Thanks for the update!
I’m glad that Dr Kamran was able to reassure you (I hope!) that this will be a long term recovery, & not to panic that the vascular symptoms haven’t resolved yet…It sounds as if an awful lot was done, having bilateral surgery is hard, but with the addition of cutting the digastric muscle and the occipital artery it’s not surprising that JC has felt rough. I didn’t have any muscles cut, but my mouth was hard to open for a week to 10 days, it is normal & many members have this, so might not be related to the digastric muscle JC had cut…
Those styloids are huge, better out than in!
I hope that JC does see improvements soon and that he can get comfortable where you’re staying, praying for him 
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WOW! Huge styloids. No wonder JC had such awful symptoms! I’m really glad Dr Kamran gave a realistic recovery timeframe. Some doctors say recovery only takes a couple of weeks. 
I had terrible first bite syndrome. It’s caused by the glossopharyngeal nerve overstimulating the parotid gland (largest of the salivary glands) when one first starts to eat or drink. I had a roaring case of it, & the one thing that helped me most was drinking a lot of water/fluids so my saliva stayed pretty dilute. I know that’s likely hard for JC at the moment, but he might try drinking 8-16 oz 15-30 min before eating to see if that helps reduce the FBS pain.
We will look forward to your future updates. I am praying for full recovery for him.
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Its early days but on Trimus I recommend you try to use finger tips to gently ease the muscle tension that will be limiting jaw opening. You will soon feel the hard lumps and can do gentle massage to ease the tension. It will take time to recover jaw opening but you can start now.
By holding the lower jaw bone with your hands on each side try to gently move the jaw down to encourage muscles to stretch again.
Look online for image of main jaw muscles to help you understand which muscles you need to focus on relaxing/improving.
At a later stage using a therabite device each day to increase jaw opening will help snd seeing a jaw physio to get exercises to do will help.
Using ice to reduce swelling helps, Inused ice cubes inside plastic bag and put inside thin pillowcase againstvskin.melting small amounts of ice in mouth helps reduce internal swelling.
Take care.D
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Once you get back to Canada do visit a Vodder trained lymph therapist to help reduce swelling & scars.
Turkey lymph seems to be cosmetic only, but if you look online you can find guides on how to do MLD to reduce swelling Yourself now.
Also look for Tripudio guide for upper body lymph drainage. Its very gentle exercise & helps move fluid stuck in head & neck post surgery. We get simular problems to head & neck cancer patients, even if lymph nodes in neck are intact the incisions & swelling cause lymph fluid build up. Lymph system has no pump so relies on us moving.
Take care.d
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Thanks @PatientD! I always appreciate your insights and will take some time to explore them. I looked into Vodder at home and the closest practitioner is ~1.5 hours away. He knows someone else who does lymphatic drain, but a different style, so he might opt to try that when he gets home.
I was reading about the digastric and it is the main muscle to help open the lower jaw. Because his was 600% larger than average, his surrounding muscles are probably quite weak. He might have to train the smaller muscles to assist, which will take time. He’s doing some self-massage to help promote blood flow and prevent the muscles from seizing up (and I’ll have him look at upper body lymph). As everyone keeps reminding us, it’s early days.
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I had a grade 4 tongue tie that wasn’t diagnosed until I was in my 50’s. I had to do something called myofunctional therapy to teach my tongue how to work. During my second IJV decompression surgery, Dr. Nakaji had to resect the digastric and myo and hyo styloid muscles which initially left me with some deficits. I used the exercise I learned from the myofunctional therapist and now everything is working fine. I think a speech therapist could also help teach your husband how to strengthen those muscles.
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That’s great advice, thank you! If this continues then I do have someone in mind who might be able to help. Since having the muscle cut he’s found his tongue actually feels looser, but it is underneath the chin that’s preventing him from opening his mouth; which is why I think it’s the severed digastric. I have to admit, I only knew tongue tied as a colloquialism, not as an actual condition. I had to look it up.
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Hi @Chrickychricky, I’ve been looking at an online video about diaphragmatic breathing and heard that tongue tie can affect breathing patterns. I think I might have tongue tie. It hurts the ligament thing under my tongue when I’ve tried tongue exercises. Did you have the minor surgery for it?
