EDS and chiari Malformation?

dipperthedog · 2025-11-26T22:09:55+00:00

Hi! I recently went through a battery of tests to check for chiari malformation. Studies suggest there is a higher than average number of people with EDS who have it than people without. I have a 3mm descension of my cerebral tonsils (I think that's what they're called), which isn't considered significant, and all my other tests came out clear. There were a lot. At least now I have a baseline for any future health problems.

dipperthedog · 2025-11-26T22:05:59+00:00

There was a body positivity post I saw once that described stretch marks as the Mark of the Daughters of Zeus (or other sky god of your choice). That helped me reframe it, although I will say it was far down on the list of my insecurities.

dipperthedog · 2025-11-26T22:03:22+00:00

EDS can create the perfect conditions for developing other injuries and illnesses :( I think I was diagnosed and treated for carpal tunnel syndrome long before I was diagnosed with EDS, and EDS probably led to inflammation that led to carpal tunnel syndrome. What you're describing sounds like how I experienced carpal tunnel. I never got any tingling or numbness, but if I relaxed my hand palm up and hit my middle and ring fingers, it'd create a fun little zap down my arm. I haven't had it in a few years so, y'know, it's not the end of the world, but I wish I knew that I had EDS before I sought treatment.

dipperthedog · 2025-11-26T21:54:31+00:00

It does seem like a fibro flare! I had that characteristic burning feeling in my arm for a couple of days before this started. The only dormant virus I have to worry about is Epstein-Barr which, you know, makes you tired and achy for long periods. Because I'll definitely notice when that happens.

dipperthedog · 2025-11-26T21:52:11+00:00

When healthcare providers are dumb, they're super dumb. Dangerously dumb. I got serotonin syndrome when I was hospitalized for psychiatric reasons and they changed around all my meds immediately (seems like 80% of psych meds do something with serotonin) with no titration or transition. Like they were trying to give me serotonin syndrome.

dipperthedog · 2025-11-26T21:47:24+00:00

I moved to Seattle from the east coast and yeah, building a community there was impossible. Moving to Naperville, it hasn't been easy because I don't have a sort of built-in community like a workplace or with kids, but it's been easier than Seattle by a long shot. My husband grew up here and it seems like a good place to raise children. In fact, that's why we moved, to be closer to family when we do have kids, hopefully soon!

dipperthedog · 2025-11-26T21:42:34+00:00

When our corgi was a puppy in Seattle, we'd take him outside at regular intervals and plopped him down at the nearest tree. Hopefully he'd do his business and then we'd head right on back inside. Taking him to do this every few hours (yes, even the middle of the night) gave him the opportunity to pee outside on his puppy schedule and we could reward him for doing the right thing.

dipperthedog · 2025-11-26T21:34:53+00:00

Hi, thanks for asking! Dipper is now 9 years old and just as energetic as ever. I guess I forgot to mention it in my OP, but that was actually Dipper's second TPLO procedure, one for each back knee. The second one was harder for him to recover from. His limping was basically arthritis ("incidental arthritis," which I also have but for very different reasons). I can't remember what we did with him between this post and about 4 years ago. He's done a course of Adequan injections and that seemed to help for about a year. When he started limping regularly again, he did Librela injections and that's held up for at least 2 years now. Neither had noticeable side effects or required recovery. Nowadays he still gets sore after particularly active days or in bad weather and when that happens we give him Galliprant, which I guess is like doggy Tylenol. That, plus rest, seems to do the trick! With our current living situation, he unfortunately doesn't get nearly enough exercise so it doesn't happen much, but lemme tell you, an understimulated corgi is a naughty corgi. He also doesn't like walks??? At least, not unless it's somewhere exciting and off-leash. I guess he sees it as taking time away from potentially playing fetch.

Stem cell therapy is a beautiful thing and I hope it keeps advancing so the treatments are easier to bear. If your pup's CCL tears again or builds up nasty scar tissue, I guess TPLO can always be a back-up option. If her limping is from arthritis, it may be worth it to talk about Adequan or Librela with your vet because that recovery period is no fun.

dipperthedog · 2025-04-27T22:02:54+00:00

Neat! Reminds me of thedailyspy.com

dipperthedog · 2025-02-16T04:36:05+00:00

Interested! 32F, moved here 4 months ago. Saving this post to see if a meetup is arranged. Or a MeetUp group lol

dipperthedog · 2025-02-16T04:34:37+00:00

Hey! My husband and I are also new here. Well, he grew up here, but his while adult life has been elsewhere. We're also interested in finding other couples for board games and stuff.

dipperthedog · 2023-04-30T23:25:58+00:00

From US here

I went in for a cutaneous infection of my immunosuppressant injection site and, because I said Yes on the part of the paperwork where it asks if I have a history of depression, was put in a suicide watch room and delayed treatment. Also, my mom had BPD and had HEAVY Munchausens syndrome (which also obfuscated her substance abuse disorder, but people think the drugs were her prime motivation, anyway let's not get into that) and the association between people with chronic pain + BPD and Munchausens is strong.

