Thank you for all this info. They are absolutely planning on taking pictures of this monster. To quote Dr. Tobias “quite impressive” stating it was one of the larger one they have removed. Also Dr. C is absolutely gobsmacked that we share images of all of this online. I explained to him that it has been extremely valuable for me to research and prepare in the best way possible.
2 Likes
Yeah, I think some doctors feel like they’re the only ones who can accurately read scans & that we lay people are clueless. What they don’t understand is that too many radiologists & doctors themselves are incapable of at least realizing that what they’re seeing is significant to a patient’s diagnosis, so out of self defense, we the patients have learned to read our own imaging. 
3 Likes
I think he was surprised that we would share post surgical incision site pics, removed styloid pics, and some of the gory yet important stuff that answers questions that only someone who has really been through this can share. For example, I was able to compare incision sites from all of the major doctors who perform styloidectomys.
2 Likes
That’s fantastic news, I’m sure getting rid of it will make you feel so much better! Will be praying that all goes well, & that your symptoms disappear! Let us know how you’re doing when you’re up to it… 
2 Likes
Hi All, Here is an update day 1 after surgery…feeling better than expected! Achy at the incision site. Brain fog is lifting. My facial nerve is intact, numbness in my ear (they cut this nerve to save my face). Really amazing surgery. According to Dr. C and Dr. T I have the biggest styloids they have ever removed. The IJV was seriously compressed in 2 places. I will know more in the next couple days at post op meeting. Here is a pic of the incision on day 1 after surgery. Will post more pics as I get them.
3 Likes
@babsbr - Your incision 1 day post op looks absolutely wonderful. It may swell a bit over the next few days but for now, WOW! I’m really glad you got that huge thing out of your neck. I bet your brain will be very happy about the new level of blood flow, too!
Please continue to update us. I will be praying for your recovery to provide you with much symptoms relief.
3 Likes
That’s brilliant, a lovely & neat incision to have done all that through! Thanks for letting us know so quickly, how are you with eating/ opening your mouth? God bless, & praying that you heal well 
3 Likes
Did they take any pics of the styloid??? That thing is huge with a gnarly shape.
I have very similar symptoms to you with brain fog, one sided facial spasms (mine actually involve my neck muscles too), among other things. I’ve been through many neurologists who suspected things like tics or hemifacial spasm, but none of the diagnoses quite fit. I’ve always said it feels like something in my jaw pinches a nerve and then the spasms hit, so this could all make sense as a diagnosis.
I just had a consult with Dr. Osborne in LA and he’s reviewing the MRIs I’ve had (I think the styloids are visible on a few, see my post history). So tbd if it’s Eagles, but even if it’s not I’m hoping he can point me in the right direction. If I end up needing a styloidectomy I really want keep them and turn them into earrings
5 Likes
I argued to keep mine, too, @klizaus, but there are laws in CA that make doctors send the removed styloids to a lab for evaluation. I suspect the lab just tosses them once they get there, but maybe they actually check them for whatever it is they need to check them for.
A few years ago someone posted a link to a necklace that looked like it was made w/ 2 silver styloids. it was pretty funny! Here’s the post:
3 Likes
Day 3 incision pic and still waiting for the images from Dr. C. The scab area on the top is where the drain was.
Everything they removed from me went to pathology, for tissue exam:
A-Lymph node, level two left cervical, excision: TWO LYMPH NODES WITH REACTIVE FEATURES, NEGATIVE FOR MALIGNANCY (0/2).
B-Muscle, left digastric posterior belly, excision: UNREMARKABLE SKELETAL MUSCLE. NEGATIVE FOR MALIGNANCY.
C-Bone, left styloid, excision: UNREMARKABLE BONE AND BONE MARROW. NEGATIVE FOR MALIGNANCY.
4 Likes
I’ve got to say your incision looks pretty amazing for all that was taken out of your neck through it! Great to know that everything was benign, too. I hope your healing moves along smoothly & you start having some good symptoms relief soon.
2 Likes
Hi Guys, today is day 7 after my surgery. I’m feeling optimistic… but def have a bunch of post surgical swelling and movement discomfort I’m dealing with.
Last week I followed the LWE plan and ate only soft foods. The colder the better as it soothed my throat. Opening my mouth wide is painful. The surgical side of my face is tingly and numb. How long till this swelling goes down? I started a nerve regeneration vitamin cocktail and hoping this really helps.
I know it’s been only 7 days, but I’m getting antsy and want to move around more. Which I have and may be contributing to my increased discomfort… also reduced my pain meds, but I will get back on those too tonight.
My head is clearing significantly which is fantastic, thoughts are flowing and problem solving is returning. Happy.
I’m trying to form a plan to resume physical activity, as I’m the type that over does it when I’m feeling better… Guidance would be helpful! I’m still waiting for the pics from my surgery and will post as soon as I have them.
2 Likes
Great that your head is clearer, the tingling & numbness in your face can take a little while to go, it may well be weeks, even gradually over a few months.
Walking is fine if you’re getting stir crazy, is there anywhere nice to walk where you are? Just a short walk if you’ve not done much for a week to start with & see how you feel, you might be wobbly. I did enjoy some nice walks in the woods near me after this first few days, getting outside is so calming!
