GUYS!!! I just returned from my appointment with Dr Karuna Dewan a few hours ago and I cannot begin to describe the happiness and relief I feel right now!!
First off, her office staff is superb. Everyone is SO kind. I got walked back to an exam room and had to wait a bit while she looked at my imaging. One of her assistants came in the room and asked me how I found her because I came from so far away. I told him about this lovely forum!! Then he told me my symptoms match clicking larynx to a T!! He told me my hyoid bone is very elongated and thatās definitely whatās causing my symptoms. He told me the clicking will go away right after they reduce it!! Then he had to do a scope, just in case, where he fed me some food and water and had me swallow, which was extremely uncomfortable. I felt so bad I was gagging and salivating everywhere lol! Then he told me about the surgery and what parts they cut off and I was like HECK YES LETāS DO IT!!
Then he went to grab Dr Dewan and yāallā¦when he left the room my mom and I sobbed tears of joy and relief. I could not believe this man just confirmed what I already knew to be true. This whole trip has felt like a dream, itās hard to describe. She came in the room and showed me exactly what she thought was happening with a model of the whole throat and larynx. We asked her a ton of questions about the surgery and she gave us so much information. She told my mom she has done well over 100 of these now and only 1 patient was still having pain afterward, who she is still working with to get some resolve. She gave me some steroid injections in that area and told me I should get some pain relief in 3-5 days. She is pretty booked out for surgery so we scheduled for October 10th. She will be taking the greater horns of my hyoid bone as well as some of my thyroid cartilage. Iām soooo okay with waiting as the mental relief will keep me on a high until then.
I am so blessed to have come across this forum! I donāt think I would have ever found her if it wasnāt for you all, THANK YOU for what you do!! I will update once I am out of surgery and keep you guys posted on how recovery goes. I know thereās not much on here about the whole process when it comes to clicking larynx syndrome. I am so happy yaāll!!!
Only unfortunate thing isā¦my job is refusing an extension on my medical leave so I will be going back to work again on the 27th of this month. Going to talk to them about getting that week off for my surgery but then itās right back to the grind! Hopefully this wonāt hinder my recovery too much. Dr. Dewan did say I could go back to work as soon as the Thursday after my surgery so I guess we shall see!
Iāve got to say, I teared up reading your post, @a_catindisguise. Iām so glad you saw Dr. Dewan, & she came through for you. She used to be in California at Stanford Hospital but left & at some point one of our members who wanted to contact her noted she was no longer there, & her whereabouts were a mystery. A while after that, it occurred to me to Google her to see if she was still in practice, & I found her in Louisiana so she got back on this forumās radar. You will be another one of her success stories!
As far as work goes, if youāre still pretty uncomfy when you need to start back, ask if you can return part time for a couple of weeks, or work from home part time & at your place of employment part time. If theyāll let you, then you can rest a bit more while at home which will be helpful.
Iāve got your surgery date on my calendar & will be praying for you!
@Isaiah_40_31 Yes she was amazing!! I didnāt even have to go into my whole story again. They knew right away what I was there for! Iām still in shock and disbelief haha. Iām so grateful to you getting her back on the list! Hopefully people that are struggling in the future can find us. I will keep my email notifications on in case someone needs my help. Iād be more than happy to guide them through the process! Thank you so much for keeping me in your prayers, it means the world to me
As far as work goes, I actually already work from home which is a huge blessing. I think I will be able to power through until the surgery and hopefully since I am young, I will recover pretty quickly so there wonāt be any issues going back when they need me.
Age is definitely in your favor for expediting healing! I was 58 when I had my ES surgeries & thought Iād rebound fairly quickly because I was super fit but it was slower than I would have liked. Isnāt that the way it goes for most of us?!
This is wonderful news!!! Only those of us who have experienced the torture truly understand the relief when a MD acknowledges what we are going through and gives us a message of hope. I had the surgery for Eagles Syndrome a few years back but it didnāt give me the relief I needed - I think I might have what you are describing and will try to connect with the MD you referenced.
Is there an easier way to contact her since I have yet to reach them with the number provided? Thank you!!!
@JPB Hi! Yes it is truly a nightmare. Iām so sorry to hear you are still having trouble.
What I did was call the contact center and they let me know she is referral based only, so I would get your PCP to write you a referral directly to her for dysphagia and swallowing disorder. This is the fax number they provided me to send the referral but just double check with the contact center rep that itās the right one: 318-698-8005. This is the contact center #: (318) 626-2690. They also have a direct line to her office if you are have more questions, and they will call you back from this number once they receive your referral to get your consult scheduled: (318) 626-0561. She only does consults 1 day out of the week, so expect to wait a little over a month. I made my appointment on June 19th and I was just seen August 13th. Gather all your scans and tests and bring them with you to the appointment. If you havenāt already, get a head and neck CT angiogram and a barium swallow study. She has a program that allows her to measure your hyoid bone and surrounding structures. Her name is Dr Karuna Dewan and sheās based out of Ochsner LSU health in Shreveport, Louisiana. Best of luck to you, friend!
