4 months after surgery bilateral styloidrectomy

General
1

This is about what’s on my mind and how I’m feeling 4 months post op. I have questions so I can see if I’m in a normal place or if I should be better.

My doctor (Dr Hackman) said I should be able to open my mouth by now. He suggested stretching it wide as I can a few times a day. I’ve been doing it for 2 weeks with no improvement. I can barely open two finger widths, just enough to get a fork with food in. I don’t have any jaw pain it’s just that’s how big it opens even with stretching it. Before surgery I had normal mouth opening.
Also when I open it hits my incision area on my neck and the muscles there do feel tight.

I also just don’t feel good yet, I’m still very sore everyday off and on. Definitely numb. And a lot of other symptoms that haven’t resolved yet. Can symptoms that were there before surgery still get drastically better later (I’m 4 months post surgery), I’ve been feeling down that the surgery hasn’t helped more than it has. Far off from the person I was 3 years ago when this all started. I’m 39 years old mom of 3. Always healthy and never went to the doctor prior to this.

Lingering symptoms:
-Swollowing is different than before eagles, still have a thud in my throat/ears, tight feeling back of throat.
-clicking in neck (around hyoid) especially when muscles are tight in the morning when moving head or speaking. (Getting updated ct soon suspected hyoid issue)
-just overall tired (mentally and physically) and sore on my neck around hyoid muscles and tightness on incisions.

Improved after surgery :
Bone jabbing feeling that was in one area better/sometimes burns still in that area but not as bad.
Ear pain/ improved but not perfect
Mastoid bone pain seems better
I can sleep more comfortably in any position and sit on the couch without it causing extra pain.

2

I’m very sorry to learn that you’re still feeling pretty miserable at 4 mos. post op. Having your jaw still that stiff 4 mos after surgery is not normal. Usually that resolves w/in a couple of weeks to a month post op. Have you gone in for any PT or myofascial massage therapy? Either one of those might help reduce the muscle tension you’re feeling in your jaw & neck & could possibly help with your jaw mobility. I suspect there are also massage videos on YouTube for jaw stiffness which you could try. You can also do gentle fingertip massage on your incision area using lotion, Bio Oil, vitamin E oil, coconut oil or the like as a lubricant on your finger tips to keep them from dragging on your skin. Massaging your incision several times a day (I know you’re a mom so this may not be possible) would also help w/ the tightness you feel in that area.

If you have access to a chiropractor who does mouth/jaw work, that might also be another resource. I used to see a chiropractor who does jaw work. He massaged my jaw muscles on the outside which was always painful, then, because I could open my mouth, worked on the internal muscles at my jaw joints also very painful. I’ve had TMJ issues for years & have had the opposite problem to you i.e. my jaw would lock open when I yawned. I used to see him once a month which helped tremendously. After my last ES surgery (10/24), I haven’t needed to go back.

It can take 12+ months for nerves to fully recover from ES & the surgery. I found I had some symptoms that were gone or reduced about every 2-3 months after surgery, up through a year. By 9 months post op most of my symptoms were significantly reduced or gone. I have First Bite Syndrome that has continued to decrease over the last 10 years which tells me the body keeps working at recovery.

Your lingering symptoms do sound like you may have something going on with your hyoid bone. If your imaging shows the greater horns of your hyoid are elongated, angled oddly, or thick, Dr. Dewan (•Dr. Karuna Dewan, Ochsner LSU Health Shreveport - Academic Medical Center - Specializes in Hyoid Bone Syndrome surgeries -
1541 Kings Hwy, Shreveport, Louisiana, 1-318-626-0050
https://www.ochsnerlsuhs.org/doctors/karuna-dewan) is the doctor you want to see. Hyoid bone surgeries are among her specialties.

Being tired mentally & physically isn’t unusual when you’re suffering from pain & other body dysfunction as well as after a major surgery added to parenting 3 children. You have A LOT on your plate. Though I’m glad you’ve had some post op improvement (especially better sleep & being able to sit relaxed w/o pain), I also understand your discouragement because of slow recovery & the addition of swallowing & clicking symptoms that are setting you back.

