ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: Phillies on May 23, 2011, 08:23:13 pm
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After spending enough time figuring out if radiation or surgery was best I concluded that surgery was nest for me after getting a number of opinions. Georgetown in DC and Selesnick and Sisti in NY all said surgery via the retrosig approach. My hearing is good and they all thought it was worth trying to save even though the odds are poor. I thought it was all figured out until I got a call from the House Clinic. They reviewed my MRI and thought the translab was the best way for me since hearing preservation is so low and there is less risk of facial issues and chronic headaches with translab. The NY doctors didn't think there was any increased risk doing retrosig. And Dr. Sisiti said he couldn't do a translab in good conscience knowing I have good hearing. Now I'm confused :(
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Sorry Kiddo, this decision is almost as hard as the radiation vs surgery decision.
Retro sigmoid surgery is entry behind or below the ear, and aims to preserve the hearing apparatus and the hearing nerve while removing the tumour. I had surgery in Canada with a surgeon who does retro sigmoid. He spent considerable time explaining to me that he uses this technique combined with nerve monitoring to preserve facial nerve function and NOT manipulate the brain at all. He lets gravity move the brain once the CSF fluid is drained from the skull. Most retrosigmoid techniques are similar, though I can't speak for or to any of the surgeons. My surgeon told me quite frankly, his patients don't suffer headaches after surgery, and sure enough, I don't.
Translabrynthine also preserves facial nerve and has less manipulation of the brain by removing the apparatus of the inner ear. I made a decision based on the research I had done, and because I wanted to preserve my hearing. BUT I didn't have nearly as many choices of surgeons as you have in the US.
I also consulted with House and was booked for surgery with Dr. Friedman when I discovered my surgeon (thank you Adrienne). Had it not been for finding my surgeon, I would have had surgery with Dr. Friedman.
The choice is tough and one only you can make based on the information you gather, and for what you find in your heart is best for you.
Good luck.
Nikki
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Phillies -
it's a personal choice. I had the choice of retrosigmoid or translab (or radiation). I chose retrosigmoid because even though I knew the odds of saving my hearing weren't great, I at least wanted to say we (my surgeons and I) tried. I had decent word recognition and didn't want to just throw that away automatically through the translab approach because I felt I'd always wonder "what if".
Long story, short. My hearing nerve was wrapped around my AN - something that can't be viewed in an MRI - and it had to be "sacrificed". In other words, I ended up SSD.
Am I sorry I gave retrosig a shot? No, not ever. I took a gamble and I lost, but I've always been glad I took that gamble.
As for headaches and/or facial paralysis being side-effects of retrosigmoid, it all depends. I had very slight facial paralysis for 1-2 days post op; a single dose of steroids cleared it up; it never returned. I've never had headaches associated with my AN or my AN surgery, and I'm almost 4 years post op.
Others have had other experiences; this is just mine. We're all different. You need to weigh the pros and cons of the opinions of all the doctors you consult with, and then decide what you are most comfortable with; that is, what are you willing to gamble.
No one can guarantee you will or won't have a specific side-effect or side-effects. Some things you just don't have control over and while docs can give you their best guess as to what your end result will be, it may or may not be relevant in the end.
Jan
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Phillies...I know what and how you are feeling. I too had surgeons recommending Retro Sig but House (Dr. Brackmann) suggested Translab.. Yes..it is VERY confusing! I had perfect hearing in my AN ear and I too wanted to have hope that I may have some hearing post-op. Even though I knew prior to surgery that I may not have hearing post-op I was still optimistic. But it wasn't to be. For a lot of people in the forum being SSD is not a big issue for them but for me it is huge. It was a big letdown. As I'm sure you have read each persons outcome is different. Sometimes you do have to stay away from the forum and clear your thoughts. There is SO much information and experiences here that I became overwhelmed. Good luck in your decision making process as we all know it is a difficult time.
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Yes, what everyone says is, as you no doubt have figured out by now, that deciding on WHAT kind of surgery is almost as bad as deciding on a procedure. I had a lot of options and it was Dr. Brackmann at House who suggested (and he was the ONLY one) to go middle fossa. He thought that my hearing could be preserved. So I went in prepared for the worst, and yet I did come out with some hearing...enough that I can tell which direction something is in, but not good enough to understand much. So to me that's still a bonus, and I'm getting a BAHA to help with the hearing so it's a win-win. So whatever you decide on, and if it feels right, then THAT is the right decision! I hope you find something that will be good for you, and then hopefully you find peace with it! Good luck and let us know what happens!
