ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: Mei Mei on December 21, 2009, 07:13:12 pm
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Well I went to see the Neurosurgeon for the first visit today and he was nice and informative and took his time with me. He recommended surgery over radiation and said they no longer do Middle Fossa. Middle Fossa was just recommended two weeks ago by Dr. Friedman at the House Instittute but anyway I looked at the literature and found the Retro Sigmoid approach to be a good surgery to save my hearing as is the Middle Fossa. I am so confused. I do trust this doctor and his advice and I am sure that is the bottom line. I saw that Jim had this surgery and came out fine. The doctor did say that my prior surgery to save my recurrent laryngeal nerve in 1989 was at stake and might be a problem and that I might have problems swallowing after this surgery. Here's hoping I will come through this OK on Jan 12th.
Mei Mei
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Mei Mei -
some docs do the mid fossa approach, some don't. My neurotologist basically does retrosigmoid and translab, so those were my choices. Because my hearing was diminished at the time of my diagnosis, mid fossa didn't make any sense in my case, I chose retrosigmoid.
Mid fossa typically gives the patient the best chance of saving the hearing, followed by retrosigmoid, followed by translab.
So, if your hearing isn't currently an issue, and you want to have surgery, IMO you should find a doctor who does mid fossa. Retrosigmoid may or may not allow you to keep your hearing. I had retrosigmoid and "ended up fine" but I lost the hearing in my AN ear and am now SSD (single sided deaf).
If the Jim you are referring to is Jim Scott, I can't recall the surgical approach he had, but I believe he is SSD also. But other than that he is fine too.
Jan
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From what I found while doing my research prior to my middle fossa surgery, is that the middle fossa is supposed to give you the best chance for hearing preservation. Unfortunately, it also puts the facial nerve at more risk then the retro approach.
I ended up loosing my hearing even with the middle fossa approach. I also suffered from delayed facial weekness from 5 days after surgery until about 23 after surgery. My face is now about 95% back to it's full function.
I've gotten to personally know 7 people who have had the middle fossa approach counting myself. Out of us 7, 2 had their hearing preserved.
Hope this helps.
Mike
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I agree with Mike. The tumor location is also a factor. Mine happened to be as far as you can get into the IAC, up against the cochlea. I chose Middle Fosa because it gave me the best chance of full access to the AN and also for hearing. I had to travel for this because I wanted someone who did LOTS of Middle Fosa surgeries as the risk is increased for facial nerve. I did not preserve my hearing, but the location, once they opened me up, showed me I would have lost it regardless of the approach I chose (stuck on small artery between cochlea and hearing nerve). Dennis (DR) and Jaylogs just had their hearing preserved with Middle Fosa. Unfortunately there are no guarantees and they often don't know until they open you up exactly the location of the AN (all my tests indicated it was on superior portion - 9 doctors, both neurologists and neurontologists, felt this was the case, but once open, the darn thing was on the inferior and you have less a chance of hearing preservation when it is on the inferior portion of vestibular). I would just make sure you get numbers of surgeries for Middle Fosa if you choose that one. Locally many dr. did not do this and the ones that did only did about 10 a year - I went to HEI where my doctor did 60+ Middles a year. Whatever you end up choosing for treatment, you want experienced drs.
Cheryl
:)
Good luck! I know it is confusing but take your time and the answer will come to you.
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As with all things AN results will vary.
See this recent thread http://anausa.org/forum/index.php?topic=10881.0 and also check out the link in Steve's reply. We did an informal survey on the Forum before.
There is also an informal survey on hearing retention and retrosigmoid surgery http://anausa.org/forum/index.php?topic=6222.0
Hope this helps.
Jan
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Thanks everybody for all your replies and input. I've read them all. It still feels like rolling the dice both ways because like they all say each AN is so individual. Mine is totally in the canal and is small at 1 cm x 1.6mm. He was concerned about a prior surgery I had 20 years ago on my vocal cords for a paralysis and that this surgery might cause swallowing problems. He really has to do a good job of isolating all the nerves in this surgery; he seemed pretty confident, but i'm still worried and have reason to be. Can't wait until this is all behind me. Thanks, friends.
Mei Mei
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Mei Mei,
I'm very sorry to hear about your issues, keep your head up and I'm sure you'll pull thru just fine.
I too have a similar issue as you and I am also in the early stages of dealing with it. In May of 2008 I had a neuroma removed from the left side that originated from the 10th cranial nerve. As a result of the surgery I now have partial vocal chord paralysis and I too had some dysphagia issues following surgery. Because I am still in the early stages of testing with my AN Dr. we have not yet discussed the effect surgery may have on my swallowing ability. I think that I will be OK as the AN is on the same side as the other tumor so the 10th nerve is already severed and my body has learned to adjust but it is still on my ever growing list of questions to ask before I make a treatment decision.
