Bilateral surgery 6 weeks ago - recovery process

[Angie59]

I’m glad I found this forum and I wish I had found it before, on this long ES journey.

I’m French, sorry in advance for my English mistakes. My symptoms started in April 2022, I suddenly had difficulties to swallow and eat, as if food got stuck in my throat. Then I felt stabbing in my neck and throat constantly. I also struggled with huge pain near my larynx while talking, and felt strangled when moving and turning my head.
In September I stopped working, was bedridden and fell into deep depression. I saw a Maxilo surgeon (head and neck) in Belgium, he examined me and he found on my CT that I had bilateral ES (5 cm on the right side and 3,7 cm on the left). He added me on his planning and I had surgery mid- December.

All went well, he removed both sides to the skull base. Recovery was tough… I iced every day, and my symptoms seemed to progressively disappear. I still had difficulty to eat and pain when talking but was positive and thought it would resolve with time. The feeling of something stuck in my throat was gone and so the stabbing in my neck. I had swelling around the scars and it was painful and still difficult to move my head and turn my neck.

My GP sent me on week 3 to see a physiotherapist to regain mobility in my neck and to have some massages on my throat to diminish the swelling. The first 2-3 sessions were fine, massages on the neck felt good and I regained mobility. Light massages on my scars were practiced. Yet then, the 2 following sessions were less easy (week 5 after surgery). He said he would do some drainage around the scars but he actually massaged my throat. Not deeply but it was enough to hurt me – he said he massaged only soft tissues. When I got back home, I was in pain. The day after, my symptoms came back on the right side, pain when swallowing, feeling of something stuck in the throat, tingling. I started icing again. Since then (one week ago) I am in pain.

I hope no damage was done to the zone and the massages just reactivated the swelling, or irritated some nerves and that it is just a flare up. Maybe it was just too soon for massages on the surgery zone but no damage was done ?

Yet I don’t have any clue about the recovery process. Maybe it is normal to have some symptoms back after a month, and all of this has no link with PT ? I don’t know, that is why I want to share on the forum!

I’m supposed to see my surgeon next week for a post-op appointment. Of course I will ask him. If you have any advice or question about the recovery process I would be very happy to hear from you and share with you !

[Jules]

Hi & welcome to the site!
I’m glad that you did get some relief from symptoms after surgery, that’s a good sign! But bilateral surgery is a tough recovery (not all doctors do it because of this & the higher risk of swelling), so there will be ups and downs…It’s not a medical opinion, but personally I’d say that the physiotherapy has probably aggravated nerves which were healing and has set your recovery back, it does sound pretty early to be doing too much. It is normal to have 2 steps forward and 1 back, and often if people have overdone things then they can have a flare-up, so hopefully this is what’s happened for you, and it will settle again soon! Nerves can actually take months, even up to a year to heal, so can easily be upset! Given you were in pain after the PT sessions, it seems pretty likely that this is what’s upset things…good to keep icing and maybe sleep partly upright to help with the swelling.
I hope that things improve soon for you, and let us know how you get on with your post-op appt. If you’re happy with your surgeon, would you mind sharing their name with us? It would be helpful to know of a doctor who does surgery as we don’t know of any in France & Belgium?

[Angie59]

Hello Jules,
Thank you so much for your support and advice. I was aware there would be up and down in this recovery, as my surgeon told me, but this seems like going months backward. I understand there are flare-ups in recovery but it worries me so much that it just stops the recovery process and that I won’t see any progress anymore from now…I’m sure you are right and that PT was too much too soon… I would not have guessed it could have such impacts !
Usually, from experiences of members on the forum, how long do flare ups last in the recovery process ? Days, weeks ? It is so frustrating… I experience again huge pain while talking, like a needle in the throat, tingling… yet I feel the styloid is not there anymore…
I started 3 days ago to take Gabapentin. I can’t see any progress in pain for the moment.

I will let you know how the post op appointment goes.

My surgeon is Thierry Ladner, in Brussels (head and neck surgeon). In France we have two experienced surgeons on ES : Elisabeth Sauvaget (ENT) in Paris (Saint Joseph Hospital) and Cesar Cartier (ENT) in Montpellier (south of France). I live in the north of France so Belgium was more convenient for me.

Thank you!

[Isaiah_40_31]

@Angie59

Thank you so much for the doctors’ names & locations that is very helpful as I will add them to our Doctors List. I will also make sure our other French member is aware of them.

When healing jumps backwards it can take a few days to a week or more for the symptoms to settle down again. It does take patience & being careful not to be too active when a flare-up occurs.

Nerve pain medications can take several weeks to work. Often a doctor will start a person on the lowest possible dose so the side effects are minimal. If there is no help then the dose is increased gradually over several weeks to a month to try to find the effective level while allowing the body to get used to the medication so side effects stay minimal. If one nerve pain med doesn’t work, there are others that can be tried. We have a number of members who’v found Amitriptyline to be helpful when Gabapentin was not.

