12/7 Post op

[Suu]

G'day everyone
We'll it's done and I'm going to say what it was like and maybe help others.

I woke up in pain with a monstrous headache.  There was a thin drain in the outside of my throat at the end of the stitches. I also started getting earaches in my deaf ear.
The incision didn't hurt at all.
My ear felt like it was 3 times its usual size but I looked in the mirror and found that it wasn't but it was definitely a weird feeling when I touched it.
Where the drain was, it started to bleed clear fluid as well as blood on the outside of it so they took it out.

The most queerest thing that I hadn't read about was that I have no voice above a whisper.  The doc said it'll come back anywhere between now and 6 weeks! Yikes!
I needed a speech therapist to show me how not to choke on food.  It was taking 3 swallows to get the smallest of food down and it was scaring me a bit so I had to learn to relax. I'll be seeing her again next week.
The buildup of saliva and/or food in the operated side is difficult to get rid of so I rinse my mouth out often.
Then there's my tongue.  How do I explain the numbness and the weirdness of how it works now? Even whispering, it's like I have marbles in my mouth.  I can't lick the left side of my lips (this will make me look more ladylike with a napkin so it could be a good thing  ).
I cough a fair bit and hold a cushion over my neck as it's pretty sore and I have a ticklish thing going on at the back of my throat.

At the moment (5 days postop) I'm having protein shakes and baby food. 

I've found a way to lose 20 pounds (10kg)! You just have to go thru hell and get your throat slit open!!!! Waaaaaaa hooooo! I may put a patent on it and make as much as my surgeon just made LMBO

And to end all of this on an extremely high note....... I've started blinking more!!

(BTW - I'm only 6 weeks out from having a total hip replacement on the same side that the doc took the tendon out that he used as a sling to put into my face.) It's just like doing me up like an old car LMBO

If hubby thought it's been hard to get used to me being half deaf then I dread the thought of what he's thinking about his wife not being able to yell out for something 

Warmest of wishes to everyone.
Lovenhugs,
Suu

[saralynn143]

I wish you speedy recovery, Sue. Hang in there; I'm sure the worst is behind you now.

[alabamajane]

Sue,
Thanks for the post about how you are doing. I had the same surgery about 14 weeks ago. I did not have the voice issues, although , I thoroughly empathize with the ear issues.. I said for the longest that my ear felt like "Mr. Potato Head" , which some of you younger folks may not quite "get",,, but it felt like ear was planted on side of my head.. tingly, hurt like heck to touch and the side of my neck has been sore up till the last few weeks.. healed well though.. my tongue will now touch right side of lips,, and it was very difficult at first to learn to eat and swallow with just one side of your mouth. I did lose 20 lbs too,, not really the "easiest" way to do it, ,but it worked! Mainly because you can not chew or eat anything much.. frozen yogart was my new food of choice for several weeks.. swallowing is still difficult at times. You will just learn to take smaller bites, keep food on the "good" side of mouth and  swallow slowly and deliberately.. but it does get easier as the time goes on and you get more feeling back in tongue and face.. Good luck to you, and remember it all will get better with some time... Jane

[Suu]

Thanks Saralynn and Jane.
My visit to the ENT surgeon showed that my left vocal cord isn't working at all after he put a camera up my nose and down to the voice box.  It's very swollen over.  I can still only whisper but it's also hurting to swallow saliva so I might have to not strain it by trying to talk.

The babyfood diet isn't as bad as I thought it would be.  I even prefer the baby food to having the protein shakes due to not having to suck through a straw. I'll hop on the scales next Tuesday and see if I've lost anything between being in hospital and then.

I also got the go-ahead to wash my hair.  What a funny feeling that was.  The 'Mr Potato-head' feeling made me gag LOL  I got hubby to dry behind my ear.  Do we ever get used to that feeling?

While the stitches are slowly disolving I have a fair bit of bruising so I'm putting cold compresses on the scar that goes down my neck, as that's the sorest part but it may also have something to do with my vocal cord being in that area as well.

It sure is a learning experience isn't it?

I see the GP on Monday for a general check-up, the eye doctor on the 27th and the ortho surgeon who did my hip replacement on the 28th.  Then it's a whole 2 more months before I see the ENT for a follow-up for my voice.  After that I'm going to live.  Live away from wondering when my next appointment is and do something other than worry about what my body is doing.  (Does that make sense?)

Lovenhugs to all.
Suu xxoo

[alabamajane]

Suu,
glad you are doing well in recovery.. the ear feeling will last several more weeks.. mine at 14 weeks is still numb some, not as bad, and beginning to feel more like my "old" ear is there again!, ,, does not hurt as much to touch it,, but still tingles a little. As for the neck,, mine is still sore some, not too bad though. You can ,, or so I was told,, put vitamin E oil on the scar to help it heal and not leave much of a scar.. it has helped mine heal nicely,, hardly noticeable any longer.. it is still sore to touch a little though. I am thinking that will last awhile longer..  surgeon told me not to "massage" that area for now,, I was asking him if I could massage my  face to help it get feeling back in it,,,I don't see my neurosurgeon till March 13, but all seems to be healing well. Like I said, I never did get the voice issues and eating is getting much better (maybe  TOO much better..   ) ,, it is still awkward getting used to tongue movements,, but I am getting there.. swallowing is better if I take my time..
Hang in there,, washing hair was a BIGGY  for me... probably for most of us,, I still take it easy and don't rub too hard.. but it does get better with some time.......... good luck,, Jane

[Suu]

Thankyou and g'day Jane.

