Exactly, I’d say swelling is “back”. I asked Dr. Dedhia if I should ice any more and he said I didn’t have to. Maybe I should. Thanks for that tip 
Hi all, especially SewMomma.
Just so you remember five to 6 weeks is not an awful lot of time for recovery. Our nerves are a bit angry, the swelling does come back after steroids are done, but it does get better. I am 3 1/2 months out from my second surgery and like you SewMomma, I have been manic and anxious and full of anxiety. Today has been good.
I am massging more and more. Seems like I am finding more tight spots to massage on both sides. Yes, my first side actually is still more problematic than the second( right side).
I could not lie down completely until a month ago and still need to add a travel pillow occaaionally. Remember that our neck muscles and nerves have been frozen in angles not healthy. Some muscles are tight, some are too weak. I figure it took me over 6 months to recover from the intraoral surgery six years ago only to have the remainig pieces attack those nerves again. I have been sleeping sitting up for about 3 years because of Eagles and neck problems.
My jaw is arthritic according to my TMJ doctor so I guess I will be having issues on that side, but I am finding deep spots behind the jaw that are tight. I press on them breathe deeply, move my neck slowly. Sometimes they melt sometimes not. Sometimes, the pain goes away, sometime it radiates to another spot in the neck. However, I am using Tylenol for pain and rest and heat or ice.
I notice that the pains change from lumps to stabbing with no lumps to no pain. I think some thingsare loosening up. They get tight again and I panic. I know that my facial paralysis gets better after an especially painful, itchy, tingling sensation around my mouth.
I get very upset when I have a bad day like this is never going to end. I am there with you.
I am finding spots in the neck that might be facet joint problems because my pains are more localized. My right shoulder and neck problems may be easier to diagnose now if it is not from Eagles.
One thing, we know is that our healing takes up to 18 months. That really means 2 years from my 1st external surgery. I think that my muscles on the left side were still swollen at 6 months when I had the right side. My left ear is not numb amymore, but the right is.
Those of us who now have both sides done have to go for the ride wherever it brings us. I never liked roller coasters, so God is sending me on one anyway. SewMomma, you are so right, it is harder to remember our own encouraging words when we are in the midst of it. We are getting through it. Lucky for us, our spouses help with humor and chores.
So glad we have good surgeons. This is a tough journey, and yes, we can rage and vent here. We sometimes can only get the empathy or assurance we need on this site. Sometimes, our feelings are as raw as our nerves.
Every one of us will find our way, but only we can understand the journey and understand that each journey is personal and different and yet very similar. I find comfort from Jules and Isaiah 40:31 and find joy in knowing that all of us together are not walking this journey alone. I thank the members who are not here much anymore who helped me for the last 6 years.
I am glad to have all of you because our pain and anxiety, if we have been suffering for years, has probably pushed some friends away. This is our safe place to lift each other up and not be judged.
May we all find blessing.
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Thank you for this wonderful post, Emma. It reminds me of how much you helped me as a moderator on this forum when I was where you are now. You have wonderful insight & a great way with words.
I’m sorry you’re still here in your current situation but thankful you’re still here to support (& for support), give perspective, & be a light to those who are still/currently struggling.
I’m glad you’re finding ways to help yourself heal & that you continue to see progress even if there’s some regress in the process (lots of “ess” es there! 
)
Your patience & tenacity in finding ways to help your healing progress are inspiring.
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I’ve benefitted so much from this site, probably wouldn’t have had surgery if I’d not learnt about the doctor on here…you’ve given so much good advice emma & have done your bit with the doctors list, I’m really grateful for that. Can’t put it as eloquently as you did though😉…
I’ll keep praying for your healing too.
Hello eaglets! SewMomma, I am sorry you feel the clicks again. I am sure it took all of your will to not panic. I hope it has eased. Whether you have swelling or not, ice does help to numb the pain.
I am two weeks post-op. According to surgeons I should be well on my way by now. - Right 
The only relief from the external removal on the left side - poking pain, pain swallowing, tongue pain gone, but other ES symptoms seem to be full throttle - fullness and pain in my ear, ringing in my ear (way worse than before the surgery) and now maybe something new or an increase of 100 fold (?)
I have been having trouble sleeping. I had this problem many years ago, maybe or more when I had GI issues, which seemed to mask itself as breathing issues.
