ANA Discussion Forum
Archive => Archives => Topic started by: beesgirl on June 15, 2006, 03:02:00 pm
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Hi all,
I have been lurking here for months, seen how wonderful and supportive everyone is, and now I feel like I could really use some help. I live in Atlanta, I'm a 27 year old graduate student at Emory University.
6 months of tinnitus lead me to the ENT. 6mm right sided AN (actual 3 dimensions never divulged...) found in December, 2005. Advised to have repeat MRI in 6 months. This MRI showed "no measurable growth", but tinnitus is worse and speech discrimination seems to be getting worse. Hearing test still within normal range. Advised by Dr. Mattox at Emory to continue with observation. Basically doesn't want to be "blamed for ruining my hearing". Radiation was dismissed as an option because of my age and the lack of long-term follow-up data.
I sent my MRI and hearing test results to the House Clinic and Dr. Luxford said that he also recommends observation. However, he said that surgery can only PRESERVE hearing, not restore it. So why isn't he jumping on the opportunity to save mine?
I realize my AN is small and my symptoms aren't that dramatic, but the idea of waiting to lose my hearing or my balance before acting is really vexing me. I'd love to hear other people's views on this.
All the best,
Liz
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I highly suggest you speak with a specialist in radiosurgery, it should never be "dismissed" due to age or lack of long term data, as long term data exists with a control rate about the same as surgery, and it is a viable option for any age. I believe you were mislead by a surgeon who would like the opportunity to operate in the event treatment is needed. I'm 29 and had CyberKnife last year, you should read some of the topics in the radiosurgery section, you'll find plenty of long term studies and info linked in that section. :)
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I highly suggest you speak with a specialist in radiosurgery, it should never be "dismissed" due to age or lack of long term data, as long term data exists with a control rate about the same as surgery, and it is a viable option for any age. I believe you were mislead by a surgeon who would like the opportunity to operate in the event treatment is needed. I'm 29 and had CyberKnife last year, you should read some of the topics in the radiosurgery section, you'll find plenty of long term studies and info linked in that section. :)
Come on now Jamie, don't make me flame! I don't think that any one of those caring, dedicated, and highly skilled docs at HEI ever mislead anybody. Unfortunately AN is one of the few diseases out there with 2 viable and sometimes contradicting treatment options. Ultimately it's up to the patient. Which leaves a lot of us post-treaties second-guessing ourselves and beating ourselves to a pulp with the "shouldas." I really believe both options should be explored, especially for people with non-life-threatening tumors. Keep in mind asking a neurosurgeon about radiosurgery can be like asking a plumber how you should fix your electrical problem. And vice versa Ultimately the patient has to choose the "lesser of two evils."
Capt Deb
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Beesgirl I'm not going to get into the debate brewing with radio vs micro but I will tell you that yes...once you lose your hearing they can not restore it they can only "try" to preserve what is left. It's up to you to seek out a medical opinion you are comfortable with. The longer you put off treatment the more hearing you are likely to lose. If you aren't comfortable with your doctors opinions then keep searching do your own research and make up your own mind. Doctors are not Gods and ultimately you have to live with the decision. I lost my hearing due to being misdiagnosed it's not a good feeling to gradually know your hearing is dimenishing and no one seems to want to help or is overly concerned. Best of luck to you!
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Come on now Jamie, don't make me flame! I don't think that any one of those caring, dedicated, and highly skilled docs at HEI ever mislead anybody. Unfortunately AN is one of the few diseases out there with 2 viable and sometimes contradicting treatment options. Ultimately it's up to the patient. Which leaves a lot of us post-treaties second-guessing ourselves and beating ourselves to a pulp with the "shouldas." I really believe both options should be explored, especially for people with non-life-threatening tumors. Keep in mind asking a neurosurgeon about radiosurgery can be like asking a plumber how you should fix your electrical problem. And vice versa Ultimately the patient has to choose the "lesser of two evils."
I live in Phoenix, so I'm used to a little heat. ;) Sorry if I came across as trying to promote radiosurgery over surgery, that wasn't my intention at all. I just believe that Dr. Mattox at Emory (come on now, HEI does it too) should never dismiss radiation for patients who have a choice. My radiation oncologist did not pressure me into CK, he presented all options and left it up to me. I have to disagree with the plumber/electrician analogy though, I see it more like asking somebody who does hardwood flooring if you should get carpet through somebody else. ;D
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Well.... I liked the plumber vs electrician analogy/imagery myself...
one plumbs the depths ::) the other looks at circuits :o
Interesting this thread re hearing.