I had a barium meal under x-ray to test my swallowing and they found that thin liquids are going into my lungs.
For the next 6 weeks I have to add thickener to everthing from custard down to water.

I'm afraid I'm not handling the news very well at all so I'll go for now and come back when I've let it sink in.

[Suu]

I'm slowly coming to the realization that having an AN is an ongoing thing (for me at least) that never seems to end even when it's been removed.
This latest thing regarding not being able to swallow liquids properly has pretty much floored me.
Today the thickener arrived and while I know it's to save me from getting pneumonia or literally drowning, it's a reminder that there are consequences that keep on keeping on and we have to be vigilant of anything new that crops up after having our heads cut open whether it's for the original surgery or for corrective surgery to try to make our lives a little more bearable because these other surgeries may have adverse effects.

Has anyone else had to have this eating regimen when their vocal cord stopped working?  I haven't read of anyone going through the barium meal tests to see if they were swallowing their food correctly but if you have a vocal cord problem I really do recommend you have the test done to make sure that you aren't building up fluid in your lungs slowly over time.

[pjb]

Hi, I am not on here as often as I would like but looking through the posts today I felt I needed to respond to this...After my surgery the outcome was not as bad as some there was no facial paralysis but I was diagnosed as having a sluggish stomach since the surgery. I have difficulty swallowing and I had that test with the food and everything was okay the main thing was to see if the Vagus nerve was damaged from surgery which can happen and hoping this is not a major problem with others but is definitely a question to ask the surgeons.

[Cheryl R]

The thickened liquids is used alot for stroke patients and other types of conditions that a person may aspirate into the lungs as your case.     Are you on a pureed diet also or allowed to have solid food?          We used these alot when I was working (nurse)           Juices did ok with them but milk and water just weren't the same.     Sometimes you can make it too thick.     Even pop works too.   (Not soda in the midwest)        Was it mentioned if you needed to do a chin tuck each time you swallowed too or maybe not needed in your case.        Good luck with this and hope this resolves itself soon.       
                                                                       Cheryl R

[pjb]

Would a consult with a Speech Pathologist also help with this ??

[Suu]

A quick update:
CherylR - everything has to have a thickness of '1' which is thickshake thickness, even food. I've been pureeing all food with a little water or milk.

Still no voice above a whisper but the speech pathologist said she'll see me in another 5 weeks. I'm seeing my GP on Tuesday to try to get in to see another one as I feel like I need to be doing something different seeing I can't feel my tongue at all on the left side now.

I'll also ask about tucking my chin down while swallowing.

I'd love to know how long before voice comes back.

Thanks everyone
Suu xxoo

[jaylogs]

Ughh...Suu!  I am so sorry you are having to go through all this!! But it seems your spirit is in a remarkable shape, so just keep up that great attitude!  Keep us updated on how it all goes (if you can!)  Take care!
Jay

[Suu]

Hi Jay and everyone else

I asked my GP about how to swallow and she said I needed to at least hold my head to the right side so I can feel the swallow action a bit better.
She wasn't happy with the lack of time between followups with the speech pathologist or my ENT, as I'm still at a whisper, so arranged for both appointments to be brought forward to next Tuesday.

Do any of you get scared?  I do.  A bit more fearful this time due to the pneumonia threat.

Laughing is the most weirdest of all - to laugh out loud I'm actually sucking air in instead of out  I must not only sound a little hoarse but sound like a little horse! LMBO

Cheers all
Suu xxoo

[Suu]

After visting the emergency ward yesterday I feel like I may be seen to quickly for a diagnosis at least.
Yesterday my left side of face swelled up and was very red.  I had (still having) earaches and a new thing like someone sticking a needle into my deaf ear and temple. It's lasts a second but it's a second of terror.
Although I didn't get to see the surgeon, I was very lucky that his registrar (who was at every consultation since the beginning) was on call.
He's had a look and said no infection but sent a photo of it to Dr Eisenberg who put me onto antibiotics as a precaution until I see him on Tuesday.   He also mentioned the vagus nerve and has put that in my notes for the specialist.  They simply haven't had enough practice on ANs over here to form an opinion from an external examination.
IMO I want another MRI.  I haven't had a follow-up one and I would like a clear picture of what's going on.  I'm hoping they may find the cause for the continued dizziness while they're taking slices of head and looking at the pictures carefully.
Still no voice but I'm learning to take a deep breath before trying to say something and hubby mutes the TV or radio as soon as I want to say something.  He's been a rock!

Love and hugs to all of us.
Suu xxoo

[LakeErie]

While I never had the nerve graft done, you did mention the Vagus nerve, and I did have 10th cranial nerve involvement which led to vocal cord paralysis on the right side of my larynx.
It took two months before my voice was more than a hoarse whisper, and four months before I gained any real strength to my voice. Now at just over five months since surgery my voice is even better, though not normal - I sound like I have a bad cold for one thing.
The other problem deriving from the vagus nerve was swallowing difficulty which has also slowly improved. For the first few months I needed water etc to wash down each swallow. Now after 5 months I can swallow on my own probably 80% of the time without needing to drink something.
My surgeon feels I will eventually return to normal in regard to both my voice and swallowing.
But it does take time.
I hope you soon begin to heal. If your voice and swallowing problems are vagus related, even in part, you may see improvement soon just as I did.