Author Topic: Retrosigmoid approach (please share experiences)  (Read 814 times)

James123!

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Retrosigmoid approach (please share experiences)
« on: May 24, 2026, 04:32:36 PM »
Hi everyone,
I have a 1.3cm AN. I am a 33-year-old male (father and husband), and have a moderate hearing loss in the affected ear. I have opted for retrosigmoid approach at Johns Hopkins, but am very anxious. I was told by the surgeons that saving hearing is at best 50 percent. Permanent facial nerve damage is 3-5 percent. I am particularly nervous about having permanent facial damage. Please share your experiences. Does your hair eventually grow over the scar?

DanFouratt

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Re: Retrosigmoid approach (please share experiences)
« Reply #1 on: May 24, 2026, 08:01:16 PM »
James,

Welcome to this group.  I cannot answer your questions as I went with CK to resolve my issue. Just wanted to say someone here will have had your experience. 

Good luck on your journey,
Dan
Dan Fouratt             65 years old
Vestibular Schwannoma
Discovered 9/15/21  5mm x 11mm
MRI 4/11/22            No change
MRI 1/9/23              7mm x 13 mm
MRI 6/19/23            No change
CK  9/15/23            
MRI 6/14/24            7mm x 12 mm

Mark F.

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Re: Retrosigmoid approach (please share experiences)
« Reply #2 on: May 24, 2026, 09:39:06 PM »
If you normally have longer hair then yes it will grow over.  The scar will start down on your neck.  Usually I have to actually  point it out to people  who ask because  once it healed up it really isn't all that noticable as I have always had longer hair.   Of course they will shave the area so at first it looks pretty bad, but once your hair grows back in it's not that bad.  If you are not having facial paralysis issues at the moment, your not very likely to get new paralysis but it is possible.  The doctors have to tell you worst case scenario, and it is a slim possibility.  Do you have a surgery date set up?   

Mark F.

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Re: Retrosigmoid approach (please share experiences)
« Reply #3 on: May 24, 2026, 09:42:50 PM »
By the way, I tell everyone that is going through surgery the same thing.  Stay as active as possible before surgery, I fully believe that helps the recovery process quite a bit.   Strong leg muscles will help a lot when you are try to relearn balance and walking.

James123!

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Re: Retrosigmoid approach (please share experiences)
« Reply #4 on: May 25, 2026, 06:04:43 AM »
Thanks, Mark. Surgery date is set for early September. Did you have retrosigmoid too? I don’t have any facial issues at the moment.

Mark F.

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Re: Retrosigmoid approach (please share experiences)
« Reply #5 on: May 25, 2026, 08:33:18 PM »
I did have the same surgery.  My only facial thing pre surgery was that just a few weeks prior to surgery I developed a slight mouth twitch when I smiled.  For me that twitch actually went away after surgery instead of getting worse.

  Another piece of advice for afterwards.  Set goals but don't make them goals that take a long time.  You will feel better about your progress if you are able to meet goals quickly.  It's ok to have long term goals but don't concentrate as much on that.  My long term goal for after surgery was to complete a 5k that was to happen about 6 months after surgery.  But my first goal for that was just to finish even if I had to walk it all.  I set short term goals that I could meet within a few days which kept my spirits up and kept me from giving up on the long term goal.  My first short term goal was to walk around the hallway at the hospital 4 laps with the walker.  I had a longer stay because of secondary infection, but by discharge I was walking 1/2 mile around the hallway with a walker or someones arm for help.    At home my goals were things like walking to the mailbox without any help, then to the stop sign, then around the block. As I worked on the short term goals, my long term goal became too easy so I'd adjust it from time to time.  From walking the whole thing, to jogging part of it, then to jogging the whole thing, then to running it.  When that six months came around I actually ran the entire 5k in under 30 minutes.  But if I had set that as my goal from the beginning, I may have given up early on when I was struggling to walk to the end of the road and back.

DanFouratt

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Re: Retrosigmoid approach (please share experiences)
« Reply #6 on: May 26, 2026, 10:38:15 AM »
James,

What Mark said about getting in shape is right on target.  I had OHS six months after my CK procedure.  I was getting in shape for CK and it helped a lot with the OHS. I had to limit my work outs because of the heart but
I pressed it.  You have until September take advantage of the time and start today.  Set realistic goals but keep at them it will pay off in the long run.  I am a wine lover but I went 6 months without a glass.

Good Luck on your journey,
Dan
Dan Fouratt             65 years old
Vestibular Schwannoma
Discovered 9/15/21  5mm x 11mm
MRI 4/11/22            No change
MRI 1/9/23              7mm x 13 mm
MRI 6/19/23            No change
CK  9/15/23            
MRI 6/14/24            7mm x 12 mm