I am sorry that you have gone through a lot. Dr Donald Donavan from Baylor’s college of medicine Houston is in the list , he did 20 surgery in the past year. Let’s see if nothing is worked out . Have to see another doctor.
Which hospital have you been referred to?
There are risks with surgery; it’s a personal decision with how bad your pain is or how your life is affected versus the risk. But with a good surgeon those risks are minimised. Equally there can be risks of compression of blod vessels & nerves if you leave the styloids in! Tgere are treatments which can help with ES symptoms, like nerve pain injections and injections of steroids into the area, but these don’t cure ES, they just help the symptoms, the boneis still in there, so surgery is the only cure.
So glad you found this forum. You’ve been given lots of good advice by the people who’ve responded to you.
Surgery is the only real cure for ES & yes, it does help to relieve the symptoms. Sometimes they don’t go away completely, but they are minimized to a point where you can live with them, & they are no longer affecting your life in a bad way. The pain in your jaw, face & throat should go away after your styloid process is removed. It will take time (1-12 months) though as nerves have been irritated or damaged, & they heal slowly. Some symptoms disappear as soon as the styloid is removed which is good news (as in SewMomma’s case).
I hope you’re able to find a doctor local to you, but as gbr said, if not, traveling is also an option. Many people on this forum have traveled out of their home states to have surgery with a more experienced surgeon. It sounds like Dr. Donovan is pretty experienced. Hopefully he’ll be supportive & able to help you. If you have any uncomfortable feelings about him during your appointment, know that there are other good ES surgeons. It is important for you to feel comfortable with the doctor you choose.
Baylor’s college of medicine
Morriston Hospital, Swansea, South Wales. Uk
Hi S, I live in Aberdare. Since joining this group you are the 7th person within a 24 mile radius of me to have ES symptoms. Considering that ES is rare this seems to be a high figure.
Omg that is a high figure. Good to know the there are others like us close by. We should try and firm a local support group
HI S, I have already met up with two people who live close to me. The last time we met up we met in Merthyr. The next time we meet up we had suggested Cardiff, because that’s where one member lives. Are any of these locations any good for you? One member is still recovering from her second styloidectomy and I had my styloidectomy last July (but experienced problems following it). However, at least it has been removed from my throat. Take care.
Look for an Otorhinolaryngologist, not just an ENT. One thing I had to do was to get away from private hospital physicians because they tend to keep you in a loop with just their doctors. I suffered for 17yrs. until I went to a University based hospital. They do research and they have the most up to date diagnostic equipment.
In other words, doctors teaching doctors. I just recently, Jan. 8th went back to OU Physicians (University of Oklahoma) and saw the doctor who finally, after 17 yrs. diagnosed me with ES. I had not seen him since 2004, when a colleague of his did the surgery on me. That was the end of the symptoms and pain. He does do the surgery but, not that many. My surgeon passed a few years ago.
Dr. Kremple is the only doctor that is dealing with ES. and most of his patients are cancer patients. I begged him to continue to help ES patients because many are suffering. He said Okay.
Shalom Jules, Just a few lines for you. I did see Dr. Krempl on Jan. 8th. I had made the appt. back in Nov. and he was that booked. He is at the Stephenson Cancer Center which is still part of OU Physicians, in Oklahoma City.
Since I had not seen him since 2004, he did remember me. Dr. Runkle was the surgeon who did my removal of tonsils and styloids. I let him know how much he needs to continue helping ES patients. He does diagnose ES but, his patients are mostly cancer patients. He is hard to get an appointment with but, he said he still sees ES patients.
I told him that so many are suffering like I was and that I have him on this ES Blog. He smiled…I asked him if he had a problem with it and he said, No. He was very happy to know that I was doing okay and if I had any problems, to give him a call.
So, he is still doing ES and he is the only one in Oklahoma who does the surgery. My surgeon passed…
Thanks for that Hadassa! Glad that you are okay!
Thank you so much for your kind words
Thank you so much for the information.
I will look into this as currently my life is on hold as I don’t know from one day to the next how I will be feeling.
I am very grateful
I can’t travel much at the moment as I am unable to move my neck much.
But thank you anyway, maybe in the distant future I will join you.
Can I ask if you don’t mind what the problems were and did you have intra oral or external surgery?my entire has said he won’t take out the bones just file them down from inside my mouth.
I am concerned having it done this way after my lingual tonsillectomy 2 years ago went wrong hence still under entry.
I live in Cardiff and have recently had my second surgery (extraorally). I will private message you.
I’m originally from Pontypool. Add me to that list. I’ve been investigating dioxins and their effects. I have been diagnosed with endometriosis and fibromyalgia too. ReChem in Pontypool were responsible for disposing of chemical waste/dioxins. Makes for some interesting reading. Such a massive rabbit hole to get sucked into but it certainly begs the question as to what has caused such a large number (considering it’s rarity) of people to have ES in such a small area.
Interesting, but worrying…
Wow another person to add to the list in South Wales. From time to time a small group of us meet up (last time we met in Cardiff). Perhaps next time you could join us.
I’m down in Plymouth but I’m happy to travel up to Cardiff, once I’m feeling a bit better x