Hi everyone. I’ve an appointment with a consultant on Wednesday this week and I’ve got a list of all my symptoms & mri spinal reports. He’s already had head ct that shows my very long styloids and how calcified they are that spinal sent him with the referral. I’ve only had to wait 5 weeks so that’s good.
Can I ask you what I should be asking him? Or do I let him ask me
My list of symptoms. Sorry it’s so long TIA
Pain, pressure & throbbing to side of neck and facial pins needles
Pain, pressure & throbbing base of skull
Pressure & pulsing tinnitus in ears and ringing
Burning tongue, roof of mouth and behind top teeth ( throbbing behind teeth too)
Feel like being strangled
Pins & needles in mainly right side of face top to bottom and the side but sometimes in left too
Throbbing pressure pain forehead and nose
Nose cold & smell super sensitive
Blurred vision, floaters bright lights mainly right eye. Eyes sensitive to light
Palpitations ( heartbeat comes up throat) and in left side of back rib area
Pins and needles right shoulder, arm and hand
Pain mid back, sternum & chest
Fatigue in legs and chest ( no strength to cough even)
Hands weak and uncoordinated
Jaw drop weakness and aches just below ears.
Thick saliva
Swallowing difficulty. something stuck in throat feeling & food does lodge there for many hours even yoghurt.
Breathing difficulties like breath doesn’t go passed throat.
It’s a long list, I feel for you being in that much pain & having so many symptoms…It’s up to you, but one of our members a while back had struggled to find doctors to help her, she found that focusing on the more well known ES symptoms made them take her more seriously & not think of her as a hypochondriac- which sadly many members find doctors think they are with the more weirder symptoms!
So I’d suggest sticking to the nerve pain symptoms like the pain in the face, neck, ears, tongue etc. And the swallowing difficulty. The feeling drunk, brain fog & balance issues are symptoms of intra-cranial symptoms which can be caused with IJV compression, so I think it’s fair to mention them.
Maybe don’t mention the leg weakness & pain, feeling nauseous, bloating, back & sternum pain…Just my personal opinion though, you could see how helpful & receptive he is- hopefully others who’ve seen Mr Hughes can help you with that.
We also have a list of questions we suggest that members ask doctors to judge how experienced the doctor is with ES surgery- we know Mr Hughes is experienced so you may not need to ask him these, but here they are in case you want to have a read:
How many ES surgeries have they done and what was the success rate?
Whether they’re going to operate externally, or intraoral- through the mouth. Whilst some members have had successful surgeries with intraoral, external is better for seeing all the structures, to be able to remove more of the styloids, & also there’s less chance of infection.
You need to ask how much of the styloid he’ll remove- as much as possible is best- & anything left needs to be smoothed off. The piece needs to be removed too- some doctors have snapped it off & left it in! If the styloid is only shortened a bit it can still cause symptoms.
If your stylohyoid ligaments are calcified, then any calcified section needs to be removed too.
There’s usually swelling after surgery; you could ask if a drain’s put in to reduce swelling, or if steroids are prescribed. It’s not essential, but can help with recovery a bit.
Will it be a day case surgery or will you need to stay in?
Obviously ask the risks- we know from experience on here that temporary damage to the facial nerve is quite common, and also the hypoglossal nerve and the accessory nerve. These usually recovery very quickly but in some cases members have needed physiotherapy. There is also the risk of catching a blood vessel or having a stroke, but these are very rare.
Ask if the surgeon monitors the nerves- this should be done to see if there’s stress on the nerves to avoid damage as mentioned above.
What painkillers will be prescribed afterwards.
Ask about recovery- most doctors either down play it or are genuinely unaware of how long the recovery can take!
