Questions on Ehlers Danlos

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Hi Y’all!

Still getting over the fear of posting here. Very overwhelming, but I have questions I just don’t know who to ask.

Hep diagnosed me with Ehlers Danlos Syndrome back in March and it honestly answered so many questions and made sense of so much of my childhood. Just having the diagnosis is validating. I can’t tell you how many doctors have asked me over the years if I have Ehlers Danlos, and when I said “I don’t know” they simply replied with “Ok!” …no follow up questions, no tests, no referrals. Just, “ok!” You can’t imagine the restraint it has taken not to send each one of those docs an envelope full of glitter, so they can never forget me. Ok, rant over!

This brings me to some questions you may be able to help with, seeing as they have not.

How do you determine what kind of EDS you have? I have heard you need to see a geneticist to determine it, but I can’t find ANY local to Colorado. Anyone out there have insight or referrals?

How does your EDS affect you post surgery + post recovery? I know there is no cure for EDS and it’s really just a process of managing it, but I guess the question is, does it become more tolerable post styloidectomy? What’s left over?

Given that EDS comes with Migraines and POTS, and I have been warned by Hep himself and several in this group that I will likely have some leftover diagnoses, what does that even look like? What part of my symptoms are Eagle, and what parts are just EDS+POTS+Migraines? I guess what I am asking is, roughly, how “cured” should I expect to be?

Again, thanks in advance for helping me prep for these appointments. I am noticing that since it isn’t a common ALC surgery, there’s sooooo little information out there about Eagles and Styloidectomy… and so few people to ask about it.

B’Ahava (“with love”)
Smallgirlbigmountains

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@Snapple2020 is pretty expert on EDS, so hopefully she’ll see your post and be able to give you some advice, otherwise you could message her privately. Here’s a link to a post she did with one of our members who has been diagnosed with EDS & POTS:
Overwhelmed and waiting for official diagnosis - General - Living with Eagle
And another post about EDS, @hyperichard has EDS and had surgery for ES:
Those with EDS or suspected EDS what helps you? - General - Living with Eagle
I do think that we’re all different, even with just ES, so recoveries can very quite a bit, as well as what symptoms are resolved, so if you throw in EDS & POTS as well then it could be difficult to predict what you’ll be left with. I think it’s best to think of this as a journey, and the ES surgery is a step in the right direction to get you as good as you can be…
Hopefully others who know about EDS will give you some good advice!

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Hi small girl,

Here are some links below. I only recently found out about the EDS Center of Excellence in Denver. You may have to do some searching to get into the clinic in Denver.

I have EDS myself, so do all of my kids to some degree,(2 brothers) one with severe POTS so I have alot of knowledge on both the subjects. I did have ES surgery (2020) and generally didn’t find much issue with healing w EDS. I do think I have significant neck instability and TMJ w scalene and SCM muscle issues that are outside this. Not all my symptoms went away after ES surgery that I had hoped for. Its very hard to tease out what is ES and what is other issues related to EDS. How cured after ES? depends on your history, age and length of symptoms, pre-existing issues, CT scan of Eagles?, etc. We can talk more about that as its lengthly discussion. Feel free to private message me and we can also speak over phone.

I have had ongoing headache and neck issues for decades and get regular botox for the migraines which helps. I have decades of dealing with this and have tried about everything there is. I do NOT recommend prolotherapy which is an offering my a major clinic in denver (Centuro-Shultz?)

Denver: UC-Anschutz Medical Campus:

Ehlers-Danlos Syndrome Center of Excellence on campus

https://gates.cuanschutz.edu/research-focus/ehlers-danlos-syndrome-(ed)

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Thank you again @Snapple2020, you’re so knowledgeable & helpful… :smiling_face_with_three_hearts:

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Hey smallgirlbigmoutains,

My name is Merl, I’m a member of the modsupport team here on Ben’s Friends.
I’m sorry to say it like this, but your question is a bit like asking ‘How long is a piece of string?’. For those of us with multiple diagnosis it is common for a dr to point to one condition as being the primary, but then upon seeing another medico we get a different answer. It really is impossible to pinpoint a single cause to a single symptom. I have a brain tumour and I’ve had more pseudo-diagnosis than I can count on my fingers (and toes) with lots of ‘It could be ‘X’ or it could be ‘Y’…’ but a definitive answer has been hard to come by.

I’ve had multiple neurosurgeries (6 so far) and with each one I’ve been told “All fixed” and although the surgeries have dealt with an issue, each has unleashed it’s own side effects. I too have tried to get some sort of definitive answer, without much joy. As one medico said and the closest I’ve come to an ‘answer’, if you could call it an answer, “Well, you’ve had brain surgery… …What did you expect?” What I didn’t expect was THIS.

So, ‘How cured?’ every one of us is different and I do not believe there is an exact answer. For me they’ve taken scans and it all looks OK, seemingly. But, phew, some days it can all be rather overwhelming. I’ve found that my symptoms can vary wildly and due to this I need to manage the ‘Now’. If that’s medication, I use it. If that’s using relaxation techniques I do it. If that’s changing my environment, I do it. I’ve found I have to be super flexible to manage around ‘Me’, not around the dr’s, not around what others think, but around me.

Hope it helps
Merl from the Modsupport Team

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Thank you, @Merl! Great post & helpful even for those of us who have less complex cases since ES surgery recovery can be a bit daunting & time consuming!!

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@Mod_support, thank you for that insight. I definitely anticipated that answer, or something like it, but god it would be so nice if SOMETHING in this crazy diagnosis was clear. I have been riding the wave of being sick + mistreated by doctors, friends and family as a 20-something for longer than I even realized. So now I am learning to ride this wave, too. It’s hard going into a rather big and important surgery without knowing the results. And having these other diagnoses makes that even fuzzier.

I am so sorry to hear you have had an incredibly difficult medical experience. I am sending you love and support to manage your medical journey. If only there was a pill to make everything go away…🫶🏻

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@Snapple2020 just sent you a private message! Your information was SO helpful!

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Clear? Yea, I wish. I’ve told others 'It’s as clear as mud…" but often they simply don’t understand it all (as if I do). One thing I hate is when people tell me I look awful when I’m symptomatic. They want to have a look from this side, what they can see is but a fraction of what I’m trying to manage. Like many of us I NEED that magic pill that makes it all go away, but alas, I haven’t found it yet.

Merl from the Modsupport Team

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