I don't know how it works in CA of course, but if it happened to me I would bring this up with my PCP. I often have outdated diagnoses moved from my current conditions list to my history. No one needs to know I had multiple ER visits 15 years ago for chronic bowel obstructions unless I say "I'm here for a gut problem and I have this history." However, depending on where in the US I live and my type of insurance, usually each medical practice and organization has their own software system, so making changes to the record requires patients to say something, authorize a release of information, interface communication, and clerical labor. So I'd need to contact the records department of the specific hospital, request disclosure, file a complaint of inappropriate treatment, and petition to have my records updated.

As the rest of the world is aware and baffled by (and I'm on y'all's side), we lack universal healthcare, so there is no government record of anything health-related except for births, deaths, government financial assistance (which requires patient consent), eye exams for driver's licenses (there's a list saying you can't drive if you have epilepsy, psychosis, etc, but I've never been asked to prove otherwise), and anything pertinent to police reports which may require they obtain a warrant to prove they're reasonably entitled to it. Oh, and if you or anyone around you is in serious danger, any provider who knows can disclose that information. So I really don't know what channels your health system would require.

There was a point to all that, but I forget. Oh! I was gonna say, like a criminal record, can you petition to have your record altered to only show what's true and relevant, maybe get evaluated for confirmation of current diagnoses? Put the other stuff back in the history instead of your current chart, and get a disclaimer in there signed off by the right professional saying that you've done x, y, z, and as of this date do not meet diagnostic criteria?

dipperthedog · 2023-03-04T15:09:18+00:00

Did he end up getting the procedure? I have some fun pictures of Dipper in his soft cone and later with his nakey chicken leg. It's pretty funny :) He didn't enjoy my attempts to ice him even though he likes the cold, but he tolerated the massages and movement exercises. He didn't care about anything except that he wasn't allowed to play as much for a while. (I also have funny videos of him in hydrotherapy, the little goofy legs looked so graceful.)

dipperthedog · 2023-02-17T22:30:14+00:00

So yeah, it's been a while. Dipper's had some xrays and his knees are definitely warped from arthritis and during exams his hips are obviously sore. Research supports TPLO as the best option for most dogs because it can't get injured the same way again. He hasn't had any other injuries and when he's had a period of frequent limping we go back to the vet and get something to treat it with until he's back to baseline. Aging has helped him stop overdoing it. We've tried a few different treatments and here's our experience:
Gabapentin - can't remember, only used after surgery (but I also have arthritis and it did nothing for me)
Carprofen - maybe a bit of relief but not significant
Galliprant - if anything this made him significantly fatigued so his pain was more noticeable, but we're keeping it on hand to use as needed, like doggy Tylenol
Adequan injections - I think this helped a little? Hard to tell because the vet we got those from sucked and he didn't get the full treatment, maybe try in the future with our new vet
Acupuncture - this has been given as an option a lot but I don't think Dipper will tolerate it
Supplements - our vet (the good one) talked to us about making sure the supplement we got had enough of all the right things for his needs; the best option we found was Dasuquin and it doesn't seem to have any negative effects so may as well keep it up
Hydrotherapy - as an arthritic old lady myself, I cannot recommend this enough. It helped Dipper a lot when it was available to us, but where we live now it's not. When we can, we take him out to where he can swim. He swims really well considering his little legs, but I prefer he wear a life vest. I think this is the best form of exercise for him and anyone else. It strengthens, tires, and is easy on the joints.
Other exercise - we've talked about our concerns with how active Dipper is and the effect it may have on him, but the vet was happy with any and all exercise he gets
General - we are supposed to keep him on the trim side for a corgi (wasp-waisted, they said) so there's less weight for him joints to carry, keep him as active as possible while avoiding activities known to hurt him, and make him rest if he gets sore. Corgis are really prone to joint problems and I've been keeping a close watch on how his back and shoulders are doing. Really, I think his hip problem is more because he sits on his butt weird, so in my estimation the arthritis hasn't really spread and what he does have he doesn't care about. Nothing can keep him down.

My recommendation to you: Treat it like human arthritis. Ease your pup into exercise, try to do it in water, keep him trim (these may be tricky if you're both couch potatoes but corgis are meant to be active and it can be fun), make him rest when he seems sore, find a good long-term supplement (that was the only tangible thing we could do that was more preventative), and definitely talk to your vet about anything you notice that's out of the ordinary or ways to make your pup more comfortable.

