Just out from seeing Mr Currie No surgery definitely not he said it’s too near the carotid artery and as I’m only getting pain on one side he can’t see it making a difference so bitterly disappointed he was very kind and explained the risk is too great and I will just have to learn to live with it x
He refused surgery it’s too close to the carotid artery too high a risk for stroke or heart attack the irony is they could grow and pinch on the carotid artery causing a stroke or heart attack ,IV just to grin n bear it so time to pull up my big girl socks and get on with it there’s poeple worse off than me I count my blessings every day and thankful for this group plus I now have a diagnosis so it’s not all in my head I can now try and get on disability,doubt IL work again 
@Ams, I am very sorry that the appointment did not go as expected. How upset you must be. It sounds as if that doctor isn’t very experienced with surgeries at the skull base, so maybe it isn’t the best idea to have him remove it anyway. Is there another surgeon on the doctor’s list you can travel to with more experience in ES? I just had my left styloid removed…it was pressing directly on the internal carotid artery and jugular vein and also causing primarily one-sided pain. Vascular involvement is a reason to remove it…not a reason to avoid the surgery altogether!
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I totally agree with redbird, having my jugular veins compressed was what made the decision to have surgery for me…is there any chance you could see Mr Axon in Addenbrooks? I know it’s England, does the Scottish NHS pay England NHS ever? He is very experienced, & I think that he works with a vascular surgeon too? He does private work but I guess that would be out the question? Big hugs to you…
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Hi Ams,
I’m jumping in the ring & encouraging you not to stop fighting for the surgery you need. You can get your life back. As redbird773 said, perhaps Mr. Currie just isn’t very experienced in that area of the neck. An experienced surgeon wouldn’t fear removing an elongated styloid that is near infringing on an artery. As a matter of fact, (s)he would recognize the urgency of doing the surgery. I second Jules suggestion: If it’s humanly possible, try to get to England to see Mr. Axon. He would not fear doing your surgery.
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I truly wish our skull base doctors in the US could train doctors in the UK.
My glosspharyngeal nerve was sitting on the carotid artery and my surgeon moved moved the nerve and removed the styloid. Are there any cancer centers where head and neck doctors remove tumors from around the skull, or head and neck teaching centers. In the US, many of our good surgeons are department heads at our teaching centers. You might have to look online and make calls about skull base head and neck surgeons.
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I do agree, have often thought Mr Axon should train other surgeons in the UK. There must be some good skull base surgeons in Edinburgh or Glasgow surely?
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Just done a quick google search for skull base surgeons in Scotland, a few names popped up, otherwise try Otolaryngologist, head & neck cancer surgeons, it might help you…
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The surgeon I seen in monklands was a cancer head and neck surgeon Mr carton ,mr Currie is on the list of surgeons he was my last hope I’m going to get all my images and IL post them on here and see what you all think I will also be emailing them to Mr axon myself just to get his opinion I’m scunnered 
Ams,
I don’t blame you. It’s very frustrating to have a diagnosis but then find no one will do what needs to be done to take care of the problem. My heart truly goes out to you. You need to be able to work, enjoy your life, your family & especially your grandchildren!
Good for you being pro-active. I’ll be praying that Mr. Axon will give you the hope you deserve because ES is “curable” or at the very least symptoms can be reduced to a tolerable level.
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Hope he can, there’s no chance you can go private is there? He works through Spire. I know you can pay for initial consultation with a doctor- about £200-£300- then have the rest of the treatment on the NHS? But I don’t know if you can be referred for NHS treatment in England from Scotland? Thinking of you, a big hug…
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Thank each of you for being willing to share. Feeling pain, many times, makes people retreat inside… My heartfelt sympathy for the refusal by some doctors to address ES or deny you have a real medical condition. I have tears in my eyes because these are the symptoms I have lived with since the 80s after a fall. I have been diagnosed with depression, hypermanic disorder, tension headaches, migraine headaches, TMJ, calcification in right eye, allergies, sinus, chronic ear infections, otosclerosis of the stapes, low frequency hearing loss, and several other strange offset conditions. Is the 3D pano or xray best to show calcification? That is what I think I have because they haven’t agreed on the styloid length, but something is impinging on my cartoid artery and glossopharyngeal nerve. Any ideas or any questions are welcomed. What ever these symptoms turn out to be I want answers so I can get some help
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Hi DeeG,
We’re so glad you found this forum. Hopefully, you’ll finally get the answers you’re seeking so you can get the care you need to put your many years of symptoms behind you. I’m sorry for all you’ve been through & all the diagnoses you’ve received w/o resolution to your symptoms by any means.
The best type of scan to get is a CT scan w/o contrast. Some of the more experienced ES surgeons prefer no contrast in order to diagnose ES. Contrast does show vascular impingement, but it also makes it a bit more difficult to see the styloids & stylohyoid ligaments because the soft tissues in the area are highlighted. Getting a CT scan of the area between your skull base & your hyoid bone will enable your doctor to see the styloids & the stylohyoid ligaments if they are calcified at all. The radiologist who reads the scan should be able to measure your styloids & comment on whether the s-h ligaments are calcified. Once you have that done, I recommend you send a digital copy of your CT scan & the written report to one of the more experienced ES surgeons on this forum to get an opinion. They do charge for phone consults (health insurance often helps pay for at least part of this type of consult). Getting the opinion of a seasoned ES doctor would be invaluable to you. Knowing for sure one way or the other will certainly help you going forward. Four doctors w/ a lot of ES diagnostic & surgical experience are Dr. Samji, San Jose, CA; Dr. Cognetti & Dr. Newman, Philadelphia, PA (they don’t work together); and Dr. Milligan, Phoenix, AZ. Any head & neck surgeon or ENT w/ skull-based surgical experience should be able to do surgery in the area where the styloids/s-h ligaments are.
Here is the link to our US ES Doctors’ List for your reference: US Doctors Familiar With ES, 2019
The only true “cure” for ES is surgery. External surgery (through the neck) allows the best access to the styloid process so it can be removed to the skull base & the stylohyoid ligament so it can be removed from the hyoid bone to the tip of the styloid process.
There are links to a number of ES research papers in the Newbies’ Guide. If you’d like to do some of your own research.
I hope this information is helpful for you. Please let us know what you learn & ask questions, feel free to vent & let us know how we can support you as you search for a proper diagnosis.
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I wish I could go private but it is too expensive for me x
Thanks IL keep plodding along until I get answers x
Good job! I’ll be praying the the finances work out for you to see Mr. Axon if no one in Scotland will help you.
