I see that losing weight is often associated with Eagles. I am instead experiencing unusual weight gain and wondering if it could be possible Eagles could cause this?
Im thinking of having my thyroid checked… is that ever triggered by Eagles?
Hi shayney,
Definitely worth it to get your thyroid checked. We’ve had members w/ parathyroid issues & others w/ thyroid issues. It’s unclear whether or not these are related to ES. I have had cysts in my thyroid for years, some of which are calcified. I don’t think my case is due to ES, but there is the related component of the body putting calcium where it doesn’t belong.
As far as I’m aware, metabolic imbalances are mentioned as a cause for ES- as Isaiah mentions, some members have had parathyroid problems , but the calcium imbalances can be linked to ES, I wouldn’t think it would be the other way around…definitely get your thyroid checked out though.
The Vagus nerve does have a role in metabolism, & can be affected by ES, although often it seems to be more irritated/ stimulated by the styloids. I’ve just done a quick google search, & found one study which mentions inflammation & it’s role in weight gain, might be interesting to read:
Not directly caused by Eagles but I gained weight due to the medication I was taking. Definitely a possibility if you’re on gabapentin or pregabalin or something similar.
I have had calcium deposits for years as early at 18 I had to start having surgery to remove bone spurs my foot on the back of my heels. Over and over through the years I would find out I had spurs all over my body which cased problems. I have them in my spine pinching nerves. I won’t even list everywhere basically at all my joints. I had to go back into a surgury less than a year on my right knee and the doctor said he got 3 shot glasses full of scar tissue and bone spurs. Do other Eagle patients have a lot of scar tissue issues? I found it interesting about the thyroid as I had my right thyroid out at the same time I had the bilaterial styloids removed. I wish I had taken the whole thyroid out. It’s less than a year and they are going to have to go back in and remove the left and isthumus as so many nodules are so large they are choking me. Also I have noticed that a large percentage of Eagles patients are having Eye problems, have you found this to be true? I started with Blurry Vision and then occasionally it would be double in the left eye. Now the double vision is all the time. I have gone to a lot of different eye specialist and they sent me recently to a eye neurologist. I have mentioned that several Eagle’s patients are having eye problems all the time. Something is making me lose nerve fibers in both eye. All most all the fibers are gone in the left. None of the specialist can figure out why. I would like to here your opinion on this. Thank you for your help.
This sounds like so much you are dealing with, so sorry for you, sending you a hug…Bone spurs are quite common, & there have been a few members with scar tissue problems. Eye issues are much less common; I have dry eyes, it started all the same time as my ES symptoms ramped up. I think that it possibly caused an autoimmune condition as I have a very dry mouth too (although never diagnosed, didn’t want to go through all the testing as it’s manageable). I did read tgat the Trigeminal Nerve has some motor functions, like innervating the secretions in the eyes, so wondered otherwise if this was a possibility- I’ve never seen any research on it though- as the TN is commonly affected with ES. Another possibility but very rare is that the optic nerve can be damaged with very high Intracranial pressure, which could be caused by pressure on the jugular veins by the styloid processes. But there would be other vascular symptoms too. Vascular ES where the carotid arteries are compressed can cause pain along the artery & to the eye, but I haven’t heard of anyone losing vision through this…
Best wishes, hope that you can get some answers…
I have dry problems all over. Have you ever been checked Sjogren’s Syndrome: They are going to biopsy my lip next time I’m in surgery for this. Thank you for all the information and I hope you feel better soon. Have a great day!
Ive had a variety of bone spurs myself in various locations however I dont know for how many years. I do know that I have many decades of scar tissue formation and needed several surgeries for nerve compression caused by scar tissue. Scar tissue that was formed for no known reason ie: no falls or injuries to cause them. I was told for years I was hypermobile. I did finally discover I have ehlers danlos syndrome (EDS), a connective tissue disorder that can cause this excessive scar tissue. Alot of my surgeries have been in hands and wrist. I found a great hand surgeon who has expertise in EDS. Our 1st visit to him was for my daughter (also has EDS) to repair another doctors removal of a ganglion cyst on her wrist - she had developed a painful neuroma on the incision site. It’s his opinion that great care needs to be used when doing surgery on EDS patients ie: types of sutures, how to close up a surgery site,etc. I dont know if that has any bearing on some of your scar tissue issues.
