ANA Discussion Forum
Archive => Archives => Topic started by: Bax on February 22, 2005, 04:48:46 pm
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As I have been told there are a couple of options regarding the type of surgery that I should consider.
What are the benefits of the translab surgery vs. others?
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translab is the most direct route to the tumor. They go directly behind the year. It "guts" your "plumbing" (i.e. your hearing anatomy) so that you won't be able to hear afterwards; however, you'll also reduce complications such as facial never damage.
The other two are retro-sig and middle fossa. The middle fossa is usually done with small tumors that are not yet into the pontine angel. They go through the top of your ear.The retro-sig goes behind the head/ear. it's used for larger tumors like the translab. The downside to retro-sig is that they have to go through an area of the head with muscles and nerves.
There are no "great" methods. They all have their positives and negatives. Your presenting symptoms and tumor size would likely dictate the method used.
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I had middle fossa surgery on December 17, 2004 in Los Angeles. I am doing great! My hearing and facial nerve were saved!
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Hi Bax,
Let me refer you to this site: http://anworld.com/
It explains the differences between the surgery procedures as well as radiation and wait and watch information.
Good luck on your journey.
Kindest Regards,
Kate
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Kariisa, I wonder if you could describe your recovery a bit. I'm having middle fossa surgery March 2, 2005 (next week) at Virginia Mason Hospital in Seattle (Dr. Backous). My tumor is small (4 x 7 mm) and completely within the inner ear canal. I've had no symptoms other than sudden hearing loss.
I satill have very usable hearing (about 75%) in my AN ear, and my goal is to preserve that. Do you still have the same level of hearing you did before the operation? Did you have balance problems? How soon did you feel like resuming your "normal" life? Did you do anything special to help speed your recovery?
Steve D.
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Steve, if you use middle fossa you should have a very high chance of hearing preservation by an experienced surgeon. Dr. Brackmann at the House Ear would say that in their experience better than 75%. The most important factors being that you still have most of your hearing AND that the tumor is small. Make sure that YOUR surgeon is confident in such a high success rate or seek better treatment elsewhere.
But, everyone's tumor is different. They won't really know until they get in there. Yours could be easily removed or it could be sticky as glue and involve other nerves.
Best of luck!
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Kate, Thanks for listing the anworld website. This is the first time I have seen it. There are so many things for me to learn.
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Hi All: One should be aware that with the suboccipital approach (is this the same as retrosigmoid?) there is a higher chance of post op headaches. I had the suboccipital approach as the surgeon was trying to save my remaining 60% hearing on the AN side - I did lose all my hearing on the one side, no facial paralysis, but had extreme post op headaches which finally waned after two years with extensive physiotherapy....
Cecile
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I understand that suboccipital is the same as retrosigmoid. I believe there is about a 35% chance of retaining hearing with suboccipital.
Becky
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As with anything, be forewarned on straight statistics. As many have indicated on other posts there are many variables at play including the skill of the doctor and how "sticky" it is once they get in there. With an experienced team that has specialized on retrosigmoid approaches I would say the real chances are better than 35%. Such a skilled team would be able to better assess the chances for hearing preservation given the location and size of the tumor. They may not even recommend that approach if the chances look low. I would be leary of a doctor that could not explain the rationale for his/her estimate of chances just as much as I would question one who does not consider all approaches available (including radiation). I was lucky to have one who did. This was the main reason I chose him over the other two I looked at.
I had a 2.0 cm AN removed via retrosigmoid just about a year ago, maintained all of my pre-surgery hearing (the test showed it was actually better, but there's always variance in the tests), they were able to remove all the tumor, and had full facial function right after surgery. I was able to smile at my wife in ICU when I woke up. I was back running my kids to school after a month, and just last month I went snow boarding for the first time. If I could only kick the tinitius I'd call it a slam dunk, but there's an equal chance of having that after translab. So, don't be scared by that stats without reviewing all the angles.
