ANA Discussion Forum
General Category => Inquiries => Topic started by: Joey on August 12, 2008, 12:29:52 pm
-
Hello, everyone. I am new here so feeling pretty weird. On June 30 of this year, I was happily walking around Home Depot with my husband, picking out gutters ::) Quite suddenly, my hearing disappeared in my left ear, it started ringing like crazy and I felt a bit woozy, like when the elevator drops. About a year ago, I noticed fullness in the same ear and went to the ENT for hearing tests and to complain about it. They did hearing tests and noted some loss, not catastrophic. I learned to live with it, but the incident on the 30th scared me back to the ENT the next day. He ordered yet another hrg test and it was emotional when I had to tell the audiologist, "can't hear any of the words, only that you are talking, no enunciation". ENT ordered MRI and prescribed 2 wks on Prednisone. Good news: my hearing is back, better than a year ago even. Bad news: MRI reveals sm to medium size AN. ENT refers me to Mayo Clinic, and yes, had a whole afternoon of appointments. Things went favorably, the multiple Drs. presented facts about GK and also about surgery - told me to go home and decide. I tried the approach "and what would you decide if you were me" and wouldn't you know, they wouldn't go there. It was strange, and although I know they want the decision to be mine - after weighing the statistics, it was becoming obvious that I have to pick GK. With surgery, I was told I had a 90% chance of being deaf afterward. With GK, the risk seems lower, with them citing it as 50%. I was told that the success rate with GK is 93% (then my rather dry neurosurgeon told me that most of his peers would tell me 96%.) Is it possible he was giving me an answer about what course to follow, even though he told me that he couldn't answer my question about what "he would do if in these shoes"? Actually what he said to me, was, "we are two different people and just wouldn't think the same". His personality was very clinical, and I am sure he knows his stuff and otherwise the visit went well. So, anyone familiar with Mayo Clinic? I am about an hour and a half from there, being from WI. Anyone from the area? I am in the process of setting up an appointment for GK, perhaps end of Sept. Any input from those of you who have been there is appreciated. Thanks!! Joey
-
Hello Joey,
I went to Mayo Clinic the end of July and am trying to decide between Gammaknife and Cyberknife. If I have GK, it will be at Mayo. What's right for one isn't right for the other, and many people choose surgery. I was told those same stats re: hearing, gamma knife success, etc. How big is your AN. I live in Upper Michigan. If you want to talk further, please send me a PM. Take care and remember, this isn't something that needs to be decided immediately as these things are generally slow growing. Mona
-
Hello Joey,
Well, first of all welcome to the forum. You will find tons of information on the various treatment options.
In addition to many people who had CK, there are quite a few who had GK recently, or are at least considering it. There are quite a few recent threads on CK vs. GK. My understanding is that Mayo is one of the best centres on GK.
I had GK recently, in April. I also got a bout of hearing loss pretreatment, that came back with prednisone. Feel free to PM me, I know you probably have tons of questions right now.
Take care (and a deep breath)
Marianna
-
Hi, Joey:
No advice to offer as I live far from you, had surgery and FSR, not GammaKnife, and only know the Mayo Clinic by it's reputation, which is excellent, especially when it comes to GammaKnife experience.
I just wanted to extend my welcome, express my regret that you've been diagnosed with an Acoustic Neuroma and assure you that, whatever your decision on treatment, you'll find lots of support, information and useful, practical advice here.
Jim
-
Hello everyone - thank you for the comforting feedback. I think this is one of the best support systems around. Although I have been feeling a bit "shell shocked" I read on and am touched by the caring here. I should have previously mentioned, my AN now measures 1.0 X 1.3 cm "in its extracanalicular component, extending thru the auditory canal BUT does not appear to involve the vestibular system." They also say my brain is normal- arguably! Anyhow, I am not sure how to perceive that entire sentence. My balance is definitely getting worse - I was walking my 2 poodles on our country road, looked up at a jet, moved my head suddenly behind to see if a car was coming. Next thing I knew I was laying on my backside in the ditch, legs in the air! Not pretty. So sudden head movements not a good idea. I have fallen a couple of other times in the last month and attributed it to lack of grace. Sometimes I will have dizzy feelings just sitting at my desk, perfectly still. I know my AN was caught pretty quickly, does anyone know if that paves the way for a better/easier outcome? I am really quite concerned about retaining a little hearing in the ear, as I am a court clerk and work under a few judges: if I can't hear what sentences they are handing out, this could be a problem. It is already, so that part is scaring me. My job has become way more stressful now and I find myself being defensive --- hmmmm. One judge is hearing impaired, so that person gets it. At the time of my acute symptoms a month ago, I did have tingling/numbness on one side of my face. After the 2 weeks of Prednisone, that improved. The Mayo neuro felt that shrinkage probably did occur of the AN, and a lessening of inflammation of the nerves. I am fearful that if I don't do something soon, this will of course progress. On the other hand, I'm feeling mostly good, and don't want to make the call to schedule my GK. So I have the devil on one shoulder right now. Jim - I really, really enjoy reading your stuff. You are a great writer! By the way, Mayo can schedule me for Oct 2nd........ Joey
-
Hi Joey,
The rule of thumb is the smaller the AN the better. It's what makes you a good candidate for GK. My AN was too big for GK so surgery was my only option. Many folks on this site that have suffered hearing loss have managed to make allowances (BAHA implant and so on), and have also resumed their lives, both personal and professional.
