Thank you! Your little reminders of ‘baby step’ recovery is much appreciated as I work through this. It is proving to be a real mental challenge - the whole 1 step forwards, 2 steps back game - and fatigue, pain and new symptoms during recovery are quite overwhelming but I’m starting to get a better understanding of what might be the root cause for me … a postural spinal shift due to an old right hip injury 15 years ago that has also affected the positioning of my right foot when I walk (very subtle). This spinal shift has created an imbalance which I’m sure in turn has required additional stability in my neck to hold the head.
I started Physio on my hip this week and while my body is so overwhelmed with pain (like you @bowser in the last few weeks I’ve been having a huge increase in vagus nerve symptoms as well as fatigue and flu like body pain) and terrible anxiety and feeling of panic, on top of the other ES symptoms, today my heart rate has calmed a bit and I have more of a sense of where pain is stemming from. Pain has also decreased a bit which is helping with anxiety. I’m 6 weeks post surgery and hardly capable of much at the moment. Still very far to go with recovery but hoping for the best, as for everyone on here 
Hi, thanks for your feedback. I was taking pregabalin but have wondered about gabapentin. Interestingly my surgeon and Physio are both leaning me away from pharmaceutical intervention (I know, easy when they arent going through the pain), but it’s helping me for now at least, not move too quickly into getting onto pain meds again. Thankfully it’s the summer holidays here in NZ so the weather is relatively good and most people aren’t back to work for at least another week. Will see how long I can hold off going back to work…I’m sure that additional stress won’t help.
I’m so sorry that your recovery is so slow, doesn’t sound like you’ll be ready for work any time soon, so if you can put it off as long as possible that would be better for your healing…
Others (@vdm , & @TheDude) have posted about the effects of subtle postural changes and how this can affect muscles etc all the way up through the body, so if you’ve had a hip injury then you could be on to something!
Take care of yourself, you’re doing a great job of trying to be positive and keeping hopeful 
I totally agree with this statement. It has been shown that even a small postural change such as the one you noted because of your hip, causes muscles above & below the injured area to take on new “roles” & try to cover for the muscles that aren’t working correctly. Over time those muscles that are doing the extra work become injured so other muscles have to fill in for them & so on until there’s one giant mess of pain going on in the body. When you add the brain’s reaction of creating calcification to try to create stability where it detects it’s needed but not helpful, Voíla! It’s a world of hurt!!
I hope the PT is very helpful. So good to hear your heartrate was more settled today along w/ reduced pain!
Hi @Val7426 I am from vancouver Canada. I just contacted Dr.kamran and sent him my scans.I will probably follow your plan to the Tee. Can I contact you ? Do you have any Ig or number I can text message you and ask for knowledge ? Would be appreciated it!
Hey there! For sure, happy to connect. I’ll send you a DM with my number.
Thanks so much for your thoughts! I’ve been in and out of pain in my hip/leg the past week or so but finally did some strengthening exercises last night for labral tear and I’m feeling far less pain today - my new Physio suspects I have one.
I’ve also noticed I’m extremely fatigued when I have pain - like out of proportion to the pain (or at least in my mind) despite the pain being fairly horrible.
How long does it take for the fatigue to go after surgery? I’ve only had my left side done and don’t notice symptoms on the other side despite a tiny bit of calcification - I think it measures less than 20mm and is quite thin.
@BraveKat - I was fairly exhausted for about 2 mos after my first surgery and for about 6 weeks after my second one. I’m sorry you’re still struggling w/ fatigue from pain, but I suspect it’s your body’s way of telling you it’s still not ready for normal activity.
From the sounds of things, you may not need a second surgery, at least not any time soon. If the other styloid isn’t causing problems, it’s best to leave it alone. We’ve had members who had a second styloidectomy just because they knew their second styloid was a bit long but not because it was causing problems. The second surgery caused pain to onset that was hard to control & wouldn’t go away. I like the saying, “If it ain’t broke, don’t fix it”. It applies here.
