Post-Op Styloidectomy

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Hello, i haven’t posted in a while and haven’t been reading on the forum for a while either, just trying to deal with symptoms as most of us can relate to. My symptoms are mainly on my left side: neck pain and tingling from jawline to collarbone, zappy pain, ear ache, tongue pain, throat pain, hoarse, daily head pressure type pain which is typically worse in the mornings. The past 6-8 months or so the neck pain has wakened me in the early morning hours just about daily.

I’ve had headaches most of my life. I was diagnosed officially in my 30’s with migraine but i started getting headaches in 1967 when i was 8 years old. When i was 12 they ramped up with menses. Back then there was no treatment which is why i never saw a dr till the mid 90’s. That’s when Imitrex came on the market - a lifesaver for me. When i was 19 I was in a high speed roll over accident (hit broadside my side, unbelted - no one wore seatbelts in the 70’s!) which i now know messed up my neck but it wasnt investigated or ever treated. In my 20’s my neck began to ache. My headaches definitely changed over the years. Fast forward to 2019, i had a three level fusion at C4-7, and it helped my myelopathy and radiculopathy symptoms but i know my neck will never be pain free. I’ve done just about everything except SCS, and i dont want that.

After numerous consultations and testing since 2018, i’ve landed where i am now. I do know i have adjacent segment disease in my neck post acdf and am dealing with that concurrently with this internal jugular vein stenosis/eagle syndrome issue. My styloids are just over 3 cm each. Only my left IJV is very compressed and i have “robust” rear collaterals and right side dominant vessels according to imaging: MRI, CT, MRA, CT-A, cerebral angiogram/venogram, cerebral dynamic angiogram/dynamic venogram/venous manometry/balloon occlusion test/temp stenting of TS stenosis.

I am just about 14 days (tomorrow-June 14) from left styloidectomy. Recovery has been up and down and sort of what i expected but sort of not if that makes sense. I have some weakness around the left side of my mouth, but it is slowly getting better. The first few days post op i had trouble forming my mouth around a cup, bottle, straw, or spoon. Eating was challenging cause i’m missing a molar on my upper right, but i wasnt chewing anything super crunchy or chewy anyway. Swallowing wasn’t as bad as i was expecting thankfully. Swallowing just feels tight on the left, kind of lumpy which makes sense considering what was done. Surgeon said she takes the styloid back to the skull base as much as possible.

I was expecting swelling and pain in my upper neck/jaw around the incision but didnt expect the amount of pain i have down into my collarbone and shoulder and arm weakness. I have difficulty raising my arm above my waist or away from my body. I know it’s most likely from nerve irritation, post op swelling and inflammation. My incision is in my left side upper neck and is bigger than i was expecting. My surgeon does internal stitches with dermabond over and no bandage. Also not expecting no bandage right out of the pacu lol.

I stayed overnight in the hospital with a drain that her resident removed the next morning. I went home after lunch, around 2:30 pm. My first follow up is this coming fri, june 12. I asked if i could get a Medrol pack but she didnt prescribe any. I respond pretty well to steroids and i reiterated to her office i have psoriatic arthritis so my inflammation tends to go high after injury or surgery but her RN said she was concerned about healing since i’m on immunosuppressant medication (i did hold my injection week of surgery).

Anyway, i’m plugging along. My surgeon is Hilary McCrary, MD, MPH at the Huntsman Cancer Hospital and Assistant Professor of Otolaryngology – Head and Neck Surgery at Univ of Utah. I didnt get a chance to speak with her after surgery nor did my husband. She called and left a brief message with him cause he didnt recognize the number so didnt answer the call. :woman_facepalming:t3: So i have no idea what she saw during surgery. She originally was planning intraoral robotic assisted procedure but changed her mind to transcervical after my CT-A showed twisted “torturous” vessels that would make oral surgery too risky for bleeding. She ordered a new CT with specific cuts and 3-D rendering after my initial consult with her back in April. She initially was going to prescribe tylenol and ibuprofen but not narcotics unless i really needed them. I typically do well on hydrocodone after surgery. I dont take nsaids because i have a history of stomach ulcers from too many nsaids over the years for headaches and neck pain. So she prescribed Journavx (suzetrigene). I was in a lot of pain the evening/night of surgery and they didnt start the suzetrigene till about 9 pm but I finally got pain relief at about 2 am. Ice packs and sleeping elevated helped a lot the first 3-4 days. Swelling peaked about day 3-4. I alternate extra strength tylenol with the suzetrigene every 12 hours so i’m taking something technically every 6 hours. I thought i could reduce my meds schedule to once a day but my pain has increased some the past 3-4 days so i’m back to the original twice a day dosing. The suzetrigene scrip is for 14 days with no refill. I’m not sure if she’ll refill for me at my follow up but i plan to ask. Thanks for reading all that! This group has been so helpful! I appreciate everyone!!

