The Day I've Been Dreading

[Ed209]

Today has been a long time coming, and I'm feeling quite sick about it. Im going back to my consultant because he wants to drain some of the Bio Alcamid from my chest (long story, there's a thread about it), and I'm terrified about the outcome. I'm going to be facing all the worst demons from a very dark time in my life, and it's starting to overwhelm me. I'm trying to think positive but it's a struggle, and I'm in a decline.

On top of this, I've had really bad ETD/glue ear for the last two months which has added to my ear problems no end. My right ear is the worst; I am partially deaf because of the mucus. My tinnitus is shockingly bad, and for some reason I now have hyperacusis, mainly to voices and plates (especially cutlery on plates, and plates on plates, etc). I've tried absolutely everything to clear my Eustachian tubes, but nothing is working. I'm aware it can take months to clear, so I'm going to have to wait it out. With all this going on, all I seem to think about is my damn chest! In a way my chest issue has deflected me away from worrying about my ears. I always seem to focus on one issue at a time; it's almost as if I can't worry about two things at once. Especially at this intensity.

My mom is also going through a really bad patch, and I'm trying to help her, but to be honest I'm starting to feel like I'm running on empty. I just hope I'm content with the outcome of today's procedure. There is also the likelyhood of strong antibiotics being involved. I'll ask for non ototoxic ones, but I may not have a choice.

Happy days eh?

Anyway, I hope you're all feeling better in yourselves. Have a good one.

 

[Rubenslash]

There is also the likelyhood of strong antibiotics being involved. I'll ask for non ototoxic ones, but I may not have a choice.

Avoid the aminoglycosides, macrolides and quinolones imo. If possible, ask for the penicillin class as these are very safe to the ear. (other good options are the cephalosporins and tetracyclines)

Anyway, all the best Ed

 

[Greg Sacramento]

Ed: Dehydration? Do you drink enough cold water?

 

[Ed209]

Ed: Dehydration? Do you drink enough cold water?

Good point. I should up my intake, but I can't stand drinking water without squash or something added. This is one of my weaknesses that I'm well aware of. I drink far too much pop (soda).

 

[Greg Sacramento]

ZERO squeezed lemonade may help some of your conditions. At least it won't hurt. Included is V6, A, E, and zinc. No fat, sodium and sugars. I'm not sold on vitamins for tinnitus, but it does seem that you need more fluids. I wish you the best today.

 

[Ed209]

I'm in the waiting room now. I hope this goes well.

 

[GregCA]

If you have fluid behind your ears you can consider tympanostomy tubes. My daughter had it done 2 weeks ago and I was obviously very concerned about it given my own ear situation, but she's doing fine and it's a routine procedure that just lasts a few minutes. It helps the ear drain and remain dry. During the procedure they drain your middle ear so you start "fresh".

The ear blockage could be a strong contributor to your hyperacusis actually: before my surgery, when my ossicular chain was impeded by otosclerosis, I had maddening H. It went away almost completely with surgery. I've read other accounts of middle ear issues correlating with H, so you may be able to get rid of H by clearing out your middle ear (see above).

I remember your thread about the chest issue you face and the demons associated with it, and you are now finally getting to the D day. I can appreciate the anxiety and apprehension that it must cause you, and I'm sorry that there isn't any magic recipe to take that away from you. There are anti-anxiety meds you could take for the D day though (not necessarily as long term), to help you "go over the hump". I'm sure you know to talk to your doc about it.

If I remember that thread well, your procedure is to get your body rid of something potentially dangerous, so I view it as a positive step to get healthier: it's going in the right direction and it's actionable.

Good luck and keep us posted!
We're rooting for you.

 

[Ed209]

Well I'm out, and can say what I had done is the most disgusting horrid thing you can imagine. He injected my chest with a local and then got to work. By that I mean slicing my chest open and sucking out all the crap with a medical suction device. Whilst the saline solution is being pumped in it made the most horrible gurgling sounds you've ever heard, and in the mean time you're very aware that there's a guy standing over you literally shoving a metal rod around your chest wall (it's really uncomfortable). He is a very nice Dr, however, and I like his demeanor a lot. I told him about my tinnitus situation and he was genuinely gutted for me, because he knows how much I love music (I mean I earn a living from it). I remember giving him a CD of my songs once because he's into the same music as me and wanted to hear my stuff.

Anyway, he gave me co-amoxiclav, which he assured me won't affect my ears. I have yet to look in the mirror and don't won't to at all. I fear I'll see what looks like a disfigured body, even though he said that it looks miles better now that it's out (the Bio-alcamid had hydrolysed, meaning it was drawing more and more water in from the surrounding cells, and had essentially become like a sack of water attached to my chest wall.