Jon Bonesteel
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I am 30 yrs old and was recently diagnosed with a 1.8 cm AN on my right side. My job requires that I retain the hearing I still have. The doctors I have chosen (Dr. Mostidomos and Dr. Cueva from Kaiser in San Diego) have told me I have a small chance of retaining my hearing (about 10%). Now I am left trying to decide which surgery method I want to chose and I am unsure. I want to save my hearing, of course. But at a greater risk of facial paralysis I'm uncertain. Any advice?
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Hi Rich,
Let me refer you to this site: http://anworld.com/
It explains the differences between the surgery procedures as well as radiation and wait and watch information. Usually when there is reduced hearing (lower than 50 ), translab is the recommended surgery type. Honestly, giving you a 10% chance, sounds like it is the *hope* factor versus an expected outcome.
Good luck on your journey.
Kindest Regards,
Kate
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Rich,
Based on your message I'm assuming you still have usable hearing which you are trying to preserve. My AN was roughly the same size as yours and I went to several top surgeons and got similar projections of 10-20% hearing preservation with surgery. Translab is obviously 0% and typically the middle fossa approach is limited to smaller AN's. That leaves the sub occipital route which from what I read has more probability of post surgical complications and headaches than the others. My understanding also is that approach doesn't present the facial nerve to the surgeon as well as the other two, but that is a question better left to a skilled AN surgeon. I opted for FSR with the cyberknife and have had zero facial nerve issues and have retained my pretreatment hearing SRT of 92-100% in the 3.5 years post treatment. It might be worth your time to explore that option as well. You'll have to get Kaiser to let you go elsewhere. I know in the bay area they do have an agreement with Stanford to do radiation for AN's so it can be done. Best of luck
Mark
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I had retrosigmoid (also know as sub occipital) in Feb 04 at Johns Hopkins in Baltimore. I had surgery on a Friday and went home on Monday with Tylenol as my pain killer. My 2.5cm tumor was on the balance nerve. That was cut so I had to do some PT to retrain my balance. I lost the hearing in my ear and wear a transmitter behind my right ear that feeds into a hearing aid in my left. Works well. However, I spent the first year without any hearing on the right side and it was very frustrating. I do get headaches from time to time with them being the worst months 5 to 7 post surgery. Now they are infrequent, less intense and shorter in length. My skull is still tender in spots - but not in the area of the surgical opening! Good luck with your decision.
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Thank you all for your input. I think I am going to roll the dice and go with the Retrosigmoid surgery method and hope for the best. My doctors advised me that because of my young age and the lack of medical knowledge with radiation beyond 5 yrs I should opt for the surgery route. I do feel like I just want to get this dang thing out of my head. It is a very togh decision to make unfortunately.
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Rich,
As long as you are looking at Kaiser in San Diego, you should also consider House Ear Institute in Los Angeles. Dr. Brackmann et al will review your MRI and consult with you by phone for free.
Your tumor is medium. Is there indication about whether it is on the superior or inferior nerve?
One has a better chance of hearing preservation.
Honestly, to be given a 10% chance of hearing preservation is probably equivalent to chance. I was given a 70% chance. There is a belief that the more you start with the more you might retain. What is your current hearing level now? In my humble opinion, if you can hear well now, you should consider middle fossa. You are approaching the borderline for Middle fossa It has higher stats for hearing retention. Have you read the statistics and data relative to hearing preservation? There is serviceable hearing and usable hearing.
Be persistent....
Kindest regards,
Kate
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rich, hi! just wanted to fyi you of my recent surgery for my 8 mm left AN by dr brackmann and dr hitselberger from the House Ear Clinic. i am 29 yrs old and i had middle fossa done on april 14th (just over one week ago). i have no hearing loss and no facial paralysis. i would totally recommend at least talking to these doctors before having anything done.
while i was there i met a girl from Chile who was also there for her AN and there was a girl from isreal, a dad from oklahoma, and a boy w/ NF2 from somewhere...they do many many AN's each week. i heard that brackmann has done over 2000 and hitselberger has done over 5000 AN surgeries. if you go to their website there is a phone number to call and you can send your mri and audiogram and they will call you free of charge.