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@Bcats0318 - Thank you for coming back to let us know you finally had surgery & to tell us about Dr. Mc Crary. She sounds quite experienced with ES surgery & I hope your outcome will improve over time. As you’ve read on our forum, it can take quite a number of months for ES symptoms to reduce/go away because injured nerves are very slow to recover taking from several months to a year or more. It’s also very common for symptoms to begin to go away then come back again in a “come & go” cycle during recovery so the fact that you’ve had a pain/symptoms flare two weeks post op isn’t surprising.

I took Rx pain meds for 6 weeks after my first surgery i.e. according to schedule the first week post op then as needed in the following weeks. I cut the frequency back to 2x/day (from 4x/day) in my second week post op & reduced them again to only at bed time in week 3 then cut them in half & took them as needed after that. I also can’t take OTC NSAIDS (except Rx versions) for the same reason you can’t.

Your lip droop is from the facial nerve being irritated during surgery, & as you noted it’s recovering, the lip droop should heal completely w/in a month or two. The weakness & pain you have in your neck down to your collar bone is from your spinal accessory nerve. It’s also commonly irritated by surgery. You can try using a technique called nerve flossing to help stimulate that nerve to recover. Here are a couple of links to guide you, however, if any of the exercises cause your pain or arm weakness to get worse, then don’t do them. It may be a little early to start these so waiting another week or two might be better, but it won’t hurt you to try them now.

Please keep us posted as to how your recovery is going. I hope Dr. McCrary will give you a refill of the Suzetrigene. I added her to our Doctors List.

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Thanks for the encouragement! And yes i remember reading thru many surgery posts. I always want to know what to possibly expect as i’m an overthinker unfortunately. I’ve been thru so many surgeries it’s ridiculous. I’m so tired. I just want to feel better. And stay better.

Thanks for the videos on the nerve flossing. I’ll wait till see what my surgeon says on fri but i’m sure those stretches will help a lot. The only numbness i feel is from my incision up into my jawline (as wide as my incision all the way up). I have a very sore spot along my jawline, like right in the middle of my mandible. I’m thinking it’s from the surgery positioning. When i was 26 i had orthognathic surgery on both jaws to correct a severe open bite and they fractured and reset my lower jaw and i have ligature wires in the spot that is very sore so that’s why i suspect something like positioning. I plan on asking her about it on fri. I hugged my husband tonight and kinda forgot about it, then was reminded real quick.

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Anyone Else Navigated All This? Headaches & Orthodontia & ES, Oh My!
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I’m sorry that your recovery is more painful & bumpy than you expected, it does vary a bit depending on the surgeon’s technique, how much ‘digging’ they have to do to get to the styloid process, nerve positions relative to the styloids and whether they have to be moved, and of course other health conditions , so you can’t always prepare for everything… As @Isaiah_40_31 says you obviously have irritated facial and spinal accessory nerves but these usually resolve with time. The trigeminal nerve could possibly be irritated too, and that causes jaw pain, so with your previous surgery could be affecting your jaw.
Obviously we’re not doctors on here, but it’s been stated on here that steroids would slow healing long term, but a short course shouldn’t affect this, so maybe push for that when you see her on Friday?
Hang in there, things should improve soon :hugs: :folded_hands:

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Thank you! I do plan on asking about steroids at my follow up on fri. I strongly suspect surgery positioning combined obviously with surgical manipulation as the source of my post op pain. Since i didnt see my surgeon after surgery, i do plan on asking about my styloid at this visit as well. I know my situation isnt just straight up eagle syndrome and it is complex due to degenerative disc disease throughout my cervical spine, bilateral TM degenerative joints, and that whiplash injury i had in 1978 that was never properly assessed or treated. When i was 40 i had bilateral TMJ arthroplasty so i’m no stranger to jaw issues (braces on twice as a teen, and a third time for my orthognathic surgery in 1985).

