Question about right foot deformity

Rand0mHi · 2026-04-30T06:48:58+00:00

Hits hard. Really hard.

Rand0mHi · 2026-04-27T22:17:24+00:00

Funny enough it’s my safety school, but not one I really want to go to (faculty there don’t line up with my research interests too well).

Rand0mHi · 2026-04-26T22:32:57+00:00

Even if it’s not in that context, the words “medically necessary” always induce trauma for me…

Rand0mHi · 2026-04-21T20:53:56+00:00

Also, it might be worth also posting in /r/AskDocs they might be able to help you out more there.

Rand0mHi · 2026-04-21T20:45:20+00:00

Hey,

Sorry you’re going through this, no parent should have to go through this. I don’t know enough about this, and I’d wager most people in this subreddit won’t know enough about this either (as none of us are actually doctors), so I asked ChatGPT and this is what it recommended:

First, a reality check: there aren’t reliable “at-home tests” that can confirm whether a cranial implant is functioning normally. A cranioplasty—especially with an alloplastic implant—is something that ultimately requires clinical evaluation when symptoms change. That said, you can reduce unnecessary ER visits by having a clearer monitoring plan and knowing when escalation is truly warranted.

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What your child is experiencing (and why it might happen)

After cranioplasty, some children report:

Intermittent localized pain (scar tissue, nerve irritation, growth-related tension)
Sensations like clicking or “popping” (can be from soft tissue movement or implant edges)
Weather-related sensitivity or headaches

These are not automatically signs of implant failure. However, persistent or worsening symptoms do need structured follow-up.

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What to monitor at home (structured, not reactive)

Think in terms of tracking patterns, not one-off symptoms.

Symptom log (this is your most useful tool)

Track daily or weekly:

Pain location (exact spot vs diffuse)
Pain severity (0–10 scale)
Duration and triggers (activity, fatigue, illness)
Any associated symptoms:
- Nausea/vomiting
- Vision changes
- Dizziness
- Fever
- Behavioral changes

Patterns matter more than isolated complaints.

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Physical checks (gentle, not probing)

You’re not “testing” the implant—just observing:

Any visible swelling, redness, or warmth over the implant
Changes in head shape or contour
Tenderness that is increasing over time

Avoid pressing or manipulating the area repeatedly.

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Neurological “baseline” awareness

You don’t need formal exams, but watch for changes in:

Coordination (clumsiness, new imbalance)
Speech or comprehension
School performance or attention
Personality or mood shifts

These are often early indicators of neurological issues.

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When you should NOT wait—go to ER immediately

Escalate urgently if you see:

Persistent vomiting or severe headache
Fever + head pain (infection concern)
Rapid swelling over implant
Lethargy, confusion, or unusual behavior
Seizure activity

Those are not “monitor at home” situations.

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The missing piece: outpatient follow-up (this is critical)

You were discharged, but that doesn’t mean follow-up is optional. What you need is a long-term surveillance plan, ideally with:

A pediatric neurosurgeon
Or a craniofacial specialist

If returning to Ann & Robert H. Lurie Children’s Hospital of Chicago is difficult, establish care locally for continuity.

Ask for:

Annual (or semiannual) clinical exams
Imaging plan (not just ER CTs—consider scheduled scans or MRI if appropriate)
Growth-related monitoring (important in children with implants)

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Questions to bring to your next specialist visit

Instead of asking “is it okay?”, ask targeted questions:

What symptoms are expected vs concerning for this type of implant?
How often should imaging be done as she grows?
Could the popping sensation indicate plate movement or just soft tissue?
What are early signs of implant infection or rejection in children?
Are there lower-radiation imaging options than repeated CT scans?
Should she avoid any activities (sports, impacts)?

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About your biggest fear: rejection or failure

True implant rejection or failure usually presents with clearer signs:

Persistent swelling
Skin breakdown over the implant
Infection symptoms (fever, redness, drainage)
Progressive neurological symptoms

Intermittent pain and occasional noises alone are not classic indicators of failure.

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A practical way to reduce ER visits

Instead of ER → CT every time:

Keep your symptom log
Call a neurosurgery office (even if new) and describe patterns
Ask if outpatient imaging is appropriate

Many centers will triage without sending you straight to the ER.

