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Eagle Syndrome - Online Support Group

Professor came through

Hi
Cut a long story short I had forty minutes with the professor
I have bilateral Es and he has very good knowledge of it
Except possibly the neurological side ( I have a very active head in sports and my job, which does cause slight relocation of the styloid process‘s and makes for a large variety of symptoms, depending on what buttons they push)
Letters will be sent to a surgeon and a multi-disciplinary team with a request for surgery through the public system
If this is a dead end he knows of another surgeon capable
Either way they must be removed, he thinks I snapped the right one.
Had a great productive working day Friday and Saturday, was a good week but today felt like I was in a different body.
Breathing problems and fatigue, and savage neck pain, polystyrene duo and single massage balls ( thanks Isaiah) and paracetamol are a good choice this evening
This was my darkest day in a long time but I know that there are good days too, I don’t take them for granted, rough with the smooth et all
Wish that there were more but remaining optimistic is all I can be.
And my apologies about the weed comment.

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What a horrendous journey you’ve been on, Optimistic. I hope the doctor you saw is able to push your surgery onto a calendar ASAP so you don’t have to wait much longer. You’ve certainly paid your dues.

I’m so glad the balls are helping relieve neck tension & the paracetamol is doing it’s good work. I’ll be praying tomorrow is a better day for you.

:hugs:

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Thank you Isaiah_40_31🤗
I’m trying to be minimalist on my drug and alcohol intake, I took empty Leffe bottles to the bank for recycling…it was early, thank goodness no one else was there.
I may even soar on the wings like an Eagle tomorrow.
The Amitripylene is in the bin along with Lyrica.
I removed a couple from the bin an hour later, just in case… As you do… For emergencies…

optimistic -
Wise decision on the Lyrica & Amitriptyline. You’re working so hard to be the best you can be under your current circumstances. That says much about your personal character. I think the fact that your diagnosis was finally confirmed, & you found the support you need to put an end to ES has made a world of difference for you mentally & emotionally. Now, stand strong until the surgery or surgeries are behind you, & this period of your life will all be just a memory & hopefully a distant one at that.

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So glad that you were able to see Prof Stassen, & that things are moving forward…would be good to know of the other surgeons’ names if you find out them later for other members… I hope knowing that there is now a plan for surgery will help you get through the difficult days.
Just a note though- the amitriptyline & Lyrica work best by building up in your system, so are unlikely to work if you keep them just for bad days, but appreciate that side effects might stop you taking them regularly.
Thinking of you & really pleased at this big step forward!

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Thanks Jules
I think my system is over sensitive to pharmaceuticals and alcohol
The dose is the poison but no matter how little I take I am destroyed
So I’m sticking with paracetamol and adrenaline fueled motorcycle racing and massage, and if I can’t face work then I take a day off instead.
It was a professor Fenton in Limerick who made the diagnosis having experience of ES before.
As for the Cork or Dublin team who hopefully will operate I will of course let you know who they are
P. Stasson is retired from public service.
Much of my anxiety has gone and I can relax now and concentrate on my family a bit more.
ES is very self absorbing, for me anyway.

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It is very self-absorbing for many of us, optimistic!

Sorry, I misunderstood, I thought perhaps you’d forked out to see Prof Stassen privately!

I’ve added Prof Fenton to our list saying that he can diagnose ES; docs in Ireland are in such short supply :frowning_face:

Opt, so glad you finally got in to see someone. You are on the right path now and are halfway there. I know you have the perseverence to make it to the end. When one door closes, another one will open. Hang in there and try not to overdo it…too much :wink: Listen to your body and keep your flairs down to a managable level. :hugs:

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Hi Snapple thank you!my body tells me to stay in bed
Strange it feels better horizontal, is that anyone else finds ?
But my bank statements say otherwise :joy:

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Jules he was a lovely man who listened, understood ES and was very easy to talk to
He came across ES on the Isle of Man a few decades ago
I hope it’s not a dead end ,we shall see

