@gramos, Thank you for your encouraging words for JC. Very solid wisdom/advice!
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Thank you! I read this to him at 2am and knowing there’s others with the same experience does help a bit.
There’s another guy here who had ES surgery and he’s walking around, talking with the nurses, acting like he never had his neck cut open. I wish him well, but dang. Hard to see that kind of recovery when 36 hours later JC’s barely getting his head off the pillow without roaring in pain. He said it feels like there is a rod in his vertebra and he can’t move his head, or when he does the headache is overwhelming and the meds don’t seem to touch it.
We’re going to see Dr. Kamran again today and see if we can get some answers. They keep saying it’s “normal” and maybe it is excessive swelling but he should be able to walk down the halls by now and he can’t even leave the room. I’m not super worried, but I am frustrated, and he’s very very frustrated and scared.
@Val7426 - Did the other patient have bilateral surgery with vascular decompression? A unilateral styloidectomy w/o vascular decompression is a “lesser” surgery than what JC went through & could explain the other patient’s ability to be up walking around & chatting with nurses. It could also be that JC was in worse shape before surgery so has further to go in recovery than the other patient.
The first week or two post op is when the swelling & pain are by far the worst especially if the surgery was bilateral. I think you’re very wise to keep following up w/ Dr. Kamran. Ask if he’d be willing to Rx a course of oral steroid medication for JC to see if that helps reduce his pain. I hope he would be willing to do that.
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Other guy had the same surgery but he was more for the vascular decompression as opposed to the styloids. Many people who see Dr. Kamran come for the IJV decompression and a styloidectomy is part of that, even though their styloids are in “normal” range.
The doctor’s opposed to any narcotics or steroids. I should have brought the prednisone with me. They’re giving him just enough Tylenol that it prevents me from topping up from our T3 stash, but I have been able to sneak him some Ativan and pregabalin on the side. Enough to help him settle for an hour and keep his nerve pain at bay (he has nerve pain in other areas so no use discontinuing).
Plan is for maybe discharge on Friday. It’s a tough call, I kind of want to get him out just so I can handle the pain management and start him on the prednisone. But here there is the nice adjustable hospital bed, railings in the bathrooms, and he doesn’t think he could handle the 40 minute drive to the Airbnb.
In some ways I’m painting a worse situation than it is. Everyone is nice, the hospital is 5-star, the surgeon is clearly capable… these are just some of the hardships being away from home. Even still, there is no regret coming here for the surgery. We would have been spinning wheels had we stayed in Vancouver.
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May I present to you… styloids in a jar. They were both the same length but one had to be broken into pieces for extraction. They remind me of those little drink swords that are used for garnish.
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WOW! SUPER LONG! No wonder he was having such bad symptoms!! Many of us in the US have asked for our styloids, but they’re required to be “sent to the lab for evaluation” (whatever that means 
) so we often don’t even get to glance at them before they’re sent away.
I agree with you that JC will be more comfortable once you’re able to get him back to your Air BnB & dose him more appropriately with pain meds & steroids. I will pray the dizziness & tender/stiff neck will lessen to the extent he can travel by Friday. 
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Thanks! Do you hear of many people have back of neck pain after the surgery?
As a reminder, he was told he had mild CCI, but then after the DMX the neurosurgeon said he does not. The pain is right in the base of skull area (mind you, he also had the C1 shave) and then it wraps up his skull. I would say C3 and up. It’s not really the neck incision or that area as so much as it’s like a non-moveable metal pipe replaced his neck.
Thanks again for all the kind words of support!
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Does applying ice to that area help the pain? If it does then it should all be from swelling! Doctor described Meloxicam for pain for me, but remember to protect the stomach with pantoprazole. Also he really needs to stay as up as he can, in bed try stay as elevated as possible so the swelling can go down. And he must try to stay in his feet for as much as he can. Call nurse help to do so! And also do not accept to be discharged from hospital until you feel a bit more stable, you really need the help of that bed with elevation and nurse help. If it takes a week so be it! They say all of the patients stay one night! But I doubt that is true and in hotel it’s pretty hard to adjust elevation, I used 5 pillows to try and do something similar. Also take care for the food, the food in hospital even though its decent, it wasn’t suitable for people like us. Try to bring more fruits like pear, bananas… Turkish food is very hard and overwhelmed in oil and spices!
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Thank you @gramos.
We finally have ice packs. The unit was low on them and we didn’t bring ours from the airbnb. It seems they bought more because today he has more ice packs.
I got into a very public argument about pain management and now they are giving him medication. It’s not that JC didn’t want to get up, but he had so much pain that he could only sit up for 20 seconds. Now that the pain is under control he is walking around a lot more and we even went outside for a few minutes. Spent some time talking with the other fellow who had surgery yesterday and how surgery with Dr. Kamran has gone. Everyone’s story is their own, but also so familiar.
