Author Topic: Onemonth Post- Op  (Read 4694 times)

wwalker

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Onemonth Post- Op
« on: October 27, 2006, 09:52:50 am »
Well, it’s about one month into my less-than-excellent adventure.  I still may not have turned the corner on recovery from my surgery, but I do think I have at least hit the bottom.

I did hit a major milestone this week.  I can actually read and have both eyes focus on the same page. One of the major post-surgery hassles has been severe double vision.  I was really getting tired of being able to do nothing but watch TV all day long.  I still have some lingering problems that are improving, and it’s damn frustrating to have to use a walker while my sense of balance comes back.  I also haven’t been very eager to hold long phone conversations, since the left side of my mouth still feels like it’s halfway recovered from a large dose of Novocain. 

For those who want the details, here’s a quick summary of the last month.  I went in for the acoustic neuroma surgery on Wednesday, September 20.  The retrosigmoid surgery took nine hours, and was successful in removing the tumor without doing any permanent damage to the other nerves in the neighborhood.  Going in to the surgery, I knew that retaining my remaining useful left-side hearing was only a 50/50 proposition, and it looks like I lost the coin flip.  I haven’t heard anything from the left side other than some unusual electrical noises, so I am now permanently deaf in the left ear.

After surgery, I spent two days in the ICU, which I guess is about standard for anyone who has their head cut open.  I expected a number of post-surgical problems, but  I don’t think I was prepared for the severity of the problems.  My left eye-lid would not fully close, so it got taped shut so that the eyeball wouldn’t dry out.   This wasn’t too much of a handicap, sine the left and right eyes were acting independently.  What my right eye saw in its normal position, my left eye saw a couple of feet to the left and below.  It has taken a full month for normal vision to return.

The second major problem is balance.  Immediately after the surgery, I could barely sit up in bed without falling over.  With a walker and some help from my wife and the physical therapists, I can now get around OK, but I still don’t balance well enough to walk without assistance.

The other post-surgery problems were my mouth and left hand. I have gotten to the point where I can drink from a glass and get most of the liquid into my mouth instead of down my face, like during the first couple of days.  My left hand and arm started out very weak, but have now almost improved to the normal level of uselessness for a right-handed person.

After two days in the ICU, and three days in a regular hospital room, they sent me home on a Monday afternoon.  I had been led to believe that the five days in the hospital would get me through the bad balance problem.  Wrong assumption.  I had a friend come to the house and install a pair of grab bars in the throne room, and added a grab bar and hand-held shower head so that I could take care of the basics with some assistance from my wife.

On Tuesday, I had an appointment with an eye doctor.  While waiting in the office, I broke out in a cold sweat and passed out in a chair.  My wife and her dad got me loaded back into the car, and took me back to the hospital emergency room.  Of course, I was feeling OK by the time we got there.  I got the full ER treatment.  I think the only thing they may not have tested me for was beriberi. I got checked into the hospital for the night.  By the next morning, the doctors concluded that they had no idea of what might have caused my fainting spell, and sent me home again.

On Thursday, I had another momentary fainting spell while in the shower.  I just nodded off and leaned against the side of the stall.  My wife started calling the doctors, who decided that I should see my regular physician, even though he had had no involvement in any of the recent activities.  He ended up sending me back to the hospital for another CT scan, which was also negative.

Got to spend another day at home, interrupted by my first visit from the physical therapist.

I woke up on Saturday morning with a leaking head.  This was two bad things at once.  First, my head was leaking cerebral spinal fluid (CSF), which is usually not a good thing.  Secondly, it was Saturday so my surgeon and the assisting neurosurgeon were both out of town.  After finally getting routed to the hospital’s on-call neurosurgeon, I was directed to get back to the ER, and get checked in to the hospital. About all the hospital did was put some cotton gauze over the leak, and wait for my doctor to get back to town.  When he did return on Sunday evening, the doctor decided that the original stitches were inadequate, and I needed to get another set of heavy duty stitches added to my incision.

First thing Monday morning, I was wheeled back to pre-op, and doped up for the new sutures.  I spent all day Monday in the hospital, and got sent home Tuesday morning after my head passed the overnight leak test.

Since the final escape from the hospital, I’ve continued to see a number of doctors and therapist.  The consensus is that all my problems will go away with a little more time and some therapy.  The stitches have all been removed, and I’m done with the post-op medications. 