Jay
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My understanding is that surgeons will recommend whatever approach they feel more comfortable with, given the specific situation. I had the same surgeon as Nikki (opp2). I didn't have useful hearing worth saving to begin with - but this surgeon specializes in retrosigmoid. In his view translab exposes too much of the facial nerve at once, thus putting it in more risk when the tumor is large. I didn't dispute the choice of approach, since I had decided that this was the surgeon that I wanted to do my surgery, therefore I trusted whatever recommendation he had. My point being that another way to look at this decision is to choose the team you are most comfortable with and then go with the technique that they are more confident with.
That being said, I don't underestimate that going from full hearing to not hearing (which is guaranteed with translab) is probably much more difficult and needs a period of adjustment, compared to my situation where I was used to significantly reduced hearing. I would ask all the surgeons what are THEIR (not the textbook) statistics for hearing preservation/facial nerve weakness vs. paralysis etc, when using the specific approach that they recommend.
Marianna
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Have to weigh in here .....
Yes, Marianna is correct, up to a point, that doctors will often recommend the approach with which they are most comfortable. However, the specific location of one's AN is a huge factor in the recommended approach. If the tumor is still completely within the IAC and closer to the cochlea, with or without pre-op hearing loss, the ability to save the hearing during surgery of any type is greatly reduced. If, on the other hand, the tumor has extended towards the brain stem and farther away from the cochlea, mid-fossa or retrosigmoid approaches have a greater chance of hearing preservation. The size of the tumor is, of course, also involved in all of the recommendations.
I know for a fact that the team of Friedman/Schwartz at HEI do all three approaches on a regular basis. So, when they recommended translab for me I was confident in their recommendation ..... but I did ask why they recommended it.
Everyone should question any doctor's recommendation to be satisfied that the reasons given make sense. As Jan said, sometimes it boils down to your own personal preference. No doctor can guarantee hearing preservation pre-surgery, just give it their best shot. MRIs are good, but only so much can be seen on them.
Clarice
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I had multiple consults. Minn. Mayo Clinic wanted to do retrosigmoid. The docs told me there was a significant chance I would suffer from headaches the rest of my life. They told me there was a 50/50 chance of saving my hearing. I spoke with House (Brackmann) who said by viewing my MRI there was no chance my hearing could be saved by the way the tumor was wrapped around. I also had no functional hearing that had already been determined by the 3 hearing tests I had already had prior to surgery. So I definitely understand how confusing this is for you. SSD does take getting used to, but otherwise I am fine. I can't tell you what decision to make but all of the literature that I have read states that retrosigmoid does have a greater possibility of life long side effects. Good luck to you:)
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The House Clinic mentioned chronic headaches as a reason for the Translab but the other 3 doctors I saw who wanted the retrosig said nothing about the headaches... ???
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For a lot of people in the forum being SSD is not a big issue for them but for me it is huge. It was a big letdown.
Christine -
becoming SSD was a big issue for me; as you say, a big letdown. It actually caused me to be depressed for 9 months - until I had a BAHA implant.
If you continue to find yourself miserable being SSD, try a BAHA demo or look into a TransEar.
Although you'll never regain your hearing, there is help out there.
Best,
Jan
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I thought I would chime in on this subject. My wife was found to have a 3.1 cm AN two months ago. I consulted with both House Ear Clinic and with Dr. Sisti at Columbia.
I spoke with Dr. Friedman who was very helpful and went out of his way to review our options. Dr. Friedman recommended without question a translab approach due to the
size of the mass and to obtain early identification of the facial nerve along with reduce possible issues such as headaches. We spoke on the phone for more than 20 minutes and
reviewed my wife's case. From our conversation, there is no doubt that at HEI they do the most AN surgeries spread over the different ENT surgeons and for them it is definitely
"routine" in their treatment algorithm. Our concern was travelling from East to West coast and leaving the kids behind for the 2 weeks or so.