He said that he will fit a custom molded implant, if I want, and told me that's what he'd done with most the others who have been through the same as me. He said I can speak to people who've had it done and view photos. It's still another big step though, I don't take surgeries lightly, and it's a lot to think and stress about. At least I suppose there's a plan B if I become depressed when I look in the mirror. I know this sounds superficial, but this has caused me huge problems for most my life, and I have very deep issues with it.

 

[Julien87]

Oh my god, were you conscious during the operation?
I'm glad to see this step is behind you know..
Stay strong Ed

 

[Ed209]

How my god, were you conscious during the operation?
I'm glad to see this step is behind you know..
Stay strong Ed

Yea, you're fully awake. Stuff was just splattering out of me, and he'd be pushing around on my chest with one hand and moving the large metal rod with the other. I was never bothered about the actual precedure (even though it was miles worse than anything I imagined). It's always been about what will be left behind. The psychological scars are beyond my worst nightmare. I was on the verge of suicide when I was around 19 - because of this - and I know that word gets thrown around a lot, but I was in a terrible place. The last month or so I have relived it hence my absence on here. Just to make matters worse I gained the additional ear problem; I thought to myself does this really have to happen now? I'm setting off back home now where it's my wife's birthday. I'll be staying home, I can't drink and I'm in no mood to celebrate. Just so happens it's my mother in laws 50th on Saturday and we've got a hotel booked all night including rooms. I can't drink because of the antibiotics and it feels like the worst timing ever. The following week is my birthday where I've got my mates lining up to go out drinking.

This is a secret no one but my parents and wife know about. I know it's stupid but I've never been able to talk to anyone about any of this stuff; it's just the way I am.

 

[Michael Leigh]

Hi @Ed209
I am sorry to hear of the things you are going through at the moment and hope the medical procedure that you've had will be successful. Hope your mum makes improvement too. I didn't realise you still play music for a living and this could be the cause of your hyperacusis. As you know even wearing the best earplugs a person with tinnitus can still be affected by sound reaching the inner ear due to bone conduction. If you aren't using headphones and monitoring through speakers this is the likely cause. If you are using headphones even at low volume I feel they are responsible even without you noticing it. Very sorry hear as we all need to earn a living.

Hope things improve for you soon.
All the best
Michael

 

[dipp]

Ed, you're going through very hard times, but the good news are that hopefully the procedure is going to be successful and it's all that matters.
Try not to stress a lot about upcoming social events you have, if people don't know about your conditions, you can always say that you have a flu so you can have rest at home

I hope everything goes well for you, keep us updated please!

 

[Ed209]

Hi @Ed209
I am sorry to hear of the things you are going through at the moment and hope the medical procedure that you've had will be successful. Hope your mum makes improvement too. I didn't realise you still play music for a living and this could be the cause of your hyperacusis. As you know even wearing the best earplugs a person with tinnitus can still be affected by sound reaching the inner ear due to bone conduction. If you aren't using headphones and monitoring through speakers this is the likely cause. If you are using headphones even at low volume I feel they are responsible even without you noticing it. Very sorry hear as we all need to earn a living.

Hope things improve for you soon.
All the best
Michael

Thanks Michael, it means a lot. I don't play live anymore Michael, but what I meant by I earn a living from music, is that I run my own private teaching business. So, I technically earn a living through music. The H only started when the glue ear came about. I noticed when people laughed, coughed or raised their voices slightly, my ears would stab. Without doubt it's H, but I haven't had time to process any of this because my entire attention is on resolving my chest issues right now. I did see my GP to see if there's any magic method - I haven't heard about - to clear my Eustachian tubes, but all she came up with was Sudafed. It's something that now needs to run its course.

As far as my chest goes, he advised that I should have it all drained, or as much of it as possible. I was originally under the illusion he was going to take some of it to see how it looked, but he said it's better just to get it all out. He also said that I'm lucky it never got infected. Knowing my luck it'll get infected now; I did ask of the chances and he said there's no way of predicting it. He told me I've got to keep a close eye on it, and it it goes red, swells or I get a fever in the next 3 days I've got to go straight back to have the same thing done again (except it'll be draining the infected fluid).

Life really does mess with your head sometimes. All I know is that my sanity is hanging by a thread. I don't even know how I'm managing to get through each day, I just feel numb like a zombie.

 

[Michael Leigh]

I feel for you @Ed209 and can't imagine what you must be going through. All I can say is that you're one of the most positive person's that I know as you've helped so many people on TT and I'm sure helped bring them back from the brink of dispear. That positivity and strenght is within you, and will enable you to face whatever adversity comes your way and that is as much as you can do.

Stay strong and wishing you all the best.
Michael

 

[dipp]

How are you doing Ed?

 

[Jake007]

I hope your doing well ed, that's a lot of stuff to take in at once. But your a strong person and I believe you will come out of this situation even stronger yet. I hope you get better soon man. Keep us updated my friend.

 

[Ed209]

How are you doing Ed?

Cancelled work after going to the bank today because I feel awful. Currently in bed with a mild temperature of 37.6 c, and I'm in agony.

