Re the Sjogrens, from what I’ve read the Trigeminal nerve innervates the lacrimal glands in the eyes and the salivary glands, so whether this being commonly affected with ES causes issues with tear & saliva production I don’t know. Other members have had over production of saliva as an ES symptom. Or maybe the inflammation caused by the styloids triggers an autoimmune response? I don’t think I’ve heard of any doctors linking the two, just something we’ve noticed a few times on here…
Hi @Brisbanite - I’m so sorry that your support system has waned & left you facing the health challenges you have alone. I know we aren’t “in person” here, but you will always have support from Jules & me & our forum members so please lean on us as hard as you need to.
The parathyroid has 4 lobes & sits behind the thyroid. Since your blood calcium level is in the normal range, parathyroid dysfunction is most likely not the culprit for your AVN then. I was thinking if your calcium level was extremely low, maybe parathyroid could be a contributor.
We may never know what’s going on w/ Dr. C but I also hope it’s not his health or someone close to him that is at issue. I hope he’s able to come back stronger and continue doing what he does so well - help those with VOO.
Elena, please check into The Sjogrens Foundation (sjogrens.org). They have a lot of information, resources and even sponsor support groups. Have you been referred to a rheumatologist yet as they are the specialty that diagnoses and treats most Sjogren’s Disease patients. Sjogren’s is always systemic (much more than dry eyes & mouth) so it’s best to pursue diagnosis to know exactly what’s going on and start treatment (as necessary). I’m a 30 years long Sjogren’s Disease patient who was also diagnosed with Eagle’s (though it’s been relatively quiet for a few years. If you have questions, please feel free to message me.
Thank you for all the useful information. I’m not thoroughly convinced yet I have this condition as my symptoms of dry mouth and sometimes eyes are fairly mild compared to what I see actual Sjorgen’s patient experience. I only gave dry mouth at night due to mouth breathing and not all the time. Dry eyes aren’t that dry but when I have bad “burning” headaches they feel they are dry. My blood work came back negative which from what I hear doesn’t mean anything. I have a f/u with Dr. Hackman next week and will discuss if the lip biopsy is warranted or not. I appreciate your input!
I didn’t pursue the lip biopsy as I read of several people who took a long time to heal from this, & didn’t feel my symptoms were bad enough to risk that, but it could be that only people who had a bad experience commented about it so I never heard about all the successful biopsies!
I’m not particularly excited about a biopsy myself as I generally heal very slowly from any wounds, bruises, cold sores etc. Plus my symptoms of dry eyes and mouth aren’t nearly as severe as a lot of people who have been diagnosed with Sjorgen’s so I’ll probably pass on the biopsy. I’ll discuss this with Dr. Hackman next week and hopefully will have more definitive answers
I just did a quick search of the nerves that innervate tear ducts & salivary glands - they are the trigeminal, glossopharyngeal, & facial nerves which can all be affected by elongated styloids so there is a chance that once your styloids are removed your dry eye/mouth symptoms may subside.
Thank you for posting this. I’d never heard of this syndrome before and looking at the website, I suffer 90% or more of these symptoms that have often been written off as “probably” related to vEDS even when that doesn’t make a lot of sense. I need to explore this seriously!
Feel free to contact me if you have more questions (Sjogrens is ALWAYS systemic - much more than dry eyes and mouth). I was diagnosed nearly 30 years ago with related lung conditions and I didn’t have “dryness” issues until 10 years later.
Bilateral styloidectomy with Dr. Hackman is scheduled for January 8th, things are getting real! I have and will be reading through all the useful preop and postop information available on this wonderful forum but if anyone has any helpful tips, especially patients who have had a surgery with Dr. Hackman, I would highly appreciate it
I’m excited for you! The day will be here before you know it.
Thank you Wendy, and that’s awesome we’re having the surgery on the same day, I hope we are able to connect if not on the same day then maybe later on post op
Great news that you have a date, and maybe even company when you go for surgery!
@slekeille has started a discussion about advice for surgery, I replied to hers and hopefully others who’ve had surgery with Dr Hackman will chip in, here’s a link in case you’ve not seen it:
Surgery is scheduled for January 8th - We’re In This Together - Living with Eagle
Thank you, Jules, I appreciate it. Good to know someone else from this wonderful community is having a surgery on the same day and with the same doc. I’m so nervous but also excited to hopefully get my life back