ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: vjw1218 on March 20, 2007, 11:27:10 am
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Hi, all.
On January 30, I was diagnosed with a small AN on my left side. (4mm X 7mm) After being sent to neurotologist Dr. David Eisenman at the University of Maryland, I discovered that while my tumor is very small, it's extremely close to the inner ear. I have almost all of my hearing - with the exception of some high-frequency loss that was only detected by a hearing test - and have elected the Middle Fossa surgical approach. I'm 36.
This board has been very helpful on many issues. I've read about many who had the trans lab or CK/GK treatments; but I haven't read much from those of you who've had this particular procedure.
Any input from those who've had the Middle Fossa surgery would be appreciated.
Thanks.
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hi vjw and welcome.
I do know that Capt'n Deb had middle fossa at House Ear Institute in LA. When I spoke to her yesterday, she's laid up right now with a little touch of pneumonia. Hopefully, she'll be checking back here soon. If you like, you can private email her here:
http://anausa.org/forum/index.php?action=profile;u=997
Also hoping, in the interim, others can chime in as well.
Again, welcome....
Phyl
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Hi vjw,
I had Middle Fossa approach done at House Ear Clinic. Middle Fossa approach is used when the doctors are going to try to preserve your hearing. I only lost about 15% of my hearing after surgery. Although your tumor is small like mine was, it all depends where it is positioned on your nerves. Mine was easy to remove because it was sitting on top of the nerves. Some AN's become all entwined between the three nerves (hearing, balance and facial) and is harder to remove. If you would like more info. just send me a personal email. I wish you the best on your AN journey. Ann
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hi vjw - I had middle fossa done at Stanford in 1998. The approach is generally used when the tumor is under 3cm and for hearing preservation. My hearing was perfect prior to surgery. My tumor ended up being 3.5cm and severly splaying the facial nerve, in order to save the facial nerve, my hearing nerve had to be sacraficed. Not much of my hair was shaved for the procedure and my scar is in the shape of a question mark, from behind the top of the ear to the bottom on the skull. I do have a quarter sized depression where a piece of my skull was drilled, but my hair covers it. The depression does not happen to all middle fossa patients. Belly fat was used as caulking when the tumor was removed.
When is your surgery?
Cheryl
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Hello
I also had middle fossa approach August of 2005 with a 1.2cm acoustic neuroma at the House Ear Clinic with Dr. De La Cruz and Hitselberger and they chose that approach with me because at the time I was 26 and their main goal was to preserve my hearing which they did. For your size of tumor I would recommend the same approach.
Jessica
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I had a consultation with Dr. Slattery, House Ear Clinic last week. He also recommended the middle fossa approach to attempt to preserve the hearing I have left (mild to moderate loss already).
I'm still deciding my final treatment options, but I did talk to the House Clinic Surgical Counselor this a.m. The medical team would be Dr. Slattery (Neurootologist), Dr. Schwartz (Neurosurgeon) and Dr. Stefan (Internal Medicine).
OTO
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It's great you that caught yours early without serious symptoms or losses. The better outcomes are sometimes associated with the smaller tumors regardless of treatment. However, all treatments usually do render new problems that otherwise may have taken some time to arise. Waiting and watching is a reasonable course of action considering your tumor size and having almost no symptoms at this point. If you rapidly lose your hearing one day call your doctor because sometimes this can be reversed with steroids. I didn't know this back in 03' and these boards were not so good then. If you decide to wait and watch then be sure to keep track of what's going on with your body and continue with your follow-ups and audiograms. No Doubt, one day you will need to take action but right now it seems you're still in the safe zone. When I acquired various and annoying symptoms I knew the path I was heading down and made my decision. No matter what you choose whether it be now or later we are all here for you.
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Oto:
Based upon the size of your tumor, I am wonderiing whether anyone recommended CK or GK instead of "surgery". As you can see from the bottom of this post, they do not know what I have. However, two separate doctors (one who does both GK and surgery) and the other one who only does surgery, have stated that even if my diagnosiis of an AN was "correct", they both would have not recommended any type of treatment at this point. With a relative lack of symptoms and the small size of my tumor (yours is even smaller) they would have simply done a repeat scan in a few months. As the other post has said, you have many options, and fortunately, due to the nature of AN's, they are so slow growing that you do not have to rush into anything.