We met with Dr. Sisti and he was excellent as well. Very nice, patient and definitely an authority on acoustic neuromas. My wife still had usable hearing in her affected ear and
Dr. Sisti recommended a retrosigmoid approach with the "miracle" possibility of maybe sparing her hearing. Dr. Sisti as well sees and operates on numerous AN patients each year
and also offers gamma knife thearpy as well which he uses for many of his patients.
We went with Dr. Sisti as my wife and I were very comfortable with his approach and his treatment philosophy which was to remove as much as possible of the neuroma but
stopping if there were any signs of other nerve damage or involvement intra-op. In addition, Dr. Sisti has an excellent reputation as a neurosurgeon all around.
My wife had surgery yesterday and all went well. Dr. Sisti removed all but a sliver of mass attached to the facial nerve. My wife woke up with no facial paralysis or headache.
Dr. Sisti said that he couldn't save the choclear nerve definitively for hearing due to neuroma involvement, but my wife thinks she still can hear (although less than pre-op) in her affected ear.
Again, you can't go wrong with any well trained and experienced surgeon who regularly treats patients with AN. Obviously, with more numbers comes a more routine and familiarity with treatment for the surgeons. The HEI may prefer translab more than retrosigmoid because that is their approach that they are most comfortable with that provides the best outcome with the lowest risk for their surgeons. Dr. Sisti does all approaches as well, but I suspect that as a neurosugeon, he has the most experience with a retrosigmoid approach for this size of mass and location which was completely fine with me. As a physician myself, I felt that both Dr. Friedman and Dr. Sisti were excellent surgeons and both had strong interests and vast experience in treating patients with acoustic neuromas.
Hope this helps and best of luck.
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Thanks for your insight. I also have surgery via the retrosig approach scheduled with Dr. Sisti in mid July. I'll probably sent you a pm with some more questions when I get the chance. Glad everything went well. Did the Dr say how long it will take for her to recover? Dr. Sisiti was confident he can having me driving in 2 weeks and back to work in 3-4.
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Dr Sisti mentioned about the same timeframe - 4 weeks before feeling completely normal again...
Or for my wife, 3 weeks and 6 days!!
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Phillies ~
After reading the response from 'AAANJ' I felt that I should offer my experience, for whatever that might be worth.
In May, 2006, I was diagnosed with a 4.5 cm AN. I had one tentative consult with a local neurosurgeon but he was clearly inexperienced with ANs and seemed intimidated by the size of mine, so I thanked him for his time and went elsewhere. Without boring you with a lot of detail, the second consult I had was with a 60ish, respected neurosurgeon that had decades of experience performing AN surgeries. He offered me a plan to use the retrosigmoid approach to 'debulk' my large AN ("to spare the facial nerves") and sever it's blood supply. He planned to team with a radiation oncologist to 'map' the remaining tumor and employ FSR to destroy it's DNA. We went ahead, just a week later. Long story short: the surgery was a complete success and I suffered no headaches or facial paralysis. Not even facial weakness. I resumed driving - with my doctor's approval - in just under 2 weeks from the day of my surgery. 90 days later, I underwent 26 FSR sessions. They were tedious but otherwise uneventful. Again, no headaches or any other issues. I was SSD when diagnosed so I had no illusions about regaining my hearing in the affected ear. It's now 5 years later and I've had no recurring symptoms. My last MRI (2008) showed tumor necrosis and the beginnings of shrinkage. My neurosurgeon is delighted and said I'm in the top 5% of his AN patients in terms of complete, problem-free recovery. Obviously, I'm just as satisfied as my doctor. I do everything I did prior to my diagnosis. I consider myself blessed and I can only re-emphasize the often mentioned point that having a doctor with vast experience in AN procedures is critical to stacking the odds in your favor for a good outcome. I think you have such a man in Doctor Sisti and I'm confident you'll enjoy an outcome similar to mine.
Jim
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I thought I would chime in on this subject. My wife was found to have a 3.1 cm AN two months ago. I consulted with both House Ear Clinic and with Dr. Sisti at Columbia.
I spoke with Dr. Friedman who was very helpful and went out of his way to review our options. Dr. Friedman recommended without question a translab approach due to the
size of the mass and to obtain early identification of the facial nerve along with reduce possible issues such as headaches. We spoke on the phone for more than 20 minutes and
reviewed my wife's case. From our conversation, there is no doubt that at HEI they do the most AN surgeries spread over the different ENT surgeons and for them it is definitely
"routine" in their treatment algorithm. Our concern was travelling from East to West coast and leaving the kids behind for the 2 weeks or so.