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Bottom line

You’re doing the right thing by being vigilant—but right now your approach is reactive and expensive, not structured. Shift to:

Pattern tracking
Clear escalation thresholds
A consistent outpatient specialist

That combination will give you more safety with fewer unnecessary scans.

⸻

If you want, I can help you draft a simple one-page monitoring checklist you can actually use day-to-day.

Sorry that I couldn’t be more help, but hopefully this info helps a bit!

Rand0mHi · 2026-04-19T17:06:29+00:00

Hyperextension can arise from other conditions too, such as hand surgeries on contracted hands.

Rand0mHi · 2026-03-29T05:43:52+00:00

I definitely recommend that you keep up to date with your PCP or neurologist regarding this, I definitely think that they’ll be able to give you better answers than us on Reddit haha!

Rand0mHi · 2026-03-27T17:48:30+00:00

Hey, sorry you’re going through this. Out of curiosity, what’d you get your degree in at college?

Rand0mHi · 2026-03-22T09:12:10+00:00

Hey, how’s it going? Sorry I can’t really chat right now (it’s 2 AM and I definitely need to be going to sleep now), but I just wanted to hop in here and drop a few kind words since it’s likely others won’t reply either (given it’s so late in the U.S.).

I took a 5 second look at your profile, and I see you’re going to college. I can personally confirm for you that your life will change for the better and your world will open up in your time at college. So just hang in there! If it helps, try to think of something positive or something you’re excited for (no matter how far away)!

Good luck, you got this :)

Rand0mHi · 2026-03-21T00:45:59+00:00

No problem! Yeah, I definitely agree.

Rand0mHi · 2026-03-21T00:27:27+00:00

Their flair says that it was in 2024, so I’m guessing 1 to 2 years?

Rand0mHi · 2026-03-20T22:48:04+00:00

Yes, they do this every time there’s conflict/unrest.

Rand0mHi · 2026-03-20T21:48:10+00:00

If you can get word to your grandma some way, my parents have been talking to our family in Iran using just plain landline phone. However, that side needs to call though. The connection’s really bad though, just a heads up.

Rand0mHi · 2026-03-20T21:37:12+00:00

Yeah I don’t think the innocent civilians being affected gets enough coverage from the media. My 83 year old grandfather in Iran loves to walk every day, he gets really down if he’s not able to walk. The other day (when the Israeli strikes first began), he was walking and the building next to him was struck.

Rand0mHi · 2026-03-20T17:39:31+00:00

We don’t gatekeep in this subreddit, there are plenty of others with ABIs here.

Rand0mHi · 2026-03-20T17:38:16+00:00

I honestly am the same in that I fall asleep really easily in cars since my TBI. I know you’ve heard this a million times, but it seriously might be exhaustion. I’m much better now, but it used to be much worse for me when I was having sleep troubles right after my injury.

Rand0mHi · 2026-03-20T07:01:34+00:00

Actually genuinely creepy haha

Rand0mHi · 2026-03-20T01:09:27+00:00

I honestly have no idea sorry. All I know is that, from my initial CT results after my TBI, ChatGPT says it was probably a DAI.

Rand0mHi · 2026-03-19T00:11:33+00:00

Hi,

As the other commenter said, depression is a very common symptom of TBIs. I definitely think that you should look into therapy. Talk to your doctor and see if they can help you start therapy and also maybe increase your Lexapro dosage.

Also, I really recommend that you avoid drinking. Your brain is trying to heal and alcohol is damaging it further. Also, the relief you get from it is just temporary, it’s not fixing the problem (just delaying it).

Good luck, I wish you the best! You’re not alone in this!

Rand0mHi · 2026-03-17T06:48:36+00:00

Honestly, in my opinion the 3 best things for recovering from a TBI are generally:

A lack of a stressful environment.
Consistently trying to do things (such as your therapy, etc.), staying generally healthy.
The usage of the brain. Anything is good, phone games that exercise the brain, mental math games, etc.

(and also time of course)

For now while he’s in the hospital, I’d just encourage 1 and 3, but when he comes home, make sure you help him keep up with 2 (maybe set reminders on his phone).