I expect you’ll see further nerve recovery/symptoms reduction as the months pass, but you may need to be proactive with getting help for your jaw stiffness. Please let us know what your next CT shows regarding your hyoid.

I’ll pray for your recovery to continue more obviously. :hugs:

2 Likes
3

Thank u for responding!
I haven’t been to any PT sessions or anything yet for my jaw. I’ve been them the so many times before being diagnosed with Eagles and never got much help but maybe with this problem they can help me. It’s worth a try.
I message the outside of my neck and incisions at least 2x a day.
I got my PCP to refer me to Dr. Dewan for a second opinion (Dr. Hackmans opinion of hyoid bone surgeries is that the outcomes aren’t as good as Styloidrecomys, and he said it’s harder to diagnose). Dr. Dewans front desk told me they can do phone consultations so I hope that is true. She is 9 hours from me, is she the only and best one to see? I live in Georgia if there’s any closer:)
Really nervous thinking about another surgery when I haven’t even recovered from this one. I haven’t got to hear from anyone that said it’s easy to fix or the outcome or shortening the hyoid won’t cause other problems, or that I’ll have another surgery and still have clicking or it cause more pain. All the worries……:pensive:

1 Like
4

I’m glad you’re massaging your incision area. That’s good & will be helpful in the long run. I’m expect PT prior to your ES surgery didn’t help because your symptoms were being treated rather than the cause (elongated styloids) & the cause would just recreate the symptoms after your PT sessions.

I’m glad you’ve been in touch w/ Dr. Dewan’s ofc. There is no one closer to you. Dr. Cognetti in Philadelphia is the next closest doctor I know of who does HBS surgeries otherwise there’s a doctor in Salt Lake City and one in Los Angeles.

We have two members who had HBS surgeries toward the end of last year - @a_catindisguise w/ Dr. Dewan & @F_t w/ a doctor in Australia. Both have said the recovery has been on the slow side, but both are feeling a tremendous amount better. Dr. Hackman’s opinion about surgery for HBS may be based on patients who didn’t see experienced hyoid bone surgeons just like we have members who had poor outcomes from ES surgery when they saw surgeons who weren’t experienced or were too conservative & didn’t remove enough of the styloid(s).

Here are a couple of links to discussion threads for you to read:

3 Likes
5

I’m so sorry that your symptoms haven’t improved as much as you’d hoped… @Isaiah_40_31 has given you good advice, so can’t really add anything else to that, I would just say that we definitely have had members who’ve come back on after a year to say that symptoms were still improving, so there is still hope!
I don’t know how my jaw was before surgery, my dentist recently commented on how I can’t open my mouth very wide, I didn’t think to question them about that, I hadn’t realised I was any different to anyone else, I know after surgery I couldn’t do my teeth properly etc for a couple of weeks, so it obviously has improved on that but maybe not completely, I don’t know…but certainly it should have improved enough by now to eat properly for you. Hopefully @Isaiah_40_31 's suggestions for therapy will help you. Sending you a hug and prayers :hugs: :pray:

2 Likes
6

I can eat properly just have to squish down hamburgers and subs to fit them in my mouth. I don’t have any jaw pain so it’s strange that it just seems like my new mouth size.
All the pain and muscle tightness is around my hyoid and incisions. I’m trying to stay positive bc it’s obvious that I still have a lot of recovering to do. I’ve been feeling anxious and depressed this week thinking I may have to continue trying to figure out what’s wrong. I’m hoping that any pain I feel is all from the surgery still but I get really discouraged. Good to hear it may just take longer. I feel like I’m stuck in month two of recovery and although it’s been 4 months I still feel the same as then. At some point t I was more optimistic and felt better I have been feeling worse lately.
Did any of u have ear fullness before and after that slowly improved? Sometimes it sounds like my ears are clicking when I speak but not sure.
Also I think I’ve been overly conscious of my swollowing to try to clear something and I probably swollow too often.

