I’m so pleased that you’re able to see positives, and it certainly seems hopeful that there will still be improvements with the physio he’s seeing…I’m so pleased that he has been able to get surgery, and that you’re able to look at the issues he still has in the light of 5 years of symptoms and have patience. Is JC able to do that too, is he able to keep positive?
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Now I remember reading what you said about the over-sized digastric several times previously. Sorry I asked you to repeat “old news” but thank you for doing it cheerfully & patiently as always, @Val7426. I’m sorry he’s lost that muscle. It’s too bad a part of it couldn’t have been saved, however, our bodies are masterful at compensation so hopefully w/ the PT he will regain greater range of motion in his jaw. 
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Any updates @Val7426 ? How is JC feeling?
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I’ve also been thinking about you & JC, @Val7426. Would love to hear how things are going for JC now. 
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+1, @Val7426 How’s JC doing ?
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Hi all,
I haven’t been active on this site as much lately, so it was a delight to have a few of you check in. It’s very kind.
What can I say… recovery is a long and bumpy road. I guess because this is the Eagle Syndrome site, let’s start there. JC’s surgery was December 2024, so 10 months ago. I think that long and short is that he needed to have the surgery, and it has resolved some things, while many symptoms (old and new) remain.
The good:
•The “head in a microwave” feeling is 85% gone. It still oddly flares up from time to time.
•The stranger “choking him from behind” is 95% gone. Again, oddly flares up, and it is right now
•The pain inside his ear is gone, as is the pulsatile tinnitus (his normal tinnitus remains, but is often less)
•He is able to open his mouth wider now, but not quite as wide as pre-surgery. He had a hot dog at IKEA last month and didn’t have to squish it down. The spasms in his neck have stopped.
•Frontal headaches have gone down
•No more “lightning strike” nerve pain in his face
The bad:
•First bite remains as strong as the day he had surgery. Eating is excruciating (he’s had Botox, tried pregabalin, among other things).
•TMJ on left side remains worse than before
•Still has nerve pain in the left side of his face
•Dizziness and nausea remains ←may not be ES
•Eyesight remains distorted ← may not be ES
Since last posting, he has seen a CCI chiro, physio, neuro-optometrist, postural specialist, internist, hematologist, vascular surgeon and pain management doctor.
We discovered in April that he had a condition called “polycythemia.” There is an acquired version and a cancer version, and thankfully, his version was acquired. It essentially causes such an overwhelming amount of hemoglobin in the red blood cells that your blood becomes thick. He had to have several blood draws (like medieval bloodletting), discontinue medication and cut-out certain foods, and he has now normalized, but because his hemoglobin was so ridiculously high, it drew all the iron out of his system so he’s now anemic. It’s a catch22 because he can’t take iron, or else it will cause high hemoglobin again. This will take months to naturally rebalance. He’s having his blood tested regularly, and a vascular surgeon ordered an MRA to track the blood flow. That will also be helpful to rule out additional vascular compressions (although we now think that’s unlikely).
What we’ve narrowed down to is that his neck instability (possibly from the 2024 car accident) was likely much MUCH worse than he ever thought, and there is a possibility he is on the spectrum for some form of CCI. I call it “CCI Light” because it’s obvious that his head isn’t about to roll off, but it’s affecting his day-to-day and quality of life.
He started working with a CCI chiro last week, and it’s really flared things up, but hopefully it will calm down soon. The chiro and pain doctor think that he should try PRP therapy. Lots of people go to Centeno, but it turns out there’s someone in Bellingham, WA, who trained under Centeno, and there is a pain clinic in Burnaby, BC, called White Oak and someone there can do the procedure. So he’s currently exploring the pricing and waitlist for that therapy.
I’m making it sound like it’s been all bad, my lens is a bit skewed because he’s really down in the dumps at the moment. But we did have good moments over the past few months. I felt like he was able to commit more to going for dinner with friends, we would go out a little bit, and he was walking a lot on the treadmill (5-10 hours per week). Things really started to change around mid-August and it’s been spiraling since then, and it happened shortly after seeing a posture specialist. Maybe they moved something out of place? Hard to say.
Right now he’s taking extra-strength Tylenol, Cyclobenzaprine (muscle relaxant), low dose Naltrexone, Indomethacin (anti-inflammatory) and he recently added pregabalin (Lyrica) again to see if it helps settle his nervous system because he’s having so much anxiety from his neck pain.
Unfortunately, this all started to happen ~2 weeks after I booked a non-refundable ticket to Türkiye to see my mom (she’s having a total knee replacement in 2 weeks). I feel terrible leaving him alone for 4 weeks, he’s hardly able to move from the couch to the bed, let alone go grocery shopping or make food. I leave next Thursday. Fingers crossed that the CCI chiro can make some progress and JC regains some of his mobility.
So to tie this all back to the VES and journey to see Dr. Kamran… JC needed the surgery, without a doubt. It’s unfortunate that the C1 resection also meant removing muscles, because it has destabilized JC’s neck. But that wouldn’t/shouldn’t be a concern for everyone. JC is a complicated case, and his outcome shouldn’t deter someone from seeking Dr. K’s assistance, he’s a skilled surgeon. I suspect the styloids were knocking the C1 out of place every time he chin tucked, and they needed to come out. While it may be a long road to recovery, I still think it is possible for him.
Lots of ups and downs, and I wish it were better news overall. Thanks again for checking in, and I hope you are all doing well and hoping experiencing progress in your own journeys.
