ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: trev0024 on February 25, 2012, 02:19:55 pm
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Hey everyone, getting close to a treatment decision and needing some feeback. I have gotten multiple opinions and all suggest surgery. I am 31 y/o with a 2.3 cm (L) AN and 40-60% loss of hearing in the voice frequencies (some functional hearing left). I will be having surgery at the Mayo Clinic in Rochester, MN with Dr's. Link and Driscoll. They are recommending either the trans lab (TL) or retro sigmoid (RS) surgery. They tell me that with the TL surgery I will lose all hearing and recover in about 6 wks. They give me a long shot (0-5%) chance of preserving hearing with the RS, longer recovery estimated at 12 wks and greater chance of dealing with headaches. They claim all other outcomes the same with their past surgeries ( RS or TL) including facial nerve preservation and tumor removal.
Part of me wants to try and preserve hearing and deal with the longer/tougher recovery. On the other hand, I need to return to work as soon as possible and would likely lose my hearing anyway.
Has anyone been faced with this dilemma? The other clinics I talked to didn't even claim that there was any chance for hearing preservation and recommended trans lab.
Thanks for any advice.
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Why would retro take longer to recover?
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I had the same decision and about the same size tumor. Dr. Link and Dr. Driscoll recommended translab and I am very happy with the outcome. I wasn't too tempted to preserve the crappy distorted hearing I was experiencing from the affected ear anyway. In any case, you are in very good hands.
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I asked why Retro would take longer in recovery on the FB acoustic neuroma/vestibular group and those who had Retro said their recovery was the same as those who had Tranlab. Some retained hearing and some did not. My opinion is try to retain what hearing you have. When is your surgery?
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I haven't scheduled my surgery yet. I am going to think about this for a week or so then schedule in March or April. Dr. Link seemed very pessimistic about hearing preservation and was somewhat biased towards the trans lab. Dr Driscoll (ENT) was a Little more positive and made it clear that if I wanted to try to preserve hearing that there was a chance and I should go with retro sigmoid. Ugh! It would almost be easier if they just told me what to do! They were very diplomatic and far less pushy or opinionated than other clinics I spoke to.
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Ugh! It would almost be easier if they just told me what to do!
Ah, yes, the AN dilemma...so many, if not most here, wished the same thing - go with your gut - it knows what's right for you...may take some time for the gut to "talk" to you, but you'll know when you hear it :) We know it's not easy - one of the hardest decisions I ever had to make.
I'm w/ Mindy on the recovery time for retrosigmoid vs translab - never heard of there being such a difference in recovery time, if any...of course everyone's recovery time is different, but that's not usually based on which approach is taken (speaking very non-medically, of course :) just observation from lots of testamonies here on the forum).
Best to you,
cindy
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In my opinion, I think doctors will recommend the surgical approach that they do most often.
Lisa
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I had the same decision to make ten years ago with the same team of Dr.s. I opted for the retro sigmoid on the off chance that they could save some hearing. 5 to 10% chance I think they told me at the time. Alas, it turned out I was in the majority of the 90 to 95% and am SSD. BUT, the surgery went well and I had no real issues other than I am a little wonky and I don't spend much time on ladders these days. Of course I didn't before either. ::) I still get up in my tree stand each fall though. I just make sure I am strapped in which anyone should do anyhow.
I was 51 at the time and felt closer to 91 for a month or two after the surgery. That went away though and I have been doing alright since. You have a good team of Dr.s and should be as good as possible whichever way you choose.
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Trev ~
We have to consider that the 3 surgical approaches (Retrosigmoid, Translabyrinth and Middle Fossa) are predicated on allowing the surgeon to access the AN for removal (a slow, tedious process) as it is to retain hearing, which, for the doctor, is usually a secondary consideration because if he/she cannot access the tumor in a way that he/she can't remove all or most of it, the AN has a greater chance of regrowing in the future. I'm not an expert on recovery times however, because all three surgical approaches involve similar trauma to the skull (to remove the tumor) I would assume that recovery times would be similar, taking into account the normal variations in healing timeframes.
