Author Topic: Does anyone have any great news?  (Read 10197 times)

CatzEyes

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Re: Does anyone have any great news?
« Reply #15 on: November 15, 2014, 11:28:23 am »
By now you may be getting close to surgery, Warr76, and if you're anything like me, nervous wouldn't half describe it!

Like Pharm925 (hi there!) and littleowl, I had middle fossa surgery on May 13th of this year, so I'm now exactly six months post-op. If my doctors and physical therapist asked me today how close to 100% I feel I am, I'd say 95%. Dr Delashaw and Dr Bachous at Swedish Medical did a superb job: I have retained almost all hearing in my right ear, only tailing off a little in the high end; the facial issues wore off within four to six weeks (and they were no big deal). True dizziness didn't last long -- my blurred vision just 'snapped back' on the second day in ICU, and the icky feeling pretty much went away once the took the lumbar drain out. I didn't go straight home from the hospital, but stayed in a hotel around the corner from our house for five nights, mostly because our cats shed like mad and I feared infection until the incision pretty well healed over. (Bless those hotel maids and daily fresh pillowcases!)

I worked hard at the balance exercises all summer, and it made a huge difference. I was back at work part-time about a month after surgery, driving confidently at six weeks, working in my garden (no heavy lifting) in July, all the while taking long walks with lots of head-swings and generally trying to tone myself up. We had arranged to video a family wedding in the first weekend of August -- and it went off just fine. Even bigger deal was a three-week video/photo shoot in England and Scotland around Labor Day -- and I was able to climb walls, focus the camera, and generally dash around, even driving long long days. Yes I was pretty darn tired by the end of it but I bet I would have been worn out anyway! (I'm 57, BTW.)

I'm now doing intensive weight training to build up muscle mass, and try forcing myself out in the rainy PacNW weather to keep up the walking. I really do believe this is a use-it-or-lose-it proposition. When I slacked off with a bad headcold for a couple of weeks, I could tell I was less stable in the dark...

Best of luck to you, and be sure to check in and let us know how everything went!
Laura
Middle Fossa surgery at Swedish, Seattle, Drs Delashaw and Bacchus, 5/5/14. Retained 98% hearing in surgical ear after 6 months recovery time.
diagnosed 3/15/14 :: 6mm x 4mm x 3mm AN in right ear.
mother diagnosed 3/2005 8mm; gamma knife 2007 at 14mm. some regrowth, pressing balance nerve, by 2012

joyce04

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Re: Does anyone have any great news?
« Reply #16 on: November 15, 2014, 01:46:11 pm »
I have an appt at NYU- am hoping to get a gamma recommendation ! Doe it depend on age? Size of tumor, placement??
Just curious..
Grace under pressure...

michelej

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Re: Does anyone have any great news?
« Reply #17 on: November 15, 2014, 07:40:52 pm »
I had a translab surgery in Iowa City by Dr. Gantz. He is excellent. I went back to work in four weeks (transcriptionist). My balance is better than it was before with the tumor but I do notice I am more off balance in the dark. I had lost most of my hearing in one ear due to being not diagnosed three years previously. I do have a dry eye on the tumor side and less saliva than before but that is pretty much it. Of course except for the fact I have SSD. I had my implant for the BAHA about a month ago and that was a piece of cake. I will get the actual processor in a couple of months. I was one of the lucky ones I guess. I feel great. Good luck to you.

NYLady

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Re: Does anyone have any great news?
« Reply #18 on: November 16, 2014, 08:54:59 am »
Hello Joyce...

I had Gamma Knife at NYU with Dr. Golfinos and Dr. Rush.  I was referred to
Dr. G by Dr. Roland to discuss options. 

I can only speak from my personal experience, but I believe whoever you see will explore all the options available to you.  I dont think there are hard and fast rules as to when to recommend Gamma Knife.  Certainly I think age could be a factor if you are very young.  I am 73.  Possibly location of your AN and of course the size.  I can also say with absolute confidence, that whoever you will see at NYU will be excellent.  They are a class act from start to finish. If by chance you do see Dr. Golfinos, he does both Gamma Knife and surgery, so he will give you a very thorough overview of all your options, without prejudice.  He is just great.  Dr. Kondziolka is also part of this group, and is a leader in Gamma Knife.  Rest assured, you are in good hands.
Good luck to you.

NYL

jeninla

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Re: Does anyone have any great news?
« Reply #19 on: November 24, 2014, 09:43:11 am »
I had a 2.0 AN, diagnosed 4 months ago.  I had retro sig surgery 3 months ago and now I'm tumor free, headache free, normal hearing, no balance or facial issues.  I only have minor ringing in my ear after all.  I feel great and most of the time I forget that I had surgery only 3 months ago.  I even forget to check in on the forum.  If you search my posts, you can read about my full story.  I think so many of us who had great results don't post often on the forum, so it is possible to have full recovery!
discovered 2.0 cm 6/2014
retro sig 8/5/2014 with HEI, Schwartz/Slattery
total removal
hearing, facial nerves preserved!
Full recovery with no headaches

Warr76

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Re: Does anyone have any great news?
« Reply #20 on: December 02, 2014, 07:36:19 pm »
Hi
I'm three weeks post op. I'm doing ok. Not driving yet. But I was wondering about how long until I can quit taking these pain meds. I'm only taking ibprophen and Tylenol  generally , but I feel like I should be done by now. Does anyone have thoughts on this. I feel like a wimp because I still feel the need for these every 5 to 6 hours. I get pain when I bend over to pick something up sometimes.
Thank you so much for all of your posts replying to my questions!


1cm removed, Nov. 10, 2014, right side
Some hearing preserved.



ANGuy

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Re: Does anyone have any great news?
« Reply #21 on: December 02, 2014, 08:32:17 pm »
Hi
I'm three weeks post op. I'm doing ok. Not driving yet. But I was wondering about how long until I can quit taking these pain meds. I'm only taking ibprophen and Tylenol  generally , but I feel like I should be done by now. Does anyone have thoughts on this. I feel like a wimp because I still feel the need for these every 5 to 6 hours. I get pain when I bend over to pick something up sometimes.
Thank you so much for all of your posts replying to my questions!


1cm removed, Nov. 10, 2014, right side
Some hearing preserved.

My own, uneducated, no surgical experience, opinion on your use of OTC pain medicine is "don't worry about it".  I think you have an healthy attitude towards them in not wanting to over-use them, but I think they are harmless and effective.  Narcotic pain meds are another matter entirely.  As long as your stomach is fine with them and your Drs. think it's okay, I think tylenol and NSAIDS are fine.  They are not mind-altering or addictive.
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

Seal

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Re: Does anyone have any great news?
« Reply #22 on: December 03, 2014, 06:39:56 pm »
Warr,

I am now nearly six years postoperative.    You seem to be pretty active.    So I am sure you want to maintain your level of activity.    Another positive note is that your size tumor or pretty small, and you probably stand an excellent chance for a great result.    I just re-read and saw that you are post op.  Three weeks is very early.   You will need the ibuprofen for months on and off, but it will continue to improve for months and even longer.     This is normal.    Activity will also help.   Even just daily walking.     Good luck and keep patient.   It all turns out fine in the long run.

SteveK
« Last Edit: December 03, 2014, 06:51:26 pm by Seal »
Diagnosed 1/14/09 - 2.4cm AN right side --- about 70% cycstic
Retrosigmoid wiih McKenna & Barker - total removal successful on April 13th. 
Issues: balance, facial & mouth numbness, hearing loss right side
Results:   numbness gone, balance is good, SSD right side. Great results.