Author Topic: translab vs retrosig-seeking personal experiences from both  (Read 922 times)

ohiogal

  • Newbie
  • *
  • Posts: 1
translab vs retrosig-seeking personal experiences from both
« on: April 25, 2018, 08:32:29 pm »
I was diagnosed with a right sided AN (3.1 cm x 1.7 cm x 1.7 cm) in mid March following an MRI done for facial numbness, altered taste, ear pain, headaches and nausea. My symptoms have continued to progress and evolve in the last 5 weeks. My hearing is still normal and I am a 32 year old mom to two toddlers.  I have sought opinions from 2 hospital teams here in Ohio. One team is recommending a translab approach and the other is recommending retrosigmoid since my hearing is normal (although I know the probability of saving my hearing with this approach is still low). Both teams consist of an ENT and Neurosurgeon who are in agreement on the approach. Has anyone else ever received conflicting opinions? If so, how did you make your choice?  I'm drawn to the slight possibility of hearing preservation but am TERRIFIED of facial paralysis which from what I've read is a higher probability with retrosigmoid.

Any suggestions or surgery experiences would be appreciated!  :)

MarlaB

  • Administrator
  • New Member
  • *****
  • Posts: 31
Re: translab vs retrosig-seeking personal experiences from both
« Reply #1 on: April 25, 2018, 09:37:25 pm »
sorry for your diagnosis..yes, It was recommended for me to have either one..three docs suggested Translab (2.7 cm tumor) and only one said retro..with a super small chance of saving my hearing.
I went with retro, lost hearing, face is FINE!!
Depends upon where the tumor is and experience of doctors... make sure they have done LOTS of these surgeries, either way you go.
Trust your gut, which doc makes you feel confident and safe. That will go a long way.
I also told them to leave my facial nerve alone, even if that meant leaving a bit of tumor (which they did.) It's been 8 years since surgery and all is well.

Good luck to you!

Marla B.

midee

  • New Member
  • *
  • Posts: 8
Re: translab vs retrosig-seeking personal experiences from both
« Reply #2 on: April 28, 2018, 02:58:29 pm »
Hi Ohiogal,

I am located in Cleveland, Ohio. Just had my retro-sigmoid surgery Feb. 2018 at UH. My 2 surgeons are extremely experienced in AN tumors. My hearing was already gone about 2 years prior to surgery. My tumor grew to 2CM which is why I needed to have it removed. I had been in watch and wait for over 5 years. My facial nerve was preserved and I have no balance issues. Let me know if you want to talk. I am doing great.

Jet747

  • Jr. Member
  • **
  • Posts: 58
Re: translab vs retrosig-seeking personal experiences from both
« Reply #3 on: April 30, 2018, 05:25:54 am »
Hello Ohio,

3 years ago I had retro sigmoid followed 6 months by GK radiation.  My retro sigmoid procedure was a debulking procedure where they drastically reduced the size of my tumor.  The radiation then is done to prevent The remaining tumor from regrowing.  There are pros/cons to this approach but what I can say is 3 years later I have retained my full hearing, I have no facial issues and can pretty much say things have returned to normal (I do have some tinnitus).

I went the route I took for the same reasons you are considering.  Preservation of hearing.  At the time I had a 1 year old daughter. 

Depending on who replies here, you might hear good and bad experiences with both procedures. The outcome is highly dependent on the experience of your Dr.

Once you choose which surgical path you feel most comfortable with, spend a lot of time understanding the qualifications & experience of your surgeons.  How many procedures are they doing annually?  Of those procedures, how many are of the same size as your tumor.  Do they see any complications associated with the location of your tumor?  If you ask the same questions to each Dr. you can compare responses and get comfortable with one.

Another recommendation for you would be to check out whether an ANA support group exist in your area.  This could be of benefit both pre and post op.  The group would have a variety of experiences and advice as you navigate this chapter.

Best of luck to you!
Jet
RS Surgery May 2015

GK Radiation October 2015

https://www.anausa.org/smf/index.php?topic=21969.0

robertweeks

  • New Member
  • *
  • Posts: 25
Re: translab vs retrosig-seeking personal experiences from both
« Reply #4 on: June 19, 2018, 03:55:17 pm »
I can understand the concern.  I also had a right side AN about the same size as yours.  Based on the MRI, the surgeon recommended translab in order to save the hearing.  I was told I had probably about 60% chance to save the hearing. 

I flew to L.A. for the surgery and went through a battery of tests the day before the surgery.  Through the day of testing, they dropped my chance of retaining hearing to about 40% to 50%.  At the end of the day of testing they suddenly said, "You haven't had such and such test.  You have to have that test right away!" So they bustled me off for a test with the audiologist.  I'm sorry, I don't remember the name of the test, but it had to do with measuring the signal from the auditory nerve across the brain.  The result of that test, at about 7pm the evening before I was supposed to have surgery at 8am the next morning, was that they were not picking up any kind of signal from the auditory nerve across the brain.  This, they said, would make it virtually impossible to preserve the hearing, they dropped the chances to less than ten percent, and switched to recommending retrosigmoid.  Following the surgery they said it was a very good thing that they had switched to retrosigmoid because the AN tumor, which usually adheres to the surface of the nerve, in my case had intruded down into the body of the nerve.  This was why there was no signal and they said made the chance of saving the hearing at 0%.  They said they would not have wanted to try to deal with that tumor in a translab surgery at all. 

So I have lost the hearing in the right ear.  I do have some facial paralysis, but it is not severe.  It is unpleasant, but it is not really a problem.  But, as a mom of two toddlers, I would put a higher price on preserving the hearing, if possible.  One thing I have found that I wasn't prepared for, after losing hearing on one side, is that my ability to triangulate on noises is slim to none.  I can hear my cell phone ringing in the house, but I can't tell where the sound is coming from. 

I know this may sound discouraging.  Certainly, though I was not thrilled with the communication skills of my surgeons, the care and treatment I received was excellent in all respects otherwise.  So, I would say, make sure you get all the necessary tests done ahead of time if at all possible and, like the earlier reply, trust your gut.  And, if you aren't sure, keep getting additional opinions and keep asking questions.    Don't let yourself be crowded into a choice that doesn't feel right.  Generally speaking there is no urgency to having the surgery.  My AN symptoms were already improving somewhat by the time of my surgery, after having been deteriorating over the prior year and a half. 


 


anything