Hey all! I’m starting to get nervous about my upcoming appointment with Dr. Dewan @ LSU. It’s coming up in a little under 3 weeks, my mom and I are flying out of state to see her and I have a lot of trauma from the other doctors I’ve seen about my symptoms, being dismissed and labeled as crazy. I’m pretty sure I have hyoid bone/clicking larynx syndrome as I’ve been ruled out for everything else. It’s miserable and I just don’t think I can handle hitting another dead end. If anyone out there has seen her for the same thing, can you tell me how your experience went with her? How does she diagnose it? So far I’ve had unremarkable head and neck ultrasound, head and neck CT and video swallow study- everything has come back normal. Is she going to require more testing? Is she quick to offer the surgery to fix it? I’m tired of trying conservative options and waiting and hoping to see if they’ll stick, just to still have no relief from this. Did the surgery get rid of your symptoms? What was the healing process like? Please and thank you
@a_catindisguise - I think you’ll find this post very encouraging:
You can try sending a PM to @notyouravg to get more details, but I’m not sure he’ll reply since it’s been a few years since he last posted. As you can see from his post, Dr. Dewan used to be a Stanford doctor. I don’t know why she moved, but I can tell you as one living in the Silicon Valley area, it was a smart move on her part!
@Isaiah_40_31 thank you! I will try to reach out to him. I really hope she will be able to resolve this for me. I’m glad she made the move…sooo much closer to me than Cali lol.
Please let us know how your appointment goes. I will be praying she can help you, @a_catindisguise.
I can’t help you with any info but I hope that your appointment goes well and you can get some help
Thank you guys, y’all are the best!! I will definitely make an update after I see her
Hello hello hello! I think I may have all the answers you are looking for
I had been off this site since my surgery 6 months ago. I ended up meeting Dr Chhetri (Dr Dewan’s teacher) who did my surgery for clicking larynx/hyoid bone syndrome. I have also communicated online with Dr Dewan.
This is par for the course. Unfortunately many docs are ignorant about this condition but instead of trying to educate themselves, they gaslight you. I’m so sorry you have had to go thru this.
Luckily for you, Dr Dewan knows everything about this. She even published a paper on this which helped me figure out what was going on with my case. She’s great! I’m so happy for you that you’re gonna be seeing her soon. She also told another person here, “Ppl with this condition finally end up in my office” lol
The CT, ultrasound and even swallow study show nothing. Especially when there is cartilage involvement. She will most probably offer you surgery. She might say that it is a diagnosis of exclusion which is how it is with these cases. Anyway, you will get surgery Most importantly, she will take your symptoms seriously. No more gaslighting lol
The healing process is long but not as severe as it is for eagles syndrome. But for real tho, just be happy you have ended up at the right person’s office. Dr Dewan and Dr Chhetri are really good at what they do.
So has the surgery worked for you @justafriend , or are you still healing? I’m glad that you were able to get help!
Yes it has worked. I have some issues on the other side too so I may need surgery on that side too but I am much better
Also, thank you asking Jules. Thank u for doing what you do on this forum. This place is amazing.
For me, since I live in India, getting a diagnosis was the biggest challenge since cartilage is invisible on CT. No doc here took me seriously but Dr Chhetri who I initially met online understood exactly what it was immediately. He’s amazing!
Thank you for reaching out to @a_catindisguise! Also thank you for your update. It’s really great that you’re doing so much better, but I’m sorry that you have some symptoms indicating you may need a second surgery. India is a long ways away, but at least you’ve found a reliable doctor here & that is worth what it takes to make the trip.
Best of luck to you @a_catindisguise! My ENT appointment for suspected clicking larynx is next week and I’m also getting nervous, also can’t take another dead end. I might give Dr Dewan’s contact details to my own ENT if he is also stumped. May all of us clickers get the medical attention and resolution we do desperately need!
I second that, @F_t , I hope that you and @a_catindisguise have a good visit and can get some treatment
I just sent a PM to @a_catindisguise!
Dr Dewan was amazing for me. She once told me something like “people in your situation will eventually find me, and I help them.” Those words rang true for me and I’m confident and hopeful she will nail this for you.
One of my old posts has links to a few papers on the topic of HBS, check them out of you haven’t already.
I never seen Dr Dewan’s paper on hyoid bone syndrome that @justafriend referenced, but I would love to see it if you can point me to it.
It’s been a few years now, but still gets me emotional just thinking about it all. Stay strong and positive and never stop being your #1 advocate.
Here is the link to those papers I mentioned:
@justafriend @notyouravg Ya’ll I am crying tears of relief reading these posts!! Thank you so much 🫶🏼 this has been so incredibly hard on me, as I know you both know personally. I‘ve been dealing with this since the beginning of March…my body and mind have been through absolute hell. I can’t wait to meet her!!
@F_t good luck to you too! Let me know how it goes and I’ll do the same we will overcome this!!
Can you send me some contact info for Dr. Dewan? I’m having trouble finding her online.
•Dr. Karuna Dewan, Ochsner LSU Health Shreveport - Academic Medical Center
1541 Kings Hwy, Shreveport, Louisiana, 1-318-626-0050
https://www.ochsnerlsuhs.org/doctors/karuna-dewan
Needs a PCP referral
Is this any help?
Karuna Dewan, MD - ENT Health
Hopefully the others can give you info otherwise @a_catindisguise @justafriend
@Dntuten Hey! Go check out my most recent post where I talk about being diagnosed. I gave a really detailed explanation on how to get in contact with her in the comments