Needing Words of Encouragment

General
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optimistic,

Thank you for sharing your frustrations, feelings & perspective. What you’ve said makes sense in light of your horrid situation.

It is my opinion that moving forward without support may become more unbearable than having at least a little bit so I encourage you to stick around. You can stop reading posts, but remaining a forum member will allow us to check in on you via private message. Perhaps you’ll find some “sunshine” in that. Please let me know if this is an acceptable idea.

Here’s a hug :hugs: & a warm smile :blush: to help diffuse the darkness & let you know I care. :heart:

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Optimistic,

I am sorry you are suffering. I truly am. My story is not the same as yours, but I too know what severe suffering feels like. This forum is for support and that is what I am in need of. This is one place we should feel comfortable to share our fears, struggles etc. without being attacked. You do not know my story or anything about what I have gone through, so I ask you to please not be jealous or angry with me. I now know some of your story and hope that you can find the care you need to receive relief sooner than later.

I did not come on here to post about being talked into surgery. I already plan to have surgery. I came on to hear positive stories/insights from other members who have struggled with the awful symptoms of ES and came out better on the other side of surgery. It is very easy to be bitter, jealous and angry when you have been sick from ES., I know. I am not your enemy, I am a soul struggling with the same syndrome as you.

I will be praying that you can get help sooner than it seems possible. All my best to you as we walk through this ES journey together.

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I totally understand where you’re coming from, @anon22211586 , it must be so difficult for you with no prospect of surgery in sight, & there are others in the UK, Canada & Australia who are in the same boat…but any surgery is a daunting prospect, especially one like ES surgery which does have risks, so equally I understand Eagle1’s worries about it, encouragement & support for everyone is what we’re here for…
Please stick around optimistic, you have brightened the site with your humour, we want to be here for you too :hugs:

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Ladies ,I am not attacking anyone,I don’t believe I am,and I am not jealous, my own feelings are spinning around in a washing machine, colours are mixed with whites and all is pink so I can only say how I feel.
I only wish the best for everyone.
I am sorry you took my comments personally, it wasn’t about you really,it’s more about me and how my personality is being twisted due to many factors.
March appointment is cancelled,so I don’t know if I will receive an earlier or later appointment at this time
I still must perform as a fully fit male at work whilst all this shit is going on,and now as I pull wrenches power is fading in my arms,so I have bumped up the steroid dose to see if I can get more miles per gallon.
All of my life ,I have kept my own council,and worked problems out of my own, except for technical forums for motor cycles and similar, and this is my first health related forum, they aren’t for me,not to contribute,anyway,and I did say this before.
You should have know that I am an asshole , I had to stand in the naughty corner on my first visit here because my user name was a swear word,so there u go!!
So I will log in and only search and read as I believe the re are many answers to my questions still to be found here.
I will leave comments to the more civilized among us
And lastly, thanks for all the help,and hand on heart ,My sincere apologies,if any one has been upset my my lack of ? Everything I touch non this quarry is cold, so maybe I am cold to

Lack of warmth!
:wave:

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And ps
Non of you need pray,I am an atheist, probably why I am being punished so much…save them prayers for someone else

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Opt,
Yah know those steroids can make you rage a little…ive been there and done that so keep that in mind. Listening to your story, and the perseverence you have had thru all this, makes me feel I am grateful to have had the health care I have had…even though I am frustrated as hell myself dealing with ongoing ear issues and vertigo. I was able to push my way into an emergency appt with a(2) ENT’s within 2 weeks which was quite an accomplishment. Its nothing like what you have had to endure day after day, month after month. Somehow you just have the greatest humor thru all of this and we all love you for it! So what if you are a little naughty at times. :rofl:
I am wondering if we can set up a GO FUND me site for you to come to the US and finally get the care you need? I hate to see you suffer so much. You deserve so much better from the medical system. :smiling_face_with_three_hearts: :hugs:

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Thanks :hugs:but that isn’t the answer,any spare funds would spent on another motorcycle,must get priorities right
This is the truth, I pay €60 to see a gp and when I mention treatment for ES ,all I get is a blank.
No talk of meds,or pain management or nothing
I have requested a blood test on several occasions now,one is because the last time liver marker was high,and they don’t know why,they said it may be all the Titanium in the body so I need an update on this, secondly,it is to check why my hands are infected and weeping ,they look like hand shaped pizza my mother used to make.,and thirdly,I need the annual prostate check
I can’t get an answer.
So I have tried to call the surgery to talk about steroid dose,and blood test.and after half a dozen tries ,I get through,and I am on day 3 waiting for a call back
As for the ES surgery, I have no date ,only a cancellation of a visit in March
It’s a ENt cancer centre,so I can understand why I am waiting,there are sicker people than me.
What is post op going to be like?
:rofl: Here’s a box of paracetamol,and a roll of toilet paper,good luck and thanks?
Here is a list of things you may feel after, if you feel like this ,or bleed from this area, don’t call us,call the Samaritans
Not once has anyone talked to about my condition,how to manage it,how to beat pain,now ,
I feel like I don’t matter to these people,and its made worse because I pay them.
After self diagnosis,the time the doc refused to feel the styloids,I asked him for €60 , I refused to pay
They checked my depression two years ago ,I thought here we go,some strong meds coming to get high on ,but no,I saw a shrink,all they wanted to know was if I was a danger to society or not?
I would to experience real good health care
From start to finish
Tea and toast is the only part which is 100@% in Irish hospital.
Honestly,it’s s lovely thought,and I am touched,but it’s not the answer.
I don’t know what is
I have had a bad November,and today I woke to what felt like a mini stroke,and I am slurring my words slightly,and I feel drunk,and it’s not the Guinness ( not cold enough to drink yet)
I am up shit creek without a paddle,only floating along
No plans,no help
I am not looking for hand outs, empathy,or sympathy
Looking for forgiveness possiblity of that alright
I have episodes with left arteries,they are getting worse, I reckon it will be a a blocked or cut caratid that will leave me dead or more brain dead then I am now

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I know health care is under a strain everywhere, but it sounds really horrendous where you are, especially paying for the privilege! So sorry the March appt has been cancelled, at least it was something to aim for… :hugs:
PS will still pray anyway, there’s no limit!

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Hey there!

Long-term prednisone/steroid use actually can cause muscle weakness. (“One of the major problems of using steroids such as prednisone is they cause muscle wasting and weakness when taken long term . This is a significant problem for people who take steroids for many chronic conditions, and can often result in patients having to stop steroid treatments” - from Dr. Google.) Your arm weakness may be coming, at least in part, from the steroids you’re taking. It would be good for you to get off of them as soon as they’ve helped your other situation. If they aren’t helping, start weaning ASAP. Don’t stop them cold turkey as that will cause other problems.

I’m really sorry for the inconsistent & poor medical care you’ve received. Medicine needs to be practiced w/ compassion & patients not as objects on an assembly line. There is simply no excuse for that no matter how backed up or stressed out a doctor is.

Your hand situation sounds awful, painful, messy…I can’t believe no one will help you with that. It needs to be assessed to see what the cause is. That can be done by a skin scraping that will determine if it’s bacterial, fungal, viral…If it’s being treated w/ the wrong medication i.e. antibiotics don’t work for a fungal infx, then it won’t get better. I’m glad you refused to pay for the appt where the doctor wouldn’t assess your ES situation. Good for you!!

Your current situation (I woke to what felt like a mini stroke, and I am slurring my words slightly, and I feel drunk…) are absolutely from vascular compression. You nailed it! Sounds like you’ve got both jugular & carotid symptoms. Those are scary! :scream:

I’m with Jules, my prayers for you will continue. I won’t give up hoping for decent help sooner than later for you, optimistic. :heart:

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Isaiah, Is there anyone within your health care system who treats Eagle? I’m relatively new here, so just wondering if there are any out-of-box options for you. Like if there’s n one locally, maybe one of the US docs would do a telehealth appt with you and see if you’d be a good candidate for surgery. depending on timing, you could probably stay with me if you could get to the Denver area.