I’ll provide another update in a couple of weeks.  The temporary conditions all seem to be moving in the right direction, but recovery sure is slow.

Wayne
!.5 cm left-side AN
Retrosigmoid surgery 9-20-06
Dr. Karl Horn and Dr. Andrew Metzger
Presbyterian Hospital, Albuquerque

Dealy

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Re: Onemonth Post- Op
« Reply #1 on: October 27, 2006, 10:48:06 am »
I had a 1.5 CM removed back in 1988. Your surgery sounds famaliar except I did not have a CFS leak. Surgeon told me it would take 6 months to return to normal. He was right. Balance problems until your right nerve compensates. I was tired constantly and had to go to bed after 4 hours. Rest is essential and necessary. Hoping you will not push yourself too much. Remember-you did not have your tooth pulled. This is major brain surgery. Unfortunately if your read most posts I am back after 17 years. Another tumor on my right ear-I had FSR this past summer in Baltimore, Maryland. Do not make the ignorant mistake I made. I stoped having MRI's even though I saw a ENT every 6 months. Thought it was a waste of money. Figured it was gone and out so I could save some money. Surgeon in KC who did my original surgery in 1988 said MRI's every 5 years. Did I listen-Noooo. Well I paying for that now. Here's hoping you will recover from that booger-now that it is gone. Good luck.

Cheryl R

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Re: Onemonth Post- Op
« Reply #2 on: October 27, 2006, 11:08:19 am »
Hi Wayne,    You really have had a hard time with your recovery.   I hope it continues to improve for you.       With your work ups for the fainting spells were you checked for cardiac problems also?        Do you have any kind of irregular heartbeat or palpitations?     If the spells continue you might suggest to the doctor to wear a monitor to record your heart.   Usually it is just for  24  hr period.     I am assuming a standard EKG was done after your first spell.   Also was your blood pressure checked lying down and then standing up for a possible drop in the pressure.   
              Good luck to you and things will improve.                         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

nancyann

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Re: Onemonth Post- Op
« Reply #3 on: October 27, 2006, 11:43:11 am »
Hi Wayne - I'm 4.5 months post op, & I know the first month was the toughest.   Hang in there, believe it or not, it DOES get better.   If you're still having eye problems (as I do due to the right sided facial paralysis), i recommend Refresh PM eye lubricant, but if you look on the post op sites, you'll find suggestions from lots of others of what works for them.  Everyone is different & have different post op issues.    Wishing you the best, 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
right facial paralysis
good to go.

Gennysmom

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Re: Onemonth Post- Op
« Reply #4 on: October 27, 2006, 12:13:44 pm »
Wayne,

I'm almost 4 months post op, and I would guess your spells were from the CSF getting ready to leak.  I never passed out, but I did have some pretty funny sensations and headaches a few days just before my leak at 2 weeks out.  When I was in with a lumbar drain, the reduced pressure made me really loopy and I was throwing up everywhere.  Increased or decreased CSF pressure does all kinds of crazy things.

Keep pushing walking...the only way to get better is to push yourself further everyday.  Do it whether you like it or not!

As for the drink going down your face....I still prefer straws.  It just makes it easier.  Keep testing if you can use the straw on your AN side, or even in the middle.

Good luck on your recovery!!!! 
3.1cm x 2.0cm x 2.1cm rt AN Translab 7/5/06
CSF leak 7/17/06 fixed by 8 day lumbar drain
Dr. Backous, Virgina Mason Seattle
12/26/07 started wearing TransEar

Cheryl R

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Re: Onemonth Post- Op
« Reply #5 on: October 27, 2006, 12:21:08 pm »
I had a CSF leak also with no symptoms what so ever other than the nose drip.   I was 2 weeks also and then had surgery to repair it and put in more fat.        Think this is probably unusual though.
                                               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

Pembo

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Re: Onemonth Post- Op
« Reply #6 on: October 31, 2006, 11:23:07 am »
Wayne, I woke up with eye problems very similar to what you are describing. They did correct on their own but I had to tape my eye shut at night for 6 months. 2 years later it still doesn't close all the way but I didn't have to have a gold weight. My vision was back to normal in about 3 months or so.

I also was very weak in my AN sided hand. I remember trying to pay the bills about a month after surgery and telling my ot that writing was very labor intensive. This too corrected. My ot had me color with crayons to help regain control, then I started writing the alphabet. It did help. And my kids were amused that my homework was coloring.

I too dribbled out of my mouth...mine was due to lack of sensation. Again, it has improved with time.

