Hi All. Nice to find a group that can relate to having an illness so misdiagnosed that most of us have been accused of mental illness at some time. I had my left side operated on about 3 years ago. Had my over 6.5cm styloid shortened via surgery thru my mouth. My tonsils were not removed. About a 5 hour operation. 9 days in hospital. In retrospect had been having symptoms for a long time prior to being diagnosed. After years of being told i had a sinus infection, was making it up or needed dental work i was diagnosed with neuralgia due to reoccurring severe pain. With my work i had to fly several times a week which became a nightmare due to insane pressure in my head. By chance i was in a very remote part of China working when a taxi driver i had befriended suggested i go to a local ENT clinic. It was a Sunday and as it turned out there was a visiting Ent professor doing free community work. Within 5 minutes i was diagnosed simply by him thrusting his hand down my throat. Drove 2 hours to big hospital . Had scans and he operated on me the next morning. Resolved some symptoms but i still suffer Neuralgia. Fast forward 3 years . Right side has been getting hardcore. Usual stuff accept this time getting problems with vision and balance plus starting to have seizures and uncontrollable body movements . Just had MRI scans waiting on results.
What a fantastic story! How amazing that you were in the right place at the right time to get diagnosed & treated.
Your current symptoms are very serious & sound quite scary. Compression of the internal jugular vein is not uncommon w/ ES so it’s possible that’s what’s causing your visual & balance problems & possibly seizures. When the compression is great enough, the blood that goes to the brain can’t flow back out at the rate it needs to so pressure builds up in the cranium (i.e. intracranial hypertension). When that pressure is high over an extended period of time, symptoms such as you’re experiencing can occur. Often, removing the styloid allows the jugular vein to reopen, but sometimes a stent needs to be place in the vein to hold it open if ithe compression has gone on too long.
The other vascular problem that can occur is compression of the internal carotid artery. That prevents adequate blood from getting to the brain. There are some similar symptoms between the two. Carotid artery constriction can cause TIAs which are like mini seizures or strokes. In extremely rare cases, ES can cause a full blown stroke. I’m glad you’ve gotten an MRI to see what’s happening. I hope they looked at your neck as well as brain.
I wonder if your neuralgia has stuck around after your first surgery because the styloid wasn’t shortened enough. The difficulty w/ intraoral surgery is that it’s hard for the styloid to be cut back to the skull base or close to it via that route so the styloid(s) is/are just shortened. It is more easily done by external surgery. That said, I’m so glad your styloid was at least shortened & that the surgery gave you some reduction of symptoms. We do have members who’ve had revision surgeries to reduce the styloid(s) length(s) further when initial surgery didn’t make them short enough & symptoms remained.
Please keep us updated as to what you learn from your MRI. We do have some ES doctors listed for your country on our Doctors List for Countries Outside the US.
Wow thanks for the info. My Neuralgia is probably from putting my head thru a windscreen 25 years ago. Mainly Trigeminal neuralgia in my cheeks and mouth. The ES seems to more so cause Glossopharyngeal neuralgia which feels like someone has nailed the base of your tongue to the table. At the moment for me one tends to trigger the other. Not good on the teeth from hardcore grinding. Looking forward to my date with the bone saw. I remember last time was like a big pressure release in my head. Great to have found this group.
Sounds like your head/face have seen some serious “action” during your life. I’m sorry for the injuries you’ve suffered & the leftover pain it’s causing. It’s possible ES was the culmination of that injury but at least you’re getting it dealt with. Hopefully your future will be asymptomatic (at least from ES) & you can get back to a more active & normal life.
Do you have surgery scheduled? If so, who are you having do it?
At this point no idea. Waiting on results of scan and see what they say. The ringing has got crazy intense. Will post a follow up when i know more.
Wow Mardi. You are one brave person to have surgery in China! I suspect you may not have any kind of “Operative Report” for the surgery you had that might help a local doctor to have a better understanding of what was done in surgery.
I hope you get the answers to your current problem as they sound pretty severe. I hope you have identified a highly experienced surgeon to do surgery in the event you need it.
