Author Topic: 41/2 mo Post Op,,,  (Read 5834 times)

Danny2006

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41/2 mo Post Op,,,
« on: October 22, 2006, 11:55:38 am »
HI Everyone,

I am not an avid user as I was pre Op, but I do like to let everyone know from time to time how I am doing. It has been about 4.5 mo. since Middle Fossa surgery at HEI in LA. I am happy to announce that about 3 weeks ago my eye started to close all the way, not a tight close, but a close just the same. I am very happy about this. It still doesn’t tear, so it still burns and hurts, but again, it closes...
I still have terrible headaches, and of course the 50%+ loss of hearing in L ear with really loud tinnitus. And Pretty severe balance problems, at least severe enough that I don't trust myself to walk without a Cane or close walls to hold on to. I don't know how things are going to turn out, sometimes I allow myself to get down and depressed, but I try to avoid that as much as possible. I think worrying about my future is my biggest problem. I don’t know if I will be able to work, I get worn out very easily, and am on morphine or along with other drugs all the time, with no estimated date to be off them.
Is anyone else out there in any similar situation, or have been in one? If so, let me know what you think...
Thanks For Lisiting,
Danny
10mmx8mm AN (facial nerve neuroma) found Feb. 06
Surgery at House Clinic on 02June06,

nancyann

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Re: 41/2 mo Post Op,,,
« Reply #1 on: October 22, 2006, 12:15:26 pm »
hi Danny - I know how you're feeling.  Luckily I don't get headaches anymore (4 months postop), I could never use opioids (morphine, etc) as I get really sick from it, so in the beginning I thought I'd die from postop headaches.   I never used a walker or cane when I was discharged from the hospital.  I can tell you the more you walk the better - I'm starting balance therapy next Wed.  because I'm still unbalanced, esp. when I'm more fatigued.    It's a great sign that you can close your eyelid - I have right facial paralysis & had to have the gold weight put in and lateral tarsel strip, so now if I close my eyes real hard my right eyelid closes.   The tinnitus is really bad for me - it was before surgery and is still a constant noise, otherwise total hearing loss right side.   Believe me, I get depressed, in fact, about an hour ago after getting off the phone with my mom I was crying my eyes out (only the left eye tears).   I do feel better after a good cry, thank God the crying spells are getting fewer.    The fatigue is awful.  I went back to work 2 months post op (I probably could have waited the way I felt), worked 3 days a week the first 2 weeks then it's been full time, & boy am I wiped out when I get home.    I feel the more you do the better, more walking, etc.   I'd check with your dr. about the morphine & stuff, I know it will be scary for you to lower the dose, but I think the sooner the better.   Take care Danny,     Nancy   PS: I use Refresh lubricant for my eye (drops don't do the trick, I was using Systane which is a good eyedrop)at least 5 times a day, which is alot less then immediately post op.
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

BB

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Re: 41/2 mo Post Op,,,
« Reply #2 on: October 22, 2006, 11:56:53 pm »
I'M A FOUR MONTH POST OP TOO.  IT SEEMS SOME THINGS GET BETTER, AND THEN SOMETHING  NEW DEVELOPES.  MY HEADACES HAVE IMPOVED A LOT.STILL HAVING BALANCE PROBLEMS, AND VISUAL PROBLEMS WITH DIFFERENT LIGHTING AND COLOR AND PATTERNS ON THE WALL OR FLOOR.  ANYONE WITH THIS PROBLEM?  SPELLING IS VERY BAD ALSO.  JUST CHASING PROBLEMS AROUND. THINGS DO SEEM TO GET BETTER, BUT I DO GET DEPRESSED EASILY ALSO, BUT I HAVE A LOT OF STRESS IN MY LIFE, AND EVERYONE SAYS IT MAKES ALL THESES SYPTOMS WORSE.  I JUST HAD TO USE ADVIL FOR HEADACES.  I GUESS I AM LUCY IN THAT REGARDS.  HOPE YOUR HEADACES GET BETTER SOON.  HANG IN THERE.

Obita

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Re: 41/2 mo Post Op,,,
« Reply #3 on: October 23, 2006, 05:59:54 pm »
Danny:

I am so sorry you are having so much trouble.  Do you still talk to your doctors at House?  Are they aware of the problems you are having?

