Finally post op!

[Angie UK]

Hi all, havent been on here for a bit, things have finally moved along, & had retrosigmoid surgery on 13 October 2011, in the UK.  All went reasonably well, small but very sticky tumour, well wrapped around the facial nerve, but surgeon spent a long time carefully removing it, to preserve my facial function as well as he could, sadly this was at the expense of my hearing so now SSD on the left. Had very mild palsy, droopy mouth, & eye not quite closing, but really very minimal problems. Using gel tears to cope with the dryness.

Discharged after a week. Five days later, woke up with significant facial palsy.  Total face droop, couldnt smile, bare teeth, close eye without force etc.  Disappointing.  Then noticed my nose was dripping constantly. Husband whisked me off to my GP, culminating in urgent phonecalls to the hospital, emergency re-admission on Wednesday night, with CSF leak.  2 Cancelled surgeries to fix the leak later, & I am back at home for one night, in quarantine to minimise menigitis risk (!) going back in later today, for 3rd time lucky rescheduled surgery on Monday.  Happy days! On Steroids again, face still not moving, but now more concerned about getting plugged up.

Oh the joys of AN's!!

[leapyrtwins]

Hi, Angie.

Congrats on being a postie!

I hope the rest of your recovery goes smoothly; sounds like you've been through a lot.

Best,

Jan

[Silver Sonnet]

Angie, as is the case with all our stories, your post makes me want to cheer (because things went reasonably well) and cry (because you are having problems).  My experience is a bit different--if I had CSF leakage, I didn't know it, but two weeks after surgery, I also developed reasonably extreme facial weakness (my doc won't let me call in paralysis).  I was put on large doses of steroids and monitored very closely by my doc.  He kept telling me that as long as I had any movement at all, I'd get full function back, and I did.  (For the record, I couldn't see any movement when the weakness was at its worst, my doc could.)

Please let us know how your surgery goes, and I'll be thinking of you.

[producer]

Hello Angie, sorry to hear about your troubles post-op given the smallish tumour.

Please let us know where you had your operation as there arent many from the UK. IM in London and still trying to decide just what on earth to do about my AN.  Its  9mm x 6 mm x  6mm.

best wishes

[Angie UK]

Hi all, finally back home late Saturday 5th November, after further surgery on Monday 31st Oct. Initially, when I was re-admitted the Wednesday previous, the ENT consultant came in at 2.45am (honestly!!) to say that they could see the leak, but weren’t exactly sure whether it was coming from inside the skull/brain, or from the outside area, the menages?? Anyway, he says we will open you up, through the original incision, pack it up with fat off your tum (yum!, not that I have a lot to start with!!), it will take about an hour, & its more of a inconvenience, its fairly straightforward, & that will be that. OK. Got that sorted in my mind.

Once the debacle of actually getting the op done (I have to admit the possibility of meningitis was a bit worrying, when they kept postponing the op, all for good reasons I know, but you still worry don’t you?) was over, the top ENT consultant came to see me on Monday morning prior to surgery (due 2nd to theatre) early having seen the CT scan, to tell me what the plans were. Then he throws me a little curveball... He is not convinced that their original 1 hour patch-me-up-&-chuck-me-out idea is going to work.... hmmm So the plan now, is to remove my entire inner ear structure, seeing as I lost the hearing in the initial surgery, & its now redundant anyway, then seal up the ear from the inside, permanently. This would hopefully seal the leak from wherever it was coming from. Unfortunately though it would be much more than an hour surgery…. From some research on ANA, it would appear this is/was called a Sub Total Petrosectomy and Blind Sac Closure???

Bumped up to first place on theatre list, down to theatre at 9.15am. Finally back on ward at 1.45pm. Turns out that surgeon actually took my ear off from the back, to do the work, resulting in a another incision, right around the back of my ear, literally taking my ear off! My ear is now incredibly painful, & has a row of stitches, which ENT tell me will be left in permanently, & no depth inside the ear. Side of face is swollen, & ear feels like Dumbo's!!