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Rich,
Best of luck with your surgery. The desire to "have it out of your head" is a very valid reason in choosing between surgery and radiosurgery that a lot of folks don't consider. I believe Kate posted to pursue the middle fossa approach for a better chance at preserving hearing. My understanding is that is true, but that is better decided with the surgeon given the size of your AN. In terms of radiation impact not being known 5 plus years out, I think you should talk to someone other than a surgeon who has had a vested interest in doing the procedure. Gamma Knife has been used for over 30 years, so that comment is just flat out wrong. I would suggest that you run that issue past an experienced radiosurgeon if that concern is affecting your decision. I would also agree that House is one of the most experienced groups of doctors and that always improves your odds of success.
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I wish I could have the darned thing back in my head, for all the problems I'm left with now!
Besides, just a few days after the surgery they told me they had to leave some behind and gave me a 20% chance of regrowth. I recall a big let-down hearing that, and thinking, "then why did i just go thru all this??"
If only it were as easy as having the darn thing gone. Also, pre-op my only symptoms were sudden distorted/muffled hearing and sudden tinnitis on the left. An MRI was done right away, and I was referred to surgeons for a slow-growing benign acoustic tumor. (I should have been given steroids, but somehow my hearing was left by the wayside ...)
Anyway, because of those few symptoms, the surgeons were ON it. The surgery was offered within 2 wks of my surgery consult. Now, I have a host of worse symptoms, that no one seems to have cared about for a very long time!
For me, now that I'm post op, my symptoms haven't mattered very much! But the original few initiated this entire surgical life-changing event.
Think about it, because you cannot make a raw egg out of one already cooked ...
If only I could have my 1.4 back ...
Becky
P.S. Not everyone has such a disappointing outcome.
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Well I spoke with my doc and he advised against radiation because of my young age (30) and the fact that if the tumor continues to grow it will cause more complications for the neurosurgeon during surgery because of the microscopic scar tissue it leaves. It would then increase all of the risks of side effects post surgery. Also in some cases the tumor becomes molignant (not good).
He told me the middle fossa approach is similar to the retrosigmoid approach but is usually doctor preferance. He said it does have some advantages to hearing preservation but at a greater risk of permanent facil poralysis and a risk of post op seizures. He does not do that method and said it was in fact abandoned by neurosugeons some time ago but then recently was brought back.
I did some research and found a study conducted by my doctor in which hearing preservation was attempted during retrosigmoid resection while monitoring the direct eighth nerve response and the auditory brainstem response. The study showed that 35% of the patients hearing was saved when they monitored the direct eighth nerve reponse as opposed to only 10% when the auditory brenstem reponse was monitored in tumors 1.0 cm to 2.5 cm. Interesting I thought. I think now I'll ask if he will be monitoring the direct eighth nerve during my surgery!
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Hi Rich,
There are advantages and disadvantages to all types of surgery. I know they monitor the nerves during surgery at House.
According to data, tumors under 2 cm have a low rate of permanent facial paralysis. That is what I found in my reading.
You are asking your doctor thoughtful, analytical questions.
That is exactly the type of perseverance needed.
Now talk to a doctor that does Middle Fossa and find out their side and why they do that over retrosigmoid. Again, according to data, retrosigmoid may have a higher risk of headaches afterword. Keep studying your options and asking lots of questions.
I know that I learned something from every doctor visit. BTW, there is a list of questions at www.anworld.com
Best of luck,
Kindest Regards,
Kate
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Well I spoke with my doc and he advised against radiation because of my young age (30) and the fact that if the tumor continues to grow it will cause more complications for the neurosurgeon during surgery because of the microscopic scar tissue it leaves. It would then increase all of the risks of side effects post surgery. Also in some cases the tumor becomes molignant (not good).
