Looking for some guidance from the ES community with more experience in this area. I had surgery 3 weeks ago which I understood was to remove the stylo-hyoid ligament and as much of elongated styloid process as possible. I should have read the fine print more carefully because it was labelled a stylo-hyoid ligament release and in the end this is all that happened. I have bi-lateral elongated styloid processes that extend to the “ramus of the mandible” which I think would make them about 4 - 5 cms long but I haven’t done anatomy and the radiographer didn’t provide measurements. I have only ever had symptoms on my right hand side.
On the CT/MRI scans the styloid ligament looked calcified so my ENT/Head Neck Surgeon and I agreed that he would remove as much of the calcified right side ligament and styloid process as he could without risking nerve damage. When he actually got in there the styloid ligament apparently was not calcified just over tight so when clipped it sprung back into the neck tissue. The surgeon didn’t want to chase the ligament back due to the risk of nerve injury etc etc so he sewed it all back up and left it at that.
Part of the back story is that I am only the second ES surgery my ENT/Head Neck Surgeon has performed solo. He completed some of his fellowship training in the US and was a part of 23 operations there. There are not a lot of doctor options in Australia - only 3 surgeons here have any experience with this and the most experienced has only done 5 of them (the down side of living in a country with a small population of 23 million and a rare medical condition)
So the surgery has resolved some symptoms but not all and I now have some new ones. I am wondering if those of you with more experience might be able to provide some insight into what might be happening. The symptoms that have resolved with the surgery three weeks ago are: now able to control the back of my tongue so can swallow food better, my tongue does not feel like it is being pulled out of my throat through my stomach anymore, able to sleep without the wedge and three pillows, the constriction at the top of my throat has gone and so has the pulsitile tinnitis when lying down. The symptoms that have not gone away are the feeling of something sticking into the right side of my throat, food getting stuck lower down in the oesophagus, right hand side sore throat and fullness/pressure in my right ear. The symptoms which have started since the surgery are shooting pain through my right hand molars to behind my right eye, earache, the sound of water swishing in my right ear after swallowing and backache upper right hand side.
I understand that the ES community are not medical experts but I am interested in your personal experiences and opinions. Am I just being ungrateful for the symptoms that have resolved? Are the symptoms that haven’t resolved and have started since the surgery likely to settle as the healing process continues? Could the symptoms be due to the remaining ligament irritating nerves/tissues? Could the symptoms be due to irritation from the elongated styloid - apparent now because the ligament has been released? Is this just normal healing after ES surgery which no doubt also irritates nerves and tissue. Should I be suggesting to my surgeon at the six week check up that it might have been better to remove the ligament and reduce the elongated styloid process?
Thank you in advance for any information or insight you may be able to share.
Angelmum
Angelmum, that’s all a worry… Such a shame that while he was doing surgery he didn’t shorten the styloid process as well! Then you would’ve had more idea of what’s causing symptoms…it is very early days yet after surgery, & it’s good that some of your discomfort has gone. Whether the ligament was calcified or not, it sounds as if it was pulling tight & restricting swallowing, so it’s good that things are moving more freely now.
The nerve pain you describe post surgery is hopefully just irritation & should settle when the swelling goes down. Don’t know if your doctor monitored nerves during surgery; it’s often done so they know if the nerves are being stretched too much? Nerves can take several months to heal, even up to a year so these hopefully will improve. It sounds as if it’s either the facial nerve of trigeminal nerve causing the shooting pains. Not sure about the swishing in your ear- it could possibly be a nerve thing too- after my 2nd surgery I felt as if one ear was blocked, & even got it looked at, but it was all clear so must’ve been just a nerve, that went after a couple of weeks.
As for the remaining symptoms, it’s a difficult one- they could be due to the elongated styloid process still, but I guess the only way to tell is to wait & see, sorry but can’t be any more helpful than that! The feeling of something in the throat is a classic ES symptom, so it could be caused by the styloid still. I wonder if as your styloid is long, maybe the angle & length it was growing caused the ligament to get tenser & tighter, which could’ve been compressing some nerves & blood vessels. It’s strange that it appeared calcified on the CT, but not to the surgeon? If it’s not calcified, then leaving it in shouldn’t cause a problem- mine weren’t calcified so were detached & left in, & don’t seem to have caused any symptoms.