As others have said, balance does work itself out and hopefully soon you'll find yourself attempting short walks without the walker.

TIME and PATIENCE are the keys to an recovery and I'm a very impatient person. But at almost 2 1/2 yrs post op I can tell you that things do improve, oh so slowly, but they improve.

Stay strong.........
Surgery June 3, 2004, University Hospitals Cleveland, BAHA received in 2005, Facial Therapy at UPMC 2006

Gennysmom

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Re: Onemonth Post- Op
« Reply #7 on: October 31, 2006, 12:42:20 pm »
Cheryl, I feel for you, I was about an hour out of them going back in to pack more fat when I showed them that I wasn't leaking anymore.  I was so wiped from 8 days on a lumbar drain that I just couldn't face another surgery.  I'm glad I didn't have to, sorry you did.  Been holding my fluid ever since, knock on wood.  The two days before I noticed the leak I got throbbing headaches whenever I ate anything more than a couple bites and I was lightheaded. 

I agree with you that recovery does seem slow....in the age of years just flying by, I'm having a hard time dealing with long days of being my funky self.  Most days, I'm OK with that, some days I get really grumpy about it.  I don't want to wish my days away, but I sure wish I was further along....although compared to what others have had to endure, I'll take it.  As long as I can wallow in self pity some days just to get that over with and move on ;)
3.1cm x 2.0cm x 2.1cm rt AN Translab 7/5/06
CSF leak 7/17/06 fixed by 8 day lumbar drain
Dr. Backous, Virgina Mason Seattle
12/26/07 started wearing TransEar

HeadCase2

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Re: Onemonth Post- Op
« Reply #8 on: October 31, 2006, 03:09:03 pm »
Hello Wayne,
  My AN was about the same size as yours.  Know that at 1 month things are still healing and will improve.  Probably not at the pace you would like to see, but they will improve.  I know it's tough, but try to walk more each day, as Gennysmom mentioned.  I found that if I over did it a bit during recovery, I just needed to take a nap.
  I was just in Albuquerque over the last weekend.  And was also in Santa Fe and Taos.  So if you live in NM, I know you have some of the most incredibly great terrain to hike in.  Outside of Taos, I was able to see the Milky way like I haven't seen it on the east coast for a long long time.
Regards,
 Rob
1.5 X 1.0 cm AN- left side
Retrosigmoid 2/9/06
Duke Univ. Hospital

GrogMeister of the PBW

Battyp

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Re: Onemonth Post- Op
« Reply #9 on: November 01, 2006, 12:27:58 pm »
Wow what a story...you started out describing mine!  I will tell you that all sounds pretty much just like what I went through with my retro except the csf leak.  Don't give up on the hearing yet as about 6 mos post up I had some return.  the day before I had an audiogram that showed I was stone deaf on my an side (I lost all my hearing before surgery) that night I had this terrible ear pain that lasted a few minutes and I realized I could hear a tiny bit.  I can hear a  dial tone on that ear if the volume is up and the room is quiet.  Since you had more to begin with lets hope for the best!

Unf. it just takes time.  I am walking without a walker (could barely dress myself in the beginning) My eyes took longer to refocus than yours did as I was two month out before I could even sit up long enough to turn on the computer.  So just keep working at it and it will get there!  Keep us posted on how you're doing  ;D

carlwhiffen

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Re: Onemonth Post- Op
« Reply #10 on: November 10, 2006, 04:46:30 pm »
I had a CSF leak also with no symptoms what so ever other than the nose drip.   I was 2 weeks also and then had surgery to repair it and put in more fat.        Think this is probably unusual though.
                                               Cheryl R.
HI Im carl from the united kingdom. I had a 5cm acoustic on my left side and opted for surgery. I then had a further 3 CSF leaks and repair. I also contracted bacterial menegitis and was on life support for 5 days with liver and kidney failure. I woke up and two days later i got hdyocephalus and had a shunt put in on the right side of my head.I have only slight facial palsy and i taste salt 24hrs a day on my left side of my mouth. A few banace problems but nothing i cannot handle. Otherwise im still alive and kicking. Im now 42 i had my ops in 2002. I have a very special guardian angel. Ive lost my  hearing on my left side but it has its advantages sometimes. Both my right and left legs were cut open from my hips to my kness for all that lovely fat. I dont get headaches. im back to normal as far as possible except for minor memory problems etc. Take care CARL