I wish I could offer some advice, but you and I are in the same boat as it were. I can offer you my thoughts and hopes that everything goes smoothly. If you ever want to compare notes I'm more than willing :)
All the best,
Kevin
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Oh, my Kevin. I don't know what boat we are getting into. It certainly isn't the good ship lollipop. I sure wish it were. I'm not looking forward to this at all. I am swallowing fine right now and want to keep it that way. The name of the doctor for the vocal cord paralysis is Dr Roger Crumley at Univesity of California at Irvine just south of LA. You have to stay there 10 days and I stayed in the dorms during the summer. This was back in 1989. It took 5 years for the nerve to re innervate and I still have trouble walking quickly and up hills. It's a bummer.
Keep in touch.
Take carel....
Mei Mei
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Mei Mei ~
I can readily understand your growing confusion when various alternatives are presented to you by seemingly competent doctors. I'll offer you my experience, but it is only one person's experience with one doctor, albeit a very skilled doctor with a sophisticated background (Yale Medical School instructor) and 30 years experience removing acoustic neuromas without damaging the patient's quality of life. Frankly, Mei Mei, I don't even know if this will be helpful to you - but I'll offer it, anyway, in the hope that it might give you some guidance.
I underwent retrosigmoid approach (the formal, technical name for it) AN removal surgery in June, 2006. It was performed as a 'de-bulking' (partial resection) surgery, intended to cut off the tumor's blood supply and render it small enough to radiate. 3 months later, I underwent 26 FSR treatments to destroy the remaining tumor's DNA. So far, this approach appears to have been very successful. My neurosurgeon was highly skilled with decades of experience operating on ANs. He planned the surgery around my strong desire to avoid facial paralysis, if possible. My tumor was quite large (4.5 cm) and pressing hard on my brain stem. Unfortunately, because the AN had grown so large (I ignored my symptoms far too long) my hearing in the affected ear was no longer functional. The surgery did not improve it, and I didn't expect it to. However, the 'retro' surgery was otherwise spectacularly successful. I emerged from the anesthesia with only a very temporary case of 'double vision'. No facial deficits, no swallowing issues, not even nausea.
Today, 3½ years out, I'm doing very well. I have no trouble coping with my SSD, my balance is quite serviceable and I have no real post-op/radiation issues to speak of. A very, very slight case of 'dry eye' which doesn't even require using eye drops - just some rapid blinking (that I can do) and rest. I have a very small 'numb' spot on the left side of my tongue that I simply ignore and the left ('AN side') of my face is, perhaps, 10% less sensitive than the right side, but this doesn't present a problem. I can shave with no trouble and can still feel the wind on my face. My smile is completely normal. Frankly, I consider myself blessed.
I give the credit to God and my surgeon, in that precise order. Even my surgeon readily admitted that I was 'close to a miracle' with my excellent recovery. He told me I was in the top 5% of his AN patients in terms of the surgery/radiation being successful and with not having any real post-op issues to deal with. We share a mutual respect; I for his skills and compassion (he listened to my concerns and did something to address them) and he for my cognizance of what I expected from him and my recuperative powers, which he said were 'amazing', although others have recovered even faster. Still, I'm very satisfied with my surgery, radiation and recovery. Who wouldn't be?
I can only hope that my experience is encouraging to you, may give you some direction and, of course, that whatever path you chose, your outcome equals or exceeds mine. :)
Jim
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Dear Jim,
Thank you so much for your thoughtful post and explanation of your experience of your Retro Sigmoid surgery. I was looking forward to hearing from you as I knew that you had this kind of surgery. I had a rough day today because the Neurosurgeon's secretary called to say my pre-operative chest x-ray showed a nodule on the right lung and that I needed a CT Scan done right away. So I have this to worry about in addition to the AN. Now I have to see a Pulmonologist. The offices are all closed over the holidays, but I will get this done next week. My daughter is also going into labor with her second child which is a pleasant distraction.
Your POST and successful outcome over the past three years have cheered me on and made me feel better as have Dr. Tamargo's final words that he was sure that I would do well in spite of the risks at hand...after all I have a 1 cm. tumor and that is still considered small compared to most and the location is entirely in the auditory canal an blocking it completely...I like you want to save the facial nerve so will email Dr T. about this on Monday.
Thanks, Jim for your thoughtful and thorough responses.
Sincerely,
Mei Mei
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I think what Dr T meant when he said "they don't do middle fossa anymore" is that specifically at Hopkins they only do retrosigmoid. Different surgeons are going to have different ways of doing surgery that make them more comfortable/they have more experience with.
I think I already emailed most of the details of my surgery and recovery to this point, but feel free to add any questions if you think of more! The chief of neurosurgery at University of Maryland also specializes in ANs so it may be worth getting a second opinion from him if that's something you want.