Good news on the eye!!  Baby steps they say........

Kathy
Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

Battyp

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Re: 41/2 mo Post Op,,,
« Reply #4 on: October 23, 2006, 07:30:26 pm »
Ok my 4 mos postie friends.  I'm 13 mos out and can attest to the fact that it does get better just very very slowly!
I still have balance issue and have not returned to work but part of that is from my trigem nerve damage and speaking problems and the fact I was a teacher.  I'm trying to go back to school to get retrained for something less talky  LOL.  I can remember at 4 mos wondering why I had the surgery.  I still have problems with certain carpet patterns and wall stuff as it makes my head swimmy but I'm able to drive short distances, and am learning how to adapt to what I can handle it just all takes time as frustrating as that is to hear!   
Seemed like at 4 mos I plateued then around 6 mos saw some new changes.  I could work part time but know it would not be without suffering.  I can not handle stress very well and it makes my symptoms a lot worse and me a raving lunatic as I can't cope.  I do better in calm quiet environments, have little tolerance for bs. Still can't do things I used to do and something I know I never will but I'm finding alternatives.  I worry about my future part because I'm single and was hoping to find that someone special but with all my issues doubt that will happen.   You'll feel you are taking two steps forward and three steps back for a while but you just have to keep plugging along!  If the depression gets to be too much then ask your doctor for something to help you.  I know I did and felt a lot better after as I was having adjustment disorder in dealing with the "new" me. 
Know that the old posties are here to help anytime you need to check in!!!  Big Hugs to you guys!

Captain Deb

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Re: 41/2 mo Post Op,,,
« Reply #5 on: October 23, 2006, 07:55:15 pm »
I've had terrible problems with post-op headaches, but I got alot of my balance back before they kicked in because I started walking like a maniac as soon as I could after surgery. I went into surgery as a very athletic person and a 5 mile 3x a week runner, which helped me regain my balance so well.  At 8 weeks, I was walking almost a mile by myself--slowly, but surely.  My headaches got really bad about 6 to 9 months post op, although I did have some pretty bad ones shortly after surgery but they were sporatic.  Danny, I sure would have a long talk with your surgeon about your pain control issues.  Sometimes opioids cause more pain than they relieve, particularly with long term use.  It's called rebound pain.
 
My surgeon ordered a CT scan and an MRI just to rule out a "cryptic CSF leak" to explain my headpain. Didn't find one, though.
I now see a headache specialist at a headache clinic and for the most part am off any pain meds and am on preventative non-narcotic meds with an occaisional Imitrex injection. He diagnosed me with cluster headaches--check out http://www.clusterheadaches.com
Good Luck
Capt Deb 8)
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Danny2006

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Re: 41/2 mo Post Op,,,
« Reply #6 on: October 24, 2006, 10:23:53 pm »
Thanks Everyone for the replys,
It is good not to be alone in this.
I will try to get back in to ANA more often. I need the support I think.....
Thanks Danny
10mmx8mm AN (facial nerve neuroma) found Feb. 06
Surgery at House Clinic on 02June06,

Crazycat

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Re: 41/2 mo Post Op,,,
« Reply #7 on: October 24, 2006, 11:26:57 pm »
Hi Dan,

  Just read through your post. My God! What you're going through!
You say you had a facial nerve neuroma. Did they sever the nerve? It sounds as if you're slowly getting control back so they couldn't have severed it. That's great news though! It's going to take time to feel better.

Please keep in touch,  Paul
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

Jim Scott

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Re: 41/2 mo Post Op,,,
« Reply #8 on: October 25, 2006, 03:21:01 pm »
Danny:

I'm so sorry to read of your ongoing post-op hassles.

I'm also 4½ months post-op (Retrosigmoid surgery) but without the complications you're experiencing.  You certainly have my prayers and wishes for a resolution of your problems.   I only wish that every AN patient could have my (mostly) 'positive' experience and relatively good outcome.   I consider myself extremely blessed.   