All I can suggest is that you see if anything else improves in the mean time before your follow up appt. And it depends on how badly you’re affected by what symptoms you have left as to what else you do. I would be wary of having further surgery just to remove the remaining ligament, hopefully that’s not causing the problem. But if the symptoms you have left are affecting your quality of life you could see about another surgery to shorten the styloid, but again if the doctor isn’t confident about doing this then I would be wary, it’s strange that he didn’t do that while he was doing the surgery.
Will pray that you continue ro improve & heal well, & for wisdom at your next appt. And sorry that it’s not easy to give you more helpful answers! Best wishes & gentle hugs…
Sorry that you are having difficulties…at 3 weeks post-op I seemed to have worsened and was rather discouraged until I had a stern discussion with myself and decided to be gentle and patient with the healing process. I had to readjust my mindset to focus on the positive outcomes of the surgery. It is major surgery and an insult to our bodies. I had similar symptoms that you described that at my current 7 week post -op state are TONS better. I think some nerve issues flared up probably because I over did it or they were just going to happen. My swallowing was off and seemed difficult for awhile-probably because of the lack of the ligament but it is good now. My ear issues and molar issues better but were worse when I tried not using the wedge pillow so I keep that up yet. Sometimes it is trial and error for what helps, and how things feel that particular day. Like Jules said, it can take many months for nerve pain to subside. Lidocaine in a roller ball helps me…the patches kept falling off. I send positive thoughts and prayers to you along with a gentle hug.
Your reply has also helped me. I’m 10 days post op and I can say that I dont feel the stab of the Styloid in my throat but the burning in throat and back of tongue pain remain (on and off, mostly on) And I now have additional pain in other parts of throat and jaw and numbness on face up to top of ear. Dr said he needed to move some nerves to the side to protect them and that he expected some numbness. Frustrating as I really can’t say surgery was successful yet except I guess the main point of getting the bone away form the nerves. If anyone else has input on their recovery time please let me know.
10 days in the grand scheme of healing, especially in nerve related pain and issues is a small blip.
My surgery was June 17, 2019 - external left side. Like you, I had immediate relief from the poking pain in my throat, but much of the other pain came and went. I also had additional pain and terrifying symptoms that were most likely related to aggravated nerves.
Nerves take the longest to heal. I can say that I truly felt better at the two month mark. I need the right side out but because of all of my issues first go around I will wait until January or so.
I’m on board with everything Jules & the other members have told you. I do feel that your remaining symptoms (especially the poking in your throat) are because your elongated styloid is still there, but as Jules said, since the s-h ligament has been released, some or all of the nerve symptoms could go away. The two month post op mark was a momentous time for me. I didn’t feel perfectly healed, but I did have a good idea of what was going & what might stay at that point.
I think it’s a good idea to talk to your doctor about your concerns when you see him next. It’s true you don’t want someone who doesn’t feel confident in him/herself working in that area of your neck, but you also don’t want to live w/ chronic pain for the rest of your life. It is a tough situation.
3 weeks now, still pain that moves around from the back of the tongue to the throat to the jaw area and then back around. Strange how it moves. Throbbing and burning. Also having rough patches in mouth. Sometimes seams worse then before the surgery. Anyone input welcome I have post-op on Monday, Not sure what else the dr will tell me. He has already suggested i go to a pain mgt Dr.
As the nerves heal, they can get “fired up” & pain can get pretty intense. If you have bilateral ES & have had only one side taken care of, the remaining styloid can begin causing problems soon after the first surgery & it can cause “cross over pain” to the side that just had surgery. If you have an elongated styloid remaining, having it removed should help a lot w/ your nerve pain.
