Thank you for coming back to offer your usual great advice, @PatientD. I hope your time in the hospital is healing and helps get you back on your feet. 
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Small update. JC had a phone call with the surgeon, Dr. Kamran, this morning. One thing I’d like to point out is that we have an 11 hour time difference. The doctor fielded our call from his home at 9pm at night so we wouldn’t have to wake up in the middle of the night to call his office. He’s been very generous with his time.
The doctor says there is 2.5mm and 3.0mm space between the styloid and C1 transverse process (it should be 1cm). As a result, JC has “extremely extremely” compressed jugular veins, the worst the doctor has seen (associated with ES). The surgeon will remove the transverse process back to the vertebral artery, to make room for the IJV to expand.
The surgical plan is to 1. Remove the styloids to the base of the skull 2. Remove the calcified portion of the ligament and 3. Reduce the C1 TP.
He reviewed JC’s DMX and disagrees with the CCI diagnosis. He also said the reduction of the transverse process doesn’t go enough back for the literature to support it causing CC instability (I know people have other lived experiences). He is a neurosurgeon with a spinal specialty so fingers crossed this is the case.
We forgot to ask about what he’ll do to help avoid first bite syndrome; that seems to be a common complications so anything he can do to reduce the chances would be awesome.
He said some people do physio out of habit, but it really shouldn’t be necessary for this kind of surgery. If there’s other things to be addressed (there are) then to go for a few sessions but this type of procedure doesn’t usually require rehab. JC will stay the course with his physio post-surgery, which is to treat his neck and traps.
When we asked how to prep he joked and said make a list of all the places we want to see in Istanbul so we can take photos and show everyone when we get home.
Overall, feeling good. Scared. Hopeful. But this man seems legitimately nice, knowledgeable and has done a bang up job of describing what to expect. In one month from now JC will be in the recovery room.
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FBS is a consequence of the glossopharyngeal nerve having to be moved or manipulated during surgery. In some cases, as I experienced, it’s unavoidable. A surgeon won’t know until he can visualize the layout of the internal neck what “surprises” are awaiting him/her and, if there are “surprises”, dealing with those can be tricky in some cases. My right GPN was wrapped around my right styloid & had to be unwrapped so the styloid could be resected. I had a roaring case of FBS starting the 5th day after my first ES surgery which has never fully resolved. For most people it usually goes away completely in 3-4 months, but in my case, I suspect my GPN was sufficiently unhappy it never fully recovered though the pain is far less intense, & it happens much less frequently now than it did early on. Nerve monitoring during surgery is helpful in reducing nerve problems post op, but even with that it doesn’t eliminate them.
This isn’t true in every case though your husband may notice huge improvement in some of his symptoms soon after he wakes up from surgery. I had awful accessory nerve issues which resolved very shortly after surgery for me. If JC experiences that, his neck/shoulder issues may be a thing of the past & PT won’t be necessary. I will add that to my prayers for him.
This is AWESOME!! I love how Dr. Kamran accommodated your call & that he feels very confident that JC will have a good, smooth recovery, so you can enjoy your time in Turkey.
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I recognize FBS is situational and is often a) unavoidable and b) temporary. If I’m understanding correctly, someone from this group told us about a fat transplant (from the belly) which can help insulate the nerves and prevent irritation (this is for a different surgery). It’s that kind of ingenuity that we’re hoping to encourage in hopes it will prevent nerve-related complications. He takes Lyrica and Tegretol for other types of nerve pain so I think he’s planning to continue with it regardless, and it might help prevent post-surgery nerve irritation.
I think his comment about PT was more like longstanding ES can cause other complications so yes, PT could be beneficial or needed. But for the ES surgery itself, there’s no prescribed set of physio exercises or rehab (compared to my meniscus which has a set protocol for rehab). Does that make sense?
I hope you are continuing to have a speedy recovery, and no setbacks. He’s been heartened to hear some positive stories as of late. It’s sometimes hard to balance the light with the dark.
Oh! And we started the shopping list.