7

Did you have calcified stylo-hyoid ligaments, or elongated styloids, or both? Just wondering if Dr Hackman has had to remove your stylo-hyoid ligaments or whether they were detached & left in, which is quite normal if they’re calcified. If they were left in & the hyoid cornu are elongated or if there’s a bit of calcification at that end of the ligament it could explain why you’re uncomfortable with that area…And I presume you had bilateral surgery, most do with him? If that’s the case it’s worth bearing in mind it is a bigger surgery than one side, so recovery will take a bit longer.
Clicking in your ears when talking can be just being a bit bunged up, it can also be due to eustachian tube dysfunction, which a few members have had alongside ES…
My ear fullness was from vascular ES I believe and it did improve quickly after surgery, but I think from reading others’ experiences on here I was very lucky, it often takes a bit longer.

1 Like
8

I know that he said he removed the whole thing and the calcified ligaments went all the way to the hyoid bone so he cut them from the hyoid bone and also cut it off up to the skull at the ear. Yes I had a bilateral syloidrectomy. I was not really in pain on my right side but had the clicking so I wanted it removed too in hopes of never have to worry about it again (some clicking is still there).
Now that surgery is done I still only get pains from my left side like before. They are not as sharp and also less constant but definitely still more prominent on the left side at the point where the ligament attaches to the hyoid is where I get the pain… but also a little pressure at the back of the hyoid bone into my neck muscles. The clicking noises in my neck are worse on my left side and also my left ear has always hurt more. My ear pain is also better than before but it still burns sometimes. The left side of my throat sometimes feels stiff at the tonsil, eating always relaxes it and makes me feel better.

1 Like
9

It really sounds like you have nerves that are still unsettled post op. My right side took longer to recover from surgery & was a harder recovery than the left side. I think part of what made a difference was how irritated/damaged the nerves were on one side vs the other i.e. my glossopharyngeal nerve on the right was wrapped around my styloid so it was getting a real work over w/ neck & head movement. The symptoms it was causing were among the slowest to recover. It may be that your left styloid was wreaking more havoc among the nerves on that side than the right one was (you even noted you didn’t really have pain on the right side prior to surgery) & that’s why the left side is being slower to heal. Interestingly, my left styloid was longer & caused more of my pain symptoms, but the right side seemed to injure the nerves worse. It was thicker & grew more straight down where the left one was more curved inward.

2 Likes
11

At least you know that there’s no calcified stylo-hyoid ligament left to cause the symptoms, as @Isaiah_40_31 says it could be that it’s taking longer to heal, otherwise just guessing but maybe now the ligament has been removed from the hyoid end, perhaps the hyoid cornu is not under as much tension, perhaps it’s altered position slightly and that’s irritating a nerve? So it might be worth getting a new CT done? :hugs:

1 Like
12

Yes, thank u both! It’s strange bc when I was more numb from the surgery I felt better and was optimistic. Once the swelling and numbness wore off after 2 months it was obvious I still had some bad symptoms, pain and clicking came back (my guess is the swelling cushioned it). I will have a new ct done next week and sent to my surgeon Dr. Hackman.

3 Likes
13

Please keep us posted regarding your new CT results. I hope something shows up that explain your current symptoms.

2 Likes
14

Hey there! I’m reading through your posts and so much of that rings true for my husband who is 10 weeks post-op. He also cannot open his mouth more than 2 fingers width. It doesn’t hurt to do it, just like a physical limitation. In his case it was smashing down a Costco hotdog to pancake size. His digastric muscle was cut and I wonder if that plays a part. That muscle is responsible for opening the lower jaw. Do you know if yours was cut?

He also has been having throat pain, but lower than before surgery. Before he had the classic strangled feeling with a sore mid throat, but now it’s all shifted about 2” down and we can’t figure out why.