Post op, pain can come & go for 2-3 months. By that time, you’ll have a good idea of how you’re healing. You’re still on the early end of recovery. My post op pain & symptoms were pretty well gone by 6 months post op & some not till 9 months. If your pain continues to be so intense you can’t function, then you can talk to your PCP about who to see for pain management, or your PCP can give you an Rx for nerve pain meds to help you through this time. There are a number of different ones, & you might need to experiment to see which one works best for you. Doses start low & gradually increase to the point where you feel relief. This process can take up to a month or more so isn’t a “quick fix”.
Thanks, just one side. My expectations were that I’d be relieved of pain soon after operation. Darn expectations. But I have head some people do get immediate relief. As I have said, I did feel the stabbing in my throat from the bone go away just not the other referred pain.
ronowe -
Some people do get immediate pain relief, but your situation is more common post op. ES surgical recovery is a “game” of patience. Listening to your body & taking it easy on your more uncomfy days will help your body heal more quickly. Pushing through pain creates stress & slows down healing. I’m a “doer”, & I pushed myself too hard too soon & paid for it w/ slower recovery.
Thank you everyone who responded to my earlier post. Your advice and guidance has been very reassuring and helpful. I took Kay’s advice and propped myself up on more pillows which did reduce the trigeminal neuraligia. The discomfort and pain is slowly reducing week by week but, as others have pointed out returns, if I have a particularly busy day or do a lot of lifting and talking - so a heads up to slow down and rest more. I still have a significant amount of internal swelling which is affecting my swallowing and vocal cords at the end of the day. My ENT’s nurse practitioner said it can take up to 12 weeks for internal swelling to resolve so I am hopeful that these symptoms will disappear around the 3 months post-op mark.
As everyone has pointed out recovery is a game of patience. Although this is difficult because it has taken so long to get a diagnosis and finally treatment another few months in the grand scheme of things is not so bad. The up-side of being busy is that the days and weeks pass quickly. So thank you everyone for your kind words, prayers, gentle hugs and being there to provide support for those following in your footsteps. It would be a much longer and more lonely journey without you - blessings to you all.
Angelmum
What a wonderful post, Angelmum. Thank you for encouraging all of us as we work to encourage you & the many others who have found themselves dealing with ES. I found 8 weeks was the “magical” post op period for me, but by 12 weeks, things were even better, & by 6 months, I felt pretty normal but w/ a few nervy twinges still happening. By a year, I was about 95% of normal & there I’ve stayed. That’s good enough for me! You’ll get there, too. You know what to do - listen to your body, take it easy when it asks you to, & you will feel much better before you know it. Busy days are good days. As you noted, they make time pass more quickly, but we do need to learn how to navigate those days effectively w/o wearing ourselves out when we’re in recovery from ES surgery.
Very glad that things are improving for you, & that you’ve found the site was helpful! Interesting comment by the nurse practitioner that it can take up to 12 weeks for internal swelling to go down! We’re all impatient!
Glad to hear that you are making progress! I have wondered how things were going. Interesting that the NP said to expect 12 weeks of swelling…makes sense because of all they have to move and do in our poor necks. Wishing you continued improvement! Thanks for the update!
Just returned form 4 week post-op. Dr said that my pain was not unusual and that it may take a few months for nerves to calm down. He also explained to me some of the things they needed to do like moving muscles in my jaw which is why I feel pain there now and that the new numbness in my ear will be a good gauge overtime on how nerves are calming down. I also went to a Pain Dr and she gave me nortriptyline to help calm the nerves and said it will take a few weeks for that to kick in. Anyone have experience with that Med?
Still having severe pain mostly in back side of tongue but feel mentally better with members feedback and two Drs telling me to think in terms on months for recovery
Some members have had pain relief with nortriptyline, yes. If it doesn’t help then there are other nerve pain medications to try. I take Amitriptyline, it helps alot. Hope it does work! & glad that you feel a bit more reassured now!
I’m glad for your good post op report & for your doctor’s encouragement to be patient. Sometimes it can take a month for the nerve pain meds to begin helping so prepare for some patience w/ that as well. It sounds like your pain doctor gave you some warning about that, too. I also hope it really helps!
