The pain is tolerable most days, but I have pain on my left side with ringing in that ear. Also, I’ve been very tired and my hair is thinning. How do you know when it’s time to seek out surgery?
It’s a difficult decision for all of us- it’s a balance of how much your life is being affected by the pain/ symptoms, against the risk of surgery, and also how confident you feel in your surgeon.
For me, I was able to live with the symptoms for over a year after diagnosis before I thought about surgery. Although if I’m honest, it was partly the mis-information I was given by the first doctor I saw (a doctor at the local hospital, quite ignorant about ES), and I’d read of a few cases where people weren’t helped by surgery. But when my symptoms worsened, and I started getting vascular ES symptoms, it made my mind up. Also on here I was able to find out about an experienced UK surgeon, and there were more members on here getting better results, so it made the decision easier.
With the second surgery, again I thought about leaving it, as the symptoms weren’t so bad, but as the 1st surgery went so well, and also I thought that I’d get it done while I could (there’s so few docs about doing this surgery well, I thought if he moved away, was perhaps too busy to do the surgery, or they stopped doing the op on the NHS etc., I might not get an op with him!)
Just to add though- I had trigeminal nerve pain which I think was being caused by the styloid, which was worsening, but that’s not been cured by the op, only eased a bit. So I think that the damage had already been done.
I hope this helps a little!
Not to jump in or change the subject but you mentioned that your trigeminal nerve pain was damaged beyond repair. Do they suggest anything to help with that besides meds? I’ve been told I have an artery pressing on that nerve and that’s part of my problem besides the ES. They suggest MVD or Gamma Knife. Have you heard much about that?
To add to this topic for EagleWings, I had the extraoral removal of the stylohyoid and the recovery was very easy and it helped some things and not others.
I take Amitriptyline for the nerve pain, which controls it well, for the most part. I don’t feel it’s bad enough to consider going for any of the other treatments. But thanks!
Are you a member of the Ben’s Friends facial pain group? If not, they’re really helpful with lots of advice about MVD etc.
I am wondering …what do you mean by vascular eagles?
If you click on the HOME link above and go to the NEWBIES section there is a great description of vascular ES vs standard ES. Basically ES is tagged as vascular when the styloids or calicified stylohyoid ligaments are pressing on either the carotid artery or jugular vein. The symptoms from this happening include vertigo, blood pressure drops/increases, headaches, etc. They can also tangle w/ the vagus nerve which presents other interesting side effects.
All the info is helpful here.
Do you have any other members who live in Canada?
My pain is now untolerable. I will be having two surgeries. The wait time is so long. I have been bumped from May 19 til June 8. I am tired most of the time , the pain is excruciating. I am looking forward to surgery…however I am very nervous. I can only open my mouth so far…now wide open. I am nervous of the position. They will put me in. I have Vertigo. Trigeminal nerelgia.
Thanks so much.
Sorry to hear you are in so much pain. Have you been on a strong anti-inflammatory? That and ice and not turning my head made the neuralgia go away, I think. Yes, I’ve seen other people on here from Canada. Hope everything goes well for you!
That sounds like my symptoms plus swallowing and breathing issues and left eye and neck pain. I go to a doctor tomorrow to request a new, better quality CT or something. Do you have recommendations? I don’t know if mine is calcification or not, but it probably is. I use to sing a lot and I’ve had minor head traumas.
Hi there Eagle wings,
I have other symptoms also.
Do you have ringing in your ears, ear pain. Does your eye pain lead you to put drops in every day?
Is there pain in your mouth, so sore you can not touch the roof of your mouth?
I have had pain in my head were I could not brush my hair for days.
Oh let’s not forget the pain in the neck when turning it, the clicking pain of neck and right behind the jaw.
The pain when touching the skin on my face and neck.
I may be forgetting some…
Did you say you are going for a cat scan? Did you have X-rays?
Wish you well,Emery
First, I’m so sorry you’re in such terrible pain. I’ve been there and can fully sympathize. It almost seemed to me my symptoms got worse in the weeks just before my surgery perhaps because of my anticipation of the surgery.
There are other members in Canada. Some have had surgery & some have been denied surgery. If you are scheduled for surgery then I say Hallelujah!! At least your ES has been diagnosed & recognized as needing to be taken care of in the only way it can be to help permanently eradicate the symptoms.
