ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: LMH on May 07, 2008, 03:13:43 pm
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I am new to this forum (approx. 8x6 mm AN diagnosed 9/06) and am trying to make a decision regarding surgery, radiation or continuing to watch and wait. I attended a support group meeting earlier this year and was quite disheartened by the complications (both temporary and permanent) experienced by those who have had AN surgery. I would love to hear from anyone who has had a positive surgical experience.
Thanks,
Lisa
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Had surgery on 1/10/07 with no complications. Full tumor removal, no facial nerve damage but I do have diminished hearing (about 42% on my AN side).
Joe-
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Hi, Lisa & welcome :)
I had surgery on 5/31/07 to remove a 2.5+ cm AN and I had a very positive outcome.
I have no facial nerve damage and no lasting side-effects from the surgery except for SSD (single-sided deafness). Some patients adjust to SSD very easily, but others like me choose to have BAHA surgery; still others decide to get a TransEar. You can read more about these options - if you are interested - but searching the forum.
The size of your AN should mean you have the option of radiation or surgery - or as you say, you can continue to watch and wait since most ANs are slow growing.
Have you asked the ANA for any literature yet? If you haven't, I highly recommend it - it's very informative and I found it very helpful.
If you have any specific questions about my surgery or my recovery, feel free to ask. You can either post them under this subject, or PM me.
Jan
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Hi. I had surgery this past March. The entire tumor was removed and I have no permanent facial damage. My hearing was generally OK prior to surgery, but my hearing test last week indicated that I have about 80% voice recognition. Oh, and the tumor was 1.8cm.
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i had good outcomes from my surgery too, ie no major complications and no facial weakness. The minor effects i experienced were difficulty to raise my left eyebrow for the first week and balance issues (or "wonky" head) for 2 mths which will pass in time. My left eye also produced a reduced amount of tears and my left tongue was slightly numb, right now these are almost at 95% "normal" now. The other complication i had had nothing to do with my surgery........i had a bladder infection =) Hope this helps
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Hi Lisa,
I also had a very successful surgery. I had the usual post surgery issues, balance, dry eye, and some facial paralysis but they were all temporary. I was back to work full time in 8 weeks. I only lost about 15% of my hearing. Would I do it the same way again if I had to? Yes, in a heartbeat. If you would like to talk, just send me a personal email. I wish you the best. Ann p.s. I was on the watch and wait mode for 5 years!
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Thank you so much for all of your replies! It's good to know that there are people out there who have had positive experiences with little or no complications. It seems that everyone I've talked to has experienced both minor and major complications so it's nice to hear about some positive results!
Thanks,
Lisa
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Lisa -
I just wanted to add that there are more people with positive surgical outcomes on this forum who haven't responded to your post. Jim Scott comes to mind. If you want to read some of his posts, just "search".
Jan
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Hi, Lisa:
As Jan mentioned, I had a positive surgical outcome and I'll be glad to share that with you.
I was 63 and had a 4.5 cm AN when it was discovered via an MRI test. My symptoms were rather severe, as you would expect. Serious equilibrium problems, loss of the sense of taste (everything tasted like cardboard), Single Sided Deafness and acute fatigue. The neurosurgeon I ended up hiring advised using a two step process to preserve the facial nerve. He basically 'hollowed out' the tumor...it's usually termed 'debulking'. This reduces the size of the AN so that it can be radiated. My neurosurgeon reduced my AN from 4.5 cm to about 2.5 cm. I had a very successful surgical experience. I had no facial paralysis and was driving again two weeks later.
As planned, three months following my surgery I had FSR (Fractionated Stereotactic Radiotherapy) that was carefully 'plotted' by my neurosurgeon and a radiation oncologist he worked with on my case. It is relatively small doses (5 gy daily) of precisely-aimed radiation that is supposed to kill the DNA of the remaining AN. These 'treatments' were about 20-25 minutes each. One per day, five days per week for 5 weeks (and one day). I did not experience nausea - orany other problems, as long as you don't count boredom. My last MRI (In December '07) showed tumor shrinkage and signs of necrosis (cell death). Both doctor and patient are quite pleased. I have another MRI scheduled for next month and I expect another encouraging report.
