Author Topic: Anyone willing to share their experience - surgery after raditation?  (Read 2340 times)

bfoley

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I had Gamma just over 3 years ago - stable for the first 2 years then growth this last MRI.  So I will be having translab approach January 17th at Mayo in Rochester MN - Drs. Link and Neff.

We are all different and our tumors are different, but having radiation, I hear (LOL as a SSD person) makes them more sticky.

I am wondering if you have been through this, did they get all of YOUR tumor?  Do you have any suggestions for preparing for surgery or what you did post surgery?

I am 58, and pretty active now.  I have continuously had balance issues, but work on them daily.  8,000 to 10,000 steps average daily.

I am trying not to freak out, but I had radiation as I never wanted to face surgery.  Now I get to have had both!

Thanks in advance for anyone willing to share.

bri-82

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Re: Anyone willing to share their experience - surgery after raditation?
« Reply #1 on: December 22, 2022, 02:12:18 pm »
I had translabyrinthine surgery in 2017 after GM failure. The procedure was about 4-5 hours from what I remember and mainly involved the aspiration and removal of a large cystic component which caused symptoms by pressing on the brain stem and cerebellum. The hospital stay was 4-5 days. Re-calibrating your balance may take some time depending on if and how much you've compensated over time. Your post-op activities will probably be severely limited (doctor ordered) to a month or more depending on your physical condition. Hope this helps.

~BM
4.5 cm Right AN.
Sub-occip. Surgery 2011 @ Wash. Hosp. Center
Gamma Knife 2012 @ Wash. Hosp. Center
Translabrythine Surgery 2017 @ Johns Hopkins
Cyber Knife 2022 @ Johns Hopkins
Sub-occip. Surgery 2023 @ Johns Hopkins

bfoley

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Re: Anyone willing to share their experience - surgery after raditation?
« Reply #2 on: December 26, 2022, 05:26:38 am »
Bri-82 - Thanks for sharing.  I appreciate your response!!

donjehle

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Re: Anyone willing to share their experience - surgery after raditation?
« Reply #3 on: December 26, 2022, 07:43:48 pm »
I just want to say that I have the utmost confidence in Drs. Link and Neff.  I believe you will be in excellent hands there!

And I will keep you in my prayers on January 17 that all goes well for you, bfoley!  I will be looking forward to hearing some good news soon.  :)
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

bfoley

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Re: Anyone willing to share their experience - surgery after raditation?
« Reply #4 on: December 27, 2022, 05:15:52 am »
Donjejle - Thank you so MUCH!  When people ask what I need thats exactly what I say.  Prayers on that day, especially for the surgeons!

donjehle

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Re: Anyone willing to share their experience - surgery after raditation?
« Reply #5 on: December 27, 2022, 07:16:05 pm »
Until recently, I served as a hospital chaplain, and I witnessed some amazing miracles in answer to prayers.  Sometimes the doctors were surprised at the good results when everything clinical pointed to poor outcomes.  Did God give a great result for every person I prayed for?  Certainly not!  But it happened enough to convince me to continue praying for patients.  So, I will admit that I am biased, but I think it is a great thing you ask for when others want to know what you need.  On January 17, your surgeons will be covered in prayer!  I realize that these forums are not designed for religious teaching, but incorporating prayer in your acoustic neuroma treatment certainly cannot hurt, and it might prove to be of great benefit!
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

gbly

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Re: Anyone willing to share their experience - surgery after raditation?
« Reply #6 on: January 01, 2023, 03:33:24 pm »
bfoley,
We will be thinking and praying for you.  Please have a speedy recovery and keep us posted.

Here is to a healthy 2023 for us all.
GB

tsaff88

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Re: Anyone willing to share their experience - surgery after raditation?
« Reply #7 on: January 04, 2023, 04:09:55 pm »
Hello,

I had translab surgery in 2012 following a Gamma Knife in 2010. The surgery was successful. The ENT reported that the site was clean and they had no trouble removing the tumor. They left a little tail. The post op was a little rough and I was in the hospital for 4 days. Since then I've had multiple MRIs all of which have shown no growth of the remaining tail. It took a few years to get fully comfortable with balance. The biggest adjustment was the total deafness. However a bicross hearing aid has been a big help. BTW both procedures were done at the Cleveland Clinic.

Good Luck!

bfoley

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Re: Anyone willing to share their experience - surgery after raditation?
« Reply #8 on: January 05, 2023, 09:49:27 am »
Tsaff88-

Thank you VERY MUCH for sharing.  It is encouraging that even though a tail was left that it is not growing.

Can you tell me if you had any facial nerve issue post surgery?  I was asked if it was a difference between getting all tumor and severing face nerve or leaving a sliver to preserve the nerve, what would my choice be.  So I am guessing they think they will run into this with the location.  My choice is to try to save face nerve.

My hearing was already gone tumor side and I do have a CROS hearing aid.  Since I WFH I dont wear it often.  The kitties and doggies dont care!

I am hoping I have done some compensation already with the balance. 

Are you annual MRIs? Or how often?

Thanks for any info!

tsaff88

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Re: Anyone willing to share their experience - surgery after raditation?
« Reply #9 on: January 05, 2023, 06:26:09 pm »
Hi bfoley,

The ENT and Neurologist (Drs. Haberkamp & Gonzales-Martinez) left the tail so that there would be no facial nerve damage. And there wasn't. 

Post surgery I had an annual MRI for five years and then every three years.  No growth.  I"m due for another MRI later this year. Based on my experience I agree with your decision to instruct the surgeons to leave the sliver if they feel total removal would cause facial nerve damage.

My vestibular nerve was damaged pre-surgery because of the the Gamma Knife. It is now completely dead and I needed a walking stick and balance therapy post surgery. I've pretty much gotten away from the walking stick except at night on uneven ground or perhaps after a beer or two.

The Gamma Knife damaged my hearing and the surgery finished the job. The main reason I got the CROS is because my right ear is bad and my wife prefers that I keep my eyes on the road while conversing with her in the car  ;)

Best of Luck!

tsaff88


donjehle

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Re: Anyone willing to share their experience - surgery after raditation?
« Reply #10 on: January 06, 2023, 05:45:03 pm »
Thank you for sharing your experience, tsaff88!  It is very helpful on these forums!

Best wishes on your continued progress!
Don
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

bfoley

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Re: Anyone willing to share their experience - surgery after raditation?
« Reply #11 on: January 09, 2023, 05:17:34 am »
Thank you tsaff88!

Yes driving is fine but not being able to hear my passengers is a pain.  So if possible, I try to be the passenger!

I worked hard to regain balance even before Gamma, and work on it by walking uneven ground daily.  Dark is very hard.  People don't understand that you (well at least me) cannot tell up from down without eyesight!

I second Don's post that your post has been helpful!

Bonnie