[Jules]

I hope that the flare does ease soon, it is hard to say how long it could last…as @Isaiah_40_31 says, the nerve pain meds can take a little while to build up in your system before working, if it doesn’t help in a week or so you could try contacting your GP to see if it can be increased.
Thank you for the doctors names!
Sending you a hug

[Angie59]

Hello everyone,

I thought I should give you some news. Pain has shifted a bit recently, yet 2 months post surgery and I am still in pain.

It hurts in my throat and in my ear (right side only) when I swallow, talk or do nothing (like a needle, or stabbing).
My surgeon advised me to wear a mouth guard by night to help the muscles relax. I hope this will help.

I also started prednisolone, as gabapentin does not work at the moment. I don’t know if some people have started taking prednisolone 2 months post op here ?
It seems to me a little bit late yet I don’t have any other option at the moment.

I pray it is due to those nerves and muscles healing as I don’t feel the “ice pick” in my throat any more.

My physiotherapist does not see any particular swelling on my throat and really thinks this pain is muscular. We started tongue training last week and she thinks it could re activate the swelling.

To be honest I feel a little bit hopeless facing those various pains as I am now 2 months post surgery, yet I try to stay positive for the future weeks to come.

I hope this is a normal evolution and I try to be patient, yet I would like to know if some of you still had pain 2 months after surgery?

Thank you!

[Jules]

It is still early days in terms of nerve healing, so don’t give up hope! We had one member came back a year after surgery to say that her nerves had finally settled down & the pain had improved, so hang in there!
Doing PT exercises could well trigger a flare up in nerves, so the prednisolone may well help, I’m sure other members have had a later course which has helped. And there are other nerve pain medications which could be worth trying- what helps one doesn’t always help another, so after the steroid course it might be worth looking at- Amitriptyline, Carbamazepine for example.
If you’ve seen an improvement with the ice pick pain then hold on to that as a positive and keep strong! Sending you a hug & prayers

[Angie59]

Thank you Jules !
I still have the same pain, like a needle when swallowing. I just increased gabapentin to 600mg a day and do not see any improvement at the moment - maybe only on the tingling.
I actually struggle with very tight muscles at the front of my neck - from hyoid bone to the collar bone. Prednisolone has not improved this sensation neither… I stopped it 2 days ago.
I still feel strangled when I am active - like just walking a few minutes -, still have difficulties to eat and I’m pretty sure those tight muscles are responsible for this situation. I really do not know what to do. I read that recovering nerves could be the cause of these tight muscles.
Yet god this is hard to deal with as nothing eases the pain!
I’m almost 9 weeks post surgery.
Do you have any advice about this muscle situation ? PT has not helped me - rather the opposite lately. Massage ? Just time and patience ?
My scars heal well, I attach a picture.
Thank you for your support and advice !

[Jules]

There have been quite a few posts about muscle tension, strangled sensation etc, with a few suggestions- like dry needling, swallow therapy, botox injections, maybe something like that might help? Some members have also tried muscle relaxants like Baclofen. If you have time have a look at these discussions:
Three Month Post-Op Update (Right Side) - General / Eagle Syndrome Stories - Living with Eagle
Roles of Multiple Specialists for full recovery? - General - Living with Eagle
Dr. Hackman Surgery 2/28/22 + Full Story - General / Eagle Syndrome Stories - Living with Eagle
(Snapple2020 mentions botox injections in her post Dec 22)
Connection between Eagle and TMJ/bruxism/clenching/tight SCM? - General - Living with Eagle
Those with EDS or suspected EDS what helps you? - General - Living with Eagle
I hope that some of these might help, or you could try contacting members via private message to see what’s helped?

[Isaiah_40_31]

I will add tongue exercises to Jules’ list. There have been some studies that strengthening the tongue muscle can help w/ swallowing, but it most likely won’t help w/ the pain. I’m sorry the prednisone didn’t help. It can take a couple of weeks sometimes but beyond that, it’s time to try something else.

Here are links to a brief article about a swallow study done with a group of senior citizens & following that are links to 3 Youtube videos that demonstrate tongue exercises. Each video is slightly different & there are many more videos if you search “tongue exercises” on Youtube. As I have just learned about this myself, I am going to start practicing some of these because I still have some intermittent trouble with choking when drinking liquids.

Effect of Isometric Tongue Lifting Exercise on Oral Function, Physical...

Improve Swallowing Mouth and Tongue Exercises

Tongue Exercise for speech and swallowing abilities

Tongue Exercises for Speech and Swallowing

[Angie59]

Thank you both, Jules and Wendy for your support and advice. I ended up with a throat infection - not caused by surgery I guess as I am 10 weeks post op. I am currently taking antibiotics. I had tonsillectomy 10 years ago, and no more throat infection after that yet apparently a small piece of left tonsil has grown back… It’s weird and unfortunate as it has ‘hidden’ the residual ES pain after surgery.

I am now left with the same pain on the right side, like a needle and sharp pain, which is increased when I swallow. I don’t know if this could be nerve pain (I have tingling on the sale side, but not constantly), maybe GPN ? I am nearly 3 months post surgery and start to give up hope, as I have some doubts about the healing process - not supposed to be as painful I guess.

Again thank you for the feedback and advice you gave me!