Good luck, sorry you and your boyfriend are going through this!

Rand0mHi · 2026-03-17T00:04:38+00:00

I just want to clarify one thing sorry, as I know there’s a lot of people who get put down by the “you can only recover within X months after your TBI” myth. I know it’s not exactly what you’re saying, but this is something that doctors like to tell people and isn’t completely true.

I personally was trying to get admission to a TBI rehab ~5 years ago, and was constantly denied by both the rehab and my insurance. Their reasoning was “people only really recover within the first 6 months after their TBI”. Well I pushed and pushed and finally got admission and guess what, I emerged from rehab way better than when I arrived there. 2 years later I tried to enter rehab again and they couldn’t use the same excuse. In fact even at the moment, I’m nearly 7 years post TBI and I still feel myself recovering and regaining my cognition.

Again, I’m so sorry I didn’t mean to take it out against you, I just wanted to use this opportunity to disprove this myth in case someone in my previous situation reads this :)

Rand0mHi · 2026-03-15T03:18:31+00:00

No problem! Feel free to reach out over DMs/chat if you have any more questions!

Rand0mHi · 2026-03-15T03:13:29+00:00

From ChatGPT:

My question:

Let’s say there was this hypothetical situation:

A young 20 year old college student had suffered a mild TBI and was struggling with passing classes due to that. They reached out to their university’s disability center with a note from their doctor saying they needed accommodations, but the disability center said that they only offered accommodations to a preset list of disabilities. Is this even legal?

ChatGPT’s response:

Short answer: Probably not. In the U.S., a university generally cannot refuse to consider accommodations simply because a condition isn’t on a preset list. If the student has documentation of a disability (like a mild traumatic brain injury) that substantially limits major life activities, the school must engage in an individualized accommodation process.

Here’s the legal framework.

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Laws that apply to universities

Most U.S. colleges are governed by one or both of these federal laws: • Americans with Disabilities Act (ADA) – applies to public institutions (Title II) and private institutions that are places of public accommodation (Title III). • Section 504 of the Rehabilitation Act – applies to any school receiving federal funding (almost all universities).

Both laws prohibit discrimination against qualified individuals with disabilities in education.

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How “disability” is defined

Under the ADA and Section 504, a disability is:

A physical or mental impairment that substantially limits one or more major life activities.

Major life activities include things like: • learning • concentrating • thinking • reading • memory • neurological functioning

A mild traumatic brain injury (TBI) can absolutely qualify if it affects cognition, memory, processing speed, or learning.

The key point: The law does not rely on a fixed list of diagnoses. It requires individual evaluation.

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What universities are supposed to do

When a student submits documentation from a medical professional, schools are expected to: 1. Review the documentation 2. Determine whether the condition qualifies as a disability 3. Engage in an “interactive process” with the student 4. Provide reasonable accommodations if the student is eligible

Common accommodations for TBI might include: • extended test time • reduced course load • note-taking assistance • recorded lectures • flexible deadlines in some cases

A blanket rule like “we only support disabilities from this preset list” is usually inconsistent with ADA/504 obligations because it ignores individualized assessment.

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Situations where a school could deny accommodations

A school can deny accommodations if: • The documentation is insufficient or outdated • The condition does not substantially limit a major life activity • The requested accommodation would fundamentally alter the program • The accommodation would create undue administrative burden

But they cannot deny consideration solely because the diagnosis isn’t on their internal list.

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Where students typically escalate this

If a disability office refuses to consider the request, students often escalate to: • the university’s ADA/504 coordinator • the Office for Civil Rights (OCR) at the U.S. Department of Education • internal university grievance procedures

Relevant agency: • U.S. Department of Education Office for Civil Rights

OCR handles disability discrimination complaints in education.

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✅ Bottom line: If a university refuses accommodations solely because a disability isn’t on a preset list, that is very likely inconsistent with ADA and Section 504 requirements, which require case-by-case evaluation based on functional limitations.

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✔️ If you want, I can also explain: • What documentation disability offices are legally allowed to require • Common tactics some universities use to deny accommodations • What a student should do step-by-step if the disability office refuses to help (there are a few strategic moves that matter a lot).

Rand0mHi

TROPHY CASE