•Inflatable wedge pillow
•Melatonin
•Stool softener
•Saliva stimulating mints
•Mints/lozenges
•Scar oil
•Ice packs
•favourite tea
•packable soft foods (KD, instant potatoes, oatmeal)
•O2/heart rate monitor
And for my mom… crunchy peanut butter and Hawkins cheezies 
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I keep forgetting about the fat transplant to help protect nerves/blood vessels. I think that info came from @JugularEagle who is a fountain of knowledge, & we appreciate it!
Your comment about PT does make sense & continuing the nerve pain meds that are helping now should make a big difference post op, too.
My recovery is moving forward, but as with so many here, I wish symptoms resolution had manifested when I awoke in recovery! I have pretty much zero nerve pain at this point, but my tinnitus has ramped up (not unusual post op due to swelling) & left ear hearing loss is stable (at least it’s not worse!) vs being improved.
The only thing I’d add to the shopping list is a laxative to go w/ the stool softener as JC will need both if he takes Rx pain meds. His throat is likely to be very sore post op since he’s having bilateral surgery so ice chips/popsicles, cold things he can let melt & run down his throat, will be helpful. You can get those once you’re in Turkey.
I am so impressed with your due diligence. Your husband is lucky to have someone so detailed while he is struggling just to survive.
Isaiah, The fat transplant idea was not from me but thanks for the compliment.
Post surgery is where i am wondering if lidocaine popsicles , lidocaine sucker, or at least lidocaine mouthwash might help. Someone needs to ask a surgeon what they think about it. First two you have to likely get from a compound pharmacy.
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It was @Bowser who mentioned the technique, used by your doctor I believe? When he had TOS surgery, here’s a link:
Scarring from Surgery? - We’re In This Together - Living with Eagle
He certainly sounds like a caring surgeon…
Not long now for JC!
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I have an anti-inflammatory mouth “gargle”. It’s kind of like an ibuprofen-based rinse to help with minor throat irritation. I was planning to have that on hand. Ice for external swelling and the gargle for inside swelling. Come at it from both sides!!
Ask your doctor, or a pharmacist, but it’s my understanding that you can gargle with 2% lidocaine and swallow it is necessary. JC was having problems swallowing and had gastric distress and at emergency they would have him a “pink lady” which is really just a mix of lidocaine and pepto. I have a bottle of 2% lidocaine at home and could thin it into a gargle.
And thanks for the compliment, but really, it’s for as many compassionate reasons as it is selfish. I want my husband back!
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@JugularEagle & @Jules - thank you for setting the record straight regarding the fat transplant. I should have researched it a bit rather than speaking “off the top of my head”. 
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You’ve just had surgery, you should be putting yourself first & not worrying about doing detailed posts!! It took me a while to find it
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Well… it’s 7:30am and we’re here in Istanbul, drinking coffee and trying to figure out how to work the hood fan on some Star Trek high tech stove.
We arrived Friday night. It was a long day. About 17/18 hours of travel, 12 of it flying, and we have an 11 hour time difference. Thankfully with the help of some meds and glass of wine, JC got a few hours sleep. It’s been a rough acclamation period but he got about 10/11 hours of sleep last night and hopefully this marks the turn.
We got out a little to explore our neighbourhood, street cats at every turn. Street food stands to get pilav, pasta, baklava, döner, you name it. We’re further away from the city (closer to the doctor) but it makes for a unique experience being here in an authentic (non-touristy) neighbourhood. Last night we befriended some people who run a pizza place and they were so kind.
Today JC has the consultation with Dr. Kamran and if all goes well, surgery is scheduled for tomorrow! It’s mixed feelings. JC had cold feet the other night, and started to feel like he wanted to cry, just so frustrated with the situation. But when that happens it feels like he’s being strangled and it reinforces the many reasons why he needs to try surgery. We’ve talked about his hopes for the surgery, and what life may look like after the procedure is done. He won’t be dancing the night away, not right away, but we are hopeful things will be different.
I will be sure to update as he goes through the next steps. Please keep him in your thoughts and if you have any last minute words of advice please feel free to share!
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So happy that you are finally there. Wishing you the best!