Keep healing well
1 Like
@babsbr - I am also an over-doer when I feel good. Be careful of that during recovery. Start your physical activity by baby steps not leaps & bounds (which I didn’t do & paid for it for a number of weeks afterward). As @Jules said, short walks, even more than one per day if you tolerate them well, are a great way to start back to moving. Light housework can also be ok as long as you’re not doing any heavy lifting (like full laundry baskets, heavy trash bags, etc). You need to “play it by ear” & find out how much or little you can do w/o setting symptoms off. It’s trial & error initially. If you do push your self a bit too hard & symptoms flare, plan to take the next day or two off to let them settle back down again. I’m glad you still have pain meds you can take. Most people are off of them w/in a week or two but I needed mine for 6 weeks post op & was thankful to have them though I did begin tapering at the end of week 2.
3 Likes
Quick update Team ES… Today is 15 days post op… I’m continuing to improve. I do not recommend this to anyone on the board, just supplying this info as a baseline for others to know it’s possible. I started driving very carefully on day 9, drove to work, a short distance to see how I felt to walk around my warehouse. On day 10 I went to the gym and worked some machines at very very low weight to reignite my body’s muscle memory, all while under the watchful supervision of a trainer. It felt good to stretch and flex the body and the endorphins are magic for healing.
I also started taking Neurotropic vitamins a cocktail of amino acids and B vitamins thiamine (B1), pyridoxine (B6), and cobalamin (B12), which are crucial for regeneration of the nervous system. I’m attaching a photo. I think that they are helping with nerve regeneration and tingling feeling at my ear and face, the facial spasms are decreasing in severity and frequency. The neck swelling in decreasing and I’m now taking Motrin to help reduce inflammation.
I had a frightening moment when I removed the liquid skin from the suture site on day 11, pure anxiety as I moved too quickly and got my heart pumping too fast, dizzy and needed to sit down on the floor to calm down. I checked the suture site and then recovered it with steri strips as an extra precaution. Also had some neck muscle/nerve agitation when my husband took me for a drive down a not so smooth country lane. Uggg.
Yesterday I drank my first post surgery cup of coffee and it was my first day back to work. I’m navigating my warehouse just fine, similar to pre surgery. I did get a little tired after 4 hours, and some brain fog creeping in later in the day. Going slow, and watching for CCI issues. Because of my EXTRA lifestyle I have stayed away from coffee till now. I also have a soft neck collar I’m using as a security precaution at work. As a reminder to not overexert myself.
Still waiting for Post Op meeting with Dr.s and I will try to update further with images etc. in the weeks ahead.
5 Likes
Was thinking of you so glad you’ve done an update! It’s really good to hear that you’re able to resume some activities & it’s sensible to be careful with those! I took B group vitamins for nerve healing too, not sure whether they helped or not, but can’t do any harm…Your incision is looking really good too!
Take care, & hope that your ES symptoms are improving along with your healing…
2 Likes
@babsbr - You’re doing all the right things to allow your body to recover well plus your optimistic attitude is helpful, too! I’m really glad you’ve been able to go back to work so soon & am glad you’ve found ways to remind yourself to take it easy for a while yet while still being productive.
I agree that your incision looks quite good (so do you!) at only 2 weeks post op! It’s nice that it’s mostly behind your ear so your hair will cover it. It’s so interesting to see where different doctors choose to put their incisions for ES. It’s also good that most incisions are practically invisible once fully healed.
Please keep updating as you have time. I’m sure your neck is in a constant state of celebration now that your humongous styloid is outta there!! 
3 Likes
Today was 5 weeks post op appointment. Here is a pic of the ginormous calcified styloid removed from my neck. There is one small piece missing from the image, clearly it was quite large totally 6cm long and almost 1cm wide, causing lots of compression.
3 Likes
Sorry if this is graphic TMI, but some could benefit from this info. More images from surgery showing the structures that were adding to the compression of the IJV. All this in addition to the C1 were all compressed and causing a host of symptoms. First image, shows (labeled) the styloid, IJV and artery that was crossing across the IJV causing compression of everything from vegas nerve, facial nerves, IJV, muscles, etc.
Second image is after all structures have been removed and the IJV re-inflated.
3 Likes
This is a pic of my incision site as of today 5 weeks PO in addition to images of the silicone products I’m using to minimize the scar. Most of my symptoms have resolved about 90% including the facial muscle spasms. My neck is still a bit swollen, but not to a degree that anyone other than I would notice. A little tightness in my neck and I feel it when I turn my head. Brain fog is still lifting and some days are better than others. Getting tired in the afternoons, which is normal recovery. I’m cleared to resume all activities, gym, work, even running (most of which I have already started). I’m going to start PT for extra mobility and strengthen neck muscles.
I’m very happy I had the surgery. Of course I’m expecting some recovery setbacks as I push the envelope and engage in more activity. Rome was not build in a day LOL. Now I have hope, knowing the styloid has been removed and it’s up to me to follow thru on the things that are necessary for my body to recover. We will be making plans to remove the right side in the weeks ahead.
Thank you to all have contributed to this site and shared information. You made my journey so much easier than you will ever know. Wishing the best to you all!
3 Likes