ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: Kate B on April 05, 2008, 09:14:04 am
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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? (see definitions below)
Hearing preservation has three defined states:
maintenance of hearing within the same hearing class,
preservation of hearing at a "useful" or "serviceable" level (Gardner-Robertson score of 1 or 2), and
maintenance of some measureable hearing function.
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Not me - SSD in AN ear post op
Jan
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Same as Jan: SSD AN side post op
Nancy
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Same as Jan: SSD AN side post op
Nancy
Nancy -
we could be bookends! Your AN was on the right and mine was on the left.
Jan
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Jan - so if we sit next to each other at the symposium I sit on your right side & both our good ears are together !
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My hearing has gone from 12% (just after surgery) to 42% at the one year mark.
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Jan - so if we sit next to each other at the symposium I sit on your right side & both our good ears are together !
Or, if we sit with our "bad" ears together we can actually be like a "normal, hearing person" and have two "good" ears to hear everybody around us ;D
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My hearing has gone from 12% (just after surgery) to 42% at the one year mark.
jtd -
that is incredible! Good to know this actually happens for some 8)
Jan
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Negative SSD left
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My hearing has gone from 12% (just after surgery) to 42% at the one year mark.
Awesome! You are the first person I know of to have some hearing left after retrosigmoid. What was your hearing level prior to surgery?
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Same here...SSD on AN side.
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My hearing was at 100% prior to surgery.
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My hearing was at 100% prior to surgery.
So in your case, choosing retrosigmoid was a very wise decision 8)
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I had 30% hearing loss before surgery and now I have 47% hearing remaining in AN Ear. When someone speaks very loud on the telephone I can understand them, but I automaticly use the good ear now, when talking on the phone.
Dan in Germany
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For me...surgery was a wise decision....
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For me...surgery was a wise decision....
I may be SSD, but it was a good decision for me too :)
Jan
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Yes. I had lost some hearing before my surgery due to the AN and lost a little more post-op, but my hearing in my AN ear is still serviceable.
staypozl
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Yes, I had surgery on 2/12/08 my hearing was 100% before and now it's about 90%, take in mind that my tumor was called an AN prior to surgery, during surgery he found it to be a facial. So far I'm doing good.....let's hope it stays that way with no surprises
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I had retrosigmoid on 4/2/08 and so far so good I still have some hearing. I don't know what quaility it is, it was 68% prior to surgery and I still have a lot of swelling both internal and external. I am doing everything the nuerotologist told me to try to maintain this hearing but only time will tell.
Hope
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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�)
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I had no hearing in the AN-affected ear prior to my retrosigmoid approach surgery and none after. Obviously, I had no hearing to preserve. However, even now, almost two years out, my neurosurgeon always checks for hearing in my 'deaf' ear (snaps his fingers next to my ear and asks "if I can hear that?") when I have my semi-annual neurological checkup. He says it's rare for hearing to return if lost prior to surgery because the nerve was badly 'compromised', but I've done so well in every other area of recovery he still hopes my hearing might return, even if only slightly. So do I, although I've fully adjusted to my SSD at this point.
Jim
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Yes, I have retained 70% in my AN ear. Actually, I'm having an audiogram next week - I think it's actually improved over the last year. (Surgery August 2006). Still can't use a phone in that ear, and have tinnitus, but consider myself very lucky.
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I guess I don't understand the types of surgery. My AN was surgically removed and my DR told me I would lose my hearing totally and never get it back. I had lost most of my hearing (have no idea how much) prior to surgery, in fact losing my hearing is what made me realize something was wrong and I asked my pain Dr to check my ears out. He had been treating me for major neck pain for several months before he realized something else must be wrong with me. As it turned out, my AN was on my brain stem pressing against my spinal cord and causing pain in my neck. (Neck MRI didn't see the big tumor at the top of the neck-was very clear once they did a brain MRI).
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TP -
I'm guessing here, and I could be wrong, but I'd say you had Translab. The "type" of surgery refers to the surgical approach. To put it simply, retrosigmoid gives the surgeons a chance of letting you keep the level of hearing you have at the time of your surgery; translab automatically results in total hearing loss on your AN side.
Jan
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Jan:
Thanks, when I found out I had a tumor I only had a few weeks before my surgery to do any research, which was very little. Once I found this website I really didn't bother educating myself on the types of surgeries. Thank you for filling in the pieces....
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No. I had 40% before surgery and now I have 0%--SSD on AN side.
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hello
I haven't done surgery yet but that was the approach the doc old me would be the best. My AN is now 2.1 x 1.7 x 1.8 and I;m gonna do a hearing test soon but I have most of my hearing I think, no major changes....so hopefully, if I have the surgery done, I at least keep some...
Another question: how many of you had facial problems after the surgery?
talk to you soon
Pascale
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Pascale -
post op I initially had a facial nerve issue for 1-2 days, but I was given a dose of steroids and the issue went away.
I haven't had an issue since then.
I did have facial nerve monitoring during my surgery, which is something that IMO is a "must" during AN surgery.
Jan
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I too had facial nerve monitoring ...
I have facial issues...
Daisy Head Mayzie
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I too had facial nerve monitoring ...
I have facial issues...
Daisy Head Mayzie
How does that work?
I thought that facial nerve monitoring was supposed to prevent the surgeons from causing facial nerve damage by alerting them when they get too close to the facial nerve, whereupon they would "back off".
I'm obviously missing something here. Please explain, Daisy.
Thanks,
Jan
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I think this is a great question and one that I would be very interested to hear a surgeon or other qualified clinician explain. In modern AN surgery virtually every procedure involves nerve monitoring, yet facial nerve damage still occurs. In my limited understanding of how the machines work, they are picking up a signal from the nerve but they are not that exact to insure no damage has occurred. As long as the nerve is intact it will transmit a signal to the monitor, however any nicks to the nerve can cause a temporary or permanent deficit. I would also suspect that any change to the monitor signal may be already too late as opposed to a early warning to "back off". I do not believe they provide an early warning that the surgeon is "close" , I think they react when the nerve has been impacted. All this is best guess on my part and I freely admit to being beyond my knowledge base in this area. Hopefully someone can get a more qualified answer.
Mark
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Tumor location can cause facial problems also. If ones tumor is all in the IAC and squashing the facial nerve or stretching it, there can be problems. I think this is what happended with my first surgery as I had good monitoring response. I had good monitoring rresponse this past spring too and no facial paralysis and the tumor was in the IAC on the other side but probably less time with the larger size. We were able to watch the growth with this last tumor. Also whether it is on the superior or inferior vestibular nerve may make a difference.
Cheryl R
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Cheryl -
I didn't even know there were superior and inferior vestibular nerves.
Interesting to know that despite nerve monitoring, location can still make a difference.
Jan
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The hearing loss can also be affected by which vestibular nerve the tumor is on. They are more often on the inferior and there can be a chance of having better hearing if it is on the superior. It has been some time ago since I read this. I have some darn memory issues anymore so do not have some of the details completely available when I want. Sometimes they show up all of a sudden and sometimes not.
Cheryl R
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Kate,
I have retained hearing after my two retrosigmoid surgeries and I can definitely boast ;) that my hearing servers me well - I can hear on the phone (but not as crystal clear as with the good ear).
Hrissy