Danny, please do not despair...things will get better. How you are today doesn't necessarily mean this is the way you will always be, as other AN patients can verify.  As you must already know by now, many post-op complications do resolve themselves and/or can be overcome.  Try to maintain a 'fighting' attitude and don't succumb to despair, much less, depression.  That will not get you where you want to be.

I truly wish you the very best for the future.   

Please stay in touch.


Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

nancyann

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Re: 41/2 mo Post Op,,,
« Reply #9 on: October 25, 2006, 04:40:41 pm »
hi Danny - alot of us seemed to have gone thru this 4 1/2 months ago!    I just got back from Balance Therapy, my 1st session.  I have right facial paralysis, & 1 month after AN surgery had a gold weight put in along with lateral tarsal slip.  my eye doesn't close all the way even with this, but it is a great improvement from how it looked before.   I am going to start Acupuncture and laser treatment for the facial paralysis while waiting for a repeat EMG in January -  what can it hurt except my pocketbook?  Luckily, even with all this I was able to get back to work 2 months post op - I really pushed myself (like Capt. Deb) with the walking, etc.   
Keep the faith!!!  Nancy
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

marjoryb

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Re: 41/2 mo Post Op,,,
« Reply #10 on: October 30, 2006, 07:00:34 am »
I'm just about 4 months post - op and have many of the same symptoms.   I can now shut my left eye but not independent of my right eye and the left eye does not produce tears so I'm constantly putting in eye drops and eye lubricant.   When I'm at home, I put a piece of saran wrap over my eye after I've put in the drops and lubricant and that makes it feel normal - not pretty, but it is soothing. 

My balance is OK .  I was a daily walker and ran 2 or 3 times a week and used to run in 5K and 10K races before surgery.     I have not resumed running - I'm afraid I would tip over, but I do walk every day. 

My head still feels like a block of wood - and sometimes I feel like I'm wearing a swim cap that is tightening around my skull - especially around the back of my neck.   I started working out again just a little and playing golf about once a week - to help with balance and just to stay in shape.   After exercise, I definitely feel like the muscles are tighter. 

My biggest problem is headaches - killer headaches.   On a scale of 1 - 10, they're 12s.    I have them mostly at night.    I spoke to my neurologist and he told me to take Advil or Motrin.   Now I'm popping those little pills about every two hours.  The pain in less intense, but I'm still dealing with headaches more than I want.   I'm scheduled to see the doctor in a couple weeks.      I started this whole process because I was getting intense headaches when I did push ups or any other exercise where my head was in a down position.     I went for an MRI and that's when they discovered I had an acoustic neuroma.    I didn't know that I would end up with headaches - worse than what I started with and more often!!
In connection with the headaches, it hurts to sneeze and to cough.

I'm hoping everything is in healing mode and that as time goes by, everything will improve.   Thanks for sharing your post-op results - at least I know I'm not alone.

Marjory B

Dealy

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Re: 41/2 mo Post Op,,,
« Reply #11 on: October 30, 2006, 08:04:32 am »
Danny-2006. You know I had Tr5ans_lab 17 years ago for a 1.5 CM. I look back now and say. Man there was nobody to talk to like me. No web rings etc. Well I can feel your pain because I struggled for up to a year to get back to normal. Even thought my deaf ear could hear again but it could not. Boy did I feel depressed an down. Yes you will get better-Hang in there. Our society is a quick fix and we want things now-With these AN's you have to be patient. I just got done with radiation for a AN in my right ear-17 years later which makes me an NF2. Can hardly hear-but hey I can still function and walk and talk and see. Just not hear. Hang in with us on this group. Trust me-you will be fine-Have patience. Will be thinking of you alot_Ron

Zanybrainy

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Re: 41/2 mo Post Op,,,
« Reply #12 on: October 30, 2006, 09:15:28 am »
Danny, I would definitely ask your doctor about vestibular training.  I started a week after surgery and continued for four months.  I feel pretty much normal now.  There are still situations where it  creeps up, dark movie theaters and I was recently hiking next to moving water and about a five foot drop and I had to get down and crawl. That was more excitement then I have had in a long time.  Anyway, the therapy helps a bunch.  Try to look forward and know that your symptons will get better in time.  Cath
Retrosigmoid, January 24, 2005
4 cm "stuck" to brainstem
Memorial Hospital, Colorado Springs