Posted , 5 users are following.
Well, it's Day 1 of Post Op recovery after a 4th surgery (first surgery on the left ear this time)...I forget just how much this surgery hurts....
Recovering by myself doesn't help either. I hope that everyone has a support system.
I'm happy to talk with anyone who needs it. You never know how much you need support until you don't have it.
- B
1 like, 11 replies
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Court_Jester statebryan
Posted
I think you deserve a medal for enduring surgery four times already!
Are you still in hospital, and how long stay do you expect?
I hope it's all going well with you.
I'm a fellow-sufferer ... well, I can't say I'm suffering, as I'm not in any pain, but have been diagnosed with cholesteatoma and have been waiting for an ENT willing to put me on a waiting list. None seem willing to accept a Pensioner Patient.
Is there any way I can help you? [Except for throwing money ... I don't have any!]
Please keep me posted on your progress.
[Work it for all the sympathy/help/kindness you can get!]
Cheers
The Court Jester
statebryan Court_Jester
Posted
Thanks for reaching out. If someone had told me I'd be having this surgery almost annually since 2010, I would have called them crazy. It's not fun to say the least; albeit, necessary to eradicate the disease.
I was released on Friday, same day as surgery. It is always an outpatient surgery with all of the recovery after being semi-conscious from post recovery. Surgery for me has lasted 3 hours to 7.5 hours in my longest surgery.
It's a difficult thing as one does not necessarily feel discomfort until infection occurs as it did with my right ear.
I need to familiarize myself with what a "pensioner patient" is as I'm in the states and have not heard of such. Will do that when I'm up for more reading.
Honestly, I don't need anything that money could buy. This disease has continually knocked me on my ass and keeps trying to take me down. Nothing is more humbling than that and it make you realize that not much else matters if you aren't physically and mentally well.
A simple understanding and someone being sympathetic to my situation is always nice. Empathy is welcome too, of course. All too often, I get thrown to the side by family, friends and even medical professionals with no understanding what a victim of cholesteatoma endures.
Some cases are one surgery and done.
Others, like my situation of having a Bilteral Acquired Recurrent Cholesteatoma require a little more finesse. The physical pain one must endure is quite high as it does truly disrupt the integrity and function of the hearing structure/head/skull. I wil say in my personal situation that the emotional pain is even more so difficult. At least for me. I've had to make drastic changes in my personal and professional life. Being 28 years young, I never thought I'd be regressing in either part of my life. Who knew?
My best advice is to inform those of whom are there to support and love you as best as you can. This will help them to help you when and if needed. Most of the time people ignore what they don't understand. This is currently happening and has been happening since I was first diagnosed in 2010. My family and friends have been driven off by my depression, emotional state and their misunderstanding of what's really going on.
Anyway, I digress..
I may've sounded a bit melodramatic but this is a real thing and should be treated as such.
Please let me know if I can be of any help or support.
All the best to you.
B
diz123 statebryan
Posted
statebryan diz123
Posted
Hope your recovery continues to go well.
Ear popping for me is always present as my Eustachian tubes are not fully functioning so I'd be a bad resource for that.
Also, I experience severe tinnitus in both ears now. It is usually so loud for me I have issues hearing people. Being in a job where I present, sometimes daily,to clients; I am having to re-position my role in my company -- very frustrating.
My right ear has had Ossicular reconstruction and I only have about 30% hearing. My left ear hearing structure was not compromised however I will no longer have the 85% hearing I had before. I will update you when I have my hearing test once I've healed more.
All in all, think of your ear holistically and how it functions with regard to air passing through. The surgery itself has disrupted whatever pressure existed prior so this will have to be rebuilt. Also, depending on how much the cholesteatoma damaged your middle ear/mastoid or even inner ear, the symptoms can be worse.
Best bet is to keep in mind that your ear will be readjusting itself so some popping, discomfort, muffling and even deafness is going to occur.
I hope this helps. I am no medical specialist but this disease has haunted me for years so I am familiar.
Please let me know if I can help further.
