My surgeon sounded apologetic in his text message but the said he couldn’t do anything more for me. 
Hmmm. How do you feel about that response? Is he saying this has happened outside the scope of the multiple surgeries that you had done by him, or is this a result of the surgery and he doesn’t know how to fix it?
If the latter, I hope he is willing to work with you further come up with some solutions. If this is an unfortunate coincidence, and unrelated to your surgery, I suppose empathetic response from him is all you can expect.
When I spoke with him last week, he acknowledged that he knows this website exists. A lot of his referrals are coming from having a good outcome posted on here. I don’t know how you would feel about this, but I would lean into the fact if he’s getting referrals directly from you. Your opinion and experience means a lot to people and maybe that would have some weight in getting him interested in taking it further.
I could very well be speaking out of turn here, and if so, feel free to shut me down. I only say this because I have advocated for loved ones healthcare journeys over the years, and I don’t like to see people left behind by their healthcare providers.
Take care of yourself, and talk soon.
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This is a good point, @Val7426. It would be a kindness & professional courtesy for Dr. Aghayev to help @Bowser figure out next steps for diagnosis & treatment as Bowser has given him such good reviews here. However, if he doesn’t have what he feels are the proper resources to do so, then his hands are tied.
Another good comment. We deeply appreciate the providers who don’t dismiss the patients who have poor surgical outcomes or difficult to diagnose problems, but who work with those patients to help them find the medical care they need. Seeing a doctor who is dismissive or too busy to help with follow-through is very disheartening.
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Hi @Bowser what is your opinion about Dr Aghayev? I had a styloidectomy in the UK and it helped, now I can consider a comprehensive decompression with Dr Aghayev.
What were your main symptoms before IJV surgery? And did the surgery help for any of your symptoms? How are you feeling now? Hope you are feeling better.
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Despite my current severe symptoms, my IJV compression symptoms are completely gone. For this purpose I highly recommend Dr. Aghayev
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I am sorry to hear that you are still having severe symptoms. May I ask what symptoms improved for you? And do you know the reason of your current symptoms? I have CCI, and I am a bit worried that it can get worse.
There have been some discussions about CCI and testing treatment available in the UK you could have a search for. Do you know what’s causing your compression, is it the C1 processes? Mr Timothy in Leeds has done some C1 shaves for some members:
Mr. Jake Timothy, neurosurgeon, Leeds, Mr Jake Timothy, Neurosurgeon in Leeds | Nuffield Health
There’s also another doctor on the list who is a CCI specialist apparently if that’s any help:
Mr. Parag Sayal, CCI Specialist in London, ph # 020 3448 3568, National Hospital for Neurology and Neurosurgery, GMC/GDC number: 6063410, uclh.neurosurgery.admin@nhs.net
Although I guess from what others have said, the surgery in Turkey seems to be cheaper, even with the travel included!
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Thanks for your rely @Jules. I saw everyone in the UK that is related to IJV compression, and finally had a styloidectomy with Mr. Hughes in July (didn’t know about Dr Kamran since then unfortunately). Dr Timothy doesn’t accept EDS patients now, Dr Axon was not willing to do surgery (Timothy wasn’t keen to operate me as well). I don’t think UK is a good place to investigate CCI either. Haven’t heard about Mr Sayal, will check, thanks. I talked to Dr. Gilete in Barcelona remotely and he told me I have CCI most likely, but I need to go Barcelona for further investigation. I didn’t do that after I found out my severe outflow issues, which are relatively easier to sort out.
My left IJV is completely compressed between C1 and styloid (zero flow, Dr Kamran said that it might be unlikely for it to regenerate). My right is severely compressed between transverse process of C1, styloid and a strangling small artery (styloid is now partly removed, but needs more down to skull-base). There are many colleterals around C1 where I have constant burning like feeling. My styloids are almost touching my C1, almost no space between them.
The styloidectomy helped notably thankfully but I was very very bad, now I am only very bad 
I still have head pressure, pulsating, brain fog, depersonalisation, orthotastic intolerance. I see styloidectomy as an indicator, so, I need more. I am Turkish, and talked to Dr Kamran online. I had also talked to Dr. Constantino online. Based on my limited evaluation, among many doctors I had talked to, I can say that I found these two doctors quite impressive ‘with their knowledge’. They both offered me surgery based on my CTV (after completing their testing), Kamran is easier to reach for me now as my family lives close to Istanbul.
My worries are: Can my CCI get worse if my C1 is shaved? And I haven’t heard success stories from Dr Kamran yet. It could be more easier to go for the surgery if I knew some. Should I do both sides at once or one by one?
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While the consensus on this forum is that doing each side separately is easier, it is my greatest regret that I didn’t get both sides done at once, as there was an extreme flare up of symptoms on the other side after the first surgery.
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Hi Bowser, I’m sorry to hear you are still experiencing so much trouble. Are the stomach related symptoms the most troubling for you?
Have you had a gastroscopy to check for continued growth of the H Pylori bacteria. It is common for this to continue living in the stomach even after antibiotics and follow ups have been completed, causing havoc of undetected.