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God bless, and will be praying for JC (& you!)
JC’s name came up on my calendar today to remind me that tomorrow is his BIG day. I’m so glad you posted an update @Val7426. It’s good news you’re safely in Turkey & I’ll also be praying for the best possible surgery & outcome for JC. Hopefully he WILL be “dancing the night away” soon enough.
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Wishing your husband all the best for today’s procedure. Well done to you for standing by him through such a tough time—having support like yours is so important, but I know it’s not easy being the supporter either. Sending you both strength during this period.
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Okay… so big breath because here it goes. Surgery is done!
The doctor will come by in a few hours for a debrief. He removed both styloids (I have them in a jar), untangled the occipital artery and did the c1 shave on both sides. From a surgical perspective, it went well. The surgeon said he would leave the styloids between 0.5-1.0cm, and when we questioned that he said this was better for the facial nerves and risk of palsy. He showed how the C1 was angled and said shaving the TP would leave the extra room and the styloids would not interfere. Fingers crossed. Because this is a neurosurgeon, not an ENT, he has an interesting way of explaining VES as almost a “cranio jugular vein outlet syndrome” (something like that) and his approach is removing the styloids for space but focusing on the IJV/C1 for a better long term outcome for those with IJV compression. He doesn’t have too much interest in classic eagles which he said can be handled by an ENT. So far there’s no indication of palsy, paralysis, FBS, tongue issues, or other side effects.
The unfortunate news is just how poorly JC feels. He was warned about the bilateral procedure and wow, it’s a doozy. He feels like he can’t lift his neck off the pillow and gets extreme pain, dizziness, shaky when he does. One downside here is that they do not share the same belief in “getting ahead of pain” and see pharma as a bad thing. It’s been hard to watch him struggle with this pain. I have been able to sit him up for moments, but then the pain overtakes him again and he needs to lay down. He’s swallowing water but isn’t ready to try eating yet. He said it feels like the water isn’t going down right and I suspect that is lingering swelling from being intubated. It is only 15 hours post surgery so there is an element of patience at play.
This hospital is like a hotel. He has a smart TV, I have a chair that pulls into a bed. There is a desk, a private closet and a bathroom with a full shower/vanity (including a hair dryer, so weird). Despite the hiccups so far, at least it is a peaceful room and not some open ward with lots of beeping and bright lights. The only lights we had last night were from a lightning storm streaking across the sky in front of our room. If it hadn’t such a sorry state of affairs it would have been pretty cool to watch.
So right now it’s a mix bag of good and bad. I’ll circle back after the doctor comes and give another daily update.
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Thanks for the update! There is going to be the difficult period in the beginning post surgery, especially with bilateral. But then things will improve bit by bit. Home stretch now!
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Happy to hear all went well, I logged in just to check about JC. Sent him my regards please, and tell him not to worry about his neck. I got the same feeling couple of days, I promise it will be all good very soon. And also send him this.
“Even though the situation might still seem dark, you at least see the light at the end of tunnel now, but it’s a long way to reaching end and the road is bumpy. So hang in there my fellow warrior, we will be there at the end of it. No doubt! Stronger than ever!”
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I’m glad JC is safely through surgery, but so sorry he’s in alot of pain and struggling to sit up…I hope that this improves soon. Some doctors have different names for VES, Vascular Outflow Obstruction, Stylogenic Jugular Venous Compression Syndrome…
So praying that your husband starts improving soon, and for strength for you
@gramos love your words of wisdom…
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@Val7426 - Thank you for the update. How awful that pain meds & anti-inflammatories aren’t given after such a major surgery. At least please ask for ice packs for JC’s neck. I hope they have ice at the hospital. He can also suck on ice chips to help soothe his throat.
I can’t imagine enduring the early post op period, especially, after bilateral surgery, w/o pain medication. YIKES!! If he’s able to sleep with the head of the bed elevated (30º is recommended) that will help reduce his throat & neck swelling.
I’m glad the hospital room is quiet & comfortable. I hope that helps with the early recovery, too. How long will he be in the hospital?
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