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Hi nnaeve,

What a sweet offer! I think you meant to direct this post to @anon22211586 as I had my ES surgeries in 2014/15 & am doing fine. He lives in Ireland where the people aren’t as fortunate with their medical care as we are here.
It would be great if he could see Dr. Hepworth, but I was just told by a new member that he’s not taking on any more new patients this year but to try back next year (in three months).

:blush:
Isaiah_40_31

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How is pain managed after surgery?

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It depends on the surgeon who does the surgery. Some put in a drain as part of surgery then keep the patient in the hospital over night. The drain can stay in for several days before being removed but it helps reduce post op swelling. Some doctors Rx Prednisone for swelling but not all do. Most recommend ice & Rx narcotic pain meds such as Percocet, Vicodin or Norco. Dr. Hackman in NC sometimes applies a “neck bra” i.e. a compression device that surrounds the neck to help keep post op swelling in check. That stays on for about 3 days after surgery. We also recommend head elevation to at least 30º, whenever lying down, for a week or more after surgery as that alone helps reduce inflammation., and it sounds like you’ve already got that handled.

When you have your appointment, if you talk about surgery, it’s very important to ask these questions:
• How many ES surgeries has the doctor/surgeon done?
• Which surgical approach will be used i.e. intraoral or external?
• How much styloid will be removed (removal as close to the skull base as possible is the best answer) & will calcified stylohyoid &/or stylomandibular ligaments be taken out or left in place (yes is the best answer)?
• Does the surgeon do bilateral surgery (i.e. both sides at once) or unilateral surgery (each side requires a separate surgery bilateral cases). (Most docs don’t do bilateral surgery)
• Will a hospital stay be required or will surgery be done outpatient?
• In the doctor’s experience, what percent of symptoms relief has (s)he seen from surgery? (50-80% is the norm but some people get almost complete recovery)
• What is the expected recovery time? (Some doctors say two weeks. This is unreasonable. Two months up to a year for nerve recovery is more normal).

I was given an Rx for Percocet, Prednisone & Ondansetron (anti-nausea) post op. I didn’t need the anti-nausea med thankfully, but some people do get sick from anesthesia, so it’s a good thing to have on hand. It’s also good for you to know if you’re allergic to any of the opioid pain meds or Prednisone as other options can be prescribed. If you have no known allergies, the doctor will Rx whatever (s)he deems most effective.

If I missed anything, I hope others will chip in.

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Thank you very much for this & for taking your time to help me. I was not sure what all I needed to ask this coming Friday. I have read so many horror stories about this but I feel surgery will be my only option at tis point. I am going to print your post & questions to ask as well as post surgery info. I am so overwhelmed, in so much pain, very depressed & the anxiety is nearly too much to handle all at one time. I am so glad I found this place before my ENT visit. Take care & will keep you posted. :rose:

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I hope that your appt goes well this week :hugs:

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I hope you make some good progress at your appt. FYI - Some offices won’t allow you to see a second doctor in the practice after you’ve seen a first one. It would be good for you to check to see if the surgeon you’re seeing is familiar w/ ES before you go in. If he’s not, you should either cancel your appt & book with Dr. Goldenberg, or at least explain the situation (i.e. that your PCP referred you to the doctor you have an appt w/, but if he can’t help you, will you be able to see the associate?) If Dr. Goldenberg has a poor bedside manner, it doesn’t mean he’s not a good surgeon. Some of the best surgeons are somewhat socially awkward & don’t relate well with their patients. In a perfect world, it wouldn’t be like that, but as you know, our world is far from perfect. :hugs:

Here is a link to posts made by one of our members who has seen Dr. Goldenberg:

https://forum.livingwitheagle.org/search?q=Dr.%20Goldenberg

You can send SheilaM a PM to see how she’s doing now. Her surgery was in 2019

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