ANA Discussion Forum
Archive => Archives => Topic started by: Kristel Peterson on June 14, 2006, 03:33:55 pm
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I have been recently diagnosed with a small an on the left side. My surgeons at the U of M are recommending the translab approach for surgery. I am wondering about the MF approach to try and save my hearing. My symptoms are tinnitus, partial hearing loss, mild dizzy spells. Any feedback?
Thanks,
Kristel
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Kristel:
If your neuroma is small you can ask Dr. Levine for a Radiology referral/consult. Gamma Knife could be an option for you depending on the location etc...
Kathy
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Hi Kristel and welcome! :)
I have to ask what size the AN is? Do you have it's dimensions and exact location? Is it pressing against the brain stem? Or, it is just in the IAC (inner auditory canal)?
I have to agree with Kathy about possibility of radio-surgery (gamma knife/cyberknife/proton/FSR) as another possibilty. Not sure what research you have done yet but you have a terrific start by asking about Trans vs. MF.
Please hang in there and know we are here for you....
Phyl
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Phyl,
You were asking about the size and location of my AN. It is considered small, pea size I believe, and it is confined in the IAC. I have done some research on the radiosurgery, and I am not comfortable with that option. The hearing loss that I have is about 40DB. (I hope I am stating that right!) I have had symptoms for a little over 1 1/2 years now, but was diagnosed just on May 1. My surgery is sched for 7-27.
Any thoughts regarding Translab vs. MF?
Thanks,
Kristel
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I also have a dilemna. I need to decide between MF and Retrosigmoid. Two different ENT's and two different opinions. Dr. at House suggests MF and Dr. and Johns Hopkins suggests retrosigmoid. What's a person to do?!! At least I ruled out Gamma and FSR.
Suzy
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Suzy why did the one doctor say retro? I know in my case translab and middle fossa were ruled out due to size, location and brain stem involvement which only left retro. It was explained to me that it gave the best option for being able to see the facial nerve and brain stem during surgery to try to minimize complications.
Kristel if you are wanting to try to preserve what hearing you have left then retro is an option too. The way I looked at it was I knew I had no serviceable hearing but wanted to option of keeping my ear nerves in tact in case new technology down the road allowed for something to be done later. I had lost all my "serviceable" hearing prior to surgery. After surgery I had total and complete ssd(single sided deafness). I regained a teeny tiny bit of sound (and I mean teeny tiny can barely hear the dial tone on the phone with it turned up full blast in a quiet room and a head set pressed hard to my ear) but it has allowed me not to have what Captain Deb calls that wonky headed feeling I had prior to the teeny return of hearing. Had I of had translab I'd not have that capabilities. I know it's not much but it did help some with some of the balance issues I'm having.
I know this is a tough decision one that was forced on me which made it easier to a degree. Please know I'm saying prayers for everyone!
Michelle
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From the research I've done about post-op complications like headache, MF seems to have a better track record than retro because they don't monkey  around (technical term?)with your neck muscles and the occipital nerve is not in the surgical field. .  Also the docs at House are really good at facial nerve preservation with MF. They pioneered this approach and are the best in the world at it. I had MF and ended up with the headaches, and I am in a very small percentage on that one, but my facial nerve was totally unfazed even a few hours after surgery. Translab does destroy the hearing, and it and both MF and retro involve removal of the balance nerve, which takes a while to get over. If I was going to opt for surgery over radiation and still had 50% of my hearing left, I'd still go with MF. And I'd choose House Ear over any facility in the world.
Capt Deb
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You all might receive this 2 times! I have no clue where my comment went! Anyway, the doctor at Hopkins said retro, which I think is the same as sub-occipital, because there is a greater chance of saving the facial nerve. The Dr at House said MF because there is better visability to see the tumor, it is shorter surgery and they said there are great outcomes. My AN is 8-9mm. I thought that sub-occipital was for larger tumors though. I like in Maryland and would prefer not to travel to the West Coast but I will if I go where the best sugery and Dr's are. I just wish I knew! I think in either case, I have good Drs but I sure wish they both agreed on the surgical approach. At least I have ruled out GM and FSR. I did meet with the radioncologist and neurosurgeons at Hopkins regarding this too. Although I was impressed, it's my belief, that radiation has to go thru good stuff to get to the bad stuff. I also just want this over and not have to get MRI's for the next several years. But, I really like the idea of not having invasive surgery. I think I will feel a whole lot better after I make my final decision....currently changes hourly!! Interestly, I have had headaches for years and that is why I originally went to the Drs. I am told that the AN has absolutely nothing to do with the headaches! Good luck to you in your decision and best of luck in the outcome.