As I mentioned, I had no real problems following my AN surgery. Oh, my left eye gets a little 'dry' if I'm tired but a few OTC eye drops (or going to bed) fixes that. I have a tiny 'numb' spot on the side of my tongue but it doesn't bother me. Food tastes perfectly normal. I think the left side of my face (the 'AN side') is perhaps 5% less sensitive than my right but, again, this is inconsequential. Shaving isn't a problem. Considering the size of my AN, I had a stunningly good outcome to both my retrosigmoid approach surgery as well as the follow-up radiation. Of course, I'm still deaf in one ear, as I was prior to the surgery, but that was expected.
As this thread demonstrates, Lisa, many AN surgical and/or radiation patients have good outcomes. A lot depends on the skill and 'AN experience' of the doctors treating you, as well as the size and exact location of the AN. Your overall health and attitude are also mitigating factors, as with any surgical procedure. I was not young but in good overall health and had a positive attitude as well as a solid support system going in. I believe these are crucial. However, as we so often say around here: everyone is different. No AN case (patient) is exactly alike. The good outcomes of others cannot guarantee a good outcome for you, whether you choose surgery or radiation. Still, I think you need to realize that having a successful surgical outcome is not a fluke but quite possible. I'm living proof of that. :)
You also must remember that AN support groups and even message boards often are venting places for those with post-surgical (or radiation) problems. Those folks need to vent. They have every right to do so. Here, we offer them empathy and as much support as we can. The unfortunate reality is that these occasionally poignant accounts can frighten a newly-diagnosed AN patient into assuming surgery (or radiation) means facial paralysis or other distressing after-effects. Please understand that this would be a misunderstanding of the reality. A vast majority of our members have good or at least acceptable outcomes. Also remember that most post-op issues do resolve, in time.
Lisa, don't be hasty or allow fear to cloud your decision-making. Have as many surgical consults as you feel you need and be sure to post any other questions you may have (not specifically medical...we're not doctors). We stand ready to support and advise you as you may need - or ask. Your AN is relatively small so you do have the luxury of time. Use it well. That said, I wish you all the best as you continue this 'journey to wellness' we're all on. I think you're going to do just fine. :)
Jim
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I'll chime in, too - even though my surgery was barely a week ago and it is probably too soon to toot my own horn TOO much! I'm 52, so not the younest surgical gal on this forum - that being said, I consider my surgical experience to have been nothing short of stellar! I have virtually NO balance problems, no dizziness, no nausea - my only real complication is some temporary facial
numbness (palsy). I had my stitches out today and the surgeon said he is already seeing signs of facial animation returning (small, but they're there), so feels very positive.
Oh, and I am SSD in my right ear - this was guaranteed with my particular surgery, so not a surprise. Too soon to tell if I'll want to pursue a BAHA or not.
Finally, the Doc said I can try driving locally this weekend!!!! (10 days post surgery!)
So, yes, lots of very positive outcomes. I have great role models from this site - you will, too!
Debbi - stitch-free in NJ...
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Debbie - great to see you on the postie side!
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Lisa~
I just have to say that I had quite a few complications when I had surgery but now that I am thru them (the immediate ones), I'm OK. I had and I think still do have a great attitude (& my strong faith) and that is what helped me - overcome the problems then and then continue to live with a paralyzed face. I have an INCREDIBLE life, a wonderful hubby, and 3 beautiful daughters (that I had AFTER my AN surgery). What more could a girl ask for?? I think it is all in the way that you look at things...
K
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I just knew that Kay would be able to shine a positive light on this!
I have to agree - while I have a few outcomes that may not be exactly positive (partial facial paralysis, SSD), I have to say that the most positive outcome I was hoping for was that I'd be here to compain about them! And here I am! But the way I see it, brain surgery is a big deal, so if you have some minor things to deal with, it seems like a small price to pay.
Don't get me wrong, I have my days where I don't want to deal with my surgical issues anymore, but they are few and far between these days. I am beginning to think everyone should have brain surgery (or radiation) at some point - it really makes you appreciate what you have, instead of hurting for what you've lost. Ok, maybe there is an easier way than having brain surgery to arrive at this conclusion, but I haven't figured it out yet.
Lisa, whatever treatment choice you decide on, I hope all of your outcomes are positive!
Lori
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Is it just me, or have almost all of the "positive surgery outcomes" included either some loss of hearing, temporary facial paralysis, etc? I find these "positive" reports pretty unsettling.
