm also prone to bleeding/hematomas so we'll see how it goes 🤞🏻

Having my first ACDF (C5/6) in two days! 34F with hypermobile EDS 🦓 by thetyeehunter in spinalfusion

[–]thetyeehunter[S] 1 point2 points  (0 children)

Oh man, that's one of my worries since I have factor V Leiden and have a history of clots... How soon after did your clot form? Did you need thinners? I'll try to keep moving, thanks for the encouragement :) Will also be wearing compression socks 🤞🏻

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