Author Topic: Frustrated  (Read 7986 times)

mimoore

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Re: Frustrated
« Reply #15 on: November 08, 2008, 11:47:04 am »
Hi Bill,
I'm on the list but nothing yet...in the mean time I had an EMG that showed my eye has started to regenerate. Just last Mionday it has started to tear - it will still sting from time to time because it still does not close. I am hydrating it but not nearly as often.
Thanks for asking, how are you doing?
Michelle  ;D
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

bltfollis

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Re: Frustrated
« Reply #16 on: November 09, 2008, 11:38:40 am »
eye tears from time to time,especially in the afternoon round 3pm(weird), still dizzy with activity cant wait till that dissapates, met a women @ pt who had a wt in her lid for 9 years she said it was the greatest thing she ever did made me feel more convident with my decision,not sure what to do with returning to work , are you working yet if so how does that work with the dizzies

mimoore

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Re: Frustrated
« Reply #17 on: November 09, 2008, 03:17:19 pm »
Sounds like you are on the right road Bill. I returned to work (kindergarten teacher) at 12 weeks post op. I really pushed myself, in hidesight is was a bit too soon but I needed to get out of the house... I was getting depressed just sitting around waiting for my facial nerve to recover. Looking in the mirror every 10 minutes was getting me no where. Anyway if I feel a bit dizzy I sit down for a minute, catch my breath and try to move on. It is getting tons tons better. I'm sure you will too.
Michelle  ;D
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

leapyrtwins

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Re: Frustrated
« Reply #18 on: November 09, 2008, 08:44:19 pm »
My husband told me yesterday that if the economy doesn't get any better, he's going to have to steal my BAHA abuttment while I'm sleeping so he can pay some bills.   :o

Lori

Lori -

tell James he'll have a hard time removing that abutment.

I read somewhere recently that once your abutment calcifies (which typically takes about 3 months) it's impossible to remove it from the skull without actually cutting it out of the bone that surrounds it.   So if you hear any loud sounds during the night - you know, like power tools - you might want to move really fast  ;)

Reading that kind of creeped me out, but it did erase my fears that something pulling on my abutment might just dislodge it  ::)  Guess that's something I don't need to stress too much about.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

calimama

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Re: Frustrated
« Reply #19 on: November 10, 2008, 02:15:16 pm »
Hey Michelle.... wow you sure are having a lot of follow up! Either  my docs are slack, or  i am. I have not had an EMG test or anything. I saw one of the surgeons in early September and complained of double vision and paralysis (otherwise great) and he said come back at 6 months. I am supposed to have a hearing test, but don't expect to hearing anything! Just figure i might as well be officially diagnosed SSD. I figure at that next meeting i will enquire about whether i should start with facial therapy (and might get the name of your therapist if they don't give me one, or i don't like them).

I agree that sitting in front of the mirror, or checking it every 10 mintues can be depressing and totally unproductive. So glad you got back to work and trust those little kiddes make you smile a lot.

My double vision has totally recovered now, so it just goes to show that just because you don't see the nerves healing doesn't mean it isn't happening behind the scenes. I had no sense of improvement at 3 months, but between about 3.5-4.5 months it really started to fix and now i am back to seeing straight! thank my lucky stars!

Trish
Left 2.9cm CP Angle AN discovered Jan 2008. Retrosig surgery June 2, 2008 Toronto, Canada. Facial paralysis and numbness, double vision (4th nerve), SSD. DV totally recovered in 4th month; palsy started to recover slowly around month 7. Had twin boys 13 months after surgery. Doing great.

mimoore

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Re: Frustrated
« Reply #20 on: November 10, 2008, 08:29:49 pm »
I am so happy for your Trish. I cannot imagine dealing with DV on top of facial paralysis and SSD. Really who is kidding who you deal with whatever you are dealt don't you. Some where someones says we are stronger in the end right? Heres hoping. Anyway Joanne is at Sunnybrook in Toronto and she is really quite nice and seems to know her stuff. I see her again in December through Telehealth so I am excited to see how that works. I have a tiny tiny bit of movement and the exercises have helped to relax things. I really like how you said although we might not see things going on things may be happening behind the scenes. My eye just started to tear last Monday, still doesn't blink so evaporation is a problem but slow and steady wins the race and right now facial recovery is SLOW. I need to stop being mad at my GP, I keep thinking if he would have discovered this sooner when I started to complain 8 yrs or more ago my AN could have been discovered and I may have not had to deal with all of this. I understand that paralysis is not as common if your AN is small. I am harbouring an unhealthy emotion and I need to move on but some days I am upset.
Blah blah blah I am talking to myself now, I need to go to bed long day. Good night. Oh Trish I am here for you PM me anytime for more information.
Michelle  ;D
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

