Surgery Completed!

I think all nerve pain/symptoms ES causes are “atypical” in that we most likely wouldn’t have them if we didn’t have ES (which is atypical :upside_down_face:). I really believe the scalp symptoms are from your TN being irritated by ES. It does seem odd that a branch of that nerve that’s so far from your neck would be irritated, but since you also have face pain, the facial section of the TN may be referring pain up to your scalp branch. Amitriptyline or one of the other nerve pain meds could be very beneficial for you at the moment because chronic pain causes muscles to tense up as they try to protect the weak area, but tense muscles squeeze nerves which causes more pain. Even small muscles like those in your scalp could be contributing to the pressure there.

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I get a pressure, sort of boring feeling on the top of my scalp, I do get aching & pressure in areas on all 3 branches of the Trigeminal nerve, so yes, it could be due to the styloids.

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Thank you both. This is good to know and I definitely will bring up with my Dr starting amitriptyline again.

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Huh - I’ve seen “first bite” mentioned. I finally decided to look it up. I’ve had it most of my life - maybe once or twice a month. It’s been bad today, though, which is why I googled it.

I don’t understand why I’m in so much pain now. I had at least several days where Advil and Tylenol worked fine.
My GP has prescribed 1/2 to 1 5mg oxy pill every 6 hours - it takes 2 to take the edge off the pain. I’m 2 1/2 weeks post op.

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I’m so sorry you feel awful today @tokenegret. You’ve been under pressure to move since soon after your surgery. You’ve at least begun that process (which includes the driving back & forth & checking out the new place), and I’m assuming w/o a lot of help. Both the physical & emotional stress of that are taking their toll on you now. You’re most likely in more pain because it’s the only way your body knows how to tell you to rest, rest, rest because it’s not ready to be doing what you’re asking it to do right now. Keep icing your incision & neck as that will help along w/ the oxy.

I had REALLY BAD first bite syndrome (I’d get an adrenaline rush & heart palpitations from it & sometimes feel light-headed) every time I started eating for a number of months after my first ES surgery. I talked to my doctor about it, & he said he could Rx nerve pain meds, but I decided I didn’t want them. The things I found that helped the symptoms be less intense were 1) staying super hydrated i.e. 70-100 oz fluid/day (not surgary or highly caffeinated) which helped keep my saliva very dilute 2) taking a bite of food & holding it on my tongue for a few seconds before beginning to chew. 3) eating a somewhat bland diet for awhile i.e. minimal citrus fruits, spicy, salty, or very sweet foods.

The symptoms should become less intense over time, & there will even be days when it doesn’t happen every time you eat. Many of our members have found that it disappears w/in a few weeks to a couple of months post op. If you had bad trigeminal nerve symptoms prior to surgery, it may take a bit longer for the FBS to dissipate since the TN is the culprit for this problem.

I hope you get the move over with soon so you can get back to recovering. Sending up a prayer & sending you a gentle “feel better soon” hug. :pray: :hugs:

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I agree with @Isaiah_40_31 , you’ve had a lot on & it’s easy to over do things without realising, we’ve all been there after surgery! Hope that things settle down for you soon, hugs & prayers from me too :hugs: :pray:

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@tokenegret - I’ve been thinking of you and am so happy to know you’ve seen results this early! As all seem to discuss, this is a roller coaster ride of a recovery! But I believe you’ll see great results as time goes on.

Be easy on yourself over the next several months…I’m 11 weeks post and am STILL finding that it’s not hard to overdo things and I end up paying for it the following couple days! I hope that comes to an end soon because I’m a do-er!

My very best to you :blush:

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Thanks so much! It’s a day by day thing.

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Hang in there @tokenegret! Glad to be able to follow your recovery. I’m right behind you, I have my styloidectomy on the 29th. I’m very nervous about the operation so you are definitely giving me some hope for good healing!

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Glad that you have a surgery date @Dakotank; who is doing your surgery? Will be thinking of you & praying that all goes well!

Just seen your other post with the doctors name!

Out of curiosity, will your surgery be intra oral or external? Really glad you found someone close to home to help you!

@Isaiah_40_31- they are going extraoral. I found out that the left side is only calcified in a few places where as the right is fully calcified styloid to hyoid. It’s over 1 cm thick in places. He wants to do the right side now and keep an eye on the left. also @Jules- Thank you all for the support! This site literally has made the difference in this journey.

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@Dakotank - YIPPEE! I’m so glad you’ve found someone in your area to do external surgery. Your right styloid sounds seriously AWFUL!!

There was a previous doctor on the list who only did intraoral & had a very bad attitude about even doing ES surgery so we took him off the list!

For the record, my dad did his medical residency at Barnes Jewish Hospital (West) in 1958-62. I also had my tonsils removed there in 1960. I’m sure the hospital is much different now than it was then! I know the hospital & the doctors who work there have good reputations.

Thank you. They are on top of it. That’s certain!

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Sounds like things are slowly improving, I hope you are doing well all settled in to your new home

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