Author Topic: is this norma?l  (Read 3206 times)

satman

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is this norma?l
« on: June 10, 2007, 12:27:13 pm »
hi everybody newbie here.
i am 41 yrs old had a lemon size an and doc said i would have been in a casket in 6 months if i didnt have surgery so as of today i am 2 months and 1  day off of the table,it was a 17hr surgery and my question is should i still be using this walker,also i have to put this gel on left eye yet it closes most the way just not completley,how long do i have to keep gelling?its weird having people wait on your every need,thats getting old ! just have a mild droop on left side lip,drink from a straw or i wear it,eating tends to be very messy,and my face feels numb,on top off all that i talk funny,and permanently deaf in left ear.does all this sound normal,how long does it take to get strength back in knees  and legs,just to walk again?does it sound normal?                   
 
                               thanks every body,kind of venting,sorry
                                                            john........ 
kicked my little 8cm buddy to the curb-c ya !

Jim Scott

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Re: is this norma?l
« Reply #1 on: June 10, 2007, 02:08:17 pm »
Hi, satman:

Sorry to read of your post-op complications - but welcome to the forum.

There really isn'tany definite time-frame for healing from major surgery.  However, being just 2 months out of surgery means that you are far from totally healed.  Every AN 'postie' (post-surgical) patient has a different experience, as you can see from reading some of the posts on this and the other AN forums.  Some patients come out of surgery with few (if any) problems while others have a multitude of issues to deal with. Your level of hearing loss pre-surgery, the placement of the tumor, the surgeon's skill and other factors all go into the final results when you're wheeled out of the operating room.

Unfortunately, with acoustic neuroma tumors, post-op facial paralysis is a not-uncommon complication.  It often resolves itself in time - but not always.  Nerve grafts are a possible option, as is physical therapy. Your one-sided deafness is very likely permanent, as this is an almost unavoidable issue with AN surgery. 

Frankly, most of your questions really should be addressed to your doctor, especially relating to your lack of strength in your knees and legs as well as when you can stop using the eye gel.  If you could let us know what kind of surgery you had (there are 3 approaches most surgeons use) that would help.  We aren't physicians but we can offer practical advice if we have enough informatiion from you.

No need to apologize for venting.  That's one of the reasons these forums exist - and we've all 'been there', to some extent.  Stay in touch.  We all want to know how you're doing.

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.

neal r. lyons

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Re: is this norma?l
« Reply #2 on: June 10, 2007, 10:35:01 pm »
I'M FAIRLY NEW HERE TOO, BUT FROM YOUR DESCRIPTION OF YOUR TUMOR SIZE AND THE LENGTH OF THE SURGERY(17 HRS!) YOU'VE GOT PLENTY OF VENTING ROOM!  HOPING YOUR POST -OP PROBLEMS WILL IMPROVE WITH TIME!  HANG IN THERE!  NEAL
     
AN 2.6X2.0X2.8 (right side)                                           June 22, 2007
House Ear Clinic/St. Vincent's Hospital@ Los Angeles, Ca.

Translabyrinthine(5 1/2 hr.):  Dr.Brackmann-neurotologist    Dr.Schwartz-neurosurgeon    Dr.Kutz-incision@stitches    Dr.Stefan-internist

Crazycat

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Re: is this norma?l
« Reply #3 on: June 10, 2007, 11:32:15 pm »
Satman,

    Yes it is "normal" for what you went through. In fact, your condition sounds a great deal like mine was. I was hit really bad as well. I couldn't go any longer with the size growth I had. I had a seperate surgery for a shunt installation one month before the tumor surgery. I had hydrocephalus really bad.
   I was fortunate in that I had no facial paralysis at all. I had no eyelid difficulties either, yet they had me putting that ointment in my eye every night for a while. The left side of my face is still a bit numb but much better than what it was just after surgery. I had to drink through a straw for months afterward. I don't have to anymore. When I was in the hospital, my face was so messed up and numb, I had to be spoon-fed for two weeks.  The hearing in your ear will never return because the nerve has been taken out.
   As far as walking is concerned, just try to do a little every day until you build the strength back up. Are you getting any physical therapy? You should.
   Before I got really stricken by this thing, I was an avid jogger - I still am. I was running 5 miles a day up until I started to lose my equilibrium until the distance gradually shortened during the last year to the point where I could barely take a step. By the time I got out of the hospital after three weeks, I was severly weakened. I remember trying to take a walk around the block with my girlfriend the day I came home from the hospital and not being able to make it. My leg muscles were so sore from that first walk I took that I was laid-up for several days after, waiting for the traumatized muscles in my legs to heal up again. I'm back to doing what I used to before getting sick.
   Balance was and still is an issue as is double vision. But my core strength is good and that is what grounds me and keeps me going. I have good days and bad days. Fatigue is another problem that you will most likely be dogged with during your recovery. There will be problems - like the deafness - that will never leave you. Other problems such as balance and numbess, may gradually improve to the point that you don't notice them and they don't really bother you, although they never entirely heal or go away.  
   One of the keys to recovery is to try to stay strong. Do what you can to keep in shape after you regain enough strength and stamina to start to be active again. You can do it. For one thing, you're only 41 right now.