My first problems with hearing seemed to be because of fluid build up behind the ear drum. Many years and many trips and dealings with that fluid ventually led to hearing loss... now, I never did understand the logic behind treating hearing loss as if well, you know, you get older and hearing dimishes etc. (particularly because I did NOT grow up listening to loud music, nor did i go to loud concerts.)
So, every now and then when fluid built up behind my ear drum, I would go off to see an ENT. The fluid would be drained, the ear would be fine.
Then, i had bizarre tinnitus. Then i had telephone problems.(not hearing well). Various scenarios for that went on for more years.
At some point, I had lost so much hearing both sensorineural and conductive, while nobody blinked at that finding, even though i was most confused at how could this be?, that i got a hearing aid which i was told would not probably help (it didn't).....
Along the way, I had balance issues, vertigo, and a bunch of other symptoms, including numbness in the An side, strange feelings in the head, the list goes on...
If someone had really "plumbed the depths" (meaning listened and comprehended) my An would have been found a long time ago. As it is, I heard about it because i got fed up and pushed for an MRI, then chose radiation treatment. ( I think that fits in with electrician... ;D)... so far so good. I have the volume down lower than for the last many years when i listen to music. :)
My understanding is that when hearing goes as much as mine did in one ear, it is pretty rare for it to come back at all. My hearing, such as it is now, in my AN ear comes and goes in that i do hear some things, then, I don't out of it. It fluctuates. But what I do enjoy is having the volume in all audio things turned down much lower most of the time. I am a bit surprised at how little is spoken of re the hearing loss.
One directional sound is weird. I have no idea from which direction someone hails me saying hiya. I have no idea where the source is when a sound comes from some machine making noises in my home. In other words I have no idea what is wrong. I find social gatherings a nightmare depending on the acoustics in the environment, how many people/sounds happening. I find malls a nightmare. There are loads of events that are painful, too, with sound.
One adapts, I guess.
I once, a few years before my An was found, had a specialist ask me if I was lipreading. I think I was unconsciously doing that. (his specialty was nothing to with head stuff by the way).
Sorry... how did i get to this ramble? oh yes.... well, Plumbers vs Electricians...
(oh, one of some reasons why i do not have hardwood floors lol is that carpeting deadens much sound)
Cheers and best wishes all of you.
Things can get better.
Windsong
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"Act now or later" to preserve hearing
It is a paradox for sure - basically, historically, many treatments used to threaten any
remaining hearing as the hearing nerve is quite delicate - from this came the medical
notion of "wait and see" ie when we are absolutely sure there is no alternative
- we will treat. For example, you might be 5 yrs away from this point.
These days the preservation stats are getting better and we are not far away from the point where -" if your going to do something - do it now" MAY be the revised advice.
I am starting to think this way myself - anyone else agree ?
Its a descision only you can really make - so get good advice first - from a few sources.
Good luck
and
Best Regards
Tony
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Well, Tony, I kind of agree with you. I am not an expert and haven't done near as much research as a lot of you on this forum, but all I know is my own experience. MAYBE, if my AN had been discovered April of '05, when I first went to the ENT with what I think of now as classic AN symptoms, and treated then, MAYBE I wouldn't have gotten to the next symptom...my facial numbness. MAYBE it wouldn't have made one bit of difference, I might have still developed this...but it makes me just a teensy weensy bit angry when I think about it. So I try not to. These stupid AN's are kind of unpredictable, I think. One day, everything is peachy keen, and overnight it grows a fraction of a millameter and upsets the delicate balance (no pun intended) of the auditory ear canal eco-system and there you go. ??? So, how do you ever figure out when that would happen? Some people have problems with small ANs and some people don't find theirs until they are giants! It's just weird.
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YES, what Sue said! Part of the reason I wanted my relatively small AN OUT, OUT, OUT is that I was extremely symptomatic. My ear felt like it was going to explode and was driving me NUTS! And I was having headaches that I blamed on the AN regardless of what the doc said.
Capt Deb
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Dear Beesgirl:
  I'm a Mattox patient as well. He and Dr. Ian Crocker teamed for my radiation treatment on 2/2/06. If you want further info about the pros and cons of radiation therapy, I suggest you have a consult with Crocker (radiation oncology). He'll be forthright with you regarding the risks to benefit ratio of proceeding with treatment now versus waiting a little longer. The critical issue here is the size and location of the AN relative to the precision with which the ionizing radiation beam can be focused. I recommend you ask him what is the smallest spot size that can be irradiated safely with the equipment at Emory and what the uncertainty in this value is. Then have him compare this number to the dimensions of your AN. If you decide to proceed with radiation, I'll be glad to chat with you about what you can expect.
