Author Topic: I had my surgery 5/3/2005  (Read 5794 times)

jan pentecost

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I had my surgery 5/3/2005
« on: May 23, 2005, 05:15:23 pm »
I had my AN removed on May 3rd. They thought the surgery (translabyrinth approach) woulod take at least 4 and a half hours......I wentin at noon. The next thing I remember after being put out was seeing a clock that read "4:45PM!!! My surgery took a bit over three hours. It was a text book surgical proceedure and the tumor popped out after being cut. They put a composite filling into the hole in my skull....kind of like a car being bondo'ed.
I didn't get out of bed until the 5th...I think having my balance affected prior to the surgery had already helped compensate in the total loss of my ledt balance nerve. BUT.....walking the first time was ....well, something more difficult than I thought. I did use a walker for that day and the next.....but by Friday night, I was using the walls and the bed to guide me.
I do have left sided facial paralysis BUT...they did nerve conduction tests during surgery and the first thing they told Jerry as I came out of surgery was that my facial nerves are totally intact....but there would be considerable swelling that may take a few weeks to months to subside. I use eyes drops ALOT and a moist and cool washcloth over my eyes at night helps to relieve the stress that build up from having my eye opened all the time. I can close that eye if I think had about it.....but it doesn't blink....that freaks some people out.....so I try to keep my right side towards people.
The incision is directly behind my left ear and is healing quite well....I did have drainage for two weeks but no infection or complications.
I had alot of waves of nausea but no vomiting...and have had dizziness...especially if I try to do too much....  I've taken Phenergan for the nausea and that helps...alot.
I went home the following Sunday on the 8th. I took a moist wash cloth in the car and that helped my eyes.....the ride home....90 miles, was fine for me. We stopped by the pharmacy and I felt better having someone to walk with....for reassurance!!
Other than this damned facial weakness....heck, paralysis since it won't move....my recovery has been really good. I drove for the first time on the 14th. I have been driving since but know when to go and when to stay home. I started back to work on a part time basis on May 19th....although I worked 7 hours both Thurs and Fri. I was really pooped Friday night and was exhausted Saturday....stayed in bed or close by most of the day. On Sunday I started having alot of dizziness and a bit of a headache....but that has subsided somewhat.
I have to pace myself when reading and especially on the computer as my eyes get tired. I have to be careful standing up too quickly or stooping down and coming back up again. I feel a bit unsure if I am walking in a large area and have to focus on where I am walking to help ease some vertigo....
Bottom line for me is that....so far....I have been very fortunate to have had a pretty uneventful post surgical time.
I have to shout kudo's to my surgeon. I know of people around here ( Northwest Oregon)who went to the House Ear Clinic in LA and both of them had complications. I went to Dr. R. Sterling Hodgson in Portland, Oregon. He has done over 400 of these surgeries and did a fantastic job.....The audologist who recommended him to me was the first person who told me I had inner ear hearing loss. I saw him on the 18th for follow up and all he did was prescribe something for sleep......up to that date, I hadn't slept more than three hours and was exhausted. I tried some Ambien but that made me see things that weren't there so I flushed them down the toilet. I am taking Elavil 10mg. at night and I feel so rested.
I have had some depression but I am having relationship problems on top of this so who can say if it is from the surgery.
Well, that's all for now.....I wish the best for all. Thanks for listening...
jan


 
1.7 cm Left Side
May 3, 2005
Dr. R. Sterling Hodgson
Legacy Emaunuel Hospital
Portland, Oregon

RH

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Re: I had my surgery 5/3/2005
« Reply #1 on: May 24, 2005, 12:34:51 am »
Hi Jan,