We have been doing research for about 2 months re our son's 4 mm AN, and reading about your, also very small, AN, I really hope you make sure that you research alternatives such as CK, GN, and "watch and wait." I believe that surgery is warranted in many cases when the AN is 3+ cm, but the unpredictable results that seem uncorrolated to tumor size, weigh against the surgery alternative for us. Good luck on your search, and I hope that you end up with a procedure with which you can feel very comfortable.
Katherine
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Is it just me, or have almost all of the "positive surgery outcomes" included either some loss of hearing, temporary facial paralysis, etc? I find these "positive" reports pretty unsettling.
In light of some of the possible surgical side-effects, these are positive.
Plus, life is what you make of it. "Positive" is a very subjective term and can be interpreted differently by different people.
I, for one, find it very positive that I didn't have a life-threatening brain tumor and that I wasn't told I only had a few months to live. There are people diagnosed every day with things much worse than an acoustic neuroma. If I get to spend the next 50 years (God willing) with nothing more than SSD - I will consider myself truly blessed :)
Jan
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I had a positive surgical experience. By the time of diagnosis my hearing was drastically diminished. I had the photo you see here taken one month before my Translab, in hopes I'd have a nice smile record to keep for my aging years. Fortunately, the smile I have today is exactly the same. Yes, I lost the remainder of my already distorted and poor word recognition to a now deaf ear. SSD is small price to pay for a surgery to keep the tumor off my brainstem.
If I'd discovered a much, much smaller tumor in 2005 perhaps I'd still be on wait and watch. Each of us finds the answer that best suits us personally. I have no regrets, only happiness with my life today, as is.
Keep researching and remember that the small AN is not a threat.
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Wonderfoully said, Jan. All I could think of when I read this was what I use with my kids: "You get what you get and you don't throw a fit!!!" I don't know why that popped up... ;D
K
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Jan, you are SO right! I am with you - if this is all I have to deal with in life, I will consider myself truly blessed. I know two people with cancerous brain tumors - a reminder that an AN is not such a bad thing.
Life is ours to live and we each get to choose how we deal with whatever life throws us - look at Randy Pausch if you want to see someone who is facing the worst life can dish out, and still finds joy in simple things.
Sorry, hope this doesn't sound preachy - and I certainly don't want to minimize our acoustic neuromas - but I know that I have much to be grateful for every day...
Debbi - having a zen moment in NJ... turban and all...
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Is it just me, or have almost all of the "positive surgery outcomes" included either some loss of hearing, temporary facial paralysis, etc? I find these "positive" reports pretty unsettling.
We have been doing research for about 2 months re our son's 4 mm AN, and reading about your, also very small, AN, I really hope you make sure that you research alternatives such as CK, GN, and "watch and wait." I believe that surgery is warranted in many cases when the AN is 3+ cm, but the unpredictable results that seem uncorrolated to tumor size, weigh against the surgery alternative for us.
Katherine
Hi Katherine,
I wanted to respond directly to your comment, since you seem to be in the minority in this thread. The choice between surgery and radiation treatment is a complicated one, and depends on many factors, including patient preference. I do want to endorse your perception that for you and your son, radiation treatment may be a better choice. His AN is quite small, so waiting may make sense, and if it is treated, a small AN like his has an excellent chance of a positive outcome from radiation treatment. I am curious, in fact, if you have had a consultation with Dr. Chang, and if so, how that went.
So no, it's not just you. :)
Steve
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Is it just me, or have almost all of the "positive surgery outcomes" included either some loss of hearing, temporary facial paralysis, etc? I find these "positive" reports pretty unsettling.
Hi, Katherine:
Please allow me to chime in here as you raise a salient point.
An Acoustic Neuroma - doctors refer to them as a vestibular schwannoma - is a (benign) growth on the sheathing of the 8th ( vestibulo-cochlear) nerve. Usually, hearing loss is the symptom that motivates AN patients to seek a doctor's help. Unfortunately, hearing loss is a fact of having an Acoustic Neuroma, although a small percentage of AN patients do not lose their hearing in the AN-affected ear. Hence, hearing loss is not generally considered a negative outcome for AN surgery. My surgery was without complications and my hearing was already 'lost' in the AN-affected ear, so, I consider my experience to have been positive.