I think yesterday was a bit of premature drama, but it had to happen to get JC the right kind of pain management and enable him to take this next step. He’s still too sore to chew/swallow, lots of pain, and his neck looks like that of a lumberjack but he has more hope things will change in the next 48 hours.
They told us how JC was positioned on the table and the torsion on his neck. Considering he recently got a CCI diagnosis it’s no wonder he has excruciating pain in that area. We assumed he was on his back but it sounds like he was on his stomach, with his face kinda dangling over the edge, so it’s a lot of force and load-bearing on those vertebrae.
I brought an inflatable wedge pillow and it’s waiting at the apartment. It’s really going to come down to if he can handle the 30+ minute ride back to the Airbnb. If not, he’s not ready to leave and we’ll stay another day.
Hoping tomorrow’s update is even more optimistic.
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Poor JC, & you, watching him go through this- by the sound of the surgical positioning, it’s not surprising that he has pain in the back of his neck! Well done to you for pushing for him to have better pain relief. I hope that this really helps, and he turns the corner now. Praying for you both 
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I can’t believe they didn’t keep their ice pack supply up in a surgical ward, @Val7426! I’m so sorry JC didn’t have access to ice for the first couple of days!! I applaud you for standing up to the medical team regarding how they were managing his pain medication. You must be JC’s hero now that he is feeling better. Good job advocating for your husband. You shouldn’t have had to do that! Do make sure you have a laxative & stool softener at the ready if he’s started on Rx pain meds. It only takes a couple of doses to slow intestinal motility & cause a back up that can be painful to deal with.
I had an extremely sore jaw & throat after my first surgery. My throat was better in 4-5 days but my jaw took several weeks to settle down so I could chew food. I sympathize w/ JC. I also had skull base pain post op for a number of months but not pain specifically in my neck. Interesting that JC’s surgery was done w/ him on his stomach. That’s the way my surgeon did it, too, w/ my head rotated to the side. He also dislocated my jaw for better access to the styloid which explained why my jaw was sore for so long after surgery. In the end, the dislocation, actually helped reduce my tmj pain but for others who saw that same doctor, it made their tmj problems worse. It would be nice if there could be discussion about such things as surgical positioning before the surgery so particular post op pain could be anticipated or prevented.
I do hope he is well enough for the two of you to head back to the Air BnB tomorrow, but I also agree w/ Gramos that if he needs to stay for another day or two, that is fine as well.
I’m continuing to pray for his recovery & for you to have wisdom in caring for him & peace in your heart.
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Never occurred to me that he may have dislocated the jaw. It would make a lot of sense. JC and the other guy both have issues opening their mouths more than 1cm, granted, it could also be irritation from intubation for 6 hours.
This morning is better. He had a rubbish sleep and it shows, but he put on sweatpants and we went to the cafe for a tea. He’s been up every hour walking the hall. I’m going to push him more this afternoon and get him outside for fresh air.
The doctor popped by and asked about discharge. JC wants to stay an extra day, so that’s fine. His pain has changed to what I would consider normal post-op levels. Some pain in his ear, fullness in his ear, nerve tingling, lots of trap pain and back pain, some incision pain. Of course the chewing and swallowing. But today it feels better all around, things are going okay and in the right direction.
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I’m so pleased that it sounds like JC has turned the corner a bit anyway, that’s positive! Like you say, it sounds more like the typical post-op symptoms now rather than the extreme pain he was in before…You’ve done so well helping him, I would be too daunted to be doing that in a foreign country! Taking my husband for surgery in London was worrying enough, you’re a star 
Praying for you both
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That’s GREAT NEWS, @Val7426! I’m so glad JC is finally doing much better. I hope his pain continues to decrease & his jaw & throat get to recovering quickly so he can start eating normally again soon. I also hope he’s able to leave the hospital tomorrow.
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Okay, little update.
Discharge was yesterday. I am entirely shocked, we have not encountered a bill for the extra 2 days in the hospital. When we explored the US it appeared each extra day would cost $7-10k ($14-20k total) out of pocket. In other words, the cost of the entire surgery here in Turkey. Just absolutely wild and it validates our choice to come here, despite some of the hiccups/frustrations (which can be encountered anywhere in the world).
JC is grumbling about his pain more, but I take that as a good thing. Usually silent suffering shows the worst pain and once you have the energy to complain it’s an upswing. I’m sure he entirely disagrees.
Here’s where things are at
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Developed first bite syndrome.
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Started prednisone: second dose. It seems to be making him quite nauseous and feeling sad, but right now fingers crossed the long term benefits outweigh the side effects.
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He still cannot open his mouth more than 1cm, and it is painful to chew/swallow.