We met with Dr. Sisti and he was excellent as well. Very nice, patient and definitely an authority on acoustic neuromas. My wife still had usable hearing in her affected ear and
Dr. Sisti recommended a retrosigmoid approach with the "miracle" possibility of maybe sparing her hearing. Dr. Sisti as well sees and operates on numerous AN patients each year
and also offers gamma knife thearpy as well which he uses for many of his patients.
We went with Dr. Sisti as my wife and I were very comfortable with his approach and his treatment philosophy which was to remove as much as possible of the neuroma but
stopping if there were any signs of other nerve damage or involvement intra-op. In addition, Dr. Sisti has an excellent reputation as a neurosurgeon all around.
My wife had surgery yesterday and all went well. Dr. Sisti removed all but a sliver of mass attached to the facial nerve. My wife woke up with no facial paralysis or headache.
Dr. Sisti said that he couldn't save the choclear nerve definitively for hearing due to neuroma involvement, but my wife thinks she still can hear (although less than pre-op) in her affected ear.
Again, you can't go wrong with any well trained and experienced surgeon who regularly treats patients with AN. Obviously, with more numbers comes a more routine and familiarity with treatment for the surgeons. The HEI may prefer translab more than retrosigmoid because that is their approach that they are most comfortable with that provides the best outcome with the lowest risk for their surgeons. Dr. Sisti does all approaches as well, but I suspect that as a neurosugeon, he has the most experience with a retrosigmoid approach for this size of mass and location which was completely fine with me. As a physician myself, I felt that both Dr. Friedman and Dr. Sisti were excellent surgeons and both had strong interests and vast experience in treating patients with acoustic neuromas.
Hope this helps and best of luck.
So how is your wife doing? Any updates? Hopefully she is doing good.. :)
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I'm happy to say her recovery has been as good as could be expected.
She was very nauseated and dizzy the remainder of the day after surgery. She basically slept the whole day. Not a lot of pain, no headache, used her PCA (pain pump) to deliver pain medicine once in a while.
Her second day saw an improvement in her nausea by the end of the day but she basically slept that day. She did get out of bed at the end of the day, was pretty unsteady feeling on her feet. Pain was tolerable, no headache.
Her third day her nausea was gone, dizziness better. She started walking, had her appetite returning. Was taking oral pain medications for incision site pain (expected) but only a few times that day. She was getting adjusted to walking with the balance issues. Really noticed this day that her hearing was gone in the affected ear. I brought the kids to visit that evening.
Her fourth day was much better, moving around better, still getting adjusted to balance change. Pain was tolerable with Tylenol or Percocet once in a while. Ate well and was discharged home after lunch. Acting much more like herself.
She's now at home, doing simple things around the house. No heavy lifting. Taking it easy. Not as sleepy, but does get tired at times. Sat outside on the porch today enjoying the good weather. No headaches. Today she only took Tylenol twice for pain.
Overall, her surgery and outcome are exactly as Dr. Sisti had predicted. My wife's a trooper.
Best of luck!
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Glad to hear everything is going well with no complications. I'm almost afraid to ask, but, did your why manage to retain any hearing in that ear?
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Oops. I must have missed that part of your post. Sorry your wife lost the hearing. How is she coping with it? I hope everything else is going ok. I will be having my surgery with Dr. Sisti on July 15
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Oops. I must have missed that part of your post. Sorry your wife lost the hearing. How is she coping with it? I hope everything else is going ok. I will be having my surgery with Dr. Sisti on July 15
My wife is still trying to getting used to SSD. She complains of just a whooshing noise in her affected ear and no headaches. She's looking forward to soundbite as an option down the road. She had her staples removed and is still improving. She will be able to drive in another week. She is moving around much better and her balance seems to have adjusted. She complains more of her IV site and arterial line sites more than her incision site for discomfort. Overall, our experience with Dr. Sisti could not have been better and we would not hesitate to recommend him to anyone else dealing with an acoustic neuroma - you will be in excellent hands.
I know it is very nerve racking waiting for your surgery date, but it does come (and quickly) and the surgery goes on and before you know it, you will be recovering and telling others how you're doing after surgery. Best of luck and feel free to PM us if any questions arise.
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I sent you a PM :)