Traditional Orthodontic Retainers Are Insufficient, Thanks to My EDS

Karen Del Vecchio avatar

by Karen Del Vecchio |

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Last week, I went to the dentist for the first time since the beginning of the pandemic. I had my regular cleaning just before everything shut down last year, and then dentists were either closed or working at reduced capacity for months.

After my fall appointment was canceled, I joined a waiting list and finally got an appointment. Thankfully, as a teacher, I’m also fully vaccinated, which made me feel more comfortable going as well.

Going back a bit further in time, I had Invisalign treatment about two years ago to align my teeth. I had braces as a teenager, but my teeth had shifted since then and put me at risk of future problems. I wasn’t thrilled about doing the treatment, but I knew it was in my best interest.

My dentist told me I should aim to wear my retainers for about 20 hours per day, which is difficult to do. You can only drink water with them in, and if you eat anything, you have to brush your teeth before you can wear them again. As someone with an active lifestyle, this proved difficult for me.

However, I quickly realized that I didn’t need to wear them that long for my teeth to shift. I found that just wearing them at night was enough for me to progress from one retainer to the next, so that’s what I did. My dentist had never treated a patient with Invisalign who also had Ehlers-Danlos syndrome, so this was unexpected. After a bit of research, I found that rapid tooth mobility is common in EDS patients.

When it comes to fixing tooth problems with orthodontia, this can expedite things, but I found that it works the other way as well. After finishing treatment, you’re supposed to wear retainers at night to keep teeth from relapsing. I was pretty good about doing that, and only missed an occasional day here or there. Then, I badly broke my finger and needed urgent surgery last September.

As a result, I didn’t wear my retainer for about five days. For most people, that would not have been an issue. But my teeth had shifted enough that my retainers no longer fit. Then, due to COVID-19, I couldn’t get back to see my dentist.

When I finally got in last week, my dentist was astounded that in six months, my teeth have reverted almost to where they were prior to doing Invisalign. He said he’d never seen teeth move so quickly — and since he’s about to retire, that’s saying something!

Luckily, the technician was able to fit me in for a new Invisalign scan while I was there for my cleaning, so that we can order a new set of retainers. This time, after we finish and my teeth are properly aligned, my dentist plans to put in a permanent retainer — basically a wire glued to the back of my teeth — to keep the same thing from happening again.

While I’m frustrated that I have to do the process over again, I’m thankful that revisions for five years are included in the original cost and that we have a plan to prevent another relapse. I can either be annoyed by the effects of my EDS or be glad that if I have to do it again, at least I don’t have to wear my retainers nearly as much as most people. And if given the choice, I’d rather choose the bright side and keep on smiling!


Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.


Gina avatar


I am a Ehler’s Danlos/Marfan’s patient, and the Mother of an EDS 37 year old daughter.

I’m 57, and my joints aren’t nearly as lose as my poor daughter.

Anyone know why my daughter’s joints are looser near or on menstrual cycle?

Michelle Caldwell avatar

Michelle Caldwell

My daughter is 11 and her teeth are a mess, again. She had an expander put in for a few months, then braces added to prepare her for final braces. Upon last visit, her pallet needs expanded again!!! It was only like a year ago they expanded it!! I don’t now how to move forward. It’s 4G each time!! To do this so young may not be the best idea. I know the pallet expander has to be done early though. I’m pretty positive she’s hEDS.

Mari avatar


Hi GIna, I have HEDS and I notice a big difference in joint paint and looseness in the days leading up to and during my mensural cycle as well. From I understand it is unfortunately pretty common due to the normal fluctuation of hormones. (I have also experienced that it can worsen a great deal when your hormones are imbalanced)

Victoria avatar


Hi Karen, a few months later, how are things going? Any more shifting?

Karen Del Vecchio avatar

Karen Del Vecchio

Hi! I actually just wrote a follow-up column on this recently - if you haven't seen it yet, be sure to check it out. Thanks for reading!

abhy avatar


hey! are you getting permanent retainers bonded behind _all_ the teeth?

Revlis avatar


Hi, Gina;
Unfortunately, this is very commonly seen, and most likely because of the changes in hormones (drops in testosterone, which strengthens ligaments, and increases in estrogen, which increases ligament laxity) that happen during the menstrual cycle.
I wish you and your daughter luck.


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