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@Val7426, Thank you for the thorough reply. I’m happy for JC’s victories but sad & sorry to hear that he’s still struggling so much after so many months. I do hope the CCI chiropractor can “undo” whatever was done that has ramped up JC’s neck pain again. I can imagine he has a form of PTSD over his neck, ES, the surgery, etc., & still not being more fully recovered.
You are a saint for taking such good care of him & standing by his side all this time. Your commitment is a true testimony of how much you love him. I’ve known people whose spouses left them over lesser health challenges. So sad!!
I’m glad you’re able to go help your mother. I’m sure she will like having you there even though it will be a difficult time for her. I hope she recovers well & as quickly as possible from her knee replacement surgery.
I’ll pray that JC is able to be self-sufficient while you’re w/ your mom. Do you have friends who can check in on him & help him if he needs it while you’re away?
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What a journey, as @Isaiah_40_31 says, it’s good that he’s had you beside him to support, encourage & advocate for him! I’m so sorry though that after looking up things have worsened again, especially as you need to go away…if you have no family or friends to help him out, are you able to arrange any home help/ carers for him, or are there any voluntary organisations who would help, Red Cross etc? I wish I was nearer & could help!
thinking of you
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how is he now. I saw the same doctor & came in with a possible CCI and was dismissed. Did a Tos surgery and now 3 years later I was dying in and out of hospitals and finally I had my CCI surgery. but the doctor destroyed my life and my family.
The doctor I saw probably can do CCI surgery but hes clueless about recognizing it. He always leans towards tos and or other diagnosis. CCI is real and once you remove all scalenes and rib its game over. CCI will get so much worse
Did you see Dr. Kamran Aghayev in Turkey?
Thanks so much for what you share! I am French woman and perhaps I will need to go in Turkey too!
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@Val7426 Thanks for all you give.Could you tell if we can put during the travel medecine like prednisone,dolipran in our luggage.Are we allowed to do with police control at the aeroport?
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@adigorazde hello could you tell us which doktor you are spraking about? Same as @Val7426
Yes, same doctor as Val, @Veroguilnec. He has helped many of our members, but @adigorazde didn’t have a good experience with him. No doctor has a perfect success record with patients as every patient has a different reaction to complex surgeries. If you decide to have a consult with Dr. Aghayev, you can ask him specifically if he would do anything different for you because you’ve been diagnosed with CCI. We have other members who have CCI who have had good outcomes from the surgeries he’s done so we were very sorry to learn that @adigorazde did not.
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Another idea is a neurosurgeon in Barcelona, Spain for CCI/AAI and other EDS conditions. Here’s a clip from Dr. Vicenç Gilete’s website:
“At DrGilete.com, under the leadership of Neurosurgeon Specialist Dr. Vicenç Gilete, we combine decades of hands-on experience with cutting-edge technology to provide comprehensive care for patients with complex spinal conditions. With over 25 years in neurosurgery, I have witnessed first-hand the struggles and triumphs that come with diagnosing and treating conditions like Craniocervical Instability (CCI), Atlantoaxial Instability (AAI), Chiari Syndrome, Tethered Cord, and connective tissue disorders such as Ehlers-Danlos Syndrome (EDS). Every patient’s journey is unique, and I am committed to sharing my personal experience and expertise to offer care that is both state-of-the-art and profoundly compassionate.”
A reputable doctor here in the States has given a strong word for Dr. Gilete’s expertise. It might be worth checking into. My husband & I are learning what we can for now, since I also have CCI and AAI among the other issues we’re dealing with.
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Hi! We brought all the pain medication from Canada. Türkiye should let it through as long as there is a valid prescription for the patient. I hope that helps!!
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This is a great lead, thanks! I heard that Kjetil Larsen now lives in Valencia, Spain. I’m lucky enough to have a cousin who lives on the country so I may have access to a place to stay if we need to check out this doctor too.
It’s been a year since JC’s surgery, and perhaps I should do a bigger update. I do think a lot of his ES symptoms have resolved, some persist, but now the lion’s share of pain comes from the C1 area which is why I’m not as active these days. Happy to be a resource, but I want to save space for those with ES symptoms. JC’s starting with an orthogonal atlas chiro in January, we’ll see where that goes (fingers crossed). Thanks for the lead, much appreciated, and all the best for a happy and HEALTHY 2026.
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Oh hiiiiiiii @Isaiah_40_31. It’s been awhile and I probably owe a much larger update. I must say, I’m not surprised Dr. K dismissed CCI. He’s one of the doctors who thinks your head has to be 3/4 severed for it to be a clinical diagnosis. He looked at JC’s scans while we were there, and said nothing is wrong and blamed JC’s pain on osteophytes. Now… I hired another private neurosurgeon in Türkiye this October (2025) and they also said it’s not CCI.
I think it’s really a spectrum… CCI warranting surgery and maybe a CCI-lite, where a misalignment is wreaking havoc but it’s outside the clinical range. I feel for the person who didn’t fare well under Dr. K, I mean, JC still has some issues (nerve pain and first bite), but overall I still would recommend him as a capable ES surgeon and I can only imagine how many more of these surgeries he’s performed over the past year.
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@Val7426 I’m glad that some of JC’s ES symptoms have improved, it was always going to be a long journey & more than one surgery most likely for him wasn’t it? You’ve given us lots of helpful info over this last year, thank you! I hope that you can keep plodding on to get answers for him 
@GeorgiaKay Thanks for the info about Dr Gilete, and also Kjetil Larsen!
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