I have been living with ES now for the past 11 years and it has been a bit of a rollercoaster to say the least. I am now thinking is it really worth getting a 3rd opinion from a ENT? I suffer from migraines type headaches, temperature going up and down, being in pain is not really living my life to the full but I am scared of the thought of surgery on my neck as I am 41 :(. I just feel so down because I can’t see a light at the end of this tunnel :’(
Hi! I’m 43 and am 6 weeks post op and am WAY better off after having the surgery. Do you have someone who has said you are a candidate for surgery? Glad you came on here
I had my ES surgeries when I was 58 & healed beautifully & got my life back. Your migraines could be a symptom of vascular compression being caused by your styloids or calcified stylohyoid ligaments. It would be worthwhile getting a new CT scan to see how things have changed since you were diagnosed.
Surgery is never fun, but it has helped many people who have ES (i.e."the light at the end of the tunnel’). The key, of course, is finding an experienced surgeon. Are you aware of anyone in your area who does surgery for ES?
There’s lots of info about ES in the Newbies Guide section about surgery if you want to find out more.
There are UK doctors with experience of ES, but not that many, so you may have to travel. Personally, I would look for Skull base surgeons/ Otolaryngologists in your area rather than an ENT as they are used to operating on the area that the styloid processes are in. If you look at the 2017 list which is in the Doctors Info section you’ll see a few doctors names.
I had 2 surgeries a few years ago in my forties with Mr Axon at Addenbrooks- it’s made a massive difference to my life! If you can find a good surgeon then it’s worth going for the op! The pain may go away for a bit, or you could try steroid/ painkilling injections- info in the Newbies Guide section- but the only cure for ES is to have surgery.
Hi SewMomma, sorry for the late reply as I have not been feeling very well at all. At the moment I am recovering from wrist surgery. I have now had wrist surgery on both left and right wrists due to falling over badly a few times and tore the tfc in both wrists. I have been seeing a private consultant for that at a private hospital coz the NHS made so many mistakes diagnosing me. I spoke to him a week ago to ask if he knew anyone who could help me with my neck problem. As soon I mentioned he knew straight away what I was talking about and said, “ouch”. He does know a few consultants who could help but they are all private :(. Which is just my luck :(. He also suggested seeing my doctor to get a referral as it is a specialist subject. I know he wants to help me but the door is locked at the moment :(. I have to wait 4 weeks just to see a gp. By that time I will have seen my hand consultant again as I may need physio for my right hand. This is just so frustrating as I live in East Grinstead and the right people who can help are 2-3 hours travel away and I need to get referred.
Mr Axon at Addenbrooks is pretty much the mist experienced ES surgeon in the UK, other members haven’t had any problems getting referred to him through the NHS, but it is a long wait for surgery. Appreciate what you’re saying about a GP wait too, it’s going to be a long job for you…big hug & hope your wrist heals soon.
Hang in there. It’s such a shame these things take so long. Meanwhile we live it every second of every day!
Thank you Jules. Looks like I might be doing the 3 hour journey then if Mr Axon is the most experienced ES surgeon in the UK. Do you know how long the surgery takes to be done? I know that I will be in hospital overnight.
Thank you for your kind words. How do you cope with the headaches/migraines? I have heard of someone who mentioned using CBD balm on their neck to relieve pain but not tried that yet.
Hi! I was spared the headache component, that was not one of my symptoms. I did have extreme noise sensitivity on the right before surgery though which was rough with four kids under our roof.
The surgery took about 2 hours, but stayed overnight because of the drip Mr Axon puts in. It’s a pain if you’re down to have the op in the morning, I had to be at hospital for about 7am… luckily we’re not as far as you! I’ve just updated the Doctors list, Mr Axon is very experienced but if travelling is going to be a problem check if there’s any new docs on the list any easier to get to.
You have a lot going on in your body. I’m so sorry about your wrists. I can imagine having wrist surgery is quite difficult because of the loss of use of each hand.
It’s great to read you have a doctor who is familiar w/ ES. Too bad he doesn’t also do the surgery to remedy it! I hope you’re able to get an appointment w/ a good ES surgeon soon. Traveling is a nuisance, but it is important to see a well qualified surgeon for this sort of thing.
We’re here for you every step of the way.
Thank you Isaiah, as of this morning I made an emergency appointment at the doctor’s and he is now referring me to see Mr Axon at Addensbrook Hospital in Cambridge. Not sure how long the waiting list is but I am feeling a bit better now.
That’s fantastic news!! I hope Mr. Axon can see you relatively soon. I know the wait can be long. I’ll pray for an appointment to open for you relatively soon.