Good luck.
Evan
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Evan, I was replying to vjw and not OTo if I am "the other post". I usually respond to the original thread. My name is Steve btw. :D
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Oto, House is one of the finest places to go. I am east coast and House is west coast so wasn't so easy at that time with family. It's a shame they had to be that far distance away. I spoke with Dr. Brackman once or twice and he is the nicest man.
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I also have a small AN that is close to the Cochlea. I have been told that while a small AN in the IAC is generally a good thing (relatively) having it so close to the cochlea lessens the chance of hearing preservation regardless of the treatment choice (it also makes hearing loss due to growth more likely). That being said next month I will be 2 years watch and wait. In that time my hearing has gotten better; some other symptoms have gotten worse. Overall I am happy to be waiting and am very glad I did not rush into treatment.
john
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Sorry about that Steve (even though you are a fliers fan). My advice to vjw would have been about the same. In fact his AN is even smaller than OTO's. And I think as you have stated, the one thing that we should all remember is that for the most part AN's are so slow growing that in most cases, there is no reason to rush to decide treatment options.
Evan
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No Problem & Nice To Meet You,
If I remember correctly I think 1cm. is the turning point for treatment with small tumors one size does not fit all. So many various situations not to mention mental stress. Unfortunately we gotta roll the dice at some point but certainly nothing wrong with waiting a while. Good Luck & Hope You Get Some Answers.
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Hi guys,
I had middle fossa around 4 years ago and regret that decision with a passion. My an has since re-grown. I am now in watch and wait mode.
Why my annoyance at it - I have had constant and debilitating headaches every day since the op (like Captain Deb) and the drugs - well, I have tried a raft of them including cortizone injected into the head - all to no avail - neuronting helps a bit.
My surgeon now doesn't do middle fossa due to the qty of after effects - headaches and recurrence. he advises me that middle ossa doesn't usually give you "as good a look at the tumor" as trans lab. He now only does translab and regrets the decision to ever do any middle fossa. As for hearing preservation - yeah, you might be lucky to retain some but don't count on it. I hear noise and tinnitus.
My surgeon's first recommendation is watch and wait until the tumour gets to an "impacting" size, that is, causing issues or pressing on the brainstem. he also recommends examining radiation treatment.
Everyone has different outcomes from different treatment. I have been in watch mode for 1 year now and as long as the tumor doesn't grow, I won't be touching it and then, I will be having radiation treatment.
Sorry to sound bitter but living with a sleadgehammer hitting your head for a fair chunk of every day, does make you feel, well, angry.
Laz
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Thanks to all for your replies. I should say that while my hearing hasn't been a problem, the debilitating dizziness has. Some days I'm fairly normal and some days I have trouble holding my head up. If I'm not dizzy, I have an earache. I do experience tinnitus, but it doesn't bother me. I'm not willing to "watch and wait" and live with it. It's exhausting and impacts other actvities.
I meet with the neurologist on Monday and will ask him about some of the concerns mentioned here.
Have a blessed Easter!
Valerie
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Prior to my middle fossa surgery, I was told that dizziness as the presenting symptom usually means that the tumor is on the superior vestibular nerve. The superior vestibular nerve lies at the very top of these bundle of nerves and is easily seen via middle fossa because of its "on top" location. My presenting symptom was dizziness. My tumor was 6 mm and was on the superior nerve. I had almost perfect hearing prior to surgery and lost 15% after. I am now fully recuperated -- no dizziness!! After surgery, I had very little dizziness since the "damaged" nerve was not trying to work any more and the good ear had already begun to take over.