Welcome to the wonderful world of post-op life! I had my surgery (3cm, right side) just over 12 months ago and reading your account brought back so many memories. Each day holds a new experience, a new way of handling a situation or ways of coping but you sound like you are handling it very well. I can only say it gets better - and having a positive attitude like you do really goes a long way. ;D I can honestly say that time is a great healer - my facial paralasys is still with me but has gradually improved over the past year. My ability to whistle returned after 3 months but I still can't inflate a balloon or drink from a bottle without a little dribbling! I get weird facial spasms every so often, like an involuntary 'Elvis sneer' and I know it is another facial nerve just kicking back to life :-\ So keep doing what you are doing and all the best for the future
RH
I made a diary of my experiences over the past 12 months, check it out at www.geocities.com/an_diary2004
3cm Right Side AN
Removed May 15th 2004
Manchester Royal Infirmary, Manchester, England
by Prof Ramsden

jenifyer

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Re: I had my surgery 5/3/2005
« Reply #2 on: May 24, 2005, 04:36:52 am »
Hi Jan,

I had my surgery may 5th...translab...i feel your pain!  i have facial weakness and a very dry eye as well!  i am going next week to a doctor to see about possibilities for a tear duct plug or a gold weight on my eyelid to help it close.  just know that i am over here on the east coast only a few weeks post op too!
jennifer

kristin

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Re: I had my surgery 5/3/2005
« Reply #3 on: May 24, 2005, 09:27:26 am »
the cool washcloth was a life saver for me after surgery. i took it everywhere! in the car even when it was too bright to open my eyes. i couldn't sleep without it for the first few weeks. now, 6 weeks post op, i just got plugs put in my tear ducts for my dry eyes..life is grand. highly recommended! i almost have too many tears now!! (not complaining one bit!)
8 x 5 mm Left Acoustic Neuroma
Middle Fossa
House Ear Clinic
Dr. Derald Brackmann, Dr. William Hitselberger
April 14, 2005

"I have told you these things, so that in me you may have peace. In this world you will have troubles. But take heart! I have overcome the world." John 16:33

Karen H

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Re: I had my surgery 5/3/2005
« Reply #4 on: May 25, 2005, 05:31:19 pm »
Hi Jan

I am from Central Oregon.  I had an appointment yesterday at OHSU with Dr. Mecmennemey, a neurosurgeon.  I am leaning toward radiosurgery but am wondering where you had your surgery in Portland.

jan pentecost

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Re: I had my surgery 5/3/2005
« Reply #5 on: May 26, 2005, 05:03:42 pm »
Karen,
I had my surgery at Legacy Emanuel in Portland. I am more than pleased with my care all around....especially liked the  anethesiologist (sp)....she called me the night before and helped rest my fears. She was a kick prior to surgery...great sense of humor at the right time. My surgeon...weel, I can't say enough.....knows his business and has dealt with hundreds of Acoustic Neuroma's.
Today is my best day yet....I am 23 post op and am back to work full time, driving like a bat out of hell and am more than glad to explain to people how and  why i can frown AND smile at the same time.....
Today I have really noticed that I am acclimating well to my loss of the left balance nerve ....today I have had little dizziness. Hoping this is a trend!!
Karen, if you ever want to talk, I will email you my cell #!! I am sure it is as hot where you are...more so....as it is here in Seaside!! Stay cool....it's 95 degrees here
jan
1.7 cm Left Side
May 3, 2005
Dr. R. Sterling Hodgson
Legacy Emaunuel Hospital
Portland, Oregon

Karen H

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Re: I had my surgery 5/3/2005
« Reply #6 on: May 26, 2005, 09:11:34 pm »
Hi Jan,   Thanks for the reply.  I have not had very good info from my ENT doc and was only given one referral so I wasn't aware there was someone else in Portland that did a lot of these. 

I am leaning heavily toward goin g to Standford for Cyberknife.

