Thank you Jules! I don’t have one moment of regret waiting until I felt “right” about who I was going to let do the surgery. I’m noticing so many differences already in my symptoms. So thankful!!
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AWESOME story, jwise210. So glad you’re on the road to recovery!! Thank you for sharing & encouraging others who are still waiting to find the right surgeon!
Thank you Isaiah! Finding the right surgeon is so important. I came very close to making a huge mistake because I was desperate for relief. I am thankful I listened to that inner voice and followed it. I am now 5 days post op. I do have discomfort and truly that is what it is, all related to the inside of my mouth/throat where the incisions were made. They gave me tabs that melt on my tongue for nausea, I take one every morning and have not had one bit of sickness. I still have occasional ear pain but realize that is going to take time. Being able to smell coffee brewing again is unbelievable to me. I will keep ya’ll posted as the recovery progresses. Can’t wait to see if everything reverses. I can’t wait to be able to eat real food again since my taste buds have returned. It’s been a long hard road for sure as all of you also know, but so worth the surgery. If one thing I have learned from all of this, don’t give up. Even on your worst day when you think you can’t take another minute of it. Your answer will come. The right surgeon will be out there. Keep pushing for the answers.
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Jules, I also had the enlarged lymph nodes. 5 days post op they are gone. My neck is so much smaller and normal looking it’s amazing, and it’s not totally healed yet! My glands that stayed swollen all the time, all normal. I think I will be surprised when my healing is complete how many things the ES caused.
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Yes, indeed, you will be surprised, & hopefully, symptom by symptom, they will all fade away! Just be aware that patience is your best friend as complete healing can take a year or more for some issues to resolve. I’m 4 years out from surgery, & my facial numbness (from external surgery) is still lessening!
Just out from seeing surgeon and surgery is not an option not until it’s closer to the carotid artery left side is approx 6cm , right side is 4 he doesn’t think it would help he was quite arrogant and said he doesn’t know of anyone who was helped with surgery I told him to join our support group and I asked about Mr Currie he said go to pain management first and an ultrasound in 3 months if it’s still same he’ll refer me to Mr Currie that specialises in eagles syndrome feel deflated but glad in a way that I’m not getting surgery just now and the pain management clinic might help x
I meant 6cm on left side and 4 on the right
Ams,
I’m sorry you were treated in the manner you were. You should call the office back & leave a message for the doctor to contact Mr. Axon at Cambridge, so he can learn that surgery, if done correctly, ABSOLUTELY makes a difference! Your styloids are plenty long enough that surgery would help you at this time regardless of their proximity to the carotid artery. Styloids can tangle with cranial nerves that run through that area & are often the cause of many ES symptoms. Vascular symptoms from vein or artery compression are not always present with ES. It sounds like he expects you to have vascular compression in order to warrant having surgery. 
There are other people who have had surgery delayed because of being sent for pain management or having to take pain medications to see if they helped first. I hope your next 3 months are tolerable for you. These are trying times for you, indeed. I will pray that the time seems to pass quickly!
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I was in tears iv had my symptoms since 2014 a year after I had my tonsils out which according to articles iv read that can be a trigger he wouldn’t listen seemed quite angry when I questioned him he said there’s no paper ever been written that shows surgery is beneficial and he said he wouldn’t do it as it doesn’t help when I asked if he ever performed a styloidectomy he got flustered and admitted he hasn’t done one and doesn’t know of any surgeon in Scotland who has so I brought up mr Currie and he said yes we know of him and if your prepared to go private he would do it but I reminded him Mr Currie also works for NHS and he said to his other coleague oh someone has done there homework !
I was upset now I’m angry I’m going to attend my GP next week and ask her to refer me x
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So sorry, but he is arrogant because you were right. He did not like that you knew more than him. It looks like this doctor’s punishment to you because you were informed is that instead of saying no one can do this and you need to wait until you have vascular involvement is, go to pain management and if it is the same in 3 months. That is stupid because anyone can go to pain management take the drugs or not and go back and say they are no better. It is just a ruse for this guy to get the upper hand. Had you not been informed, he may have brushed you off to pain management and waiting for vascular involvement. He knows he cannot do that, so it is a win for you. If drugs help and you want to wait then fine, but you have an option. He is a liar and you pretty much proved it because he said no one does that surgery. I would just wait until I got to Mr Currie through the system to complain about the incident. Mr Currie may not be very happy to hear a lie about his surgical abilities. Not sure how things work in Scotland,but I do let doctors know if I have had a bad experience with another doctor in the field, but that has only been the case twice.I do not get a response, but they know.
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I was so unhappy with the first guy I saw that I said at the end of the appointment “Can I switch to one of your colleagues?” He said “Sure but they’re going to say the same thing.” I applied for a transfer of care which the first doctor had to sign off on - thankfully he signed off (he was probably glad to get rid of me) and the new doctor was a 180 from him. The initial doctor was wrong to say what my new doctor would say. He couldn’t have been farther from the truth. Go back to your general practice doctor and regroup. You’re on the sidelines - this is halftime. What play are you going to run next to win this game!!! 
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Great idea! And I totally agree w/ Emma & SewMomma! Get an appointment w/ your GP ASAP!! I bet she’ll give you the referral!
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Praise Yah!!! This is wonderful!!! I know how you feel…When my surgery was over, and I was healing…The first time after 6 months, I went to dinner with my husband and ordered a small, simple burger. I literally cried, tears streaming down my cheeks. I could swallow, taste the burger and it did not get stuck in my throat.
My husband thought something was wrong…It was tears of joy because I had suffered for 17 yrs. and now I could eat. I am happy for you.
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Slam Dunk! Doctors can be fired! Pursue your healing…you have to fight for everything you have. I pushed forward for my healing.
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Thank you and your right I’m coming out with both fists up he’s not getting away with it they had a chance to diagnose and treat this 3 years ago and missed it think I’ve waited long enough 
Thanks so much guys it helps to know your fighting my corner x
I had a similar experience with the first doctor I saw- he said that he would only operate if I was suicidal with the pain, & that ES couldn’t cause vascular involvement, but I was lucky that he was happy to refer me to Mr Axon … I take comfort in the fact that Mr Axon was going to write to him with the results of the CT which showed bilateral jugular vein compression! Maybe it’ll educate him…and maybe you knowing yoyr stuff might secretly shame your doctor into looking at some research!
I would go to the pain clinic as they might be able to help, & would push your GP to get a referral to Mr Currie rather than wait for the consultant to do it. I hope that you don’t have to wait for too long, and be proud of yourself for advocating for yourself, you’ve done your best!
Thank you I do get very down at times but I’m glad I’ve got this support group IL keep fighting the good fight x
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YES! This is a fight worth fighting!!
GO! FIGHT! WIN!!
Yep definitely fighting they’re not gods but why can’t they admit when they are wrong years ago I had the “Audacity” to question a junior doctor who told me my daughter needed a lumber puncture as she was fitting but I was adamant I wanted a 2nd opinion as I thought she was having a stroke he actually laughed in my face but I refused to sign they threatened me with social work as I was endangering my child I actually said bring it on but I’m entitled to a second opinion I demanded to see a paediatrician geuss who was right ,sadly my 7yr old was youngest to ever suffer a stroke she recovered with paralysis on left side if they’d done the tests she would’ve died instead of surviving going onto lead a full life I always trust my own Instinct’s I will get my surgery I’m contacting my local paper to see if they run a story to raise awareness of eagles syndrome x