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Larry--sorry to hear about your bad results of the Middle Fossa approach. you're the first one i've heard of with those kind of results.
vjw--I had Middle Fossa for my 8mm left AN oh my...two years ago this Sunday! wow! oh, sorry. anyway, i went to the best of the best. Dr. Derald Brackmann in LA at House Ear Clinic. I had no hearing loss prior to surgery and only slight hearing loss now. Just had a follow up test and my hearing is exactly the same as last year with high frequency hearing loss (i think it was 10-15% loss). I don't have any facial problems except a "freaky eye" that doesn't close quite right when I smile (more noticable in the cold).
Have you contacted House? They will do a free phone consultation even if you don't go there for surgery. It's really nice to talk to a doctor who knows exactly what they're talking about! Check out their website at www.houseearclinic.com.
Kristin
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Hi Valerie,
I was wondering what your final decision was and whether or not you have had surgery yet.
My surgery is next week and I'm as nervous as can be. So I would love to hear how your situation turned out.
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Hi All,
I, like Kristin, had Middle Fossa surgery last year at the House Ear Clinic in Los Angeles. I have had no issues, didn't have and don't have headaches, didn't have facial nerve damage or any other issue.
As in any medical procedure, trans lab, radiation, middle fossa, there are no guarantees. Same as in life, you don't know whether today could be your last, and if and when your time will come. There is no fail safe method of treatment, as even the wait and see approach has potential consequences, radiation hasn't been tested for long term effects, and microsurgery has other possible side effects. However, as i've posted in other parts of the forum, all you can do is research your physician, his track record and experience, the surgical procedure you are getting on the internet and through other research and publications and forums such as this one. After that you just have to take a leap of faith in your surgeon, that things will work out, that he has the experience to "cure" you, and that you won't have the side effects, which some people do have.
When it came down in my situation, I wanted the thing out of my head, didn't want to wait and see as my local ENT had suggested, and didn't want radiation in my head, which left the AN still there in the depths of my head. My heart goes out to those of us like Larry that have had bad results. However, just in this particular issue, there are many of us that have had good results, and in my case I know that if it happened again, I would do the same thing again, have the middle fossa, and use Dr. Brackmann again.
RON T.
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Ron,
wonderful news to hear on the brink of surgery - a week from today actually.
Thanks!
I just watched a great movie called "The Secret" and I don't know about the power of the mind healing us, but I do know that positive attitudes can make a humongous difference. So it is wonderful to hear your story!
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Greetings, all.
Tomano, you asked for an update and you shall have one. After meeting with both the Neurotologist and the Neurologist, I decided to have the Middle Fossa surgery and it's scheduled for June 20 - two weeks from today. Drs. Eisenman and Eisenberg with the University of Maryland will be performing the procedure and I feel confident with both of them.
I was diagnosed in January but waited until now to have the surgery because I had some personal plans and big events in April and May.
Thanks to all for your concern. I will do my best to keep you posted.
V
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Hi vjw1218,
My story is similar to yours. I'm considering middle fossa vs. CK. My tumor is small but I'm having a lot of symptoms and a lot of flucuation of hearing in that ear. It is being recommended that i don't wait, and that my hearing is fragile. I've lost my hearing acutely 2 times in the last 4 mos. but it has come back with prednisone. I would love to hear from all the people who have had middle fossa who have experienced or not experienced headaches after surgery as this is my biggest fear. My Dr. is at Standford, and I had a radiation consult, and felt like going that way. Today I had a phone consult with Dr. Brackmann at the HEI. He is very nice, but has also, (like Jackler recommended surgery) this based on my age 39, and that the long term studies just aren't out. So I'm still in the decision making process which I been in since feb. '07 and can't seem to make up my mind. I would like to hear from more people about middle fossa and their experiences. Oto, I think you recently had this surgery, how are you? I hope it all went well. I know (peg? The pirate woman had not so great luck with middle fossa. By the way thanks for your research on the headaches and tx types) I understand the chance for regrowth is about the same for either middle fossa or radiation. I can deal with ssd, and some paraylsis, but the headaches I'm not so sure about. Not sure how one continues to work to keep medical benefits and raise a 4 year old with chronic headaches. I have read some folks posts who can't even get out of bed! :'( . Any way, just wanting to hear more from people with experience in the middle fossa approach. Thanks. Ricki
