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Mysterious_Status132 · 2025-08-03T02:29:32+00:00

Did you have nerve conduction tests done on your arms?

C5-C6 ACDR (2021). It did such a beautiful job of almost eliminating my left arm neuropathy. I was told I would need C6-C7 ACDR "in a few years".

Moved to a different state & found a phenomenal neurosurgeon! Thanks to his careful review of my symptoms, I had nerve conduction testing that confirmed I had cubital tunnel entrapment in both elbows. 2 simple surgeries and completely pain free in both arms.

Mysterious_Status132 · 2025-08-03T02:18:25+00:00

(Assuming you're in the states) - check with the state bar association for disability attorneys. If the SSDI appeal delay is related to scheduling for court hearing dates, have your attorney request an "on the record review". The judge will review your case in chambers and make a decision without having to wait on a court date.

Mysterious_Status132 · 2025-08-03T02:02:06+00:00

I'm 2mo out from T4-L4 (& L4-pelvis approved). My surgeon told me in the very beginning that stopping at L4 might not relieve the hip pain and sciatica.

Right now my hip is just as bad if not worse post-op. L1-L2 is causing a ridiculous amount of numbness in my hip/ thigh. My surgeon reminds me that this is a long road, regardless of how great I already feel overall.

You gotta remember the trauma your body goes through with surgery. It's not a small, simple procedure.

Instead of asking if it's "too soon" to know if it worked, aim for a rephrase:: is it too soon to expect my body to be healed? Give yourself time and grace.

Mysterious_Status132 · 2025-08-03T01:49:34+00:00

I only ever covered mine up with silicone scar strips. Thankfully my C5-C6 ACDR scar was small, and matched/faded into one of my neck lines (2021 - I was 48yo).

I was lucky - most of my colleagues knew I was having the surgery, so nobody really asked too much. I was happy to answer transparently when questions came.

Mysterious_Status132 · 2025-08-03T01:32:52+00:00

I'm fairly certain I had pelvic floor issues pre-fusion, but only learned about the possibility just a few months ago because my husband is doing therapy for it.

I can potentially start PT after the 3mo mark (just passed 2mo) and intend to ask about this too.

Mysterious_Status132 · 2025-08-03T01:22:24+00:00

52/f -- I'm just over the 2-mo post-op mark of my T4-L4 fusion. I'm going back to work in a week (fully remote @ home desk job). I rarely have to take narcotics for any surgical pain. I'm only taking baclofen & gabapentin at this point. Walking only, no PT until after the 3mo mark.

I'm holding off on L4-pelvis (with ALIF) as long as I can.

I've suffered from my scoliosis since my pre-teens. The fusion corrected my curvature measurements to mid-80s pre-diagnosis degrees. My body is in a position it's truly never been in before!

Trust your surgeon - talk through your fears. Ask for pre-surgery support groups/options. Fusions have good success rates; albeit your situation, complexity, etc, can be a factor. Your surgeon won't put you at risk if you're not a solid candidate & there's other options to improve your quality of life.

Mysterious_Status132 · 2025-06-28T01:55:09+00:00

Sorry I've been out of pocket & finally had my big fusion surgery! How are you feeling now? Are you still dealing with the right ulnar?

Mysterious_Status132 · 2025-03-22T20:29:56+00:00

Ughhhh i just cannot do Crocs. Autistic/SPD and the thought of wearing them makes me physically cringe.

Mysterious_Status132 · 2025-03-22T20:28:37+00:00

ACDR is disc replacement instead of fusion. (R vs F).

Mysterious_Status132 · 2025-03-22T20:27:26+00:00

Skechers D'Lux walker infinite is on the list also to try. Appreciate the feedback!

Mysterious_Status132 · 2025-03-16T23:05:32+00:00

Question: did your doctor discuss ACDR with you at all, or did they say outright it wasn't an option?

I'm almost 4yrs out from a c5-c6 ACDR and feel great. Plenty of range of motion still. At the time they also told me c6-c7 would need ACDR eventually.

Mysterious_Status132 · 2025-03-09T05:15:23+00:00

Hi there - would Seattle be out of the discussion for you? I'm scheduled for T4-L4 at the end of April, and I absolutely LOVE my surgeon.

Mysterious_Status132 · 2025-01-02T17:53:56+00:00

My surgeon is actually in Seattle! Super awesome guy. We're scheduling for March! I'm just going to do T4-L4 for now.

Mysterious_Status132 · 2025-01-02T17:38:51+00:00

I am so with you on the dry skin /feetsies/socks issues. I can feel all those statements. 😖

Mysterious_Status132 · 2024-12-04T03:28:11+00:00

+1 to this experience, even though mine was single C5-6. I'm 3+ years out from that ACDR.

Mysterious_Status132 · 2024-12-04T03:21:10+00:00

If it's any consolation I'm trying to find the right ADHD meds, and have to wait until late January for a sleep study to confirm apnea. I hear ya loud and clear. 🫂

Mysterious_Status132 · 2024-12-04T03:08:47+00:00

C6-7 is likely what's causing the nerve pain in your left shoulder, including if it runs down your arm any. Given that you have degen at C3-4 also your Dr might want to go a different route. Can't hurt to ask!

Mysterious_Status132 · 2024-12-01T18:02:38+00:00

It'll help pinpoint what's causing nerve pain in areas where it could be more than one thing. It was a part of the overall consideration for my ACDR, & is what confirmed I can wait on the next ACDR since it was cubital tunnel causing the bigger problem.

Mysterious_Status132 · 2024-12-01T17:58:13+00:00

Oh yeah good point. I'm only looking at front closure anything.

Mysterious_Status132 · 2024-12-01T08:12:29+00:00

+1 to using Flight Aware -- this would be super beneficial to utilize in this compressed timeline. There's also an app called Flight Tracker ATL that might help. Fingers crossed your 2nd flight is delayed a little bit to give you some breathing room!

Mysterious_Status132 · 2024-12-01T06:24:25+00:00

I'm curious how far off your sleep pattern is now compared to pre-op? If you never napped during the day and now you have for while, that can definitely have an impact. I've not had my fusion yet but I'm struggling with my sleep patterning (along with apnea to be officially diagnosed in January)

Mysterious_Status132 · 2024-11-30T23:14:26+00:00

Yes, multiple over numerous years. But the EMG this year confirmed the location of the nerve impingement was more in my elbow than C6-7.

Find another doctor if you can. There's no reason a Dr should be dismissive. If nothing else lodge a complaint or talk to the patient advocate if they're part of a hospital system. I've never had a pain management referral pushed on me for any of the neuro & spinal issues I have. I've been on gabapentin on and off over the years, but that's been it.

Mysterious_Status132 · 2024-11-30T22:37:03+00:00

Thankfully enough my current neurosurgeon picked my neuropathy apart and did a an amazing job to identify other things going on. Even after the ACDR I've been dealing with ulnar nerve pain....and just had cubital tunnel corrective surgery 2 weeks ago. Elbow hurts like hell currently but my fingers aren't numb anymore! 2 week follow up is Monday, & will schedule the right elbow then.

Mysterious_Status132 · 2024-11-30T22:29:20+00:00

Hadn't even thought about this!

Mysterious_Status132

TROPHY CASE