Not sure if this is helpful for any of you out there, but after having 2 surgeries - Dr. Hackman in 2022 (removed my styloids), and Dr Yuen in 2023 (hyoid bone/nerve impingement), I continue to struggle with fullness in the throat and acute pain/discomfort.
Dr. Osbourne and I have been speaking for awhile and he is not 100% confident about the approach, but has 100% success when he goes in and cleans things up - looking for anything else that might have been missed from prior surgeons, addresses any nerve impingement issues, etc. I am considering this as an option and although it is private pay, realize that I need to try something new for improving my quality of life.
Has anyone considered this with other surgeons and had great success?
I’m glad that he’s prepared to help you, but sorry your other surgeries haven’t helped and you’re still having issues…Hopefully others will contribute about having revision surgery, @Isaiah_40_31 had further surgery with Dr Hepworth, so I’m sure she’ll tell you her experience. @bdys is in contact with Dr O as well & hoping to have revision surgery to remove surgical clips.
@JPB - I’m so sorry you’re still struggling with symptoms. I remember that your surgery w/ Dr. Hackman didn’t help you much, but I’d forgotten about Dr Yuen & the hyoid bone surgery.
I had my initial styloidectomies done by Dr. Samji & had good nerve symptom recoveries, but I had progressive hearing loss in my left ear which was passed off as Meniere’s Disease. In the end it turned out most likely to have been caused by internal jugular vein compression on my left side. Dr. Hepworth decompressed my left IJV last Oct, & my hearing loss has ceased to progress, but unfortunately, it had gone on long enough there was no hearing restoration. I’m seeking the next step for the chronic tinnitus I’ve had since 2019 after an inner ear surgery done by a different doctor that was an effort to slow/stop the hearing loss then by installing a shunt in my inner ear. Seems for some of us, the “fun” never ends.
I highly recommend you request that Dr. O refers you for a FIESTA MRI to look for nerve impingement(s) in your neck prior to having an exploratory clean-up surgery. It would be better for Dr. O to have some idea about what he may be looking for before he’s in the midst of surgery.
Additionally, if you haven’t had a CT w/ contrast of your neck in a while, it would be worth checking your internal jugular veins & internal/external carotid arteries to make sure there is nothing causing compression or irritation of any of those. We’ve recently had a couple of members whose carotid was compressing the IJV or vice versa, so the styloids weren’t even involved. Other soft tissues can also cause vascular compressions thus it’s worth looking into before another surgery.
Thank you for the recommendations!! I really appreciate all of your feedback and find peace in collaborating with others. I find solace in participating in self care and turning my life over to a higher power. Pain is my old friend - it never leaves my side, and loves to bother me at the most inconvenient times. But, I choose to live and to focus on the good around me even if inside my body is screaming. Life is beautiful and living it with those I love makes it even better!!!
What a great mindset, @JPB! That will definitely help you cope better with the pain you still have. Do you mind sharing one more time what pain/symptoms you have left that is unresolved?
Thank you, @Jules, for sharing this with @JPB about me reaching out to Dr O. In my case, I am hoping for revision surgery due to unnecessary multiple surgical clips, plus @TML pulled up and annotated on the findings in the images that I couldn’t find in my portal. I am shocked to discover that it is not convenient or safe to have multiple surgical clips that are too close or compress on the IJV and ICA in my neck. There were no surgical clips on my left side before I received the left styloidectomy with CC1 Transverse. There was no mention from the ENT surgeon or his team about the surgical clips before or after the surgery. It is just like with the neck fusions that I have, which are questionable and need to be addressed. Now, I have both fusions and ES. I will still keep everything as much as I can, and I will continue to get help and support from this group while I am waiting and making progress. My only fear is that without a warning, my neck and throat will stay in pain and compression that seems not to stop when moving to compress, poke, and so on. I have no control. The medications do not resolve or cure the condition, except to mask the symptoms. They are less effective because the ES does not resolve on its own until the surgery, provided the ES surgeon performs it properly with expertise and extensive, knowledgeable skills. Not easy. Without this group, I would not have been aware of or done, but I would have struggled, frustrated, and maybe even given up. I am a fighter at this point because of the wording I have to find and convey to doctors, specialists, surgeons, and countless medical professionals. 99% of these medical professionals are clueless and have given me and other patients misdiagnoses and mistreatments. Now, my body feels tired and weak, despite my vitals, blood work, and images being fine, normal, and proceeding as expected. ES is an array of symptoms caused by nerve irritation and compression that occur when we move, turn, and walk. If I am not making sense in any way, please help me. Sigh.