How big was your AN and what type of surgery did you have?  I would like to give you a call sometime and discuss this....I haven't actually talked to anyone that had this done.

my email is khayes@bendcable.com

Not near that hot here in Redmond!  Only about 75 today.!

buickbetty

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Re: I had my surgery 5/3/2005
« Reply #7 on: May 27, 2005, 11:16:48 am »
You are a brave and  wonderful person. I am struck with your fortitude under these circumstances. I need you to send some of it this way!!! I have been diagnosed with AN on both sides as well as a meningia tumor on the brain. Since I am deaf on the left side from Meniere's Disease (labyrinthectomy) anyway, the plans are to do the AN with surgery by  an ENT while a brain surgeon does the meningia removal. I am expected to be in surgery 8 hours at least. This website has done a terrific job of preparing me for a lot of things I was not told by my ENT. He has made light of the facial paralysis probability. From the entries in this website it seems there are a lot more occurrences of that then the 20% chance I was told. I have not spoken with the brain surgeon yet; since it is not AN he won't be able to tell me much about the aftereffects, but I plan to quiz my ENT a lot more. There is no choice but to remove both, but I would have liked to hear things like you have clearly stated. I appreciate it so much! I will be able to know what to expect if the facial paralysis happens and how long it will be until or if it ever subsides. Some of the entries on this website show a very much longer recovery period than I was told (8-12 weeks). Doctors downplay side effects. I don't appreciate it when I am not forwarned. I had a list of questions that the ENT answered but he was so certain of himself, I got the impression that these post surgery occurrences were not that frequent. You have helped me tremendously. Love, buickbetty

Mark

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Re: I had my surgery 5/3/2005
« Reply #8 on: May 27, 2005, 01:00:21 pm »
Hi Karen,

I had Cyberknife at Stanford 3.5 years ago and would be happy to answer any questions you might have. My story along with several others is also posted at the Cyberknife support group site at www.cyberknifesupport.org

take care,

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

Karen H

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Re: I had my surgery 5/3/2005
« Reply #9 on: May 27, 2005, 05:41:54 pm »
Mark,   How big was your AN?  What side effects did you have and for how long and are you glad you chose that option?

Thanks,  Karen

Mark

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Re: I had my surgery 5/3/2005
« Reply #10 on: May 28, 2005, 03:38:23 pm »
Karen,

My AN was right around 2 cm. My only symptom at diagnosis was gradual moderate hearing loss in the high frequency. I am fairly active physically ( running / biking) so I was probably able to compensate for damage to the balance nerve over the years and never noticed anything in that regard. Cyberknife for AN's at Stanford is delivered in 3 fractions of about 1 hour over consecutive days. I did not have any reactions to the treatment although some folks can feel fatigued or nausea. I was back on my bike the weekend after treatment and back at work the next week. I did not have any ( what I would consider)  significant post treatment after effects. Off and on during the first 6 weeks I would have very brief ( 30 second - 1 minute duration) dizzy moments once or twice a day. They weren't disruptive, but noticeable. After about 6 weeks I had a very noticeable vertigo attack with some double vision and room spinning ( like partying way too much the night before) which lasted 2-3 hours. My doctor prescribed a 2 week round of steroids which I only took for 3 or 4 days . Since that point everything has been pretty uneventful. At the first 6 month MRI the AN had shrunk about 20% and it has stayed unchanged over the 3 years since. I have been fortunate that my hearing which was still at very usable level  has remained at pre-treatment levels and I have no facial nerve or balance issues. While FSR has a better track record for preserving hearing with a 2 cm AN than surgery or even one shot Gamma Knife, most people do experience some additional hearing deterioration. So, in answer to your question, I have been very happy with my choice to be treated by the Cyberknife based on my outcome. I know that in any of the surgical procedures I would have lost my hearing and had a higher probability of damage to the facial nerve. Certainly, surgery could not have given me a better result than I have experienced.  Even with the most experienced surgeons such as at House clinic and other places the odds of some sort of deficit or issue seemed higher to me. No surgeon really knows whether they can a) remove it all or b) not impact the facial nerve until they are in  the surgery. There are no guarantees with either choice and as technology improves there are better outcomes with both as well. You just need to reach a point after all your research to determine which you feel gives the best odds for success and hope for the best. Best of luck to you, let me know if I can help with anything else.

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001