Facial paralysis is another factor in dealing with an Acoustic Neuroma because the 7th (facial) nerve can be involved. Because that is the case, some AN patients begin to lose sensation in their face prior to surgery and some lose it following surgery. Post surgical facial paralysis or loss of sensation is often temporary as the facial nerve has been disturbed. Eventually things 'settle down' and facial symmetry is restored. This can take weeks or months. I had a few almost imperceptible facial anomalies post-surgery but what little there was (my smile was 'off' just a tad) resolved within six months to a year and were never noticable to others. I consider that a positive outcome.
As others have tried to point out (and done so quite well, I might add) Acoustic Neuroma patients have a difficult challenge to surmount because the relatively small tumor has far-reaching effects. While some do better than others (for a host of reasons - or for no obvious reason at all) no AN patient comes throught the experience totally unscathed in any way. I didn't and by any logical standard, I had a splendid recovery from both AN surgery and radiation treatment - or just call it a positive outcome. ;)
Jim
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Jan, I love your outlook on life! There ARE alot worse things to have wrong, than AN.
It seems none of us gets thru life, without problems. I feel we grow ALOT thru things that happen in our lives that are unexpected.
If someone lived 90 years, and had no problems some people wouldn't know how to be thankful, or blessed. They might just concentrate on the "little things", and be unhappy b/c of them. I'm just generalizing here.
Problems teach us how to be sensitive, caring, and help other people. We become NEW, and BETTER people.
My hubby and I went thru what I think is the worst thing in the world. We lost our son. He was age 16. I'm not telling you this so that you feel sorry for us, I'm just mentioning it, b/c it happened. He was a wonderful son, and I miss him terriblly.
But, even that, will turn out good in the end. When we are back with him in eternity.
So....to get back to AN......I will make it thru this, also. Will probably have some bad days after surgery, but it will get better.
Just like all of you have said here. So thanks everyone, for all the positive thoughts here!
WE even laugh here! That helps heal all of us.
Love,
Lacey
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Lacey~
I am so sorry about your son, but I think you have a wonderful attitude about that & everything else! I was just telling my SIL the other day that if we never had pain or hard times, we would never recognize the good.
Keep up the positive thoughts! ;)
K
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Hello Steve,
Thanks for responding directly to my concerns. I am the same person who has written over the last several months about my 23-yr-old son's 4 mm AN. In short, I feel we have been fortunate to have extremely good advice, from doctors as well as from the knowledgeable and kind people on this message board.
In short, Dr. Brackman at House Institute says middle fossa surgery is the best approach for a young man due to the long-term effects of radiation being still unclear. Dr. Chang at Stanford, with whom we consulted, says CK is the best approach for a young man but he is comfortable with "watch and wait." Through a crazy coincidence we made contact with Dr. Carlo Giovannini, who has just arrived at House to head their neural tumor research department. He says that in Europe, a young man our son's age with a 4 mm AN would be watched, and definately not operated upon.
Our son's hearing now is extremely serviceable, although he wants the TV louder than anyone else in the family. His face is gorgeous (I'm his mom, after all), he is single, and the possibility of facial paralysis, even temporary, is pretty scary. In fact, several weeks after the meeting with Dr. Brackman he developed hives, for the first time in his life, and probably from stress. He felt a lot better after consulting with Dr. Chang.
So it is difficult to proceed with a treatment that could affect him negatively for the next 60+ years when he is doing so very well. We have decided to do another MRI in September, after waiting 6 months from the first one. That makes the most sense for us right now. Also, David has always had a hearing loss on one side. We are tracking down his audiology records from when he was 12, to see if his loss in the high frequencies has remained fairly constant, or deteriorated.
It is so helpful to have everyone here on which to bounce off ideas. After we were referred to Dr. Brackman by our son's ENT, I wouldn't even have known about the radiotherapy alternative without these message boards.
Thanks again,
Katherine
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Hi Katherine,
Sounds like a good plan. I look forward to hearing about the next MRI in September, and how your son's hearing is doing. I like the sound of Dr. Giovannini as well. I hope you are able to watch and wait patiently, that is often the hardest part.