Thank you for sharing more about your condition and the corresponding journey.
I am sorry that there is no quick fix at this time. I definitely understand what it feels like to be exhausted - for me it is the neck pain and pressure along with the choking sensation that ripples through other areas of my life crippling me. Some days I have little to no energy and have to will myself through the activities in front of me.
Is there anyone on this forum that have worked with Dr. Osbourne for clean up procedures since he said he has had 100% success rate? For the clips - I don’t think I know what those are.
Metal surgical clips seem to be used sometimes during surgery, but luckily it isn’t common! We have another member who is having issues as well as @bdys with the clips.
Dr O has helped lots of members with surgery, but I can’t think of anyone off-hand who has had revision surgery with him. @loki has posted several times speaking very highly of Dr O about his recent surgery experience.
Don’t give up. Find a surgeon who will do an excellent fit for your needs. If you know who and which, then do so. With your throat tightness and choking, ES can contribute due to nerve irritation and compression. I am not a doctor, but I don’t know if you have other issues that might have caused your choking. As for Dr. O, he gives the sense of going inside your neck, much like a medical examination to see what’s there. Dr. O will be thorough if he sees something before performing the procedure. Right now, I am waiting for a neurosurgeon whom Dr O referred me to because of my history with neck fusions, and he saw the image that shows brightness. Dr O wanted to get some clearance with this neurosurgeon before moving forward with the next step and plans. I don’t have all the answers until then. Talking about the multiple surgical clips, it was for the left styloidectomy procedure I had last April. See below (before and after the procedure). It is clear that the surgical clips are in the way and compress the nerves and other structures. I was shocked to see this. Dr. O saw this and said he doesn’t usually use surgical clips when performing a styloidectomy. He was baffled by what my local ENT surgeon did. I hope to hear something soon. I am trying to be patient.
Hi, have you also done sleep testing to check for sleep apnea? I have a lot of those symptoms, globus sensation, trouble swallowing, throat pain, choking on food and pills, terrible sleep issues… I have ES and sleep apnea and reflux from gastroparesis like symptoms.
After my surgeries with Dr. Osborne three weeks ago my reflux has already gone down in severity, helping with some of my throat irritation, but ultimately I still have sleep apnea and a small airway, and I may consider surgery and/or orthodontic skeletal expansion to try to address these issues. I am sleeping a bit longer without waking up so frequently after my surgeries also, but I still wake up a lot in the middle of the night.
@JPB, question about private pay. Can you explain what the private fee is and how to pay it to Dr. O? Do you have insurance that covers out-of-network services, or is there an alternative? I am trying to understand and am learning. One of my clients will help me to raise some money for the procedures if necessary. Of course, my health insurance will help me with both out-of-network and in-network costs, and also with staying. First, I have to wait until I know what the plans are before doing all of this. I just wanted some understanding and preparation. I am working hard as a pet sitter. My husband is my helper until I get my life back. I plan to create a video of my journey and share it with others to raise awareness of ES and similar issues. It takes time to get together. Currently, I have to focus on two major tasks that my husband and I need to complete before the end of this month. It is hard.
I’m sorry for your situation - it should have gotten better.
What you are describing with your throat I can refer to. I had that several times too, I’d say - only for several seconds in my case. I think that were so called “laryngospasms” where the vocal chords cramp. Usually a protection mechanism. Very awful feeling though.
I wish you the best of luck with your decision. It’s great that you’re gathering all the information and talking to others. In the end, trust your gut and know that you’ll make the right choice for yourself. I’m rooting for you!
@loki - Not sleeping well after ES surgery is pretty normal. It took me a couple of months to get back to being able to sleep nearly through the night though I’m not a good sleeper in general, it was worse right after each of my ES surgeries. The fact you’re seeing some improvement in being able to sleep longer is a good sign that it may get even better as your throat/neck swelling continue to decrease.
I hope that whatever Dr. Osborne plans in order to help you, makes a HUGE difference & resolves the problems & pain you’re having. Please keep us updated especially if you decide on surgery & have a surgery date. I am praying for you to have wisdom regarding the best next step.
I just had bilateral styloidectomy with Dr. Osborne last month in November. The fee is 67,500 dollars for both sides. If you’re only doing one side it’s roughly half that. You can pay via various methods, by wire, by check, I can’t recall what else but his office will tell you all the payment options.
And when I say $67,500 that also includes the anesthesia fees and hospital facility fees and pre op and post op visits. The only thing it doesn’t include is the painkillers and antibiotics you pick up from the pharmacy.
