Kate,
Pre- surgery I had 100% word recognition and marginal hearing loss on the higher frequencies only.
After surgery I was totally deaf in the AN tumor side.
I chose the retrosigmoid- sub-occipital (RS) approach option as there was question as to “if� it was an AN tumor or a meningioma- or not. If it had been a meningioma it would have peeled of the acoustic nerve much easier and there was a chance of hearing preservation. However once they were in there it turned out to be a big weird and unusually adhesive - AN tumor of 4cm so they had to snip the very sad looking vestibular nerve that was the tumor’s blood supply source… in order to access the tumor and have better visibility of the facial nerve.
The larger and sticker the AN -the smaller the chances are of hearing preservation. If they get in there and find it actually is a different sort of tumor, as in CABRAM’s case, than there is a chance of hearing preservation.
I was pre-warned that,
“If we get in there and it is a meningioma, or some other sort of non AN tumor, we have a good chance of saving the hearing. However if it is an AN tumor we will NOT be able to save your hearing.� (note the 4 CM size was a key factor)
This is why I chose the RS over the translab (TL). If I knew, for sure, it was an AN -I would have chosen the TL especially now that I have facial issues. However if I had just gone ahead and had a translab and sacrificed the hearing (and it turned out, in my case, not to be an AN tumor) - I would have been kicking myself for automatically sacrificing my hearing. In CABRAM’s case a very wise choice was made to go the R/S approach as his turned out to be a facial neuroma – NOT an acoustic neuroma.
Until they are in there, with the skull open, they do not always know (for sure) what sort of beast is actually inside- that needs to be removed. (Sometimes even then they are not sure until the tumor pathology is done after dissection and examination of the remnants and cells.) I hope that the next generation of AN patients will have something that is more advanced technology than an MRI- to know this BEFORE the craniotomy process happens. We are just not there yet in imaging technology- but they are getting closer.
Sadly we do not have crystal balls to tell us the exact future, prognosis and outcome.
I did not have a crystal ball but I did obtain opinions from world class AN surgeons before I made my choice. I was also warned that the one draw back to the RS approach is there are higher incidents of patients having chronic post operative headaches as the skull dust can mix with the CSF fluid during the craniotomy process. My surgeons took much precaution for this not to happen- and consequently I do NOT suffer from headaches.
The “WHICH treatment option?� decision IS a very tough one to make.
I totally empathize with anyone who is at that stage still - as I have been there. The “retrosigmoid vs. the translab� debate is one that has historically polarizes neurotologists into the old school and the new school. I was the patient in the middle of an ugly collegial debate- and finally chose a world renowned surgeon who seemed to offer the most balanced and non- bias opinion- as he had equal experiences in the two approaches. (Surgeons that were on the opposing ends of the polarized heated debate who could not agree -seemed to agree on one point however. They all respected him greatly as an objective and professional opinion). He had first hand experiences with both schools of thought and approaches. Ultimately the RS over the TL was my final choice… and I am the one who has to live with that. I did regain 60% facial movement but at 6 months the synkinesis started in. This ‘may’ have happened with the TL approach too. I had a one giant, very adhesive and unusually bloody tumor that was very complicated to work with. Once they got close to the facial nerve they left it alone. We were all surprised to have me wake up with Bell’s palsy being that they left the facial nerve in tact with tumor on it- but the facial nerve still had trauma… My surgeon was correct that in 6 months the Bells Palsy would resolve however we were all disappointed that the synkinesis took place in the nerve re-growth process. In a small percentage of patients this happens…
The key here it to remember that that AN tumors are typically slow growing and a patent does have time to research- unless they become an emergency situation as was the case with my dear buddy Satman (aka Super “8�) who went into emergency with an 8 cm and life threatening symptoms. Unless one is told they have closing ventricles or a brainstem so squished that their bodily functions are getting weird- than the patient DOES have time to reflect and research all options …and to “who� are the best and most reputable surgeons of those approaches (radiation, middle fossa, RS or TL).
Remember that each patent’s case is unique: in their tumor make up, location, pre-op age health and fitness level. All of these determine their post treatment outcome on an individual bases. I was so hoping for black and white (i.e. concrete) answers, in my case, but there turned out to be much gray area.
By asking this question
“Although retrosigmoid is considered to be a hearing preservation surgery, my question is to find out if anyone on this site actually retained usable or serviceable hearing after surgery according to Gardner-Robertson?"
You are bringing up a very valuable discussion thread. I think it is imperative that the medical community too hear the patients’ perspective on this.
Thank you for asking this question. It is a very intelligent and has in past been provocative one. It needs to be asked.
Daisy Head Mazy
(Formerly “4�)