I have to say I was woefully unprepared for all this. I really had bounced back out of initial surgery, chipper as you like. Felt really quite good, although I knew there was a long way to go, I still felt this was totally an achievable goal… Really positive. Now I feel very differently. This second surgery has left me feeling totally bashed about. I have to be honest & say that the necessity of the second surgery has left me with far more issues that the original one, & right at this minute, this super positive person is feeling very deflated…

Gosh I sound very down, sorry about that. I guess I needed to get it all down & out of my system. Feel a bit better for writing it down. I just feel a bit like I’m standing in front of Everest, feeling like this mountain I am never going to climb, & wondering where all my positivity has gone….

I know Kenneth had this CSF leak procedure.  If you are around anytime soon, Kenneth, how are you getting on?  I have some horrible issues relating to this second surgery, so any positives that you could give me for the future, plus of course from anyone else who has had this done, I would be eternally grateful.    6  days after 2nd discharge, & I can see my face is swelling up.  Should I be worried about this?  I was discharged, taking Dexamethazone steriod on reducing dose, & they finished a couple of days ago.  Still have to take painkillers every 4 hours, half my head feels like it isnt there, totally numb around the ear & original site wound.   Any help would be appreciated.  Best wishes to all   Ange

[Cheryl R]

Angie, I also went thru this for a leak back in 2006.     It is kind of like going thru the AN surgery all over again.   They had done translab for the first surgery and then went in thru  the same incision so you could say your leak repair was translab.        Things did feel rather weird for a time and it did get better.     My first surgery done 2 weeks before was for a facial neuroma and had a nerve graft done at same time with nerve from the ear so it was already numb in that area for me.     You are still very soon past it so you still will be feeling not right for a time yet.     I can't remember if I had a face swelling but bet it was some anyway.      Any questions you have do call your surgeon.         My eustachian tube was repacked with fat  and I have no ear drum there now but muscle over it so it pretty much feels like an ear drum.           I had strange tastes for a time and was scared of having a new leak but I did not.        For me this was a much shorter surgery time wise  but it was like starting over again.        You will get better and will need time again but you will be back to yourself.       Just take it easy and let us know how it goes.     
                    I wish you well!                  Cheryl R

[Jim Scott]

Hi, Angie ~

I'm sorry to learn of your post-AN surgery complications and the problems the second surgery has caused you.  I agree with Nurse Cheryl that you should refer any questions to your doctor who can offer you credible, professional advice, if needed.

As for venting your not-so-positive feelings here: please don't apologize.  Your feeling of deflation is not at all unusual under these circumstances.  Besides, as I like to say: if you can't complain a bit here - on the AN discussion forums - then where?  Many of the folks reading your post have had their own post-op struggles of one sort or another and can empathize with you.  These forums exist to help support AN patients and that support sometimes is just the fact that you have a place to state your negative feelings to those who can understand.  That said, I have absolutely no doubt that you'll recover from the second surgery and in time it will be a memory.  However, that is in the future...hopefully the near future.  For now, just know that (a) things will improve and, (b) you're in the thoughts and prayers of many - who wish you the best.   

Jim

[Brewers7]

Angie,
     I am so sorry to read about your difficulties.  I had CSF leakage and facial palsy too.  I had a drain for the CSF leakage.  Still working on the face.  God bless you.  Susan

[producer]

Sorry to hear of your troubled second surgery Angie..

Please share where in the UK you have had your procedures and which surgeon(s).

Best wishes in your recovery


chris

[Angie UK]

Hi producer, sorry to be so long in replying, but I dont get onto the US site very often, I'm more prolific on the UK one, BANA.  I would recommend you join B(ritish) A(coustic) N(euroma) A(ssociation) as you will be able to "talk" to people near you, & who share the same hospitals & consultants.  Unfortunately I am nowhere near you, I am in Worcestershire, & had surgery at New QE Birmingham, but I know of several people on BANA who are in & around London & the Home Counties, so you are bound to find someone to help.  It does cost £18 for a year's membership (when I joined anyway), and I must say it was money well spent.

It is hard trying to decide I know.  For me, I was young, and the tumour was getting bigger, therefore I decided against GK and had surgery. 

[stevecms]

hi angie had my op at the qe as well my consultant is mr walsh can i ask who u had  :)steve

[Angie UK]

Hi Stevecms, I started off with Mr Walsh too, but was transferred to a private neurosurgeon doing NHS work, from Droitwich.  Mr Irving at QE remained my ENT surgeon though and he did the CSF leak work too.

[stevecms]

hi angie,small world we live in droitwich,how u feeling now