Henrik
To explain it rougly, i have been examined by a private ENT specialist who also did the CT scan. He did infact find out very quickly (that I have ES) by just touching the sides and the muscles, nerves etc behind the jawline and also behind my ear. So it was easy for him to just get a confirm from the CT scan. The styloids is very visable, and its elongated and calcified on both sides.
He gave me the diagnose talk over telephone the next day, and sent a refferal to the hospital here in Norway that deals with these surgeries. So my ENT specialist does not perform surgery himself.
We have mainly two hospitals that deals with Eagle Syndrom, the one is in Oslo the other one is in Trondheim. The refferal was sent to Oslo.
The specialists in the hospitals have about 10 days to investigate and look at the refferal. So i think its about within 5 days im going to be schedueld for surgery, im not exactly sure about anything right now, i just know at this point that my ENT specialist have sent refferal to the hospital about reccomended surgery.
But im pretty sure that it will be a surgery, and thats my wish infact ! Because the styloids is crazy elongated and calcified and the symptoms gets worser every week.
Also here in Norway we all have our own personal doctor. It’s a pitty sometimes and sometimes it’s great, but for the most part it sucks ! Because everything has to go through his desk, even the slightest decision regarding health care has to go trough his desk, so its a fearly slow system !
For example now after I have been examined by a ENT specialist, all the follow up work is going through my doctor. If I need more help from this ENT specialist, my doctor has to send an refferal to the ENT. Lots off paperworks!
Anyways, im schedueld to visit my doctor this week for follow up work and planing. We are going to sort out what we can do and what I can do myself to manage pain, work and daily day to day activities.
Because im actually suposed to start in a new job the next month, but im not sure if it’s possible for me to even work.
So I need to see and have a plan to make it work out for the company aswell.
I’ve also been in touch with a physical therapist, whom may can help. I dont think she can do anything regarding Eagle Syndrom and the symptoms but i think she can help with other things like mobility, excercises for upper and lower back, shoulders, stumack and also helping with diet.
The diet part is crucial i think, because my stumack is getting ****** up by painkillers(i have lots of reflux). And also i think there is lots of foods that can for example be anti inflammatory and also help blood pressure etc.
Im also dealing with something called FHH short for Familial hypocalciuric hypercalcemia, it ****s with the calcium in the parathyroid gland, so managing diet will be crucial! It’s very complicated, because some off the painkillers can actually interfere with the medication i take for FHH.
It’s also a possibility that cortisol/cortisone can interfere with FHH. Im sure ENT doctors/surgeons know this.
The last three things i’ve done that may help is i’ve been in touch with an physcologists emergency help program that we have in our municipality, im not schedueld there yet.
I have also been in touch with pain outpatient clinic in the nearest hospital, not schedueld but my doctor is going to send an refferal.
And last but not least i have been in touch with the Labor and Welfare Administration, they may be in help regarding the forthcoming situation about work, sick leave, economical situations etc. Im also geting a contact person there whom i just can talk to about anything.
Now to the trick part!
My family, work and also my girlfriend needs a little help to cope with this.
My Sister is infact an well educated physical therapist, but she had never heard about Eagle Syndrom, Styloids or anything about this. She was in a bit off a shock when i did break the news. In case you wondering its not going to be my Sister helping me as an physical therapist, she lives in another city than me.
Anyways, is there anything that my family, friends, girlfriend, work or any related people can do to cope with this? Is there any course or community for next of kin?
Specially for my girlfriend, she have been dealing with me and with this damn Syndrom for too long now. We are both on our breaking point to say it so.
She is very supportive and she has infact been a key role the whole time, but enough is enough sometimes and she deserves every bit to feel that way !
Its hard on here, because she doesn’t know how to be at help. Even i dont know what help i need and what I need at all sometimes. As symptoms can vary alot !
And i mean alot !
The styloids trigger all my nerves sometimes, and it triggers alot off my “social nerves”. I can be happy and the next minute i can be sad or angry/upset. The funny part is that everything changes in a split second. Sometimes every symptoms strucks me at once, and sometimes i will have sort of seizures with moderate muscle spasm almost like tix.
And when everything hits me at once, my “social nerves” just stops reacting and i sit there dazed, confused, dizzy and almost like in a trance coping with the extreme pain. My vision and hearing is affected by this.
My girlfriend is confused aswell she doesn’t know what to do, what to say or even how to talk to me, because sometimes im able to talk other days im not even going to try to talk because its difficult and painfull.
And also the lack off understanding by other people is the most difficult part off all this! Sometimes this is more painfull than the actual pain from symptoms!
My father has been dealing with migraine his whole life, so the seizures im talking about here is quit similar to migraine seizures. He just sits there all tensed up, dazed, confused and in extreme pain with blurry vision.
As far as i can find there is only a small supportive group in our hometown that deals with chronical illness, but im not sure this is the right group to contact for my girlfriend.
Thanks for your support !
You’ll Never Walk Alone !