Generally the position you’re put in for surgery is supine i.e. on your back. If you’re scheduled for external surgery, then your head will probably be put in a constraint of some type then strapped down so you can’t move it at all while under anesthesia. I assume there is a similar set-up for intraoral surgery as any head or neck movement during surgery could be perilous. For external surgery the surgeon is able to monitor nerve activity using electrodes & thus avoid, for the most part, injury to nerves. There always seems to be some nerve injury during ES surgery, but thankfully our bodies were designed to heal themselves, & thus, over the course of several months after surgery most nerve damage heals.
My best advice to you is not to get too worried/scared of the surgery. Try to feel confidence in your surgeon’s ability to take good care of you & look forward to feeling relief from your ES. This will help you enter surgery in a good frame of mind & will help you heal more quickly. If you’re having bilateral surgery, it will take a bit longer for you to heal than if only one side is done at a time. If you have bilateral ES & only one side is being operated on in June, you need to be aware that your remaining styloid may fire up & create extra symptoms & pain as the first side heals. This seems to be an unexplainable “side effect” of ES. Perhaps some of the symptoms of the individual sides are masked when both sides are causing pain, but when one side is taken care of, the remaining styloid decides to “steal the show” until it’s removed as well.
I put your surgical date on my calendar & will pray for you especially on 6/8.
Interesting that you are/were a singer. There have been several members on this forum who are singers & had to stop singing because of their ES symptoms. As I recall, most have been able to return to singing once they were healed from their ES surgery(ies).
As far as CT scans go, a CT without contrast is good enough unless you suspect you have vascular ES in which case you’ll need a CT w/ dye to look for impingement in the carotid arteries & jugular vein. Make sure your doctor is having your neck/skull scanned to get a good look at your hyoid bone, styloid processes, & stylohyoid ligaments (these won’t show up unless they’re calcified). If you’re seeing a doctor who’s familiar w/ ES then (s)he should know what sort of CT scan to order.
Your symptoms sound non-vascular to me so dye probably isn’t necessary, but I must give the usual disclaimer…“I’m not a doctor” & can’t accurately diagnose you beyond concurring that your symptoms definitely follow the ES symptom patterns.
I hope what I’ve said is helpful & not confusing.
Forgot to mention that I’ve had a couple of head traumas as well but not mild - skull fracture w/ severe concussion & one moderate concussion - both from bicycle accidents. Not sure if there’s any relation to the development of ES from those. So many things are inconclusive regarding onset of ES.
Thanks for the note Isaiah,
Wow , have given me a little more calm. I will be having two external surgeries, left then right.
I can not decide which side is has the. Symptoms that bother me the most???
When I went for my pre op my blood pressure was high 151/105.now I am worried about that.
I think I will get out my meditation cd and try to calm my thoughts.
Tell me were you able to work prior to surgery? How long did it take you to heal enough to go back to work?
Thanks again for your kind words, Em
Emery, some of your symptoms sound like nerve pain- the trigeminal nerve has 3 branches which go to the lower jaw and teeth; the upper jaw and eyes; and the 3rd the scalp. Pain not being able to brush your hair etc. is quite common. The trigeminal nerve can be compressed with ES. Have you tried any of the medications which help nerve pain (like Gabapentin, Amitriptyline- there’s more detail in the Newbies Guide). I’ve found that has helped me.
You asked about Canadian members- 2 I can think of are Kelx and Farm Girl. Farm Girl is waiting to have surgery but has been waiting over a year as her doctor also treats cancer patients and is prioritising them- I think it might be a Dr Witterick, on Toronto, who was on the Doctors list. Kelx has had surgery, but has had other problems, so hasn’t been on for a while. Unfortunately there don’t seem to be that many docs in Canada. If you put Canada into the search box it’ll come up with a few discussions so you could find some other members that way.
As for work, it does seem to vary. Some members have been able to go to work in 2 weeks, others longer, especially if they have a more manual/ lifting job. It can take nerves 6 months to a year to heal properly, so if you’re in a lot of pain before the op, you might not get instant results, you might have to be patient!
Again, there’s lots of info about surgery in the Newbies Guide so that you can prepare yourself. June will soon come round, hope all goes well! Best wishes!
I can’t answer the work question for myself, Emery, because I haven’t worked in many years. I have taken care of my family & aging relatives for the last several decades which is work w/ the dividends of love & appreciation.
I would say that if I had a job, I would have been able to start back to work 2 weeks after surgery. That backs up what Jules said.