Right now he’s trying Botox in the parotid gland for first bite syndrome, seeing a physio for the neck stiffness (and potential diagnosis of CCI) and he’s seeing a cranio sacral massage therapist who does intra-oral work and is trying to get the mouth to reopen. He’s only had 1 appointment with the massage therapist, and now when he yawns he gets muscle spasms. But as painful as it is, it’s a sign that she’s hitting the right area so hopefully with more work it’ll loosen up. He also has an appointment with his dentist and an oral specialist but those are pending.

He’s arranged an appointment with his doctor and is going to ask for a CTV as a post-op check. We’re in Canada so that could be 4 weeks or it could be 40, not too sure.

I hope you get some answers soon. I hate saying patience and time, patience and time because it sounds so disingenuous but hopefully with a bit more patience and time things will start to settle for you.

2 Likes
15

Thank u for writing me! @Val7426
I’ve never thought of that muscle so I just messaged my surgeon to see what he says about if there’s a chance it was cut. How did your Husband find out it was cut? I’m getting a soft tissue ct scan soon I wonder if it would show on there. After looking up the muscle location online I do have pain under my ear in that area on the left side. When I look over my right shoulder to stretch it it does feel very tight.
Does he ever get any clicking noises in his ear when moving his head or speaking, mine seems to come from my the back of the hyoid bone but sometimes the location of that muscle.

16

@KCarey Have you been able to look at your operative report? It is a play-by-play of everything that happened during the surgery.

3 Likes
17

He has been getting a clicking although it seems in a different area. He’s pretty certain it’s coming from his jaw. He has severe TMJ which has flared since surgery.
The surgeon told us about removing the muscle. His was crazy overdeveloped and it was blocking access to the styloid. Sometimes only the belly of the digastric is cut, but in JC’s case it was a complete resection. We also got a copy of the surgery report and it was mentioned there.

3 Likes
18

Thank u! My surgeon got back with me and mine was not cut, just pulled out of the way. I wasn’t aware of that exact muscle until looking it up and I do feel like a lot of the pain I feel comes from that area (also pain in the ear) so I will start to do stretches I looked up online to see if it helps.

1 Like
19

I had intermittent swallowing problems i.e. choking especially when drinking several years after my styloidectomies. I was seeing a chiropractor for other things at the time & mentioned my choking to him. He told me it was probably my digastric muscle causing it & went to work massaging it especially on the right side (ouch!) while commenting how tight it was. My choking when drinking problem nearly stopped after that for a while. I had him work on my digastric several more times & the choking problem is about 99% gone. Now that I know where it is, I can do self massage there if I have problems in the future.

2 Likes
20

My CT results are very confusing. When I read the results from the radiologist it says I have calcifications of both my stylohyoid ligaments and an elongated syloid process. I was told the entire ligaments were removed and taken up to the base of the skull so I shouldnt even have a styloid process? Dr. Hackman is known for taking the entire thing out and he said I will not have Eagles syndrome anymore bc he removed it all. Here is a screenshot of what I read from the radiologist. I’m waiting to hear back from Dr. Hackman after he reads the images. The remaining calcifications could be causing the clicking but that’s not what I was expecting to read based off what I was told he removed (only 4 months ago). I wish I could see the images to post them but I don’t have a way to look at them myself.

(Side note, Dr. Hackman is an amazing doctor and he has helped me a lot, just confused on these findings and anxious to hear his point of view).

IMG_4816
IMG_48161170×2532 370 KB

21

I agree that it doesn’t make sense that you’d still have that much calcification in your neck after bilateral ES surgery w/ Dr. Hackman. We’ve had other members who’ve had a similar experience i.e. styloids were reported to be removed to skull base & calcified ligaments removed but found in a post op follow-up CT that all or most of what was claimed to have been removed was still there. The surgeon who did the other surgeries was NOT Dr. Hackman. Cases like these beg the question, “What was removed?!” I expect Dr. Hackman will have a good explanation for you. Please share with us what he says after reviewing your CT.

2 Likes