Sorry to hear about the lung issue and hoping it's just nothing!
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Dear Nikki,
Yes, I went to the University of MD to see ENT doc there and he recommended the Middle Fossa and also suggested radiation and a neurosurgeon that does both there.. I also sent all my records out to House and Dr. Friedman recommended Middle Fossa. The Logistics of going out to LA are just too great for me and I feel comportable with the docs at Hopkins, I'm just not liooking forward to going through the next month or so. I know it's not going to be easy and I have to manage my Dad and the aides in the house and the Giant Pea Pod food shopping.
I do hope that the lung is OK. The radiologist is not in to read the scan until Monday and Dr. T is not in until Monday either. My daughter is starting to go into labor...slight pains and difficulty walking. Looks like she'll have a Christmas baby. It'll be a nice distraction from thinking about the AN and the new lung issues.
Take care ....and thanks for writing!!!
Mei Mei
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Hi Mei Mei,
I haven't been on the forum for many months.... life has been busy... but I just wanted to share that 2 1/2 years ago I had a middle fossa surgery at Oregon Health Science University . My tumor was very small (about .4cm) so my doctor wanted to do the middle fossa approach because he said I had about an 80+ % chance of keeping my hearing. Instead I lost all my hearing in my left ear and have some facial paralysis still remaining - although it is MUCH better than it used to be. I wish I would have done more research before my surgery but I didn't know about the forum until a couple weeks before my surgery . This is a hard decision to make (I know that I am not the only one to have lost lots of sleep when I was trying to make a decision of what to do). My doctor did a good job - but he did tell me he hadn't done very many middle fossas and now I wish I would have done more research before surgery. Maybe gone to someone who had done more middle fossa surgeries .... maybe my chances of keeping hearing would have been better....but then again things could have been worse. My point is research all you can, pray about what to do and then make the choice that seems right for you.
I will be praying for you about this and the lung thing.... and for that grandbaby on it's way too .... of course baby may be here by now :D.
Remember life is good and no matter what you decide to do and whatever your outcome is - the people at the forum are here for you. We have had to make these decisions and deal with the fears too.
I hope you had a special day today,
marg
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Dear Marg and Everyone ... who is out there having the kindness and interest to read this,
My surgeron said he's done 400+ AN surgeries. Does that count for a lot? For a single surgeon? I think it does. The people at House do thousands, but then that's a lot of surgeons doing thousands. This is one man doing 400+
Those are bad odds for you to have lost your hearing for such a small tumor. I'm really sorry for that. It shouldn't have happened at all. That's why I say it's like rolling the dice. Middle Fossa is supposed to guarantee you your hearing and then you find out so many who have come up to the contrary.
Well I have a new granddaughter born at 2:45 pm today weighing 8 lbs 4 ozs. She is of course beautiful and the volunteers made a bright red knit cap with green holly for the season. Ani had an easy delivery; one push and she was out. The doctor almost didn't make it into the room and the nurse was afraid that she might have to deliver the baby...whew! Second babies are easier.
This baby is a big diversion from my worry over the Middle Fossa Retro Sigmoid Dilemma, but since my surgeon says they no longer do Middle Fossa, I'll have to stay focused on the attributes of the Retro and put my faith in that. I wonder what it feels like to have a plate in my head.
Do you feel it in your head? Do you feel it under your scalp? I have been wondering that ever since he told me that I was going to have one. It's a strange feeling coming down the pike.
Mei Mei
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Mei Mei .....
Congratulations on the new grandbaby! Our youngest granddaughter is 10 months old. We just spent the week cuddling and playing with her ..... what fun!
I had retrosigmoid almost two years ago with no complications. I have about 20% hearing remaining in the AN side ear and no headaches. I do have ongoing balance issues when I am very tired and rather pronounced tinnitus when I think about it.
I am a little puzzled about you being told you will have a plate in your head. Only a small hole is made in the back of the skull. In my case, the hole was covered with titanium mesh ..... no plate.
400+ surgeries over one year vs. over 30-40 years would make a difference as to experience but at least the surgeon is not a "newbie" at AN removals
Clarice
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Mei Mei -
congratulations on the new grandbaby ;D
It sounds to me like your surgeon has plenty of experience.
I had the retrosigmoid approach and everything turned out well for me. My only lasting issue is SSD and I got a BAHA implant that has helped immensely with that.
The plate in your head will be very small - my neurosurgeon described the hole in my head as a "window" and basically made a little box with his fingers by touching the tip of his index finger to the tip of his thumb. I have titanium mesh, titanium screws, a titanium plate, and belly fat in my head from my AN surgery - plus a titanium abutment and rod from my BAHA surgery and I can feel none of them. No one realizes they are there either. Don't stress.