Keen to hear if you think it’s helped? 6 weeks Post surgery I’m still getting a lot of pain from very little use in my left neck (surgery side) right up near my jaw, which is then setting off shoulder and vagus nerve symptoms. Look forward to hearing from you.
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@BraveKat, I’m sorry to hear you’re still having some pretty significant symptoms that aren’t starting to calm down a bit. Have you considered asking your surgeon for an Rx to a nerve pain medication to help ease the pain you still have which could help with recovery? Please forgive me if you’ve already mentioned that.
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@BraveKat If you have a tongue-tie it will affect breathing. When I had mine surgically released, my whole rib cage dropped and it changed the position of my hyoid bone. It also affects breathing because the tongue interferes with your airway during sleep since it is tied down and can’t rest in it’s normal position up against the palate. With a tongue-tie, the tongue, a muscle, can’t operate properly and you end up using other muscles to compensate. Once released you would need to do some myofunctional therapy to train the muscle how to work properly. I’m not sure if that is connected to your neck pain. I had my first surgery in July and my second in October and the nerves and muscles in my neck are still healing and doing some weird things as they heal.
Almost forgot to mention…in its proper position up against the upper palate the tongue acts as a sort of rudder giving the brain neural feedback about the heads position in space. A tied tongue generally results in a forward head posture which we know is problematic.
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Okie dokie. A final-ish update to this adventure. I’ll update in a couple months to detail more progress but this seems like a good place to really wrap up the adventure.
Recap: travelled from Vancouver (Canada) to Istanbul (Türkiye) on December 5, 2024. Stayed at an AirBnB outside the main city. Surgery with Dr. Kamran Aghyev on December 10 at BHT Clinic.
Costs
Flight= $5100 CAD (including emerg seat upgrades and flex ticket)
Airbnb=$3400 CAD in suburbs (booked for 5 weeks to visit family, recover and see Istanbul)
Surgery= $14,000 USD (bilateral styloidectomy, bilateral decompression, digastric muscle removal and general clean-up) and 5 days in hospital
Taxis= ~$15-20 CAD to Istanbul tourist centre (each way) or cheap on metro (hard on JC’s neck, we did taxi)
Food= depends on restaurant. Anywhere from $15-60 CAD for lokantası (local place) to nice restaurant, cost for 2 people
Medication= $20 for general pain killers and anti-inflammatories
Because we stayed for 5 weeks, a lot of our costs are above and beyond compared to those who fly home within 2 weeks. We wanted extra time because JC has been near bedridden for many many months and sedentary for years. We used the time to visit family and give him extra time to recover since it is a 20 hour travel day (12 hours flying).
He had a final in-person visit with Dr. Kamran today and it went well. So where he stands now:
The good
-no lump in throat
-limited feeling of strangulation (has happened twice and he thinks it is a chin-down position)
-no head pressure or whooshing
-90% reduction in tinnitus
-no more chin spams
In motion
-still cannot open mouth. It’s improving but it will still be awhile
-surgical site pain, including a deep ache where the C1 was shaved
-TMJ is still worse than pre surgery. Time will tell.
-first bite syndrome is extreme. He says a 20/10 when he first puts food into his mouth. He may explore Botox or a nerve block when we get home
Unresolved
-he’d hoped the styloid was involved with his C1/atlas neck pain. No dice. It’s as bad as before surgery. However, Dr. K disagrees with a CCI diagnosis and today he pointed out bone spurs on the C1 and channel narrowing between the atlas and C1. In other words, it could be arthritis and general degeneration (getting old!). So better than CCI, but Dr. K recommended no more golf which is a shame, because before he got sick he golfed ~100x in 2019. It was a secret goal for recovery to get back to casual golf, and maybe that’s still possible, but the goal post may have to move.
The silver lining is now that the styloids are gone, it opens the door to proper neck rehabilitation. Perhaps with the right rehab he can get a casual game in.
Another achievement: this surgery had enabled him to venture around Istanbul. He’s absolutely wrecked by the end of the day, but he’s doing it; and that wasn’t possible before. We’ve celebrated more “good days” in the past 7 days than we’ve had in the past 365.
