This is SO PAINFUL?!

Surgery was at 7am this morning. Ulnar nerve release, transposition, and a volar plate capsulodesis in my thumb. I had a nerve block so they didn’t give me any pain meds and said as soon as I fell it start wearing off, start the pain meds. I was discharged and found out that apparently my insurance requires special approval for pain meds and it’s taken literally all day to get my meds approved and filled. The nerve block was gone within 5 hours so nothing is fully touching the pain now because I was already in massive amounts of pain when I finally got meds.

I’ve have several surgeries and this is by far the most painful omg. Pls send any tips that help.

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u/bgssrgvh — 3 days ago
▲ 2 r/kneesurgery+1 crossposts

What is the crunchiness?

Is this just crepitus? My knee makes this noise and then gets extremely stiff/sore. For background, I had a meniscectomy in 2021. Then bilateral hip surgery in 2024 and 2025. Developed pretty severe pain in my right knee in 2024 after the first hip surgery, and my patella started subluxing in January, but it would go back in place on its own. My MRI said I had a significant patellar tilt and Hoffa’s fat pad impingement consistent with patellar maltracking but my MPFL was intact - I’ve had this since my originally MRI in 2021, too. My original hip surgeon and knee doctor were pretty unhelpful and said they didn’t know what was going on and I was just a complicated case. I got a 2nd opinion who said I needed an MPFL reconstruction and then resigned two days before my surgery. I got a 3rd opinion and the PA came in and said I had trochlear dysplasia, cartilage damage and a bone spur under my patella, and they could fix the instability with an MPFL reconstruction but they couldn’t do anything about the cartilage damage so I’d still have pain. Then the surgeon came in and said since I haven’t had any full dislocations, my MPFL is intact, and my hip surgery was only 8 months ago he thought I was just weak and he wasn’t actually going to do the surgery, and to stop wearing the brace I had.

So now 3 weeks ago my patella started subluxing and staying stuck where I’d have to kick my leg around or push with my hand to get it back into place, and last week it started making this crunchy noise anytime I move it. I haven’t found a 4th opinion yet and honestly I’m a little bit depressed and I don’t know that I want to because I can’t mentally deal with another doctor right now. I’ve also been in PT since 2023 so I have that part covered. If you’ve had crepitus, is this what it sounds like? I have no idea!

u/bgssrgvh — 7 days ago
▲ 5 r/eds

Watson Protocol for Shoulder Issues

Has anyone here had any luck with the Watson Protocol for shoulder issues? I’ve had problems with my left shoulder for years, included snapping scapula, a complete dislocation, a million partial dislocations after two rounds of crutches, and now some new pain that started after an elbow MRI in a terrible position two months ago. I think I have a torn labrum but we’re going the PT route even though I’ve rehabbed this shoulder extensively (on my own and officially with a physical therapist) for years. I’m with a new doctor who wants me to try the Watson protocol to stabilize my scapula and hopefully then smooth everything else out. Has anyone tried it and had any luck?

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u/bgssrgvh — 11 days ago

Scar pain 8 months out

8 months out from my second hip repair (cam/pincer & labral repair). I had more trouble with this incision and had a suture kind of poking out for a few weeks but it healed fine. I also had some nerve damage and I couldn’t stand being touched on my upper thigh so my PT didn’t really get to do as much manipulation and scar tissue massage as he did on my other hip and I’m pretty sure I have some adhesion. When I press on the incision site it feels kind of stuck down and there’s a bumpy feeling underneath, and it’s dented down when you look at it but I’m not sure that it’s really visible in the photo.

Has anyone tried dry needling or massage or anything like that at 8 months out and had any luck reducing pain? It only hurts to touch/press and when I stretch, but I thought it’d be gone by now. I’m done with PT but still get dry needling fairly often and get massage regularly, just trying to see if there’s anything to do at this point or do I just live with it!

u/bgssrgvh — 24 days ago
▲ 2 r/eds

volar capsulodesis on thumb?

Has anyone had a volar capsulodesis on their MCP joint in their thumb? My thumbs regularly dislocate and the pain is getting to be too much. I’m also losing way too much function and need to do something. I’ve seen two hand specialist. The first said the only option was a joint fusion and he wouldn’t do it yet because I’m too young. The second offered the volar plate capsulodesis, and said it will not be a long term fix but it will buy me a little time (maybe a few years) before I’ll need a fusion. I’m leaning toward the capsulodesis but would love any feedback if anyone has experience!

I’ll be having it done with an ulnar nerve transposition

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u/bgssrgvh — 24 days ago
▲ 1 r/eds

Thumb UCL reconstruction - did it work?

I’m back to cry some more after another sad doctor appt.