Ive had eagles surgery last year and TMJ (for years) and progressively working towards fixing the TMJ now. I feel like I am playing wack-a-mole with regards to the nerve pain. I am now dealing with TMJ and ongoing dental issues. A recent tooth extraction has caused a major trigeminal nerve flair and acute mouth and jaw pain. I almost to the point of telling the doc to take a gamma knife to my trigeminal nerve. Good luck… I hope you get some resolution very soon.
Its pretty sad we we actually look forward to a bone saw. It speaks to the level of extreme pain levels one endures and just wants to stop.
One GP, One radiologist, two Ent specialists and $1500 later.
GP has to google ES.
Radiologist says scans normal no further action required.
Ent specialist no. 1 disagrees says yes its ES but never seen it before (Uses google). Refers me to other ENT specialist who says can not help has no idea, suggests going back to China for op… Refers me to doctor interstate. Wife sends scan to doctor i used in China says probably compressing on internal jugular vein and calcified .recommends surgery. Where to now . Seems it will be a long and expensive journey to deal with this in Australia.
Meanwhile eating 800mg Carbonazapine a day, severe verdigo and intense ringing.
WOW! That’s terrible. There are several doctors on our list in Australia. Even though you’ll have to travel, at least you’d be able to stay in your own country. Are doctors there doing video consults if you live far away? You can send your scans & reports ahead so they have reference material.
Another option is an expensive vacation to the US or UK to see one of the doctors in those countries. Many of them will do video consults for people who live far away.
As Isaiah indicated, there are a few ES docs in the US who do video consults if you send them a CT scan on disk. Average cost is about $500. Dr. Samji in San Jose, CA (Outside San Fran) does them and once received, they usually get back to you within 7-10 days. You don’t necessarily need to come to US for surgery as it appears there is a few docs on our list over your way but you could get a pretty quick expert opinion which would help you move forward in getting this resolved. I hope you get some resolution soon.
So tough for you…we do suggest that people try Otololaryngologists/ Skull Base surgeons, or Head and Neck Cancer surgeons if there’s no experienced ES surgeons near you. They operate in the same area as the styloids & sometimes have to remove them for access, so might be worth a try?
If you & the Chinese surgeon both think that the jugular vein is compressed, are there any vascular surgeons you could be referred to?
I guess with Covid travelling abroad may well be out?
Thinking of you…
Got an appointment with Dr Mathew Broadhurst. Seems positive as he says has dealt with it before. Have to wait till end of August but says will check scans etc as soon as he gets them and bump me up the waiting list if he deems it serious. Chinese professor is on board at no cost and is sending thru medical records. Refreshing to have a doctor willing to go the extra mile. Even have a video of the surgery.
When you see him, it would be good to check if you have elongated styloids &/ or calcified ligament, & what he would remove if he does do surgery- we have a note on our list to check that, so I think he might have just done the ligaments for someone before. Good that he’ll bump you up depending on the scans!
My situation over the last 9 months has been crazy. The specialist refused to see me unless i took the experimental injection. I had sent him all the scans and he indicated it was very serious . I had booked in to see him but was refused . They then refused even a phone appointment.My GP also refused to see me unless i got jabbed. ( 3 injections) so have not been able to get any medication for my neuralgia or any form of treatment or scan. Have lost extreme amounts of weight and black out on a regular basis. In a strange way the pain is all that seems to keep me going as is so severe it keeps me on my feet. Found a local Vet surgeon introduced by a friend and he has been a massive help . He has been giving me accupuncture which is a side thing he happens to be into. He also recommended taking medical weed for the pain and monitors my blood pressure. As no human doctor will see me i have had to become an illegall drug user. It helps me eat enough food to stay on my feet. I spend most of my time meditating and rely on the power of prayer. Crazy world we live in when doctors would rather you die if you refuse a medical treatment you do not want any part of. Lost for words. Stay safe everyone.
I am so sorry for your situation, Mardi. I’m glad your friend is helping you. I hope the medical world re-opens to everyone soon so all people can once again receive needed medical care.
So sorry that you’re still really suffering…good that the acupuncture helps a little. It’s not something I know anything about, but these discussions might be helpful:
Medical Marijuana - general information - Symptoms and Treatments / Complimentary Therapies - Living with Eagle
Medical marijuana for IIH, case report - Symptoms and Treatments / Complimentary Therapies - Living with Eagle
Thinking of you & will pray for you that this madness ends soon