Jan
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Dear Clarice and Jan,
Thanks for your replies. I guess he's had 400+ AN surgeries total but I'm not sure if he said in a year or not. I'm also not sure if he said plate or mesh now. Now I'm really confused. He did say Titanium and that I would set off an alarm at the airport. I should have taken notes or brought a tape recorder. Well now I'm less stressed at least now that I've received your post that you have Titanium in your head and don't feel it. It's comforting to hear from you.
Sincerely,
Mei Mei
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He did say Titanium and that I would set off an alarm at the airport.
Mei Mei -
titanium will NOT set off the alarms @ the airport. I know this for a fact - I've traveled by airplane (via O'Hare Airport) numerous times since my AN and my BAHA surgeries and I've never "beeped". I have lots of titanium in my head.
Jan
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Dear Jan,
Well, that's good to know. I wonder why the doctor told me that? Now I'm really curious. I guess I'll be emailing you a lot after the surgery about the BAHA and your new hearing aid should I lose my hearing in the surgery. I now have a 35dB loss and want to hold it at that.
Talk with you later guys!!
Sincerely,
Mei Mei
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I also have titanium in the noggin' and have traveled through numerous airports post retrosigmoid surgery and never have set off any detector. My doctor did give me a letter just in case, but I haven't needed it.
Patrick
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Hi Patrick,
Sounds like you are all proving my doc wrong about the bells and whistles at the airport.
About the SSD and tinnitus I noticed in your signature. May I ask how you can hear it if you are deaf in that ear; then you can still hear at least the annoying tinnitus which I can hear. Are you totally deaf on that side?
Sincerely,
Mei Mei
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Mei Mei,
Good question...I had the same question for my doctors. Yes, I am totally deaf on the AN side (confirmed by my audiologist) as the hearing nerve was too involved with the tumor when it was removed. The only thing I hear is the tinnitus on the AN side.
My neurotologist explained that sometimes the brain (in absence of receiving normal sounds to transmit) will make up its own noise in the form of tinnitus. I was hoping that with the hearing nerve being totally shot, the tinnitus would go away, but in my case it actually got a little stronger after surgery. However, I can block it out most of the time and it doesn't usually bother me or affect my family or work life. The tinnitus does tend to get louder in noisy environments, at least for me.
Patrick
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Thanks, Patrick,
I appreciate your clarity as with every question I have more question. It really is hard to live with and I was hoping it would go away with the deafness. Thank you for the explanation.
Sincerely,
Mei Mei
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Mei Mei,
For me, it has not been hard to live with. Like I mentioned earlier, the only time it annoys me some is in noisy environments like loud restaurants.
Patrick
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Dear Patrick,
This is comforting...I'm hoping to hang on to most of my hearing . The countdown to Jan 12th is getting closer and closer.
Sincerely,
Mei Mei
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Just replying to Patrick's post from awhile back before my surgery. I am now SSD on the right from the surgery and like Patrick the tinnitus is much louder in the deaf ear. I am at home now so it's OK but sure wish it would go away. This is something I will have to talk about with the ENTs on the Feb 22 visit. They are suggesting me for the BAHA. Does the BAHA help with the tinnitus as well?
Sincerely,
Mei Mei
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Does the BAHA help with the tinnitus as well?
Hi,
I obviously can answer only for myself, but my BAHA has no effect whatsoever on tinnitus -- it makes it neither better nor worse. I'm fortunate that my tinnitus, while constant, is of the "it sounds like a seashell held to the ear" variety and it doesn't bother me terribly.
I will add that while I've never known of a BAHA wearer who feels that the BAHA makes his/her tinnitus more bearable there may be some who disagree.
I will also add that the BAHA offers lots of advantages -- so please don't stop considering it just because it may not favorably impact on your tinnitus. And remember that others on this forum have spoken very highly of the Trans-Ear, (and, to a lesser degree) the CROS system, and the yet-to-be released SoundBite. I'm betting that none of these helps tinnitus either, but maybe others will chime in with their comments.
Catherine (JerseyGirl 2)
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Thanks Catherine, I've been wondering about this ever since I came home last Sunday and I know I have a long way to go before the BAHA surgery but it is on my mind. My tinnitus is the ocean in the sea shell variety. This is exactly how I explain it to the doctors and audiologists when I am visiting them. It's just much louder than before the surgery now that I am deaf there. Thanks for the reply.
Mei Mei
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Mei Mei -
I am one of the lucky minority who don't have tinnitus.
I asked my neurotologist about it pre-BAHA because I didn't want the implant surgery to suddenly cause me to get it.
He told me that BAHAs usually don't have any effect on tinnitus. If you have it pre-implant you will continue to have it after the surgery; if you don't, you won't.
He also said that the BAHA implant won't make tinnitus better or worse.
I agree with Catherine that the BAHA has many advantages, so don't let tinnitus dissuade you from getting one.
Jan