Overall, the trip has cost ~$32,000 CAD ($22,000 USD) including touristy stuff, souvenirs and food. We saved a lot money by staying outside the tourist centre (enough to pay for taxis and food) but the overall amount is more because of our extended stay. We had a kitchen and ate several meals at home, probably a 50/50 in vs. out.
Dr. Kamran is clearly a skilled surgeon. His English is great and his staff also speaks Arabic and Russian. Staff in the hospital spoke some English, but certain things had to be translated via Google Translate. If you can bring a spouse/friend it would help, because hospital staff take care of meds but it’s kind of implied that family helps get you out of bed, helps with food, stuff like that (which JC found helpful the first 48 hours). My other observation is they don’t really believe in pain medication (opiate level) and so if you have a GP who’s on board for a 3-5 day rx it would be helpful. If you live in Canada, buying Tylenol 1’s (small amount of codeine) from the pharmacy as an over the counter will help with tapering (T1’s are not available in the US without a rx).
It’s daunting travelling to another country for medical. In his case it was the only option and because of that, he has ZERO regrets coming here for his surgery.
So there you have it folks. A success story. Some ups and downs along the way but an overall success for VES surgery. It’s still going to be many months for the remaining things to resolve, and lots of rehab in his future. We fly home on Thursday and he’ll start physio shortly after. Progress will be slow so I won’t be updating this thread until there’s something more to say or if anyone has questions/comments. I’ll still be on the site and feel free to DM me with questions.
Thanks everyone for sharing your recommendations, wisdom, and time. Many of you reached out privately, we swapped travel stories, fears, accomplishments, thoughts on baklava and even had conversations about shoes. JC wouldn’t have taken the leap without the support of this group so from the bottom of both of our hearts, THANK YOU.
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I’m so pleased that there are some pretty big successes from the surgery! It’s good that you’re realistic about timeframes, & the improvements which could be expected with JC having been ill for so long… I’ll keep praying for continued improvements, it would be lovely if he could play golf again! Thank you so much for the update and all the helpful info! Hugs and prayers for you
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Really interesting info about the tongue-tie, I had no idea it could have that much of an impact!
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I second what @Jules said about tongue ties. WOW! I really had no idea they caused so much trouble!
Thank you for an amazing recap of your time in Türkiye, the cost, the surgery, housing & your “adventures” while there. I’m so glad to know JC is doing enough better that you were able to enjoy a bit of sightseeing in Istanbul & visiting w/ your family. I hope the PT makes a huge difference & I bet he’ll have golf in his future if he takes the time his body needs to recover from the surgery before jumping back into it.
I’ll also be praying for his full recovery from the surgery & for a significantly fuller life going forward.
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Thanks for your kind message. I have considered going back on Pregabalin but had some nasty withdrawals symptoms (even though I went slow and was on a tiny 75mg twice day dose). So not super keen to go there. I’ve also had a Tramadol induced panic attack (a major one) about two weeks ago - I took one randomly as the pain in my neck was really bad two days before Christmas.
I’m having some good days though and actually the day after I wrote the post about continued pain at the incision site, I finally managed to tilt my chin/jaw towards my incision as the pain has reduced a bit - still limited but an improvement. So things are very slowly healing for me 
Keen to look more into the tongue tie treatment once I can bear the idea of opening my mouth wide for a sustained period, maybe in a few months from now.
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@Bravecat - I’m really happy to read that you’ve begun noticing some improvements from surgery. These can sneak up on you unexpectedly. I remember having pain that seemed endless post op but it gradually disappeared & one day it would occur to me that I hadn’t felt a particular pain in a while. Remember it’s by baby steps that we heal from ES surgery & the more complicated the situation going into the surgery, the longer recovery may take.
I don’t blame you for wanting to stay away from Rx meds unless absolutely necessary. I agree the side effects can be AWFUL!!
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BraveKat, have you tried pregabalin (Lyrica)? I couldn’t tolerate gabapentin but had no issues with Lyrica.
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I also had a tongue tie, grade 2/3, found at age 33. Talk with a Myofunctional Therapist, the therapy ensures the release is successful. I did 6 months before and 6 after. Had to learn how to use my tongue, strengthen, and stretch it. Minimal risk and lots of potential benefits.
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@BraveKat , I’m glad something is moving in the right direction for you, praying that things keep improving
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