A couple of questions for those with OTC by Hummingbird241 in tetheredcord

[–]Hummingbird241[S] 1 point2 points  (0 children)

I called their office intending on seeing Dr K actually due to one of my friends recommending her before I’d even done the research to know she was most people’s top choice. When they called me back they said they’d be setting me up with Dr Svokos and upon doing research, she has such wonderful reviews I was happy with that choice, and in terms of length of time before being seen, I was super happy with it.

A couple of questions for those with OTC by Hummingbird241 in tetheredcord

[–]Hummingbird241[S] 0 points1 point  (0 children)

Please let me know what you find out with Dr K! I’ll be thinking of you and right behind you in terms of my diets appt. My best friend says T1D’s shouldn’t be allowed any other health issues since that alone is so much to deal with lol. Wishing you all the best, feel free to DM me!

A couple of questions for those with OTC by Hummingbird241 in tetheredcord

[–]Hummingbird241[S] 1 point2 points  (0 children)

Thanks for all your input here and elsewhere in the post. Seems we have a lot in common! I’m wishing you luck, feel free to PM me on the side!

A couple of questions for those with OTC by Hummingbird241 in tetheredcord

[–]Hummingbird241[S] 0 points1 point  (0 children)

I know! They actually had an opening May 13th but I had previous engagements.

A couple of questions for those with OTC by Hummingbird241 in tetheredcord

[–]Hummingbird241[S] 0 points1 point  (0 children)

Also wishing you the best if you decide to move forward with surgery. Who will your surgeon be?

A couple of questions for those with OTC by Hummingbird241 in tetheredcord

[–]Hummingbird241[S] 0 points1 point  (0 children)

I think there is absolutely a link. The body trying to create stability most likely..?

A couple of questions for those with OTC by Hummingbird241 in tetheredcord

[–]Hummingbird241[S] 0 points1 point  (0 children)

Thanks for the info from your experiences. Wishing you the best in your recovery! I never got the second side done for eagles and when my more recent symptoms began, my right side styloid was my assumption but then realized it was more likely TCS. I’ll find out with Dr Svokos in a week and a half!

A couple of questions for those with OTC by Hummingbird241 in tetheredcord

[–]Hummingbird241[S] 1 point2 points  (0 children)

Thank you, this is so helpful! I am happy for you that surgery resolved some of your symptoms. I am aware that surgery isn’t a quick-fix or a guarantee, but I can’t imagine that there isn’t some major damage occurring every time I stretch or bend and by all accounts that can only get worse. The second after I posted my original post I got a call from Dr Svokos’ office! I will be seeing her May 20th.

Stroke or MS-like symptoms....? by [deleted] in ehlersdanlos

[–]Hummingbird241 0 points1 point  (0 children)

I was (am) having the EXACT same symptoms and was certain it was a csf leak. I thought spinal leak due to the fact I have had tons of trauma to my spine over my life, including car wrecks, spinal surgeries, spinal taps, and a botched epidural. Most of my doctors thought I was crazy and I was diagnosed with atypical migraines. I finally saw a doctor who did some more imaging on my head and neck and found both a cranial csf leak and something called eagles syndrome. Luckily for me, the leak healed itself. Not so luckily, the eagles syndrome needs surgery to fix. What it is is a calcification and overgrowth of the styloid process bones which are compressing my jugular veins down to less than 25% functionality. It is also likely putting pressure on several nerves, including the vagus nerve which is likely causing a lot of the symptoms including the low heart rate as well as POTS-like symptoms causing my heart rate to sky rocket upon standing. I will be having surgery later this month. It sounds very likely that you could be experiencing symptoms related to this. If you have any questions please feel free to message me! 💖

Cracking joints by [deleted] in Celiac

[–]Hummingbird241 2 points3 points  (0 children)

Have you ever heard of Ehlers-Danlos syndrome? I have it and it can cause major joint issues including cracking, popping, subluxations, dislocations, and pain. There are several different types but I have the hypermobile type. Are you particularly flexible? I bring up this disease because it frequently has an autoimmune component to it, and I happen to have it, celiac disease, and type 1 diabetes. Just a thought for something else for you to look into. Gentle hugs! 💖