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Merhaba! So my husband and I are in Istanbul right now. My husband had surgery with Dr. Kamran 8 days ago. Double styloidectomy and decompression. You can read his full story if you search for VES surgery in Türkiye. Going both sides at once is hardcore but in JC’s opinion even though the first 5 days were awful he wouldn’t have it any other way.
Dr. Kamran is obviously a very intelligent man. He is more interested in the decompression/neuro aspect than those who have classic eagles.
Geçmiş olsun
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Thanks for your reply. I have been following your story closely. Hope your husband can get some relief soon 
This is very difficult. I am also in touch with Cem, who had the same surgery on the same week with you. I talked to many doctors. Dr Kamran seems to be a quite good one based on my interactions. Happy to see that you confirm it.
I have a slight inclination for a single side as I have CCI and hEDS. So, I am a bit worried my CCI can get worse after two sided decompression at once. I am flying tomorrow to Turkey also for Christmas Break in the UK. Will see Dr Kamran on Friday and most likely have the surgery next or the following week.
Size de geçmiş olsun. Çok teşekkürler.
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I’m so sorry that you’ve been unable to get treatment in the UK, I’ll make a note in the Doctors list that Mr Timothy doesn’t treat EDS patients, thanks for that info. Beyond frustrating that you have to travel abroad for help!
It’s so hard to compare surgeries and results because so many members now have really complicated situations, and the one surgery might not always be enough- like you, with EDS & CCI…compressions can be down to the styloids & C1 processes, obviously, but some members have had compression from muscles, other blood vessels and nerves too… At the moment there’s no clear idea about whether the C1 shave (& styloidectomy too) does make instability worse, some members have been fine, others think it’s worse, so that’s a difficult decision to make.
It’s good you’ve noticed a slight improvement with your surgery, that’s hopeful that you might see more with getting the styloid cut right back.
Would you let us know how you get on with Dr Kamran on Friday?
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I would just like to update that my gut has almost completely healed from H. Pylori infection and I am back to eating normally after four months. It was a distressing experience but ultimately a much simpler problem than what I imagined it to be. My anxiety has also gone down significantly and I am sleeping well.
I DID have gastroparesis prior to the Eagle syndrome surgeries due to vagus nerve compression, but I now see that what I experienced after the surgery was gastritis and not gastroparesis.
Unfortunately I still have a few lingering issues such as severe fatigue, photophobia, neck pain and flu like body aches. There is a strong possibility that these will get better on their own as I eat more and regain the weight I lost. If not, I mean to pursue a stellate ganglion block in a few months. It is a very interesting procedure that I recommend everyone look into if having persistent issues post surgery.
There is certainly no longer sufficient evidence that I have TN or symptomatically meaningful vagus nerve compression in the brain. But I appreciate and thank everyone on here who went down this rabbit hole with me.
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Thank you so much for your update, @Bowser! I’m super happy to know your stomach issues have been put to rest. Your surgery recovery has been a bit rougher than usual. There could be significant healing of symptoms you have left, as you noted, both as you regain weight, & I’ll add, with the passing of more time. I had a couple of symptoms that didn’t fully go away which continue to decrease even now, 10 years post op, but most were tolerable or gone by about a year after surgery.
Hang in there & look for symptoms that “go missing” as the months pass. It’s very satisfying the day one notices a symptom that’s been hanging on has disappeared.
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I’m so so so happy to hear there was a resolution and you can eat again. I’ve thought about you many times over the past few months. Keeping my fingers crossed with the nourishment and strength that you can cross the finish line on this nightmare marathon. The SG blocks have been recommended to JC too, keep us posted if you decide to peruse it, but hopefully it’s not necessary.
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I’m glad you’re able to eat better now @Bowser , hopefully getting better food into you now will help with some healing too! Keep us posted, thinking of you 
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Hi! I am interested in knowing how you beat the H.Pylori infection. Thanks!
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You need the 14-day antibiotic regimen initially to tackle the bacteria but it takes much longer to fully recover. For me it took four months.
At the beginning it is important to start with simple foods and minimize fiber and fat intake and use boiled foods (like boiled chicken) and simple carbs (like rice with low-fat yogurt) for calories. Use low-fat oils. If your symptoms are very bad you can start with very liquid foods like rice gruel. Then progress to more complex foods. Vegetables can be boiled in pressure cooker to break down the fiber content to make it easier to digest. In general prefer boiled foods to fried foods.
As far as medications go my gastroenterologist prescribed me an acid reducer called Vonoprazan and a prokinetic called Itopride which were very effective.
The inflammation of the stomach lining will go down very gradually. The important thing is to ramp up the complexity of foods very gradually. If you ramp up too fast you will relapse and get heavy burping or gastric distress episodes which will set back your progress. If you relapse too often then the total time to recover gets longer. If you relapse you can go to the ER and get a rabeprazole 20mg injection which is very effective in reducing acid immediately and prevent further damage to stomach lining.
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Thank you for the details! 
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