P.S. CaptDeb - I am concerned because I see you have had headaches after surgery.
Suzy
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ONE, among many "theories" regarding my headaches, is that it was a pre-existing condition sent into overdrive by the surgery. Some people had their headache problems actually resolved by surgery. They know so little about the mechanism for migraine or cluster headaches, that the docs can't really rule out an AN causing headaches. I would advise anyone who has pre-existing headaches and a small tumor to do as much research as possible--make the size of your tumor and slow growth rate of these buggers, your ally. Be very very grateful you have time and don't make an impulsive decision. Start a notebook and start gathering information off the web. Make a pro list and a con list. Put a medical dictionary into your "favorites", you'll need it!
Captain Deb
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Suzy I had a neurologist tell me the same thing post surgery! Prior to diagnosis I had what I thought were migraines because the head pain was intense and I had trouble even getting up out of bed due to the pressure. After diagnosis I and after I selected a surgeon I complained about the head pain and was put on decadron. I realized after about two weeks that my head quit hurting. I also realized after the pain stopped that it wasn't a migraine it was a pressure and different from the migraines I normally suffered. So I will not buy into AN's don't cause headaches. Well it might not be a true "headache" but it's still a pain in my head I had! I've been very fortunate since surgery to have no headaches. I've had normal stress related take two tylenol and they're gone headaches but not what Capt Deb is having. I do have a stiff neck but also had before surgery bulging disc in c3 to c7 so can't say it was all from my retro surgery (yes, retro and suboccipital is the same thing). Have you checked on facilities in va? Nc? NY? area for treatment? You have to be comfortable in every aspect with your decision as there is no second guessing what if I did this or that....so learn to listen to your gut! Best of luck!
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Kristel,
I am really glad to hear taking a few tylenol takes care of your headaches. I wake up in the middle of the night and then in the early morning with a headache that doesn't go away until the early afternoon! Now I think I am starting to have stress headaches too because I don't know what to do about this AN. I definitely need to make a decision, schedule the appt and just get it the heck out. One of the doctors I met with said 70% of these don't even grow for 4-5 years at a time. Sometimes I think I should hold off and see what other medical advancements are in the years to come. I am a big chicken! If I didn't want to risk hearing and didn't care about feeling like I have a few drinks in me all the time I might have seriously considered it.
Suzy
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Send your MRI to House Ear Clinic in Los Angeles. They will do a phone consult. They favor middle fossa to preserve hearing when possible. The retro approach is technically more difficult and usually reserved for large tumors.
Good Luck.
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HI Kristel,
If you decide on surgery, I agree that House is the place to go. I watched and waited for 5 years, when my tumor reached 5mm x 8mm, I decided it had to go. I had no headaches before surgery or after. I only lost 10% of my hearing on my surgery side. I was back to work full time after 8 weeks. Because my tumor was small, Dr. Brackmann felt Middle Fossa approach was best. Would I do this all over again and chose the same doctors? In a heart beat! If you have any questions, please feel free to emai me. I wish you the best! Ann
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i agree with most of the above. our 16 year old (!) had his AN removed at House in February. Perfect facial nerve, mild hearing loss, no pain. He had terrible headaches before the surgery which have completely resolved. Dr. Brackmann at HEI said that trying to maintain balance with an AN puts strain on the neck muscles which can cause headaches.
Surgeons do what they're comfortable with. Ask the surgeon who recommended retro how many of each kind he does.
I strongly urge you to send your films to House.
Good luck!!!
Jim
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My headaches are the same as Suzys. With only 5 days until surgery I am hoping they are caused by the pressure on the brainstem. For now I am on pain meds and only need them at night and first thing in the morning. This AN sure has changed my life. I know I'm in good hands at House and look forward to sharing my post op story. Donna
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My turn,
Sorry, but I am going to throw a different perspective on your possible surgery.
I had middle fossa almost 4 years ago and apart from having chronic headaches since (never had any before surgery), my AN has grown back. Now my situation may be a case of poor surgeon, I don't know. I changed to the leading surgeon in Sydney who now tells me that based on a study in Denmark (I think), he is no longer doing middle fossa because of the complications and also the inability to "get a good look" at the growth. It is meant to be less invasive than Trans Lab but Trans Lab enables a better look and approach to the growth. The problem here is that Trans Lab guarantees total hearing loss in that ear. Middle Fossa will preserve the hearing you have, less a bit.
Tough choice. My specialist tells me the headaches from middle fossa surgery are due to the trauma inflicted on the muscles and bone when cutting etc.
My preference is certainly GK.
Laz