I also have an ongoing issue with my eyes that may be also contributing to my left sided neck pain/tightness. I was born with crossed eyes and have had two rounds of eye muscle surgeries. Typically they do in 2-3 surgeries a few months apart. First round i had done when i was 1-1/2 and 2. Then again when i was 18-19. I got glasses when i was 3 but never learned to use my eyes together. Over the past few years double vision has worsened from only noticing it happening when i’m tired to now daily with watching tv and even driving. I have to turn my head to the left to stop the double vision. I get headaches from the eye strain. My right eye is my dominant eye, my left eye drifts. It’s been so long since my last eye surgery i thought i was past all that. I did have some double vision probably 1997 or so and tried prisms in my glasses but i could not get used to them. I’m 67! Ugh.

I will be seeing a strabismus specialist june 19. Every time i go to a dr’s appt and call my husband afterwards, first words out of his mouth are, “when is surgery?”

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It’s so hard when conditions overlap and the symptoms are similar to work out what’s what!
Have you had eye scans recently to check for any swelling of the optic nerve? That can happen with IJV compression, & can cause double vision, might be an idea to get that checked if not :hugs:

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I did get an eye exam by a specialist ophthalmologist last oct prior to all the dynamic angio and veno grams and the dr said my optic nerve was fine, no sign of high pressure, etc, but did recommend i see a strabismus specialist at that time so now finally getting to that.

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Saw my surgeon today. 16 days post op. She said my styloid was angled more towards midline than straighter down and she was able to remove to skull base. She was “perplexed” as to why i had arm weakness and thought it could be due to my neck fusion and surgery positioning. She put in a referral for a pt eval and prescribed a Medrol pack after i asked her about it. She agreed it could help with my inflammation.

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Good that you’ve been prescribed the medrol, I hope that helps, and PT as well … If the styloid process is curving in towards the midline, the jugular foramen is in that direction also where the spinal accessory nerve exits the skull, so would it not be possible that it’s been irritated during surgery? :thinking:

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I agree w/ @Jules that your spinal accessory nerve was likely irritated by surgery possibly by having to be moved out of the way. That’s the most common way nerves are irritated during surgery.

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I agree with both you and Jules. I think the procedure + the positioning and retracting had to have impacted that nerve. I have all the symptoms except for scapular winging. Pain in my shoulder and drooping, weakness lifting my arm out or above my waist, difficulty turning my head to the opposite side from my surgery.

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I’m sorry you’ve been left with those symptoms, but hopefully they’ll resolve as more time passes. You can try PT as that has been very helpful for some of our members who’ve done PT post op for shoulder/arm weakness & immobility.

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Hope this resolves quickly :hugs: :folded_hands:

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Update post-op day 26 left styloidectomy. Not sure if i’m posting this here correctly. Anyway, i felt better when i first took the Medrol pack but it was for only 6 days duration so by this past wknd my pain ramped back up. I took it from june 13-june 18, which was 2-1/2 weeks post op.

My arm weakness and shoulder/collarbone pain is not any better. My upper arm and underarm seem “puffy”, such a weird uncomfortable feeling. This is not a new symptom tho; i’ve had this left arm “swelling” for almost a year but it is definitely worse since surgery. I have the most pain in my collarbone in the mornings when i first get up. If it’s early and i lay back down the pain radiates up to my ear and makes it hard to fall back asleep. My surgeon prescribed Lyrica today (pregabalin) which i will start tonight. I resumed my Enbrel this past Fri once i finished the Medrol pack. I missed 3 doses.

The pain and tightness around my incision area, jaw, & neck is about same too. The swelling is not as pronounced as right after surgery but is still there. As i write this post tonight my incision area is throbbing and i realize i havent taken any tylenol in a while. :roll_eyes: This coming wed will be 4 weeks since surgery. My incision area and up to my jaw feeling more “zappy” pain as i suspect the nerves are waking up a little from surgery and as swelling goes down. I’m hoping that’s the case anyway.

I’m trying really hard to be patient. Keep telling myself i didnt get here in 2 mo, so get a grip and be patient! I have a consult appt this Wed with a chiropractor who specializes in ART (adhesion release therapy) so we’ll see what happens.