What is happening now is that I seem to have a problem with shallow breathing, like I cannot fully breath out before the next breath begins. I fall asleep but the breathing issue wakes me up with a start many times through the night - like I have to catch my breath. Meditation helps me to fall asleep but it doesn’t stop this. This morning my upper chest feels tight and sore - like an upper respiratory related problem - or maybe its in my esophagus??? Maybe its my breathing or maybe it bubbles working there way up and pop and wake me with a start. I still sleep popped up.
The chest tightening happened about about 2 months without breathing problems before my surgery and I saw my primary care doc. He said that my breathing seem clear. I chalked it up to a possible ES symptom.
Other post-op issues, which I believe could be just normal post-op healing, but not fun: the nerves are coming back around the incision and my skin is super sensitive and painful. I am suppose to rub it to get the nerves back, but yikes.
So far I am not happy that I had the surgery. If the sleeping issue continues I would say that I would trade the pain back for sleep. Ugh.
I made an appointment with my general practitioner for this afternoon to make sure I don’t have any major issue. I update then.
Peace.
Goodness! You’re having a rough go. Good you’re seeing your primary doctor. And you’re at work too right? That can’t be easy.
I’m a puffy mess this morning at 4.5 weeks. My neck is swollen, I need to ice. I had clicks when I woke up but it’s gotten better. I can’t believe how good I felt last week. I’m having a small setback. It’s normal.
If I can’t figure things out at 4 and a half weeks, I’d be the blind leading the blind right now to give you advice. Hang in there. The sleep/breathing stuff sounds terrible. I can’t help there either. When the click came back, I bought a big bottle of Tylenol PM. It helps me not wake up at night and panic/obsess. I’ll stay on it till this all passes. It sounds like your issues might be more complex than an over the counter sleep aid. Please let us know what your doctor says.
I will say when I got out of bed this morning, I told my husband that the site just hurts. Burning, stretching, pulling, tightening, sharp pain. I tried to massage it but I didn’t enjoy it. So - I’m with you there. Last time I didn’t massage until 6 weeks post op.
I did a quick search and I don’t think it is related to the GI track. What wakes me up I think is the “double breathing” like a catch up breath, which can be caused among other things, nerve damage. Also can be caused by a blood clot or COPD.
I know I must except my fate but … 
Sigh. I can hear your wheels turning all the way down here in the south. I hope you have a doctor who will listen to your concerns. Deep breaths, try to eat something for lunch and just get yourself to the appointment. 
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Hello BrooklynGirl,
Hopefully you are well on your way to the GP for insight to your breathing problems at night. Just to throw out a plausible reason, it could be related to the vagus nerve irritation and swelling surrounding it. The vagus nerve (which exits the skull right next door to the styloid) has a large role in our respiration, heart rate and blood pressure, if pressured for too long these changes may show up in the ways you are describing. I have not read your prior posts closely enough to know if you had vascular compression from the styoids or not but it worth relaying to your doctor if you read this before you go.
Wishing you the best, sending prayers and all good 
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So sorry that you’re having all these issues, poor you…hard to know what to say, it’s a real worry. I’m sure that if you see your PCP they may well ask about anxiety- do you think that it could be stress? I definitely get a tight chest when I’m anxious about things…unless the vagus nerve has been irritated with surgery & is causing issues? Have you been in touch with Dr Cognetti?
Still having to sleep propped up is normal post-op- I couldn’t lie flat for months afterwards.
The painful nerves is a usual symptom that they’re waking up again, itching can be too.
Fullness in your ear can be down to vascular issues remaining from the other side, or swelling from surgery still, or even nerve irritation from surgery. And the ringing too- I would try not to get too worried about those as it’s still very early days.
Still praying for you, & sending you a big hug…
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@SewMomma, @Jules @JustBreathe
I saw my GP and I have to say that I am lucky to have a great doctor who will listen. He didn’t know about ES (when I told him some time back,) but he did research and is a believer.
He discussed my symptoms with his colleagues and believes that my breathing problems are GI related. I had GERD years ago but have been symptom free for years, and now out of no where, BANG! Related to my surgery? A likely possibility. With GERD the esophagus gets inflamed and the inflammation spreads to the diaphragm which, in my case, made exhaling more labored. I am to take a PPI for a week and if the symptoms are not gone, then they want me to do a sleep study.
Also, he looked in my ear and throat and saw that I have fluid in my ear - he said typical of ENT surgery. So that too will pass with time and with it hopefully, the tinnitus.
Having this resource to lay out my anxiety for supportive ears is a huge comfort. Thank you for your input and support.