Steve
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Just being diagnosed with a AN I am very upset with all the doctors I consulted with. They only want to sell you on what they do not what's best for you. Thank god for this board I got a fair and balanced choice. I am in the medical field so don't fool yourself they are there to make money and when you see the cost of surgery you see why. My first consultation was with two of the top guys in NYC who told me don't do gamma knife you can die from brain cancer down the road. I feel what ever choice a person makes is a good one I just wish these so called experts would tell the patients all the options in a fair and balanced manner. By the way mine is only 6mm so I do have options.
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Rocky,
it's one of the things we stress around here... to do your research and to be the best well-informed patient you can be. Of course, in life, peeps are going to recommend what they know... where their "comfort levels" are... and to me, in the AN struggle in life, we must take it upon ourselves to find out what others don't (or won't) tell us. Now, not to overwhelm yourself with info, but do as you are doing... consult with dr's... and patients alike. Then, you will know what is best for you and your situation.
Hang in there!
Phyl
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Just being diagnosed with a AN I am very upset with all the doctors I consulted with. They only want to sell you on what they do not what's best for you.
Rocky -
I think that unfortunately you are seeing the wrong doctors. I'm in Illinois and I know that my doctor and his medical partner do not try to sell you on a specific treatment if you have options. They do both radiation (gamma knife) and surgery and if your AN can be treated by either, they basically let you decide. Of course there are cases where surgery is the only option due to the size of the AN. Both these doctors also recommend watch and wait - if the AN is small enough.
If someone travels from another state to consult with them, they will actually recommend a doctor in the patient's home state if they feel there is someone just as qualified as they are. IMO, these guys are the kind of doctors you want.
If you want more information on them, PM me.
Good luck,
Jan
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Just being diagnosed with a AN I am very upset with all the doctors I consulted with. They only want to sell you on what they do not what's best for you.
Which hammers home the "do lots of research and interview multiple doctors" approach the patient should take. The internet is a godsend in this aspect. When the time comes to get your noggin split, you will feel more at ease knowing you made the best decision for you, by you, not someone else.
In the docs defense, they know what they know. Some expand on their knowledge and change as the technology and techniques change, some stay with what they learned as the tried and true method.
LMH,
I had a positive outcome. Of course, the surgery and ICU stay sucks to no end, but it was quick compared to some (2 days total). Was back to work nearly one month to the day of having surgery (I think it was one day sooner). Only long term issue is the SSD.
Would I do it again with the unconventional and not (yet) widely accepted endoscopic method I chose? Absolutely.
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Katherine:
I'm pleased to read that the message boards are helpful to you. That justifies their existence.
Your concerns for the long-term effects of radiation on your son are valid and your decision to wait until September and the next scheduled MRI to make a decision is also reasonable because your son's AN is relatively small at this point. This offers you the luxury of waiting a bit and using the time to research and come to an informed decision. I believe you're on the right track.
I must point out that when dealing with an acoustic neuroma, there are no guarantees. As my very experienced and skillful neurosurgeon told me: the AN tumor develops in a very sensitive location and is difficult to remove (or radiate) without at least a few ramifications to the patient, even if temporary. Unfortunately, because of it's placement on the 8th nerve, hearing loss is common - but not automatic. However, one must be realistic and understand that when dealing with an acoustic neuroma, some hearing loss is quite possible, no matter the procedure chosen to address the AN, because the 'hearing nerve' has already been compromised. However, facial paralysis and the other issues that seem to be associated with Acoustic Neuroma tumors can be avoided but again, that kind of outcome cannot be credibly guaranteed by anyone, especially a doctor.
Radiation is a popular treatment for small AN tumors - and usually quite effective. There are always risks, of course, but a bit less than with invasive surgery. I trust you'll find the best course to take and do so with the knowledge you've gained here and elsewhere. We wish your son the very best possible outcome in whatever treatment you choose. :)
Jim
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Lacey...
I read your post and tears welled up.
I am so sorry to hear of your loss. I know you were not looking for sympathy but as a new mom, i couldn't help but feel a deep ache when i read your words.
You are a strong woman to go through this and find a silver lining. Bless you.
Trish
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Lacey:
Please accept my condolences on the loss of your 16-year-old son.
That you and your husband are confident you'll see him in eternity is refreshing to read in this cynical age, where spiritual/religious faith is often - and unfairly - mocked and dismissed as 'superstition' by those who do not share it. May God bless you and may your faith be ever strengthened as you walk through this life and, now, deal with an Acoustic Neuroma. With your attitude, I think you'll do fine. :)
Jim