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I had Middle Fossa Approach. I did lose my hearing. I do not have headaches, expect during the first few weeks. Didn't need any pain medicene after I was home for two days. In the hospital I did experience some scary feelings of like explosions going off in my head. Doctor's said it was normal. It stopped befoe I came home from the hospital. I still have balance issues. I do have some cognitive problems. I don't know if this only happens with this type of surgery. I'm sure other's on this forum can give you more info on that. Right now that is my biggest problem. It has been one year for me. I didn't expect progress to be as slow as it has been. I had to gage my progress more by the month than by the day or week, and it went from one thing to another, but with each thing getting better. I forgot also the tinnitus was very hard to get used to. Good day's and bad. Hope this help's. This was my journey through this process, and still working on it. Life does go on, and we do adjust, just some better than others. Good luck to you. BB
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Hi,
I had middle fossa surgery for a 14x10x10 right side AN two months ago with Dr. Roberson of California Ear Institute. The operation was done at Stanford and I had a great outcome. My hearing was preserved and did not have any facial nerve problems at all. The first two weeks after surgery I had dizziness and my balance was off but there was impovement every day. I felt pretty close to normal at the one month mark.
James
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I also had middle fossa w/ Dr Roberson at Stanford my tumor was 1.9 cm, I don't have any major issues that I can't deal with.I don't like the dry mouth or dry eye, but I don't have headaches so I am thankful . Its almost been 2 years.
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Hi everyone I'm a new member and trying to decide what to do since I'm becoming more symptomatic.
I'm considering the Middle Fossa Approach At House Clinic w/ Dr Brackman. I'm wondering what has been your all experience w/ this suregry and resulting migraines if you suffered from migraines on your AN side prior to surgery??
thanks---irene 7mmx6mm left AN on top of cochlearvestib app
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Irene,
I never had a headache in my life before surgery.
Although my earlier post was a bitter one (I think I'm entitled to be), there appears to be a lot of success with MF.
Laz
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Irene
had no headaches prior to surgery (retrosigmoid 5/31/07) and have none post op. Everyone is different.
Jan
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Hey all, I know it has been a while since I posted on here. Just wanted to chime in on the headaches. I had bad headaches for about 3 weeks after surgery on May 17th, but they went away. now I only really get them when I have sinus infections (or as happened the other day, a dramatic change in pressure as a cold front moved in). My "dry eye" went away as well within a month. It has been about 6 months and I feel better than I did pre-surgery (back to work as an ocean lifeguard and surfing every chance I get), and that is even though the tumor is still there. Unfortunately, the tumor was attached to the facial nerve and they couldn't get it all without doing damage to the nerve. I will be going in for ck sometime this winter.
After going through surgery, I understand now that there is no hurry when the tumor is still small. (mine was 12x10x10 and is now a little smaller) I don't know what to expect with ck radiation, but I will be happy if I never have to go through surgery again.
That being said, I know I wouldn't have been convinced pre surgery of doing anything but Mid Fossa, and right away as I was having some balance issues. (I still do, but not nearly as bad. When I get tired I seem to vear to the left a little bit now.)
I just have to remind myself that an AN is a slow growing, benign tumor. Time is something I have a lot of- time to think, time to dream, time to listen to others and myself. I still have bad days when I lay down in bed dizzy not knowing if I'll ever be "normal" again, but those are fewer and farther between.
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Have you elected to do your surgery? If so, what has been your experience? I, too, have a small tumor and am scheduled for a middle fossa at the beginning of January. Needless to say, I'm very apprehensive about this.