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It might be worth trying self massage to help settle swelling down, here’s a link:
How to do Lymphatic Self-Massage on Your Face, Head and Neck
Have you ever been assessed for TOS, if you’ve had arm swelling & pain?
The zappy pain is a good sign that nerves are healing, even though it’s annoying! It is hard to be patient, I know, hopefully the Lyrica will help you and that everything will settle down soon…sending you hugs and thank s for the update :hugs: :folded_hands:

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@Bcats0318 -

This is not uncommon during recovery from ES surgery. I felt like I was on a pain “roller coaster” during my healing. I’d have a period of days where I felt pretty decent but pain would return for some time after those good days. Gradually good days would replace the bad ones & the cycle would repeat. I could sometimes pin the “bad” days on overdoing it on the good days, but there were times that rule didn’t apply. The recovery can feel agonizingly slow, but as you acknowledged, your body is working hard to help your nerves heal, & it may take quite a number of months before you feel back to more normal. Though I began feeling pretty good by 2 months post op, it wasn’t until 6 months after surgery that I really felt my symptoms were slipping away in earnest.

I had the same thought as @Jules about this possibly being a symptom of TOS. Irritation of the spinal accessory nerve is what can cause arm weakness, shoulder/collarbone pain & that nerve often has to be moved out of the way during ES surgery which makes it more angry. If however, there is further nerve or vascular compression in the brachial plexus, that can cause the shoulder/neck/arm problems not to recover after ES surgery.

I took pain meds for 6 weeks+ after my first ES surgery. In the last 4 weeks it was mostly just before bed so I could sleep, but there were days I needed it midday as well. Keeping pain at bay does help with healing as it keeps you from the mental/emotional battle that dealing w/ chronic pain causes.

I went to a chiropractor for several years who specialized in ART, but it stood for active release therapy. I bet it’s the same thing. I got ART for my shoulders, quads, glutes, & back during the years I did long distance running. It was very helpful, but it can be painful. Sometimes a technique called Graston is used in ART which is also painful. Just make sure that the doctor you see will do gentle work on you. Strenuous physical body work will not be your friend at this point.

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@Isaiah_40_31 @Jules I’ve not been evaluated for TOS, but i did see my pcp last summer about my arm swelling. He thought it was related to my neck and referred me to the neurosurgeon who did my recent (at that time) lumbar surgery. I never went. A different neurosurgeon in that practice did my ACDF but he had no openings for months, and i was recovering from my TLIF plus several oral surgeries and just had no bandwidth left.

I do suspect my arm is related to my neck somehow but finding the right specialist who can do the right diagnostics is a pipe dream.. as we all too well know with dealing with ES.

I am hesitant to be on Lyrica but willing to try for a few months, at least give it a chance. Tylenol is marginally helpful but better than nothing. Susetrigene did help more than i thought but studies on it for acute pain relief has only been for 14 days. And that was the scrip i had coming home from the hospital, 14 days , no refills at all.

I’ve been doing some more ROM movement and some gentle massage over the past few days. I am able to sleep on that side now and not elevated so that’s an improvement. But mornings are when i feel the worst. My collarbone area hurts so much.

I’ve had enough surgeries you’d think i would know what to expect ffs. Like having a baby, i forget some of it somehow. When i’m going thru it i always tell myself, yep..here it is, that familiar post op routine. And then i look back thru my journal and realize i survived it. Again. Just trying to give myself grace. I’ll update after my chiro appt tomorrow. If they cant advise me who to see about my arm, i plan on at least seeing my pcp again and going from there.

Thanks to everyone who runs and participates in this group, it’s a lifesaver!

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I’m glad that there’s a little improvement , being able to sleep on that side- I couldn’t with mine for months- so if you’re able to focus on even the little things that will hopefully help. Reading a journal if you’ve done that after previous surgeries is really helpful, that’s a great idea. I can’t remember the details of my recovery after my styloid surgeries, I don’t think it was too bad, but I might well be remembering it with rose tinted glasses !
You did survive before and you will again, you are strong :hugs: :folded_hands:

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Great news that you can sleep on your operated side now! I was in @Jules camp, & it was a number of months before I could sleep comfortably on my operated side after my first surgery. It was quicker after my second & third surgeries.

I hadn’t heard of Suzetrigine so had to look it up. Interesting that it’s limited to a 14 day Rx as a non-opioid. Maybe it’s still new enough the jury is out on how safe long term use is?

I hope doing the ROM work & massage begin to make a noticeable difference as well, @Bcats0318. Maybe try icing your collar bone when you first wake up to see if that helps. If ice doesn’t help, perhaps heat will.

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