[Jules]

It does sound like nerve pain, so might be worth exploring different meds for that? And maybe things will improve after the throat infection clears up- it doesn’t help! Keep strong & keep the hope that it will improve, sending you hugs

[Hadassa]

After my surgery, there were some days when I felt better and sometimes I would have set backs. That’s just what happens after a major surgery. My suggestion is, don’t get all hung up on speeding up the healing process. I wouldn’t let anybody mess with my neck.

Just rest and if you are having a set back, pay attention to your symptoms and rest. If after a couple of days the pain does not subside then, go back to your doctor and let him help you. One day at a time…

[Angie59]

Thank you Jules and Hadassa!
I still have the same pain. I am now 3 months post surgery and start to consider going back to physiotherapy again, as I’m convinced my remaining symptoms and issues are muscular.

I keep struggling with :

• tight throat muscles, above and below the hyoid bone, leading to a strangling feeling when I’m up and trying to do things (like cramps ?)
• Pain when swallowing, as if the muscles don’t know what to do anymore. The pain starts in my throat and goes down near the thyroid muscles. I struggle with dysphagia and can’t eat much and what I want as it is really painful
• Tingling in my throat on the right side

I though the pain with swallowing was caused by the calcification pressing on the Glossopharyngeal Nerve. Yet all has been removed by the surgeon (3,7 cm - the CT indicated 4,7cm so only 1 cm left), and it is almost the same as before. I just don’t have the feeling of a foreign object constantly in my throat and of something picking there. But the swallowing issues have not subside yet.

Do some of you still have swallowing issues after surgery? How long did it last ? Or did it stay and remain just as before surgery …? Do you recommend PT ?

Thank you for your advice and feedbacks !

[Isaiah_40_31]

@Angie59 - I’m so sorry this problem is persisting for you. So frustrating that you can’t eat normally & are in pain when swallowing. I would also have expected this problem to subside after surgery. Have you had a further consult w/ your ES surgeon to investigate whether this is just a very irritated or damaged nerve or if there is some possible mechanical cause i.e. scar tissue or muscle pressing on the nerve? If your neck muscles are very tight as you have noted, it’s possible they could be strangling your nerves in the area which reflects in your swallowing pain & inability to swallow well.

I do still have some swallowing issues after surgery but they are not nearly as severe as yours. I mostly have trouble when I drink water/tea & occasionally when eating, a piece of insufficiently chewed food will slip down my throat & gag me (like it gets stuck but eventually moves down if I swallow hard a few times). The food issue I blame on my tongue not working at 100% so food slips to the back of my throat too soon when I’m chewing. Swallowing water may also be related to that. I don’t have pain though.

My suggestion is to see a swallow therapist as well as getting PT for your neck muscles. Swallow therapists often work w/ stroke patients so your PCP should be willing to refer you & can hopefully suggest whom you should see.

[Jules]

Not sure if it’s my imagination, or if it’s even helpful, but looking at your photo again of your beautifully healed scars, it looks almost as if the hyoid’s shifted slightly and isn’t central, shifted to the left in the phot, to your right? I don’t know what could cause it, muscle tension perhaps? But it could perhaps explain the strangled sensation and the swallowing issue?

[Isaiah_40_31]

I see what you saw, @Jules! Great observation!! It’s a very subtle unevenness in @Angie59 's neck just below her chin. Definitely could be influenced by tight neck muscles.

[Angie59]

Thank you both Jules and Wendy for your feedbacks.

I still struggle with these tight muscles in my throat and the pin/needle/tingling inside it… These feelings drive me crazy …

I will talk to my phyisiotherapist about this weird hyoid bone position, my surgeon already told me that it’s placed “backwards” but did not worry about that.
I add some pictures of the CT before surgery.

I wonder if TMJ physiotherapy is even helpful (tongue exercises, massages in the mouth). She does not want to massage my throat muscles as she does not want to upset anything - I have the feeling that everything is already messed up since surgery.

Do you have an idea of what could be done for this tight muscles ? Is it something common after bilateral surgery? I keep reading stories in which people feel far better 2-3 months after surgery and feel so depressed that this is

absolutely not my case…

[Jules]

I think a few members have had issues with tight muscles- because of the pain & inflammation the muscles can get so tight & even after surgery can take a while to relax…the only suggestions I can think of are the ones we’ve already mentioned- muscle relaxant meds, dry needling, heat & ice alternating, botox injections…you could do a bit of research into anatomy to work out which muscles are causing issues & see if there are any exercises online to target those specifically? I feel for you, it’s so hard after surgery if things don’t improve, sending you a hug

[Isaiah_40_31]

@Angie59

Upon seeing your images, my comment is that your hyoid bone is not “backwards”. I’m not sure what your surgeon was referring to. It is in the correct position, however, you have significant stylohyoid ligament calcification coming off of both lesser horns of your hyoid, & the greater horn of your hyoid on the left looks to be elongated (though that may only be due to the angle of the image). If your surgeon didn’t remove the calcifications on the lesser horns, those could definitely be part of your problem.

Getting the greater horns of your hyoid evaluated for length would also be worthwhile. Both of these problems could definitely contribute to the symptoms you have left over.