@Lemontree & @ectocake - I also had that suffocating/strangling feeling after my first ES surgery when sleeping. It felt like my throat was closing or there was a wad of something blocking my throat & would wake me up. That symptom has never gone all the way away, but I only feel it now when I sleep on my back. If I get my head in extension (i.e. kind of tipped backward - chin toward the ceiling but not to the extreme) by wadding my pillow up under my neck (itās a down pillow), I donāt get the choking feeling, but if I lie flat, w/o neck extension, it almost always happens. I think itās because my neck goes into slight flexion (chin tuck) when Iām relaxed on my back & that causes my throat to close a bit or my tongue to slide back into my throat or both. I try not to sleep on my back very often because of this. What youāre both experiencing could be totally different &/or nerve related, but I wanted to share my experience.
Thereās been recent info posted about clicking larynx syndrome which involves the hyoid bone. @ectocake - you may be interested in this:
Thank you! I will make calls this week and begin compiling everything. I believe the challenge I am running into is not having more current scans and therefore it is impacting ability to provide an update to the various experts. When I tried to order another scan, it was denied by the insurance company after the pain doctor issued it.
Possibly I should try pain patches since I am in a bit of a downslide with my mental health as I maintain a lot of positivity and hope for improving and lately this has been hard to amplify in my life.
I noticed this morning that I had woken up on my side and that I wasnāt in pain. I rolled on my back to do some diaphragmatic breathing before I got up and my ear pain kicked in. Itās the ear that thereās no longer a styloid on.
I do gulp really loud sometimes. Would Dr. Hackman be able to identify this if I asked him to take a look?
Iām really sorry that happened, @ectocake! See if the pain is temporary i.e. goes away in a day or two. Have any other symptoms flared up?
If your ear is unbearably painful or the pain sticks around for several days w/o changing, definitely give Dr. Hackmanās ofc. a call. I sure hope he can help diagnose whatās going on.
In the meantime, try ice &/or heat on your ear to see if that helps relieve/reduce the pain. Tylenol or Advil could also be helpful.
Hooray for a diagnosis and a surgery for you!! I hope all goes well for you when your surgery date comes around. It is such an awful feeling and because of the constant symptoms you just cannot ājust learn to live with itā like so many doctors that i have seen. I am having my own clicking larynx syndrome surgery tomorrow, all the way across the world in Australia. Clipping of the left thyroid cornu and trimming down of front thyroid cartilage. Iām SO nervous, but excited as it has been over a year of discomfort and misdiagnosis. Once all over i will let moderators know my surgeons details to add to the list.
@F_t Yaaaay! So happy for you! Sending you good vibes for your surgery And you are so right, no way we can learn to live with this. I tried to just accept it early on when I wasnāt getting any help but itās too painful and distracting. Proud of us for continuing to advocate and getting some answers and a solution! Canāt wait to hear how everything went for you š«¶š¼
Iām so glad your surgery day is finally upon you, @F_t! Iāll be praying for you, too, and looking forward to your post op report when you feel well enough to write one.
Well, thatās surgery done. Day 6 post op now. Still swelling and pain and all that post op business, but the horrible click/crunch/catch is GONE!! Because Iāve dealt with it for a year, i have had to focus on and compensate for every single swallow, so that mental change will take a lot longer, and i just keep expecting it to return. It is very very strange. So my ENT had never seen anything like it 35 years in the business, and took out 3cm thyroid cornu that were touching my hyoid bone, as well as a few mm of the front of my larynx. I still feel the tiniest little pop at the front but no more than your ears pop when you swallow, so can learn to ignore that one. Iām not even sure if that is how a swallow is meant to feel, Iād forgotten!
@a_catindisguise i wish you all the best for your surgery, if you have any questions, feel free to ask. Stock up on meal replacement drinks for the first few days, it aināt fun to eat!!
Once Iāve had my postop appointment and chatted to my doctor, Iāll put his details up for anyone in Australia or even Asia pacific to see if need be. He is a very lovely man and has some very interesting neckties!
Iām so pleased that youāre through surgery and that it has helped your swallowing! Thatās brilliant, I have been praying for youā¦So was it your thyroid cartilage which was the issue & not hyoid bone?
Take care while you heal and hope that youāre able to eat better soon
That is indeed excellent news @F_t! I will be praying for your healing to go smoothly & as quickly as possible & even that the remaining little āpopā will disappear as the swelling goes away!
Weāll look forward to adding your doctor to our list. Hopefully he is willing!
Iām so glad your surgery day is finally upon you, 