Erika
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OK, Here goes, This is my first post so bear with me. I had the Middle Fossa approch done 7 weeks ago this thursday. I had Levine and Haines at the Univesity of MN perform the procedure. I was diagnosed with the 6x5x5 mm AN in March and waited until work died down in the fall to have it done. I had a leak form and they had to open the lumbar drain for the leak to heal. I was in the worst pain I had ever been in for 3 days after that drain was opened. I was released from the hospital on Day 8 and off all pain medications by day 12. I have not had any headaches since the drain was closed five days after it was opened. I have had no other problems to date other than minor balance issues and fatigue. I actually was back in the office 1/2 days 2 weeks after surgery and have been in every day since after Thanksgiving. My hearing was in the top 2% prior to surgery, I go in next week for a test. I currently have some rininging in the AN ear and don't hear very well out of it to date.
I decided to do this approach after extensive research, visiting the surgeons at both the U of M and the Mayo Clinic and hannging around this web site. My wife was not so upbeat on this approach due to the additional risks with the facial nerves. I am apparently one of the lucky ones who has not had any facial issues.
The one thing I can say regarding this approach is make sure the surgeons have perfromed a lot of this approach. (Haines and Levine had done around 80, while Drisco and Link at Mayo had only done around 20.)
Good luck and stay positive!
P.S. I am the worlds worst speller so I apoligize.
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Hi,
I had a middle fossa surgery on May 14th of this year at Oregon Health Sciences University (OHSU). My tumor was very small (3 - 4 mm ) and Dr. Johnny Delashaw was my neurosurgeon. I chose this surgery because I had an 80% chance of keeping my hearing and I didn't want to keep wondering if the tumor was growing all the time (as I would have with radiation). I could have wait and watched for a while but I had already started losing the higher range of hearing in that ear and knew the longer I waited the more hearing I could lose (slowly or all at once) and that after the tumor reached a certain size they could no longer do a middle fossa (which was my best surgical chance at keeping my hearing).
This is my post surgical outcome: I did lose all my hearing in the AN ear within 6 weeks ( the doctor said the nerve could have stroked after surgery.... he was very surprised I had lost my hearing although he had warned me it could happen), I have some facial paralysis (they had to scrape the tumor off the facial nerve) and they did take my balance nerve with the tumor (less chance of it growing back .... and other 'stuff' too).
Now 7 months after surgery my balance is really pretty good - I can walk up and down stairs without clinging to the banister, I can carry 2 bags of groceries at a time and I have never fallen ...although I do lose my balance and recover it (on occasion). The facial paralysis is better and continues to improve and I am back to work full time teaching. I am still tired (okay...so part of that is because of working with 25 2nd graders every day) but feeling more energy as time goes on. I have no mental or memory problems and as far as headaches go..... I have no more headaches now than I did before - except for migraines which for me I get because of stress (my mom and dad are in their 80's and have had many severe health issues lately) ... so migraines are up from 1 a year to about 4 in the last 7 1/2 months. I also attribute this to not having as much emotional / physical energy because of the day to day challenges with being single sided deaf and working in a very noisy fast paced job. After looking at the outcomes of many other people on this web site.... I think my outcome was a good one and I am very grateful for life and the ablility to continue to teach (even though teaching now is much harder than it was before).
As has already been said... everyone's outcome is different ...just as our tumors are all different. The surgeons really don't know exactly what they will be dealing with until they get in there. If I had gone to House Clinic .... would I have kept my hearing and had no facial paralysis ??? I don't know and will never know. House Clinic has their share of cases that have less than great outcomes too. Often it has to to with the position of the tumor and how things go. I researched my options, my neurosurgeon does hundreds of craineotomies (sp?) a year and over the last 20+ years he has done hundreds of Acoustic Neuroma surgeries. I wish I would have been one of the ones with a 'perfect happy ending' and come out of surgery with everything the way it was presurgery except for a scar - but the truth is I have only met one person who has had that result.
I wish you well as you decide what to do ........... take the time to sort things out and interview more than one doctor before making your decison.... I did and I'm glad I took the time. I'm scared to even think what the outcome would have been if I had gone with the first doctor.
Margaret
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RE ... I hope you end up with some of your hearing left.... as I said ....I did have hearing after surgery but at the 6 week hearing test all usable hearing was gone ( I only heard noise when the hearing guy talked very loud in the AN ear headphone ) ... then within a few more weeks lost the rest and now I hear nothing at all .
Margaret