That surgeons tend to recommend the surgery they are most familiar with is basically correct although in many cases, their choice is based on the fact that the patient's tumor removal is best served by the familiar Retro or Translab approach. This is a question you would want to post to the doctor: why are you planning to use this approach? My neurosurgeon showed me my MRI scan and explained why he would use the 'retro' approach - without my having to ask. I believe that should be a standard part of the surgeon/patient consultation....but that's just me. :)
Jim
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I have no clue regarding recovery time. Just the word "recovery" could inspire a lot of debate about what "recovered" means.
Your case is similar to mine...very little hearing left...is it worth saving? I had hearing and vestibular problems, and no face problems. My doc told me my AN ear was so far south of good that it would not be much of a loss to just go SSD, and give him a more direct path to the tumor to save my face. So, if you do the Ben Franklin list, good on one side, bad on the other...save a really bad ear and possibly lose my face, or lose the bad ear and keep a good smile...I was first in line for good teeth. Not much of a choice...keep the smile. Your case might be different than mine, but it helps to make a list if the good vs bad and make a practical decision.
Lots of folks here are SSD and it appears not to be a problem for some of them. You just learn to live with it. With your hearing loss, you are pretty close to not missing it at all of you went SSD today. If you lose the ear, get a BAHA and I'll bet your hearing will be better then than it is today. Make that list right now!
James
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Trev0024:
Why does it take longer to recover with retrosigmoid than with translab? Is it that with retrosig, the brain is moved aside to reach the tumor, but not with translab? My Drs never mentioned anything about a difference in recovery time.
I chose retrosigmoid. Went from 60% word recognition pre-surgery to 20% word recognition post-surgery. Facial nerve is fine. I do get headaches, but it's so much better now at almost 4 years post-op.
Do I regret my choice? Not at all! I have no way of knowing that chosing translab would have spared me the headaches.
Syl
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I'm not sure why the recovery time is longer. They are also placing me on strict lifting restrictions for 12 weeks. Did you experience similar recovery and lifting precautions? They also didn't seem to have a specific answer as to why the retro sigmoid may result in headaches other than this is just what they have seen in their patients over the last ten years. How long did you experience headaches? Where they intense? I just can't give up on the idea of trying to save some hearing.
Jeremy
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The translab approach does not require any movement/lifting of the brain--the retro does. The retro approach the surgeon goes thru muscle in the back of the head, this is why there is a high percentage of people with headaches. Translab they go thru bone. I am not 100% sure of this--but I am pretty sure--per my consult at Mayo Clinic--but it was 3 years ago so my memory may not be perfect. I vividly remember Dr. Link at Mayo telling me I had about a 50-60% chance of having headaches and possibly severe for the rest of my life. I chose translab.
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I just had retrosig approach in Jan 2012. They didn't go through the neck muscle that attaches to the skull as mentioned above, but instead pulled it out of the way during surgery. I am 7 weeks post op and I have not had any headaches whatsoever.
I had lifting restrictions for about six weeks and was then advised to advance as tolerated. I was cleared to do high intensity exercise like pull ups and heavy bench press.
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I'm not sure why the recovery time is longer. They are also placing me on strict lifting restrictions for 12 weeks. Did you experience similar recovery and lifting precautions? They also didn't seem to have a specific answer as to why the retro sigmoid may result in headaches other than this is just what they have seen in their patients over the last ten years. How long did you experience headaches? Where they intense? I just can't give up on the idea of trying to save some hearing.
Jeremy
I found out the hard way that any lifting or bending over can cause a headaches. I still am very cautious & careful about bending over or doing any heavy lifting.
The first 3 years were very difficult because of the intense headaches. They didn't start until about 17 days post-op. I got headaches so often, mostly in the early morning, but often during the day too. They were so intense & debilitating. Tylenol & a heating pad at the back of the neck got rid of them most of the time. I was usually up and about within an hour. I rarely get the ones that last for hours.
