Thank you sjlash for the good advice. Writing to this support group is a good way to keep my list of symptoms going - as well as the many lists I keep on my phone.
Thinking of you, it all sounds grim, but hopefully if it is from the vagus nerve then time will help it settle, canât say much else really! Hope the sleep study shows what the problem isâŚthinking of you & sending you hugsâŚ
Thanks Jules.
The latest flair up with the breathing problems has passed and I slept decently the past two nights. 
I see the sleep doctor Tuesday and the neurologist in two weeks.
The remaining elongated styoid (5.5cm) is reminding me of its presence - super pokey in tongue and neck and difficulty swallowing, which was always there, but new cheek pain and a twitchy/painful eye. I took the reminder as a positive sign that I am on a long journey and its not just all craziness in the present. Sleep helps.
I am not ready to schedule the next surgery but I understand that itâs necessary. I have a teleconference with the surgeon early September to discuss it at that time.
Me without sleep: crazy
Me with sleep: ever so slightly optimistic
Thank you to all for listening.
2 Likes
Glad you got some sleep and are feeling a bit optimistic!
Advise on second surgery - try for the sweet spot. Be as healed as you can from the first surgery, but donât wait so long as the second side is causing problems for the already operated side. This is easy said than done without a doubt. I wish I could have waited longer (waited 6 months and change). The pain got to be more than I could wait out. Now after surgery the side I had done in January is very angry. Under the jaw it bothers me more than the right. From Emmaâs post I am going to just stay calm and be patient, but do be cautious:)
Hi sjlash
I am almost 2 months post op and the second side is getting worse seemingly daily. The remaining styloid misses his old friend and is making up for it and could be the culprit for the excised left issues. I hope to be able to make it to January so I can take time off for recovery with pay.
I see that you are up for your second surgery in 18 days. I will be thinking of you and praying for the best outcome.
BG
Good that youâve haf some more sleep, amazing how it can help you cope a bit better, hope that this run continues! I guess with all these extra nerve issues you need to let that settle before round 2, but a 5.5cms styloid will definitely be making itâs presence felt! More hugsâŚ
Iâm on your page about sleep vs no sleep. I tend to run low on sleep, & at my age, itâs affecting my memory. Youâd think Iâd hop to & start getting myself to bed earlier. Itâs a goal - 7-8 hrs/night. 
Hopefully, Iâll make it a priority instead of a goal, soon!
Glad youâre seeing progress in healing from your breathing trouble but sorry youâre remaining styloid is causing worse problems. I remember that scenario all too well in my case! You will be so relieved to have that second surgery behind you once youâve had it.
1 Like
Good luck with the sleep study!!!
Thank you!
I see the sleep study doctor tomorrow, then hopefully he can schedule me in soon. All of this waiting with issues that raise anxiety is a real test of patience. I have lots of tricks to help with my anxiety but when the issues wake me up it makes for a long night.
My son recently told me that he has bouts of sleep paralysis - where you are partially awake in your nightmares where they seem to be vivid and real but you cant move. I understand the anxiety of sleep issues but this is horrifying.
Yes I understand, long nights are just that-l o n g. With my CSF leak I havenât slept for the last 5 years, literally. Know someone in the Rockies is awake with you sharing the night sky 
wishing on the stars 
3 Likes
Hit send too fast 
So sorry for your son, that sounds absolutely horrific!!! Maybe he needs a study as well?
Thank you. I am sorry that you donât sleep. Iâll be thinking of you tonight in the wee hours.
âTheyâ say sleep paralysis is caused by anxiety and the best thing to do is to regulate your sleep schedule.
1 Like
Yes, sleep paralysis must be awfulâŚmy son has had bouts of that.
The nights before my surgery were long too, spent the nights in a recliner, trying to read & listen to music, lots of prayer timeâŚ& my lovely old lab keeping me company.
Might make you laugh- I dreamt the other night there was a snake on my bedside table, I got up to put the light on so I could sort it out (I wasnât scared in my dream at all!), it was only when I was fumbling with the light switch & hubby asked what I was doing & I realised how stupid it sounded, donât have a snake problem in the UK! I woke up then feeling very stupid!
3 Likes
Thanks for sharing your funny story.
BG
Some good news!
The pulmonologist doesnât think I have sleep apnea but has suggested the home sleep study kit to make certain. Its a pared down version of the clinical study - and I get to do it in my own bed! Get this, he also said that the nerves could have been disturbed from surgery then aggravated more on my outings causing the breathing episodes. Interesting how some doctors will say this and others wont.
Question to ask but not sure if there is an answer.
I now have stomach issues post surgery - mostly persistent heartburn. I had it years ago but managed to clear that up only to return after the surgery. I havenât changed my diet, if anything I am eating an even cleaner diet then before the surgery. My question: could this be from aggravated nerves from the surgery or from the remaining styloid? My guess is that it could be both.
Peace,
BG
1 Like
I would guess both too; the surgery couldâve irritated the vagus nerve, but equally maybe it couldâve shifted things enough in your neck to bring the other SP into contact with it. Good that you can do the sleep study at home, & also that the pulmonologist recognized the potential effects of surgery! Did he say that hopefully things will settle with time, or did he not want to commit to that?
Thanks Jules,
He did say that it should ease over time. I am hopeful but not to the point where I want to test it out yet with too much activity, which has been the cause of my episodes.
Oh, definitely take things easy with all these issuesâŚsome hope for healing though?! 
HOORAY for good news & getting to sleep in your own bed! The pulmonologist sounds like he was very supportive & encouraging. So GREAT!!
I totally agree w/ everything Jules said regarding your heart burn as well as what you suggested, BG. Once styloid 2 is gone there is good chance the heartburn will go too.