 In my deliberation, both doctors told me that their experience with radiation treatment extended more than 15 years and that no instances of secondary tumors have yet to be observed in their patients. Yet, both stated that this was not a guarantee that I'd be free of a radiation-induced complication. Since I'm 55, the opportunity to irradicate a tumor now using a treatment that might spawn a second one in 25 years seemed okay with me (55 + 25 = 80). The average life span of an American male is 78. I speculate that there is some hesitation because 27 + 25 = 52 and the average life span of an American female is 82. The 30 yr gap should give everyone pause.
 An undeniable fact is that once you've joined our exclusive club (have an AN), you have to get used to the idea that every treatment option now available to us comes without guarantees and with possible side effects (some are trivial, others are life-changing). That is why you'll find a consistent theme throughout many of the responses is "do what is right for YOU." You have to be comfortable with your choice so that you can move ahead with confidence, regardless of what may happen.ÂÂ
  We'll support you, either way you decide to proceed. Good luck!
-Labott
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I really appreciate all your replies, it gives me the warm fuzzies knowing I'm not alone. :D I am very aware of how lucky I am to have had this tumor found quickly and while it is small.
I will definitely see about a radiation (um...electrician?) consultation. Dr. Mattox also mentioned a "theoretical" possibility that the radiation would cause the tumor to become malignant. I haven't yet found anything non-theoretical to back this up, has anyone else been told this?
I can relate to what Captain Deb said about the headaches. I mentioned to both my doctors that I was having stabbing pain in my ear only on the AN side and they insist it's unrelated...a bit too much of a coincidence, methinks.
Thanks again,
Liz
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The doctors are supposed to tell you all the risks, and this is one of them, but I understand it to be a very, very, very, rare occurance. I am counting on that because I had GK in April! I think I read on here that the risk for that to happen is much less than the risk of having a reaction to the sedative during surgery. Others more knowledgeable will probably respond to this post, also. Or you might search the archives for that thread.
Sue
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The actual instance of radiotherapy causing something more, or worse
is actually quite small, % wise.
Our main Gamma Centre saw one in 10 yrs of operation (3000 patients ?)
- even then the tumour had shown strange growth, (faster) than normal
before the treatment started.
Also, bear in mind, the current doseage is about half what it was 10yrs ago.
I cant say "there is absolutely no risk" for this, or any other treatment,
so it has to be your choice to make.
My suggestion is you find a couple of experianced AN/radiologists to talk
to - and see what they say
I sure this list can point you in the right direction
Best Regards
Tony
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Well.... I liked the plumber vs electrician analogy/imagery myself...
Maybe I'm just too hung up on semantics, lol. The problem I found with it is that a plumber and an electrician work on completely different problems, therefore are not in competition, and would not dismiss the other's trade....whereas somebody who does hardwood floors would never recommend carpet, even though carpet is just as viable an option....
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I believe I read in a study where there have only been eight documented cases where a benign AN that was treated with radiation therapy became malignant.
Actually, of those cases (extremely few) involving malignant transformation, half were following surgery and had no radiation whatsoever....
A while back, Mark posted an exchange between a patient and Dr. Medbery, in which Dr. Medbery addressed both malignant transformation and long term control, here's the link.....
http://anausa.org/forum/index.php?topic=694.0
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Beesgirl, I have a benchmark in my memory for hearing loss. I had lost 65% of my right side hearing and none from the left. My tumor was 2 cm , I had translab and have adjusted to total hearing loss in that side. There is still a huge difference between zero and 35% when it comes to hearing. Although my word recognition scores were pretty bad on the affected side, I could still tell you if a sound was coming from the right or left. Directional descrimination is the thing I miss the most. There is no hearing aid that tells direction. I am not sorry I had translab since the tumor was very near my brainstem.
So I would be asking how threatening is the AN and how much hearing is remaining? Surgeons don't like to open your skull for a 6mm tumor. Why can't you go for radiation?ÂÂ
Surgery would probably be suboccipital to preserve hearing. Don't rush.
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I mentioned to both my doctors that I was having stabbing pain in my ear only on the AN side and they insist it's unrelated...a bit too much of a coincidence...
Thanks again,
Liz
Liz, I had bad stabbing pains in my ear for several years ...felt like a knife..my doctor just kept treating me for ear infections and prescribing antibiotics and decongestants...I believed the tumor began its attack on my hearing nerve around that time. I only knew that ANs existed four months before my surgery. Keep on pushing and researching.