I do believe that Tylenol made them worse. I was taking 3000-4000mgs of Tylenol daily. A neurologist put me on Pamelor. I took that for about 10 months. After that it didn't do much for me. It did get me off my Tylenol habit & reduced both the intensity & the frequency of the headaches. After that I was getting headaches 3-5 times/wk, instead of daily.
It will be 4 yrs for me in June. I had a headache yesterday morning, but it went away on its own & I hadn't had one in about 2 weeks. I still take Tylenol once in a great while & I still keep my heating pad handy.
I've heard different reasons or theories as to why retrosig has the higher risk of headaches. One neurosurgeon told me that bone dust from the drilling can get left behind although they try to clean up as best they can. Another explanation is that because retrosig is closest to the neck, where there is so much going on with nerves & mucsles. And my neurologist said that headaches are just common with all head surgeries. It's as if you are left with a head injury like people who are involved in car accidents.
I don't want to discourage you from choosing retrosig & I certainly don't regret choosing retrosig myself. With ANs, it's about choosing the lesser of the evils. Tthere are risks no matter what you end up choosing. I wanted to preserve my hearing, but in my case it sacrificed more of my hearing. It has taken my brain a while to adapt, but it has.
Keep reading, keep asking questions. Only you can decide what is best for you.
Syl
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Jeremy ~
For what it's worth: I was concerned that the Retrosigmoid approach AN surgery my neurosurgeon had proposed would leave me with headaches...something I never experienced prior to the surgery. He reassured me that: "my AN patients don't get headaches". This was surprising based on what I had read and that this doctor was usually quite modest. However, I fully trusted him and he was proven correct. I did not experience headaches, post-op - or in the six years since my AN debulking surgery. Follow-up FSR (3 months later) did not produce any headaches, either. I suspect that headaches following 'retro' AN surgery are, to some extent, contingent on the skill of the doctor performing the surgery.
Jim
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Some experience headaches and facial "issues" with retrosigmoid, but that hasn't been my experience.
I had slight facial paralysis - first 24 hours post op - but a single dose of steroids cleared it up.
I've also never had headaches either before or after my surgery.
I also had a pretty quick recovery - was back to work part-time (desk job) 2 1/2 weeks post op and full-time 4 weeks post op.
I chose retrosigmoid in the hopes of savings my (diminished) hearing, but I ended up SSD.
I've never regretted my choice. I would have regretted just having my docs automatically "take" my hearing through the translab approach.
But this is just me and my experience.
You have to do what you think is best for you.
Good luck,
Jan
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I had retro, was working from home within a week and 1/2- back at the office in 3 weeks. The recovery will depend on you! The lifting issue is because every time you lift anything your body involuntarily causes you to hold your breath. This increases pressure inside the skull, not advisable after there has been a hole put there. I am 6 months post op and back to my life, by the time they removed my right side AN , it was golf ball sized and growing. I am SSD, but in reality this is only a problem in crowded venues. My left side balance was already compensating so losing my right side balance nerve did not cause much dizziness or balance issues. It is brain surgery and you will feel really zapped for a while, but take it slow and be good to yourself. The sun comes up in the same place the next morning and will wait for you!
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I just want thank everyone for sharing your experiences and kind words. This has been very helpful and I'm grateful to have found this website. Retro scheduled Tues. March 20th at Mayo in Rochester, MN.
I will be here often I'm sure as I recover.
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Hi trev0024;
I've been a Drs Driscoll/Link pt. for 12 years as have NF-2. My feeling is Mayo docs are very conservative in pursuance of Tx and projection of outcomes. UIHC and Dr. Gantz aren't quite so conservative.
Would have to say 0 -5% is pretty low though, even from Link. He gave me 15% and I decided to do nothing. Am deaf now, but can hear environmental sound with HA.
All considered, with your already 40-60% hearing, I'd opt for Translab if this were my choice.
Of course, Dr. D will tell you more RS's have been done than any other surgical type. True.
But, I would ask those fellows how many RS's they've done as both Drs are fairly young b-4 embarking that route. Link is more quick with answers.