I’m glad that the physio/ exercises have helped today, that’s good
I would guess that you probably don’t sleep well when you’re in pain, so that’s not going to help with fatigue, and also vagus nerve irritation can cause fatigue and disruption of energy levels, so that’s a possibility too
Yes you’re right! Everything you said I’m definitely experiencing. Sleeping poorly, vagus nerve symptoms (luckily it’s not as intense as it has been but still causing issues) and not 100% knowing how to help the situation cos it’s all so intertwined.
It’s funny cos I can feel very exhausted (just want to sit at home and do nothing) but I’ll push myself, for example I had a simple dinner out with my husband last night to celebrate our anniversary, and after the dinner I noticed I felt really good, and I’m guessing it was vagus nerve stimulation - being out in the gentle evening sun with a light breeze and having a nice dinner together - that helped in that moment. I just need to find the right balance of pushing and resting perhaps.
Thank you for providing some info on your own experience. Do you think the Physio work helped speed up your recovery or was it unrelated for you?
Very grateful for your insight about surgery to the other side. I have a bit of tinnitus that comes and goes on that side too but will hold off as long as I can at this stage. Have you noticed any Changes in your symptoms in the last few weeks?
I didn’t have any physical therapy after either of my surgeries. Half my tongue was temporarily paralyzed after my first surgery due to my glossopharyngeal nerve being wrapped around my styloid process. I had serious swallowing issues from that for about 9 months & tried to get PT for that but my PCP refused to refer me. That was before I knew about medical self advocacy. I now know better & do stand up for what I need when it’s denied.
Since my surgery w/ Dr. Hepworth (my 3rd ES surgery), my tinnitus now changes pitch intermittently which it really didn’t do before, & a recent hearing test indicated that I have improved word comprehension in my nearly deaf left ear. That was encouraging! Dr. Hepworth said hearing restoration could still occur to some degree, but it would be a long slow process. I’m fine waiting & hoping there is more forward progress in a few months.
@BraveKat I’m glad that you were able to have a nice evening out 
@Isaiah_40_31 will keep praying for improvements
Oh that is so great to hear! No pun intended
I’ve had significant hearing improvement since surgery but my nerve (maybe the vestibular nerve) made things worse before it got better. I’m also convinced it was the trigger of my severe pain attack. I’ve read there is a definite link between anxiety and the nerves of the ear. Hope things continue to improve for you 
@BraveKat - Thank you, and I hope your pain continues to disappear as the days pass. I saw my ENT today for the first time in many months, & he highly encouraged me to get a hearing aid. I’ll look into it in the near future.
Hi when will the deep oscillation machine be applicable after surgery to use ? Without it disrupting normal healing process? I am 2 and half weeks op. I want to fasten healing without causing fibrosis or re compression of my internal jugular veins! Thank you
Okay, later than planned but there was some stuff to figure out before posting, last update was on Jan 6 2025.
JC’s had some set backs, and yes, it is because he had the surgery but after further exploration, there is reason to remain hopeful some/most of these will be resolved with rehab and time. He is now 10 weeks post surgery. And keep in mind he’s been chronically ill for 5 years, so your healing times and experiences may differ.
-The lump in his throat and the feeling of strangulation have kind of returned. He says it feels a bit different, like his whole throat is pulling at the trachea and it may be responsible for the choking feeling.
-The head pressure/whooshing, tinnitus and chin spasms are still resolved.
-Still cannot open mouth more than 2cm. Today the dentist said this is likely because the digastric muscle was cut and he may never recover the range he had pre-surgery
^^he has an appointment with an oral specialist and will be seeing a TMJ-focused physio. I don’t believe this is entirely true and think he can recover more range.
-TMJ is still worse than pre-surgery, he is seeing a cranio-sacral massage therapist to try and ease the area
-Numbness in face has subsided substantially. Left sideburn area is still numb but mostly -resolved on right side and along jaw line.