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He started getting spasms under his chin (like a Charley horse) and they are quite painful. It’s the soft spot under the chin, behind the jaw bone
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It feels like his neck is always about to spasm when he is standing.
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He is really dizzy, and feels there is a pressure in his head. He said it’s like a ghost is pushing him from behind and he feels pretty out of it, lots of brain fog, like before surgery.
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The swelling has really ramped up his sleep apnea and he hasn’t had a good night sleep since the surgery. He wears an apnea nightguard but can’t open his mouth enough to get it in.
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He is up and about. Went downstairs to the grocery store (maybe 5 minute walk), and is making his own food (instant mashed potatoes lol). I help with heavy stuff or bending, but he’s far more mobile now.
Starting today we’re going to discontinue narcotic pain meds and introduce a muscle relaxant along with the prednisone. Hopefully this will stop the spasms and help him sleep at night. For the sake of keeping an accurate diary, it is Flexeril (cyclobenzaprine).
The doctor did a normal CT after surgery (no contrast) and we will see it at the follow up which is on Wednesday. What do people think about getting a follow up CTV in the next few weeks? It would be $500-600USD, but is it worth it to ensure the IJV is still flowing?
I’ve read about people with IJV flow restrictions after surgery, but I don’t know if that’s only people who have styloids removed and not a C1 shave. We want to make sure the decompression worked.
Also, thanks to those for the private messages and WhatsApp conversations. You know who you are, and you’ve been tremendous in helping navigate these past few days. We’re forever grateful for this community.
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Well, positives in that he’s more mobile, and able to grumble! And that you haven’t been billed for the extra nights!
It does sound like the muscle relaxants might help, but see how he goes reducing the pain meds, that might set things back? There could well be plenty of swelling still which would be keeping the dizziness & brain fog going…It did find I couldn’t open my mouth wide for at least a week, I can’t remember exactly, but although it’s frustrating it is common after surgery.
In my personal opinion, I wouldn’t have the CT with contrast just yet, I understand that it would be easier and cheaper to have it now, but there will still be swelling so you won’t necessarily be able to tell anything yet- if the IJVs haven’t re-opened, you won’t know if it’s because they’ve been compressed for a long time, or because the swelling is still restricting them if that makes sense? It’d leave it & see in 6 weeks- 3 months, but that’s just my personal opinion, I don’t know what a doctor would suggest.
Keep strong, hugs to you both, prayers too
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Thanks, that timeline and rationale makes sense. It’s more concerning the lack of access at home. A referral for a CTV could be 2 months, it could be 8 months.
His referral for an ENT consult for ES was in September and he still hasn’t heard back with an appt date. In that timeframe he’s had a diagnosis, surgical consults and flown halfway across the world and already had surgery. Our system is so so so broken. But no point throwing away good money on a CTV if it’s too soon to show anything.
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I completely agree w/ @Jules on why it’s too soon to have a follow-up CTV as well as why JC’s symptoms are still pretty extreme. Also, stopping the pain medication this soon could definitely set JC back w/ more pain as he’s in the window where post op swelling is at its greatest. Better to keep him on it or at least Extra Strength Tylenol for the first week. Prednisone is a great anti-inflammatory but it’s not a pain reliever & Flexeril as a muscle relaxant could also be helpful but it also is not a pain reliever. He may need all three to help him have less pain over the next few days.
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Last update for awhile, until there’s more to report.
JC saw Dr. Kamran today for an 8 day follow up. The doctor explained that in addition to cutting the occipital artery, he also cut the belly of the digastric muscle. JC’s was 6x larger than normal, and covered both the C1 and styloids. While we think this may be way his mouth feels looser, it may also explain why he’s not able to open his mouth and the chin spasms.
The doctor explained that the vascular symptoms can easily take 6-12 months to fully resolve. He explained that while scar tissue is forming, it takes up space and as the scars fully heal the skin will pull and get smaller, and create more space on the inside for the IJV to expand. Same for the digastric muscle, it will eventually atrophy and dissolve, and create more space for the IJV. This is a long term recovery process.
After 8 days he still cannot open his mouth enough to eat normal food. It’s instant mashed potatoes, eggs, and protein shakes. We were told to give is ~2 more weeks.
The unresolved and current symptoms:
First bite syndrome
Pressure in head and dizziness
Base of skull pain
Chin spasms
Numbness from ear to jawline
^he has told to be patient and well check in with the doctor on Jan 8
Things that are better
Tongue feels looser, less tethered
Tinnitus is better
No feeling of lump in throat
No feeling of strangulation
So that’s it for awhile folks. Progress will be slower from here, less major changes. But if anyone has questions about the surgeon or other, feel free to reach out.
Oh and lastly. More photos. Both styloids came in at ~5-6cm but one was broken during surgery so we only got part of it back.
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