With a heavy heart I reach out as I look for support today. I have tried so many different things and thought that I was improving until recently (the last few months), things progressively worsened.
I am normally a positive person, and for those of you who know me through my social media posts, speaking engagements or entrepreneurial journey, you have seen my smile throughout the years and desire to always see life with a glass half full. I smile when in pain. I smile even when I want to give up. I smile while I listen to other’s problems/concerns/challenges even though I have my own issue that most don’t know about it. I just keep smiling.
Today, I feel depleted.
I had bilateral ES surgery with Dr. Hackman 2 years ago
I was on 50 mg of amitriptyline for the past few years but it stopped working 3-4 months ago
I was taking CBD/THC pills at night - I think 5mg (low dose) and that helped too for years but always made my throat feel worse the next day. I wish it didn’t hurt the next day because it actually takes the pain away for 8 hrs if I take it.
I have tried GERD medicine on and off for years
I receive injections in the neck at Northwestern
And so, so, so much more.
My continued symptoms -
I feel like a golfball is in my throat all the time, that someone is strangling me, I can’t sleep without trying to prop up my pillow, I feel like someone scrapped my throat with a fork over and over again, I feel like I just threw up and so forth. Eating is no longer pleasurable.
Any recommendations that have worked for all of you, I am happy to listen to and consider. Any specialists that you think I should call, I am open to that too.
Recently an MD tried me on Hyoscyamine but that didn’t help. They want me to consider Cardizem next and even Viagra which for some reason they believe can help the throat issues. I am not sure if this is just a new GI practices attempt to find something that helps.
Thank you!!!
I am going to sign off for a bit to try and meditate. It’s so very hard to be optimistic when you never have relief :(. I wonder if I should scan my throat again or go back to Dr. Hackman or…the search continues.
Hi @JPB - It’s good to hear from you but not! I’m so sorry for your need to post due to symptoms that are plaguing you again & that medications which were helpful no longer are.
My first thought was that maybe you have Hyoid Bone Syndrome (elongation of the greater horns of the hyoid) which can have symptoms very similar to those caused by ES. It’s sometimes missed if it occurs in conjunction with ES. My second thought was that it would be worthwhile getting a new CT scan to see if you’ve had some styloid regrowth since your surgery. It’s rare but does happen.
I think thought #2 is a good idea because it would show your styloids & hyoid & perhaps something will show up that will help explain your pain. If your hyoid appears to be involved, Dr. Dewan in Louisiana is the expert in your part of the country. It might be worthwhile contacting her for an opinion regardless:
•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
So sorry that you’re suffering again, that’s so tough for you…I agree with @Isaiah_40_31 & your suggestion that you get another scan, there could be regrowth…Did you have any relief post surgery, or did you still have symptoms- I’m so sorry, I know that you’ve been regularly posting & have been a great encouragement to others but my memory seems to have failed me If you did have an improvements in symptoms then it could be regrowth or otherwise scar tissue compressing nerves… I you’ve always had symptoms even soon after surgery then as @Isaiah_40_31 has suggested it could be hyoid bone syndrome which was missed before? There have been a few discussions about it which you could search for, and there are some research papers about it…
I hope that you can find the answers and find something to help your symptoms
I am hopeful that it is Hyoid Bone Syndrome and will call Dr Dewan on Monday to schedule an appointment in August if possible. I will also reach out to my pain MD and ask for an order for the CT scan.
For a while I was working out a lot which was amazing and I am not sure if some of the weights made things worse or my throat. Either way, it is very difficult to think about living another 40-50 years with a golf ball in my throat. It never stops - never leaves me a lone - never gives me freedom to just enjoy the moments (including my daughter’s wedding this upcoming week) - instead my mind always drifts back to the pain and discomfort and I mask it with others.
Yesterday I went to the urgent care and the MD wanted to give me flexural and Lyrica. I told him the other nerve med stopped working and Lyrica, like the others, causes me to be bloated. Fun :). But, I need to do something to find some relief until I head to Northwestern on the 15th for injections.
Thank you again - this forum and your support is life saving!!!
Oh, I also noticed on other forums that people tried the following - is there any benefit with these?
I had some relief post surgery with the amitryptiline and the CBD/THC, but things were never perfect of course and the pain would build up throughout the day. Something changed 3-4 months ago and progressively worsened.
I am going to review the hyoid bone syndrome and see an expert for that. I will see what I can find by searching for this here on this forum.
Thank you again - I really appreciate your time in responding!!!
Also, if you can send me the list for MDs that specialize in the hyoid bone surgery, I would appreciate it. I am in UT and noticed there was someone here on one of the posts years ago and maybe I can schedule with them while I am here for 7 days.
Congratulations on your daughter’s upcoming nuptials!! I hope you have a good day that day so you can enjoy the ceremony & reception. Maybe the joy of seeing your daughter get married will help distract you from your pain/discomfort.
The doctors I know of who deal with Hyoid Bone Syndrome are Dr. Chhetri at UCLA Med Ctr. in California, Dr. Cognetti in Philadelphia, & Dr. Dewan in LA.
Dr. Marshal Smith is the only doctor we have listed for Utah. He’s in Salt Lake City & did thyroid cartilage surgery for one of our members. That may bode well for him also doing hyoid bone work. Here’s a link to his contact info. There are several phone numbers. I’d probably pick the first one (LDS Hospital in SLC) to try. Marshall E. Smith | University of Utah Health
For easy access, here’s the link to the Doctors List:
Lexapro & Duloxetine/Cymbalta (Cymbalta is a brand name for Duloxetine) are anti-depressants. Klonopin is a sedative/anti-anxiety med. Anti-seizure or anti-depression medications are what most doctors prescribe for nerve pain (Gabapentin & Amitriptyline are examples of anti-seizure meds). Some doctors prescribe a muscle relaxant such as Flexeril or Baclofen to help reduce pain.
I reached out to the SLC MD and sent them a summary of my condition. It is so weird how painful to the touch my throat and back of neck are - it’s almost like something is torn or broken in there which makes me think the hyoid bone syndrome might be the problem. I am willing to have surgery to remedy and hope I can find an MD that will respond to me and assist.
On the list provided, it didn’t seem like there were a lot of hyoid bone experts unfortunately.
Thank you for the overview on the medicines too!!! I notice some mentioned a transdermal patch on - has anyone tried this that you know of?
Have a great week!! Back to work on the wedding now :).
May I ask a couple of questions? Do you experience any jaw pain or shoulder/chest pain?
If you did have an improvements in symptoms then it could be regrowth or otherwise scar tissue compressing nerves… I you’ve always had symptoms even soon after surgery then as 