Peace,
Teresa
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Glad that he’s listened to you & hope that the medication helps. Will keep
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@BrooklynGirl, so grateful to hear you were well received and in the process of working things out! It is such a huge comfort to know there is a well educated and genuinely concerned provider near by and at the ready. Hope your dreams are sweeter and deeper tonight!
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Phew. You are ok. Everything is ok. You’re ok! Ok? 
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I’m OK! Thanks SewMomma😘
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Hi Brooklyn Girl,
I’m sorry to be jumping in on this conversation a bit late. I had a similar breathing issue post op & a bit pre-op as well. Mine was a little different in that I’d go to sleep & jerk wake feeling like I needed to gasp for a breath - like I wasn’t taking in enough air w/ each breath so I needed a giant breath to make up the oxygen deficit. This happened when I was sleeping in nearly a sitting position at night (which I had to do for about 2 months). Once I got in a few good breaths, I’d usually go back to sleep. I don’t recall how many times/night this would happen, but it did go away as my post op swelling subsided.
I think JustBreathe is on to something regarding vagus nerve breath regulation. I know my vagus nerve was irritated both before & after surgery. As it healed, the symptoms it was causing (heart palpitations, blood pressure drops, breathing issues…) all began to subside. At the time, I didn’t realize the breathing problem & vagus nerve irritation/damage were related. It all makes sense to me now.
I also agree w/ Jules about the chest tightening possibly being caused by stress or anxiety. It could be that when your brain feels oxygen deprived it sends a message for an adrenaline surge which in turn causes your chest to tighten & wakes you up so you breathe more deeply. If this cycle occurs several times during the night, I can imagine that your chest might feel tight & sore in the morning. Obviously this is speculation on my part.
You are still very early in your recovery so passing judgment on whether or not the surgery was a good idea IS NOT a good idea at the moment. At the 2 month mark post op, you’ll have a better picture of how effective your surgery was & even more so at the 6 month mark. I also second what Jules said regarding some of your remaining symptoms - they absolutely could be caused by your remaining styloid.
You will get through this rough period & come out the other side into the sunshine & a new day. Each new day will bring little positive changes in your healing process. They may not be noticeable at first but before long you’ll see good things happening.
I’m praying for you, too.
SewMomma,
I’m so sorry you’re experiencing the 3 steps forward, 2 steps back syndrome. (At least I hope you’re not feeling it’s 3 forward & 4 back!). As you noted, it does happen during recovery & can be very frustrating. Overall, progress is still being made. Obviously your body is still feeling the need for that protective “cushion” in your neck & incision area. As you know from previous experience, when things are sufficiently healed, that will all go away. I’m praying healing will speed up a few notches so you can see more positive progress. I’m continuing to pray for you!
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@Isaiah_40_31 @JustBreathe @Jules @SewMomma
You helped me through the rough patch - I am sincerely grateful for your input and support. I hope to have that all behind me, but if not it is comforting to know that I can reach out to you and not feel judged by my anxiety through the healing process. 
I had a decent night’s sleep last night with only a few breathing episodes. I am ready to seize the day.
I know I jumped the gun by saying I might regret the surgery, but after talking with my GP he was very reassuring that I did the right thing. (I know, everyone says that it was the right thing to do - my family, friends, this lovely support group, but sometimes it takes that one person/doctor that you can hear loud and clear.) He even encouraged me to get the right side done. I am coming around. In addition to the physical symptoms of poking, throat and tongue pain, etc gone, I have noticed (or not noticed ) that the nerve issue - the hot spot in my cheek that would flair up and send shooting pains to my teeth and ear has not flared up since my surgery.
The right side never seemed to have nerve issues but typical classic throat and tongue pain, though I had eye pain for years just above my right eye ball in the socket. I had several tests for that, but no resolution - all done before my ES diagnosis. Its is now back. The throat pain on the right was bad before the surgery, so much that I almost did that first. With nerve and throat pain the left was the trouble maker from the start. With the nerve pain diminishing, I am glad I stuck with the plan.
With limited knowledge of ES in the medical field, finding answers and a path to healing can test one’s resolve, patience and faith. I have been laughed at, told I was crazy, told to make sure I didn’t have lymphoma, told to do more testing or take that medication, told to relax, go for a massage… I heard the laughter loud and clear in my head post op when I had my doubts - “what did I do?” It’s been a crazy journey but I am still holding on.
Peace to all.
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praying for and thinking of you, Brooklyn Girl and SewMomma.
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Thank you Emma.