Not sure if I'm infected or if it's just general trauma that will resolve itself over the next few days. If it gets worse tomorrow I might end up in hospital. It's just sucking the life out of me at the moment.

 

[Ed209]

I'm really fed up now. I feel really ill and have got a temp of 38c with stabbing pains. I'm gonna have to go to the hospital and I don't want to. I don't want to be sliced up any more or put on strong antibiotics. I'm starting to get delirious. I can't take much more punishment this is just unbelievable.

 

[Jake007]

@Ed209

I bet you don't want to go back, but it's better to be safe than sorry. Hang in there man.

 

[glynis]

@Ed209,
Hey! We are all with you and so sorry your going through all of this.
Your one lovely caring person whom we think a lot of .
You get checked out and help for the pain and let us all know how you are...
Sending lots of love and gentle hugs...
Love glynis

 

[dipp]

Stay strong Ed. You are going to get through this.

 

[GregCA]

I feel really ill and have got a temp of 38c with stabbing pains.

To be honest with you 38C doesn't sound that critical a fever, especially at that time of the day, but the stabbing pains are concerning, and if you're worried about your fever then get yourself checked if just to get reassured.
Is the pain expected? What did the doctor tell you the post-op would look like?
Surely your procedure was traumatic for your body and I'd be surprised if there wasn't any pain at all during recovery.
What meds are you taking post op?

Going to the hospital doesn't mean they're going to slice you open: they may simply check you out and reassure you. Possibly draw some blood if you're worried about an infection.

Hang in there!

 

[Starthrower]

Ed so sorry about what is going on. : (

I had to quickly respond when I read your thread and that you were prescribed co-amoxiclav as an antibiotic.
When I was put on the same antibiotic I had horrible stabbing pains in my gut area and a high temperature. It was really painful.

I called the specialist who said it was impossible or something like that. Then I had to go to an emergency to my doctor because of the pain. He put me on a different antibiotic and the pain ceased.

Always listen to your body and your instinct.

Hopefully you are okay now. I know the hospital is not a pleasant place to be.

And I remember your story from a while back. The memories of what you went through at 19 years old with this condition are still in your mind of course. You are a nice looking guy so try to see that in yourself and not the scar or what the mirror reflects. Not easy to overcome though.

Hope to hear an update when possible.

 

[Ed209]

I ended up being admitted to hospital last night. They said I've got sepsis and they treated me as an emergency. I was tachycardic and barely able to stand up;I've been pumped full of intravenous antibiotics and I'm on a drip. I've never felt so ill, I thought I was gonna die. Very scary stuff.

Now they are looking at getting a cardio thoracic surgeon to cut me up again. First I've got to have a CT scan to see if my bones are infected. I had an X-ray yesterday but it obviously hasn't revealed much.

It's just going from bad to my worst nightmare right now.

 

[Ed209]

To be honest with you 38C doesn't sound that critical a fever, especially at that time of the day, but the stabbing pains are concerning, and if you're worried about your fever then get yourself checked if just to get reassured.
Is the pain expected? What did the doctor tell you the post-op would look like?
Surely your procedure was traumatic for your body and I'd be surprised if there wasn't any pain at all during recovery.
What meds are you taking post op?

Going to the hospital doesn't mean they're going to slice you open: they may simply check you out and reassure you. Possibly draw some blood if you're worried about an infection.

Hang in there!

Hi Greg, the problem with my temperature was how fast it was rising. It was over 40 when I got to the hospital and kept rising.

My dr told me that any fever or pain must be taken as a sign of infection and told me to seek help immediately.

 

[Michael Leigh]

I am very sorry to hear this @Ed209 and hope the procedure you're going to have is successful
All the best
Michael

 

[Ed209]

I am very sorry to hear this @Ed209 and hope the procedure you're going to have is successful
All the best
Michael

I can't believe my luck Michael. Everything that could have gone wrong has. I had a cannula fall out, the ecg tabs wouldn't stick and the bed they had for me was broke, so I had to wait for another. The nurse even said "nothings going right for you today is it?". I thought tell me about it. But, I suppose I'm alive. It could always be worse.

 

[vermillion]

@Ed209 you are always so positive and supportive. I'm so sorry that you're going through this. You have to believe that soon you will get much better. Hang in there and stay strong.

 

[Michael Leigh]

I can't believe my luck Michael. Everything that could have gone wrong has. I had a cannula fall out, the ecg tabs wouldn't stick and the bed they had for me was broke, so I had to wait for another. The nurse even said "nothings going right for you today is it?". I thought tell me about it. But, I suppose I'm alive. It could always be worse.

I hope things will improve for you soon Ed...

 

[Lorac]

@Ed209,
I sure hope things get better for you soon. Sepsis is frightening and I am glad that you are receiving treatment. Please keep us posted on your situation. I will be thinking of you today, and hoping for your improvement.