Before my last pain flair at xmas, I started having left eyelid twitching.It eventually calmed down after steroid shots and nerve block then followed my styloid removal a month ago. It has started returning the past week but on the lower eye lid. My TMJ has been kicking up pretty bad the past week (was warned it would after surgery) I personally think its nerve inpingment and as Jules suggested Trigeminal nerve can impact alot of facial nerves that lead to eyes.
I’ll have to ask about EDS. I also have a lot of nerve problems due to scar tissue and bone spurs. I’ve had several injections in my spine. There is a great Dr. in Chapel Hill, Dr. Berkoff that does a simple procedure to remove scar tissue (he is one of the only one s to do this procedure (Tenex) n NC . He cuts a very small hole and uses an ultra sound to remove scar tissue and sucks the scar tissue out with saline water… My neurologist told me about him as he had this procedure done for rotator cuff. I go to him unfortunately he said I had the record for removing scar tissue. So far he can only do the shoulder, feet and elbow. I wish you well. Thank you for the information.
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Interesting about the scar tissue removal. I will look into that.
I generally have had a history of torn ligament and scar tissue formation. They say this can happen often in EDS due to the hyper-mobility ie: overstretching causing micro-tears. Im pretty certain my 1st ligament repair on wrist was doing yoga. I stay away from any PT or yoga that involves the wrist such as downdog,etc. EDS-hypermobility (Type III) isnt always easy to diagnose (there is no blood test and its based on symptoms)and needs sharp doc who knows something about the different types of EDS. My daughter and I were confirmed by geneticist.
After my last child was born in 1994, I was having severe left hip pain. It took me several docs, all kinds of MRI’s, CT’s with no indications as to why I was in pain and 2 years but I finally found a neurosurgeon at UCLA who was working with an specialized MRI called a Neurogram. It can read nerves. Since he was one of the original developers of it, and doing a study I lucked out. You really need a well trained doc to read the results. He was able to see the source of my pain was a mass of scar tissue compressing my sciatic nerve. I never had a fall or injury to cause this. I suspect it was from child birth as my last was 9.5 lbs and I’m on the petite side. Im not sure why, as this testing has been around for a couple decades, but insurance often wont pay as its “investigational”. Ive had several neurograms that found additional nerve compression. Right before I was officially diagnosed with ES, I was seeking out someone to do one on my neck. That test saved my life. Great tool.
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The blood test for SjS was negative for me- I read up on the lip biopsy & decided not to go for it; my symptoms were manageable & at the time I wouldn’t have wanted any more medication anyway. It seems to be stable so I’m okay with not knowing! Ben’s Friends have a Sjogrens Syndrome group too if you want info?
Hi adriene61 ~
As far as eye problems w/ ES, as Jules said, they’re more rare. We have had a number of members who’ve had eye pain/pressure prior to ES surgery but that has usually disappeared post op. As far as visual changes go & especially once surgery is done, that’s much more rare & I would question its relationship to ES though it’s not an impossible link.
I am sorry to hear about the way your body manages calcium. That is a tough thing to live with. I hope your upcoming surgery makes a big difference. Has anyone checked you for parathyroid problems? The parathyroid is part of our calcium management system & when it malfunctions, calcium levels can become problematic.
I hope you’re able to get some answers going forward.
I too think I have Sjoegrens but 2 Drs say I don’t but never did a biopsy. SO dry.
My test was negative too. They did a lip biopsy.
me neither…everything’s dry 
…laughing, but without the tears!
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You can have a negative lip biopsy because they only sample. Regardless, if you’re super dry, you can use products such as the biotene line, or there’s medications. I’m on a medication for the dryness, and it helps immensely.
Sharon from ModSupport
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I have come to the conclusion that my weight gain is most likely due to fatigue and depression caused by the ES. I seem to have lost my motivation and find it exhausting to do tasks that I used to accomplish with ease and enthusiasm. Enthusiasm…I seem to have lost that somewhere along this journey too.
Hang in there, Shayney, you’ll get there, you’re very good at advocating for yourself, don’t give up & keep fighting 
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holding that steady pace.
In long distance running, a race is finished by continuously putting one foot after another until the goal is reached. Pace isn’t as important as consistency. You’re doing a fantastic job of being consistent in advocating for what you need. As Jules said, don’t give up - keep that consistent pace & the finish line will soon be behind you.
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