  Being two months out from surgery, you still have a lot of healing to do. I was wondering, what were the dimensions of your growth and what hospital were you treated in?
  Just for curiosity sake, here's a link to an old post of my MRI scans from the archives:  

http://anausa.org/forum/index.php?topic=1257.msg12861#msg12861

     Take care and keep the faith!          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.

Kathleen_Mc

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Re: is this norma?l
« Reply #4 on: June 11, 2007, 02:07:27 am »
John: I had all the "side effects" you're having except the wal;king difficulty.....yup all sounds like "normal recovery" to me. The way my sergoen put it....it took a long time to grow, a long time to remove and it will take a long time to recover. I talked funny until after a few of the plastic repairs I had done, used the straw for about a year (everyone laughs when you poke a straw in a coffee cup don't they?) and to this day I drool sometimes. I taped my eye shut for months and still use gel and drops to this day (or I'm supposed to but I'm not that compliant with doctor's orders), it doesn't blink  as the other does, maybe about half the time. John, be patient with yourself and push yourself ever so slightly, doing too much will cause set backs. Be kind to yourself, I started to think of it as recovering from dead as I too had very little time to live without surgery when the tumor was found and only 50% chance of getting off the table alive, acept what you can't do YET and work towards it.
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

Pembo

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Re: is this norma?l
« Reply #5 on: June 11, 2007, 07:50:45 am »
Normal sounding to me John. I remember trying to walk short distances in the house without the walker.
As for the eye, I was using the gel for 2 years until I tried Restasis and I haven't used it since. Everything will get better with time and patience is the word I learned to loathe the most but you have to look back to see how far you've come. You have entered a "new normal" and it will take time to adjust to. Best of luck to you.......and welcome to our elite club. ;)
Surgery June 3, 2004, University Hospitals Cleveland, BAHA received in 2005, Facial Therapy at UPMC 2006

satman

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Re: is this norma?l
« Reply #6 on: June 11, 2007, 02:08:45 pm »
thanks for all the replies,you guys are great.not sure what the exact dimensions were,all they compared it to was the size of a lemon which freaked me out bad,i had it removed 98% ,i think the rest were wrapped around the nerve and could'nt be removed without really bad nerve damage,had it removed at plano presbetarian hospital,plano is a suburb of dallas tx,surgeons name is dr.chang  charles chang is his full name,and not sure what they call the type of removal process but they went in behind my left ear,sorrry for the lack of info,i was rushed in in an ambulance and didnt have a chance for a lot of questions. i am amazed at how fast one's life can change.thanks so much everybody,you guys are helping me get through this,unfotunateley it's not over after the surgery.just left another dr.office, emg test are so fun,the nerves are not responding so a week from tuesday i find out if i get some 12 to 7 surgery,something else to worry about.

                             thanks,
                                         john ....     
kicked my little 8cm buddy to the curb-c ya !

Kathleen_Mc

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Re: is this norma?l
« Reply #7 on: June 11, 2007, 02:22:14 pm »
Jhn: the 7-12 surgery is not much to worry about, compairative to the initial surgery it's a walk in the park.
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

kss4luck

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Re: is this norma?l
« Reply #8 on: June 11, 2007, 03:53:30 pm »
I was told the rule of thumb is 1 week recuperation for each hour of surgery, and that's without complications. sounds like your doing very well. Take care , rest rest and then rest I'll keep you in my prayers
Cindy

er

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Re: is this norma?l
« Reply #9 on: June 11, 2007, 04:13:17 pm »
satman

Hi, wow, you want through alot. My prayers and thoughts are with. My AN was only 9mm, and only 7 hours. Same side affects except I was able to walk when they let me. I just had to take it slow and not run into anything, balance issue.
Just be patient and healing will come.
eve