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When having my worst pain flairs, horizontal and not moving is all i can do. Moving seems to make it worst. Other times, I need to move and keep busy to take my mind off the pain I feel. At times, as we all have discovered, our pain can be positional. While sitting at the kitchen table yesterday barely sipping ( and swallowing) a spoonful of chili, I had a jolt of nerve pain from the base of neck at shoulder shooting up to my ear. Just from that one jolt, I can feel it achy today. Its probably the worst one on that side Ive had for sometime and a reminder that the surgery I have scheduled to get the other side done in early Dec is the right thing to do. After my 1st surgery end of April, i was lucky enough to take off about 4.5 months which I totally enjoyed. 12 weeks was paid state medical level. My health benefits have a good deal of massage and pt benefits I took advantage of too during that time. I went back to my job a couple weeks ago as $$ getting tight, a job I hate and I can tell my stress levels going up and neck and head tension increasing. Thus my pain kicking up slightly. My goal is to make it to Thanksgiving and take leave again for next surgery. I feel grateful I have these benefits when I hear how others are just struggling to get to the right docs with their limited benefits. Its a reminder to me that for now I must endure a job I hate and be grateful for what I have.

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I reckon most of us hate our jobs.
We all need more ‘ me ‘ time , and rest time so get as much as you can
Being horizontal helps ease pain for me considerably
My head don’t belong to my body today
Feel like pulling it off my shoulders and kicking it into the river like a football and watch it float away( how without eyes I don’t know)
Try not to stress out
Pressure belongs in tyres

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I like your description of how your head feels like its pulling off your shoulders. Any movement sometimes seems to cause a reaction at times. I was getting weekly massage which has been cut back due to lack of providers and it has really helped overall to work all those muscles that hold our heads up on our shoulders. These damn styloids and calcifications really cause alot of dysfunction in how we hold our heads on our shoulders.

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This was today’s predicament
Could not feel the tip of the styloid process pushing into the styloid , but styloid was / is tight, pushed my thumb real hard into jaw but the bone has gone North a few millimetres, came to lunch time and I felt totally whacked like I had some strong tranquilliser injection in the head, that’s how bad the fog was
Boss picked up how shit I was a told me to go home but I stayed on only to spite the tusks,
:face_with_symbols_over_mouth: them bones them bones them dry bones :joy:
So brain says I’m not getting oxygen-but I am
I find the pulse either side of my neck and feel the pulse
Starter is Slight pressure causes me to almost black out and if I go south slightly I’m sure I have located the area where bone meets jug
Press here and I could pass out in a few seconds , this is the fog cause
Main course is TMJ with a side of tinnitus, face pain and a sprinkling of dry throat
Desert is a bit of depression and head pressure drizzled with eyes that don’t like bright lights
I’ve literally just finished servicing and sharpening my chain saw for this weekends chopping only as a distraction
I thought it was amitriptyline 10 mg which I took to help me sleep
Apparently I was talking abuse in my sleep whilst fighting with the quilt
Is the amitriptyline causing fog?
Is it the styloid process’s?
Too much is going on, too much a variety going on, it’s too random, too severe, and making me whine and whinge too much :joy:
So I got horizontal and my neck is on being massaged on the top of the wooden headboard and symptoms eased 50 %
Tinnitus keeps changing its frequency
RBEACHER
You mentioned how you had a problem explaining your symptoms to the quack?
Same problem I have
I finally got to the hot seat and froze
Where do I start?
If I explained all the above they would not believe me anyway
I’d be put in a straight jacket and thrown into a padded cell

Keep pressing on, optimistic. Hopefully your advocate in the medical field is working to push plans through for your surgery. Keep calling & checking in to make sure the wheels are moving that vehicle forward & that it hasn’t stalled on some train track…

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Knowing the Irish health system the trains probably going the wrong way😂
Is probably a real bad day
Tomorrow maybe better, I’m optimistic it will be any way

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You’re living true to your screen name!! :+1: :clap:

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Really feel for you, keep plodding (ploughing?) on…

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