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8) Beesgirl - I've had the same thoughts about my daughter. No real issues with hearing and balance yet. Just "waiting and watching" However, our neurosurgeon has also told us that we all need to learn sign language because, she will eventually be completely deaf because she is NF2. He doesn't advocate GK for the same reasons you mentioned - long term studies and the malignancy thing, plus the potential to do more damage with the radiiation. I sent her records to HEI last Friday and am anxiously awaiting their response. I just don't understand why not remove it now and try to preserve at least some hearing?? It seems like a better alternative to me than just sitting around waiting for the hearing to go. I'm just scared out of my mind about this thing. She is only 15.
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I really feel for you and your daughter, this must be a very trying time.
In my case the doctor didn't advocate surgery even though I want to preserve my hearing, but it wasn't until my second visit that he said it was due to the location of the tumor rather than the size. I understand that the location is really key to hearing preservation.
I hope that HEI comes through for you. Be aware that when they called me it was 4am LA time, 7am Atlanta time! Hopefully they will take your daughter's NF2 into consideration and opt to preserve any hearing they can.
I'll be thinking about you.
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Reply to HGTVQUEEN - Sorry for your worries
there maybe an alternative for your daughter
She is young - and currently can hear
Basically this means she could become quite adept at
lipreading (the age and ability to hear currently, assist this)
All the familiy would need to do is to carefully learn to
pronounce and speak properly to help her
(slang or even mumbeling will make it harder to do)
A lipreading skill will help her even if/when she may have only
partical hearing - since she will understand more
The sooner she starts the easier it will be.
Best Regards
Tony
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8) Beesgirl - I've had the same thoughts about my daughter. No real issues with hearing and balance yet. Just "waiting and watching" However, our neurosurgeon has also told us that we all need to learn sign language because, she will eventually be completely deaf because she is NF2. He doesn't advocate GK for the same reasons you mentioned - long term studies and the malignancy thing, plus the potential to do more damage with the radiiation. I sent her records to HEI last Friday and am anxiously awaiting their response. I just don't understand why not remove it now and try to preserve at least some hearing?? It seems like a better alternative to me than just sitting around waiting for the hearing to go. I'm just scared out of my mind about this thing. She is only 15.
Hello hgtvqueen,
My name is Jeff and I too have NF2. I am treated at HEI and have had great experiences with them. I would certainly discuss tumor removal with them. I have discussed it with Doctors Friedman and Hitselberger in the context of my daughter, who has a 50/50 chance for having inherited NF2 from me. They have removed tumors from young NF2 patients ( I know that they are doing one next month on a 9-year-old). They are pretty excited about some successes with young patients using the middle fossa approach.
My experience, however, makes me wonder about surgery for young NF2 patients. I wasn't diagnosed until age 36; and I had perfect hearing then. I am 41 now and still have perfect hearing in one ear even with a large tumor. So, my question is: Do you risk a possibility of hearing loss by having surgery or just ride it out until either the tumor causes hearing loss or other problems? Also, researchers are working on hearing devices. HEI pioneered the auditory brainstem implant and are now working on a penetrating auditory brainstem implant. Perhasp by waiting your daughter may be able to take advantages of newer technologies.
I agree with Tony about lipreading. I am busily working on lipreading and sign language. Unfortunately, there are no guarantees with any course of action. Early surgical intervention does not guarantee hearing preservation, nor does waiting/watching or radiosurgery. It's a tough decision to make. I am sorry that you have to deal with this. Please let me know if I can help in any way.
Jeff
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;D I got a call from Dr. Friedmann from HEI yesterday. He was so kind and reassuring. He proposed removing the very small tumor from her right ear- thinks we can preserve most hearing on that side. However, he would leave the left side alone for now & possibly later on do a procedure to relieve pressure in the auditory canal, which could prolong hearing for several years. But at least we could save hearing on her right side. Dr. Friedmann also clarified some mis-information our current neurosurgeon had given us. I feel like the weight of the world is off my shoulders. My daughter is such a stoic at age 15. When I told her the news - she just shrugged her shoulders and said "cool".
Thank goodness for the internet and this website. I would never have heard about HEI. The key is to do your own research and get 2nd opinions. I was blown away (in a good way!) by what Dr. Friedmann told me.
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Great news for you! I am a big fan of Dr. Friedman. He removed one of my tumors and he reviews my films and closely follows my other AN. He calls me every 6 months to discuss my scans. I appreciate his confident yet compassionate approach. I wish you and your daughter the best. You're in great hands.
Jeff