-Still gets frontal headaches, but this could be something else and not related to the condition or surgery
-C1/atlas pain remains as fierce as before. But we don’t think this has anything to do with the surgery. JC thinks it is CCI, but I’m starting to disagree and think it could be muscle weakness and postural. 5 years of being bedridden has reduced the muscle tone in the front of his neck (according to the physio) and once he has even strength then hopefully this will improve.
-First bite is completely off the charts. He has seen a pain doctor and had a total of 30 units of Botox into the parotid gland but has not seen improvement. The Botox reduces saliva and it may be that his irritated throat is due to a lack of saliva, so now he has to decide if he wants to continue trying Botox or if stop, and maybe his throat will improve.
Other stuff:
-He has been going to my esthetician and having the scars microneedled and they look amazing. Doctors have commented on how well they healed. So if you’re concerned about scarring, consider professional microneeding (which is at a deeper level than the at-home kits).
-He has an appointment with his doctor in mid-March to get a referral for a CTV to double check on the jugular veins.
-When he yawns he gets neck spasms. We’re guessing this is related to the digastric muscle and it is a new development.
-His neck gets an overwhelming feeling of fatigue. After surgery it was better, but it may have been swelling compressing it, now it feels weaker. The physio said the front of his neck has no strength so fingers crossed exercise resolves it, and it’s not true CCI.
Even though some of this seems like it isn’t trending in the right direction, it kind of is. Like the other day he was packing something for the mail and previously he couldn’t have looked down to do that… it would have set off the pressure and whooshing. He’s been cooking more again, which requires him to look down. Some days he feels really bad and spends a fair chunk of time in bed, but today he hasn’t even looked at it. He drove to the dentist, made lunch, and is fiddling about. He’s assembling a great team of people around him to help, so hopefully in a couple couple months the progress report will be overwhelmingly positive.
@Abhullat - we recommend not start anything like that until about a month post op. It gives the tissues a good start healing & the incision, too.
@Val7426 - I love your positive attitude - looking for the things that are better vs lamenting over what’s still present - re: JC’s symptoms. That has to be helping JC & you as you both amble toward his recovery.
I’m glad for the progress that JC has made so far, & the type of day he had today may become more & more consistent. He had a very extreme version of ES, & as you noted, suffered hard for 5 years. He’s still in fairly early recovery & is doing the work that will help his recovery progress.
I’m sorry for the pain he’s still having w/ FBS & question that botox injections in the parotid are the best approach to dealing with it. The nerve that causes FBS is the glossopharyngeal nerve (GPN), so in my mind, a GPN nerve block would be a better approach i.e. treat the cause not the “victim” i.e. parotid gland, of the cause. Of course, I’m not a doctor so truly don’t know the best way to handle that pain. I think I mentioned before that staying super hydrated helped me a lot in reducing FBS symptoms as it diluted my saliva which seemed to decrease the impact it had on my parotid/GPN. Is JC able to drink 80-100 oz of non-sugary fluid/day? He may need to work up to that amount, but it’s doable.
I hope the therapy w/ his stiff jaw & his weak neck are highly successful. We’ve had other members who’ve had the posterior digastric removed w/o ending up w/ the symptoms he has so I feel that may give hope he can recover to a greater extent. Do you know how much of the digastric was taken out or was it just severed?
I appreciate your updates & will look forward to reading your next post.
The digastric was severed on both sides because it was over developed and covering access to the styloids. The doctor said the muscles would atrophy and wither away, and one day would be a remnant or reabsorbed by the body.
I’ll ask about the GPN block. Botox has been documented for FBS but if there’s other options that don’t carry the same side effects then I’m sure that’d be preferred. Right now it’s like every action has a reaction.
Re: water. I actually think he drinks AT LEAST 100oz a day. So good on that front. It helps if he holds something in the right side, but then it’s like Thor’s striking him in the face when he actually bites.
Thanks as always for your valuable insights!!