bltfollis

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Re: Frustrated
« Reply #21 on: November 13, 2008, 08:09:01 pm »
michelle, my an was very small but very active and guess what I thought the same thing, surgeon even said its so small the your facial nerve wont be a problem here i am 4 mos later, the man with the melting face, i guess my days of chipndale modeling are over

yours in health bill

mimoore

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Re: Frustrated
« Reply #22 on: November 13, 2008, 08:13:11 pm »
Bill I won't lie some days are very hard and today I feel great... life goes on.. enjoy it we are here. It will get easier and things do improve. Take care Michelle  ;D
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

calimama

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Re: Frustrated
« Reply #23 on: November 13, 2008, 08:42:17 pm »
Hi Michelle

Glad to find that those little nerves of yours are doing their thing, however slow, and showing you that they are, in their own special ways. You are on your way baby.

I did share your frustration, as i am sure many here do... I also complained of hearing loss and tinnitus 3 years before my diagnosis. I have managed to get past this anger as I really like my GP and she was so nice after she found out, supportive and encouraged me to have surgery, which i am still glad i did. I also think that things happen for a reason, and who knows maybe things would not have turned out "so well" in my life these past three years (marriage, baby, being 5 months post surgery and doing well). I have put that part of this whole experience behind me and just as well, it would be a waste of energy and head space. I wish you peace on this.

I am getting some new eye glasses to celebrate the end of my DV and return to the world of seeing the world with both eyes open.   :)  I don't need glasses to see (mild prescrition only for distance) but figure they protect my eye a bit physically, and distracted from my facial issues too.

Hang in there and thanks. You too Bill ! :D
Left 2.9cm CP Angle AN discovered Jan 2008. Retrosig surgery June 2, 2008 Toronto, Canada. Facial paralysis and numbness, double vision (4th nerve), SSD. DV totally recovered in 4th month; palsy started to recover slowly around month 7. Had twin boys 13 months after surgery. Doing great.

bltfollis

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Re: Frustrated
« Reply #24 on: November 13, 2008, 08:43:12 pm »
thanks michelle you seem to always have a kind word and upbeat attitiude i appreciate that

thanks bill :)

bltfollis

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Re: Frustrated
« Reply #25 on: November 13, 2008, 08:50:50 pm »
thanks calimamma , i never thought in a million years that i would ever be on a chat site, but you know what there are alot of nice people willing to share experiences,solutions,emotions and time  who knew? you know what i think makes this problematic for me is despite the dizzies and the melting face, is that i am an icu nurse at a large university hosp in philadelphia, it sucks being on the other end of healthcare, but when i get back to work my hopes is to use my experiences good and bad a become a better nurse becauseof it

thanks for the ear bill

mimoore

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Re: Frustrated
« Reply #26 on: November 14, 2008, 07:59:46 am »
Wow Bill, when you return to work you will have such a great understanding for how a patient feels. I am sure you were an awesome nurse before this but this experience can make you an even  GREATER nurse. You will have walked the mile... that is a gift.
Sending healing vibes your way Bill.
Push yourself a LITTLE each day and before you know it you will look back and say "I really am amazing, look how far I have come". Be strong .
Michelle  ;)
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

Cheryl R

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Re: Frustrated
« Reply #27 on: November 14, 2008, 09:04:47 am »
Bill, I am now a retired nurse since this past spring but have NF2 so have had more than one surgery and back to work in 2 months.      Both times I had facial paralysis also and it was a rare patient who mentioned it.       One old guy asked how long I had had it as a way of asking about it.        More older patients were happy to find someone with a hearing problem if I had to mention I had a problem due to how someone talked.   I  understood what it was like as many had a hearing problem also.         
After going thru this,one does understand more how a patient may feel esp if they have a chronic health issue.                 My favorite pt was a lady my age with end stage liver disease and she was always happy when I took care of her.        She was trying to improve to get a transplant but did not and died.          Very sad.
     Good luck with your continued recovery,                     Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

bltfollis

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Re: Frustrated
« Reply #28 on: November 14, 2008, 04:46:44 pm »
thanks michelle thanks cheryl good to hear from you this morning, bad dizzie day, pulled out cupcake and lit the candle for my own private pity party, went to rehab later felt better( dont know what i would have done w/o my therapist susan) now feeling better  but thanks for the positive vibs they really help blue out the candle partys over!!! back to healing and living

bill

 


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