He told me the middle fossa approach is similar to the retrosigmoid approach but is usually doctor preferance. He said it does have some advantages to hearing preservation but at a greater risk of permanent facil poralysis and a risk of post op seizures. He does not do that method and said it was in fact abandoned by neurosugeons some time ago but then recently was brought back.
I did some research and found a study conducted by my doctor in which hearing preservation was attempted during retrosigmoid resection while monitoring the direct eighth nerve response and the auditory brainstem response. The study showed that 35% of the patients hearing was saved when they monitored the direct eighth nerve reponse as opposed to only 10% when the auditory brenstem reponse was monitored in tumors 1.0 cm to 2.5 cm. Interesting I thought. I think now I'll ask if he will be monitoring the direct eighth nerve during my surgery!
Here is some information about the middle fossa surgery vs the retrosigmoid to continue the conversation. Again, I emphasize to now seek the expert opinion of another surgeon to crystalize all of the data.
# Middle fossa
This approach will be used to attempt hearing preservation. Statistics show that the better the hearing one has ahead of the operation the better the chances of good hearing preservation. The location of the tumor on the superior nerve vs. the inferior nerve is better. The HEI website, www.hei.org, states that "In patients with small tumors who have been operated by the middle fossa approach since 1992., good hearing has been preserved in roughly two thirds of those patients. Any measurable level of hearing was preserved in 80%." It has higher hearing preservation rates for tumors under 2 cm than retrosigmoid. From the HEI website, it states that: "95% of 380 patients undergoing MF maintained excellent facial nerve function. Only five percent suffered minor weakness of facial nerve function."
The incision is made in front of the ear by creating a bone flap. There is an unobstructed view of the entire IAC with this surgical approach. This allows complete tumor removal. The middle fossa approach is performed by lifting of the temporal lobe of the brain. This approach is not recommended for patients above 60. At House Ear Institute, in a review of 500 cases with several years of follow-up, they identified only one case of residual tumor (0.2%).
# Retrosigmoid (suboccipital)
This approach is used to attempt hearing preservation. Success rates vary from 30-65% in CPA tumors smaller than 1.5 cm with good hearing and limited involvement of the IAC. However a tumor extending to the fundus is a contraindication to the RS approach for hearing preservation. The tumor removal is accomplished with mirrors.
Also reported is a "10% incidence of severe postoperative headaches" with this approach (Sliverstien et al, 1991) cited in Brackmann's paper.
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Kaiser San Diego is an EXCELLENT option with very skilled surgeons!!
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Rich,
Please be cautious of doctors that negate other treatment options (i.e. radiation). If the doctor was merely presenting the claim that it would be more difficult to operate on a radiated tumor and not inflicting bias in this claim, that is fine. I was diagnosed with an 8mm AN back in June of 2001 (I was 31 years old at the time). I chose to have FSR at Johns Hopkins in October 2001 and unfortunately, my tumor grew to be 1.5 cm. I did have to have the tumor removed (via translab approach in Jan. 2005) and found a surgical team (neurosurgeon and neuro-otologist) that I was confident in to do the surgery. I took issue with my neuro-otologist because during my initial consultation with him, he negated my previous decision to have FSR. Inflicting this type of unecessary bias was out of line and unprofessional. When I met with my neurosurgeon, I was not scolded like a child, but presented with an overview of what complications may or may not arise during my surgery due to previously having FSR. Luckily, NO complications arose during my delicate surgery and the neurosurgeon was able to successfully remove all of my tumor without harm to any of the nerves that were wrapped around it.
Please note that just because a tumor is "extracted", there is no 100% guarantee that it will not grow back (if someone can show me the statistics proving otherwise, please do so). I don't live in fear that it will grow back and I just live my life just as I lived my life after FSR thinking that the radiation stifled the growth of the tumor. Bottom line is that treatment for an AN is a very personal and challenging decision. You need to arm yourself with as much information as possible, choose an option that best suits YOUR needs, and work with professional and skilled medical professionals who will provide sound information and not BIAS. All the best to you during a challenging time.
Regards,
Angela