firstly thanks for allowing me to ask my question to those who are living with ES, What a great resource.
my mum has had chronic pain for over 40 years. With multiple complicated health issues it has been a hard life. The latest issue is ES. Mum has had may new symptoms in the last few years and the DR’s have been looking for a range of reasons including cancer.
On her recent CT the report questioned ES after her styloid process measured 4.3cm bilaterally. When I googled this new syndrome I cried as the list of symptoms were describing my mum. Trouble swallowing, catching in the throat, pain in the head and neck, nerve pain, passing out, rapid weight loss, headaches, ringing in the ears, confusion, trouble focusing, loss of balance, feeling like she was having a stroke etc… The troubles have been because she has so many other complicated health issues it was hard to find what symptom was a cause from what health issue and the fact the DR’s have not known a lot about ES. we are now in the process of finding the right ENT to help. We have been given a few names to follow up and after calling their receptionists they are not sure if they treat ES and will get back to me. Mum does find travelling difficult but if we do not find someone in Canberra I wonder if it would be worth going to Dr Michael Elliott in Sydney? Any advise or experiences that could help make this decision would be welcome. thanks in advance
Glad that your Mum at last has some idea of what might be causing her symptoms!
Otolaryngologists/ skull base surgeons can also operate to remove the styloid processes, usually externally meaning that they can remove more of the styloid process. It might be worth having a look to see if you can find any of those doctors nearer.
Retrorock had surgery not that long ago, & I think he was very impressed with Dr Elliot. You can message him to see about his experience if you don’t get any response to your questions here!
Best wishes, & hugs to your Mum!
Thanks so much for your reply
It does seem that ES specialists are few & far between in Australia. Since I’m in the US, I can’t speak from experience w/ an Australian doctor, but I do believe it would be to your benefit to try to see someone like Dr. Elliott from the start so you don’t waste a lot of time following rabbit trails. It sure sounds like your mom has suffered for plenty long enough!! Just my thoughts.
Hi Mand, I’m really sorry to hear your mum has been suffering for so long and happy that you found this support group!
I’m also from Australia and have been actively looking for an ENT specialist who understands ES and can perform surgery.
I must say I have consulted with many specialists over the last few months and have found it very difficult to find someone with ES experience.
Positively, I did travel to see Prof Elliot as well as another ENT specialist Dr Broadhurst whose details I obtained from this group postings. I found them to be both excellent surgeons and had a very compassionate manner. Both have proposed surgery for me via the internal route. I did not ultimately elect to undergo the surgery proposed by Dr Broadhurst as my understanding is that it involved removing the ligament only not shortening the styloid process. Given that my issue is that I have an elongated styloid process with no calcification of the ligament I was unsure it would help alleviate my symptoms.
Prof Elliot proposed reducing the length of the styloid process as much as possible (back to the skull of the base) and removing the tonsil. He would leave the ligament in place. Having now had a diagnosis of probable ES and identified an excellent ENT who is willing to perform surgery, I will take a few months to assess my position before making a decision to undergo surgery. I will keep you posted of my progress.
All in all, I highly recommend that you and you mother go the extra distance to consult with Prof Elliot, appreciating that travel is not easy for your mother. I feel you will save a lot of time and money trying to find a surgeon who can offer meaningful help to assess and manage this condition. I wish your mother and you all the very best and you will be in my thoughts. Please feel free to contact me if you have any questions or would like some support, it can be quite an emotional journey.
Glad that you’ve found someone you feel confident with in Australia, Vkossa, & let us know what you decide!
thanks so much for your thoughts today. it really is a big help to hear the progress and stories of others. I wish you all the best and hope that surgery makes the difference for you.
I will show mum all the posts so she has as much information as possible
I look forward to hearing how you go