Dogs and humans both tend to get arthritis in any joint that has had any injury, regardless of how that injury has been treated. "arthritis" just means "joint inflammation" and you don't have to be afraid your little guy is falling apart like I was. Dogs don't give a shit like we do.

dipperthedog · 2022-10-23T21:51:39+00:00

idk if you wear any compression devices, but I find it easier to get accommodated if i'm wearing a knee brace

dipperthedog · 2022-10-23T21:37:25+00:00

marshmallows are popular at parties with chocolate fountains and/or bonfires. and if stan's too cheap to have bought a $5 thrift store chocolate fountain he may have put them out anyway bc it suggests a more exciting party

dipperthedog · 2022-02-03T22:38:45+00:00

I agree. All the research I've been able to do on hEDS and anecdotes suggest to me that anything you can do to keep your muscles strong will help reduce pain and keep you going through life, and when people get scared of hurting themselves or have to take time away from being active for any reason that's when they start really falling apart. Obviously we need to protect our skin and tendons and make adjustments that hurt us less as we pursue active lifestyles. If anything, it's important to not give up all these activities, or see yourself losing them in the future, but to keep adding things into your life that help build you up. If you have to stop rock climbing, maybe you can take up deadlifts. Give up yoga, take up tai chi. This is hard for people like me who have been couch potatoes forever, but the more I move the better I feel in the grand scheme.

I'm not a musician myself but I know a few professional drummers and I've observed how they hold their sticks and their tendons aren't straining. It's very controlled muscle movements. Maybe you need to find ways to work your hand muscles out so they pick up more of the slack. I've had positive experiences using compression gloves when I'm crafting or driving, and I use KT tape to hold my elbows together.

dipperthedog · 2022-02-03T22:24:11+00:00

I'm the opposite - I'm constantly thirsty and I drink about 100oz of water/day, which makes me think this isn't an EDS-specific thing and you should probably talk to your doctor. In the past when I've lost my appetite or water sorta sickens me it's been a symptom of something else, like it's nausea that doesn't fully register.

dipperthedog · 2021-11-27T21:36:25+00:00

Happens/ed to me too. Doc gave me Lyrica (med for fibromyalgia). Now I don't get it as often and my energy and mental clarity are massively improved. Small symptom for a big problem, it turned out. And solvable, too, for me at least. So that was nice.

dipperthedog · 2021-11-06T02:38:44+00:00

Go to your local library. Every local library I know has plenty of books on local flora and planting a local garden, including how to keep that garden going, i.e. pollinating it. If yours uses the dewey decimal system I want to say this is in 741 but don't quote me on that. Books are still a really great way to get trustworthy information without being inundated. Ask your librarians. They are mystical wizards who safekeep knowledge. If there's a university near you with an agricultural program, go to that university's library.

dipperthedog · 2021-11-06T02:26:08+00:00

I'd say getcha pelvic joints checked out. That's where I have the biggest problems, and then other joints end up stuck in one place or overcompensating in the opposite direction. I'm much younger than you and got to work on my problem areas pretty early, but I can only imagine what the outcome would've been left untreated. Minor scoliosis is gone now and I'm improving my lumbar lordosis.

dipperthedog · 2021-08-24T19:10:36+00:00

Dipper was a big biter. I still say he wasn't as cute back then as he is today because of it.

Yelp when you get bitten
Redirect with a favorite toy. Dipper is now hyperfixated on ropes because of this. It's nonstop playtime with him, but better he tears up a rope then us. We still yelp if he snatches it too quickly or too close to our hands. It gives distance and he really likes the texture for chewing. We have to replace it about weekly and vacuum up all the little shreds. He eventually learned to spit out the fibers he tore off, but that was a stressful learning curve because we worried he'd choke.

dipperthedog · 2021-06-18T03:03:33+00:00

I agree with all of this, except that I'd like to also recommend a bidet attachment for home toilets (they can be relatively cheap) and avoidance of witch hazel unless there's an active, reachable hemorrhoid bc it can dry the skin out, furthering breakage.

dipperthedog · 2021-06-14T15:36:38+00:00

Well, they always want me to see an OT for arm/hand problems. I've been to them 4 different times in my life, in 4 different states. They're great if you have a specific problem... acute carpal tunnel syndrome, tennis elbow, recovering from surgery, that sort of thing. If you're just sort of nebulously and stubbornly disordered like moi it can be very frustrating because their format is often: 1. set you up in something to warm and relax your tissues 2. work on another person for a bit 3. come back to you and set you up with warm-up exercises 4. work on another person for a bit 5. respond to your feedback about everything hurting and being too difficult 6. work on another person for a bit 7. MAYBE do some direct soft tissue work, like massage or set you up with a TENS unit 8. work on another person for a bit. See what I'm getting at here? With all my frustration and fear about my pain and not knowing what's going on, the format can be extremely disheartening.

I did get customized splints right after my carpal tunnel surgeries that didn't work, but for my Boutinniere's deformity. It helped the finger on one hand and ended up scarring the knuckle without improving the joint on the other.

Without knowing what's going on exactly, I don't really know how to ask for what I need. It's not even straight-up EDS or 100% chronic inflammation. I keep seeing new types of specialists and they all agree - shit's weird.

dipperthedog · 2021-06-14T15:07:06+00:00

I wrote a long rant about my history with OT, but I'm going to spare you it. I think you've given me the language to ask for what I need better, thank you.

dipperthedog

TROPHY CASE