Has anybody ever seen this:
It comes from this website:
They make connections between diseases. It’s astounding what
symptoms I have from other diseases.
Very interesting “map”, @jongleur! Thank you for sending this. I will say that if the symptoms for a potential secondary syndrome go away after ES surgery, there is a good chance that the symptoms were from ES & not from something else. If symptoms persist, then looking into other possibilities is important.
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That’s interesting- thanks! I’ll have to look some of those up, not heard of all of them!
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I don’t know where else to post this question:
I think there was a post where someone posted
some videos of ES surgery and said they weren’t
gruesome. I didn’t watch them but now I want to
watch them but I cannot find that post.
This work came to my attention at some point on my EDS journey. EDSers seems prone to things like Eagle Syndrome, compression syndromes, autoimmune diseases and many other issues. It makes sense - genes which turn some things on turn others off, genes affect the connective tissue which is found almost everywhere in the body…inflammation happens, which seems to be tied to almost every malady…I think it can be helpful to not see such diagnoses as necessarily separate, but merely windows into underlying conditions in the body.
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This is an interesting web link I look forward to exploring. I was told for years I was hyper-mobile never was told anything about Ehlers Danlos Syndrome (EDS). It wasn’t until my daughter was diagnosed with POTS / Dysautonomia did my real journey into EDS start back in 2007. This after dealing with multiple ligament tear repairs TOS and mostly arm. wrist and hand nerve compression syndromes. My daughters pediatrician told me that after she passed out multiple times around age 7 that it was just “vaso-vagal” response and “normal.” I knew she was wrong and luckily when we moved out of state and saw a new pediatrician, was she finally diagnosed at age 12. We also went to a geneticist to confirm the family diagnosis.
When I picked up a book on EDS “Joint Hypermobility Handbook” by Brad Tinker, I cried. It lists the whole constellation over over-lapping and under-lying medical conditions put together that is up to date. There is alot of evidence to support gene turn-on and off that causes many of these under-lying conditions. Recent studies are showing that POTS is possibly triggered by a virus and auto-immune in nature. About 50% of POTS/Dysautonomia patients have EDS.
There seems to be alot of Eagles patients with overlapping medical conditions such as TMJ and vaso-vagal symptoms. I really hope some long-term in-depth studies on Eagles Syndrome will come down the pike in the near future to shed light on the causes of Eagles and how to prevent it from progressing. I think the answers lie in genetic testing and advances in genetic medicine. Unfortunately, I think it may be about 20 years out before we see more answers.
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Here are links to an intraoral & external ES surgeries:
Intraoral: Eagle's syndrome. Surgical shortening of the styloid process by intraoral approach, - YouTube
has anyone dealing with long term eagles found impeded liver function? as my liver does not function properly. as I have had ever single possible test to determine liver disease or some kinda cirrhosis of any kind. after dealing with all these pains in my neck, face and throat, my liver can not deal with carbs well, or produce the proper amounts of bile to deal with a keto diet as well, im currently stuck with a really crap situation with food and digestion. it just seems the longer this goes on not being treated the more health issues arise. as I just wait to see one or two of the very few dr in canada that deal with this,
That sounds really tough, & hard in Canada with the lack of experienced doctors! I can’t recall hearing of anyone having liver issues- bowel yes, that can be caused by irritation of the vagus nerve. A shame that you can’t tolerate the keto diet as that can be anti-inflammatory. You could search the past discussions for info about digestions issues as it has been mentioned before.
Hi Shane,
Though the keto diet is very useful for many people, there are people who can’t tolerate it long-term because of the low carb & high fat/protein components of it. I had a friend in college who nearly died after going on an extreme keto type diet. She was in the hospital for a month with multiple organ failure including liver. Adding some level of carbs back into her diet helped her recover & live more normally after that.
A diet approach that might be helpful for you is an elimination diet. It starts out very restrictive i.e. no dairy, grains, legumes or sugar & after several weeks you begin to add a food group back in to your diet while carefully monitoring how your body reacts. It takes some work but can be very helpful in figuring out the right food groups & nutritional balance your body needs. Consulting with a nutritionist or dietician can be helpful if doing this on your own feels overwhelming. There are also a number of books available that have elimination diet plans & recipes in them. You can do an internet search see if there is one that seems like a good approach to you.
Shane,
I would doubt Eagles would impact the liver in general.
Was it a primary care doc that has been doing all your liver function tests? If so, I suggest you go to a hepatologist who specializes in diseases of the liver only. The middle level expertise would be a gastroenterologist (GI). Have they checked out your gall bladder? Had an endoscopy to check out your stomach lining,etc?
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yes im aware of elimination diet. I have done ever diet known to man kind. no of with changes anything in my body. keto is to hard because my liver won’t produce the bile to digest the fats, anything carb related I just crash shortly after eating due to the blood sugar lows. and carnivore is just to much for my liver as well, im in a very strange place with what’s happening in my body, really can’t seem to find anyone out here that ever dealt with issues im going threw. it as though my liver has just kinda stopped work. but have no signs of liver failure or cirrhosis either, but with out a question have a swollen liver. it like I need to find a blog oe forum of people with very rare liver issues. as I m waiting on a CT to get done to finally have a proper diagnosis for eagles, as the doctor I seen that suggested I had it. only did an mai or my brain, nothing came of it, this is how terrible out of touch doctors in canada are with eagles.
Again, I’m very sorry for your many health challenges. I hope the CT appointment is soon so you can know whether or not you have ES. If you do, that would be at least one thing you could try to get treatment for.
I will pray for you, Shane. 
thank you very much and god bless!! ill keep you posted on the CT and results.
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