Saw a hand surgeon to hopefully get info on getting some thumb stabilization. He said typically he’d go for UCL reconstruction with active brace but in my case he won’t even recommend it because it will fail. I’ll just need to wait until I decide the pain is too much and then get a joint fusion, so basically I need to decide when pain outweighs function because I’ll lose a ton of function.

Has anyone had a thumb UCL repair? I’ll take good or bad experience. Did it last, did it fail? If it lasted, how long? I almost want to give it a chance just to get some relief. And has anyone gotten a fusion? I’m 33 so he said he wouldn’t do it yet because I’m too young but I’m tired of being in pain and I’m starting to have trouble working.

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u/bgssrgvh — 1 month ago
▲ 14 r/eds

Physical display of the stress caused by dealing with the medical system

Saw something similar in the Oura sub and checked mine and thought it was validating to see a physical representation of this past week and attempting to deal with the medical system with this condition. I’ve had the worst week of my life with doctor’s appointments. I’ve been looking for help for my knee for over a year after having double hip surgery that damaged an existing problem and earlier this year I found a orthopedic surgeon that was actual super familiar with EDS and he agreed to help me when no one else would. Three weeks ago, which was just two days before my surgery, his office cancelled, and on Monday, they told me he left the practice and I wouldn’t be having surgery at all. This is the guy I thought might actually finally help me and now he’s just gone and I’m honestly devastated. I feel like I lost the only chance I had to get this fixed and I was SO close to surgery. I literally haven’t stopped crying since Monday.

Then to make everything worse I do actually need this surgery so I got in with another surgeon on Tuesday through a cancellation and his PA came in first, evaluated me, and told me yes, they would do the surgery, and to wait for the scheduler. The surgeon came in while I was waiting and evaluated me and said that actually no, he WOULDN’T do the surgery. This wasn’t even 10 minutes after his PA told me they would and left to get the scheduler. He thinks I can rehab my way out of it even though I’ve had the issue since 2021 and it got really bad in 2024. I’m somehow supposed to magically fix something I haven’t been able to fix in 5 years. Or if I have to start going to the ER for full knee dislocations, then he’ll do the surgery. I’ve never cried more in my life. There’s no point to this post other than I guess it’s kind of validating to see how much this actually impacts my life? Like I’m not crazy, this is very obviously having a huge impact on my life in a really negative way and I feel like doctors don’t care at all.

u/bgssrgvh — 1 month ago

Second option?

Diagnosed in December after nearly a year of symptoms: full arm numbness, increased tightness in the sides of my neck limiting movement, drop in oxygen sat when lifting my arms, feeling like the blood was draining from my arms, coldness in my hands when arms/blueness in my nails. I went to an orthopedic surgeon and he thought I had TOS. I also have cubital tunnel syndrome, so he gave me the option of seeing a vascular surgeon who would ONLY treat TOS but is top of the field (Dr. Freischlag) or a hand & nerve surgeon who would treat the TOS and the cubital tunnel, so I went with the second option (I realize now I’m an idiot).

New Dr confirmed TOS, sent me to OT, and cleared me at the follow up, and now 3 months symptoms are horrible. I’m doing a lot more research and realizing I don’t even know what kind of TOS I have because I was never even told there are different kinds, I never had imaging aside from a brachial plexus MRI with my arms down by my side (which is the only position I don’t have symptoms in), and there we’re literally no treatments offered aside from OT. I’m assuming I have nTOS but I do have a recorded drop in oxygen sat when I lift my hands up (lowest recorded is 82% in my left arm and 78% in my right arm) and the ortho I saw said my radial pulse dropped significantly during the Roos test. Can that happen with nTOS in anyone’s experience? Google is giving conflicting info. I have a lot of other medical problems going on and I’m trying to decide if I need to find another doctor because I don’t trust my current one anymore

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u/bgssrgvh — 1 month ago
▲ 1 r/Anemic

Semi low ferratin + surgery

I finally had bloodwork done yesterday after months of feeling awful and my ferratin came back at 27 and hemoglobin 14.3. I know it’s not terrible but I’m sleeping 12+ hours when I’m on my period, I’m constantly exhausted, shaky, I can’t think, I’m crying all the time, I feel horrible, and this is at least the 6th month in a row I’ve missed work during my period because I literally cannot get out of bed. I have a connective tissue disorder and a lot of orthopedic issues currently so I’ve had two major surgeries in the last 1.5 years and I’m due to have knee surgery at any time (waiting for a rescheduled date). My symptoms have gotten much worse after each surgery so I’m a little worried about recovering post op, especially going into surgery feeling as bad as I currently do. My PCP told me to start a supplement but I’m wondering if anyone had any luck asking for an iron infusion when you were around the 27 level?

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u/bgssrgvh — 1 month ago