B
diz123 statebryan
Posted
statebryan diz123
Posted
I thought the same thing when I took the packing out thinking that was what was blocking the sound. I then realize that it may just be how I hear now.
I know what you mean about reading stuff you wish you hadn't read. It definitely doesn't help.
Feel free to ask anything else. Happy to share information that may help another.
diz123 statebryan
Posted
cholestear statebryan
Posted
You said you are in the states. I am as well and I'd love to know where. I have seen 11 otologists all around the US - half of whom diagnosed cholesteatoma and half said I don't have it, which is part of what is taking me so long besdies my immense fear of the surgery. It has progressed though so some of the ones I've been able to revisit are now concurring with the c-toma diagnosis,
I completely understand what you said about friends, family, etc... as no one understands and all are extremely tired and uncomfortable with the issue so I pretty much keep to myself about it, which is difficult. Very few people really understand about hearing loss on its own as well - so it can feel very lonely.
The ear with c-toma had sudden hearing loss - which also made it difficult for the diagnosis as c-toma doesn't usually work that way. But underneath the c-toma it's only about 40-50% potential - and then oddly the other ear started to lose hearing rapidly and its down to 30-40% with no c-toma (yet) so my hearing prognosis is not good and there's obviously other things going on that no doctor has had the desire or patience to look into.
Have you had all 4 surgeries at the same place? Because I've been to so many places I've been presented with many different options of types of surgeries and it's been difficuilt to try to determine what (if anything) is best. The one I'm supposed to have on the 10th is retrograde surgery - which is where they go in backwards and combine CWU with CWD - but leave you with CWU for better outcome. I know mine is on the facial nerve as well as the tegmen/dura and I've heard it is "extensive" - so I'm very scared.
What types of surgery have you had? - CWU/CWD/atticotomy/retrograde/hybrid?
How have your recurrences been diagnosed? The surgery I'm planning to have gives you a cartilage ear drum which no one can see through so it makes it very hard to know if a recurrence has occurred until it would present with very serious symptoms. Mine are only supposed to be with MRI, which is scary because I had 2 very reputable university hospitals look at my existing MRI which shows an extensive mass - and one diagnosed it as c-toma and the other said I definitely didn't have it. So how are they going to know before I have brain absesses, facial paralysis and all of the other issues?
I think I may have facial nerve issues after this surgery as I know my c-toma surrounds it and my face already has odd feelings. Saying goodbye to taste as well - as the surgeon told me he was going to "sacrifice" the taste nerve. Has that happened to you?
It honestly does help very much that you are on here telling your story. If you can survive 4 surgeries, shouldn't I be able to survive my first one? Was your first one the most difficult or are they all up there? What do you find works best for post-op pain that won't make you sick or too crazy loopy?
I'm very glad you posted on here. Since it has now been 2 weeks after your most recent surgery I'm hopeful that you are doing better.
- J
katie38055 cholestear
Posted
I'm quite sore post op nothin major just the surrounding bones are very tender and bruised! But this surgery will save your life in the long run!
Good luck for surgery
katie38055 statebryan
Posted
Its took 4 years of continuously going to ear nose and throat here in the UK for one new doctor to tell me that I have cholesteatoma 2 weeks ago, so they got me in for surgery very quick and they said they couldn't get over how big it was and never expected it to be this big, they had to sacrifice my taste nerve and my tongue on one side feels so weird and literally I cannot taste anything!!!! It's like eating dust or something!!! They had to remove all 3 hearing bones but are certain there is no c-toma left! Hopefully!
Now my question is ., when can I take this ridiculous outta bandage off? I no my packing comes out in 2 weeks but seriously I can't wait round with this stuck to my head for 2 weeks can I?
Is my skull meant to be this painful? It's like a punch to the head or something! My ear feels fine it's all the bones around it they are so bruised and sore right now! I hope this is normal as the nurses have given me no aftercare advise as they said the surgeons haven't given them any so I was Sent home with a massive gauze tapped to my head and told see u in 2 weeks?!
Sorry to hear about all your surgeries! And hope that it all goes for you!!
diz123 katie38055
Posted