It's interesting that you mention "what would you do?" I asked that of all three docs that I spoke to and they all answered immediately that they would have surgery. I think this had to do with the size of my AN and the rather suspicious center of the tumor. Most tumors appear as an all white blob on the MRI. It turned out that the center of my tumor contained the hearing and facial nerves so radiation would not have been a good thing.
Hesitation on the part of your doctors may just be because the various approaches have similar outcomes. By the way, I have some hearing loss (very little) and they will test it in three months. I have the same apprehension that you do; if I can't hear, I can't do my job, so we'll see what happens when I return to work on September 15. I think I will get very good at positioning myself so that people are mostly speaking into my left ear.
Best,
Marci
-
Joey:
Thanks for the compliment. I like your writing, too. :)
I'll chime in here to agree that the sooner you address your AN, the better. To my (non-physicians) knowledge, the smaller the tumor and the better your hearing pre-treatment, the better the chances of preserving it. The reality remains that nothing can be guaranteed. Doctors can only look at past similar cases and their outcomes and make an educated guess on hearing preservation.
Although, like others here, I had no option but surgery (followed by FSR), had circumstances made it possible, I would have opted for radiation over surgery. You have that option and I would concur with your apparent decision to go with the tried-and-true Gammaknife treatment. I would also urge you not to procrastinate, for obvious reasons. Give that little devil the boot!
Wishing you good decisions and the courage to make them - as well as better days. :)
Jim
-
Joey,
I will agree with Jim that it is not good to procrastinate. Of course, at this size you don't need to do anything hastily, ANs typically grow slowly and you should take the time to do your research and think about your treatment options, so that you can feel confortable with your decision. That being said I understand that the sudden hearing loss you had compels you to seek treatment sooner rather than later, this is how I felt too after my hearing loss. It may not be a bad idea to schedule another MRI in a few months time, just to get an idea about the rate of growth.
Based on all the stories that I have read on this forum, "feeling good" is not a good reason to avoid treatment. The odd thing about ANs is that very commonly, people who have the smallest ones are the ones who have more severe symptoms (hearing loss, vertigo, fullness in the ear, tinnitus). This is because when the AN grows inside the internal auditory canal, where the space is very restricted, the symptoms are very noticeable, so that early diagnosis is possible.
On the other hand, large ANs, that grow outside the IAC on the CP angle, often go unnoticed, and they can grow quite big. Lots of us with bigger ANs have experienced minimal symptoms. But this is not a good reason not to seek treatment, as the AN eventually compresses brain structures like the brain stem. In that sense it seems like you are one of the "lucky" ones, since you don't have very severe symptoms, but the ones that you did have led to you an early diagnosis, while the AN is still quite small and you have all treatment options available to you.
Generally, based on the statistics there are less chances of nerve damage and other complications with radiation than with surgery (including damage to the hearing nerve), but different people have different considerations (for example they feel more confortable knowing the AN has been removed for good) this is why the doctors will not give you an answer as to what "they would chose". It is a personal decision and every person has a different perspective on what treatment would be best for them.
Marianna
-
8) Hi Everyone - Just wanted to let you know that I have my "final answer"! I have my GK scheduled at Mayo for October 2nd. October 1st I will go down and meet with a variety of people and probably have another hearing test, too. You all have played an important role in helping me make this decision, which I feel totally good about, so thanks and prayers go to everybody here. I'll get the date on the calendar (and we'll see how smart I are about that!) I am calm and collected right now but I'm sure that is subject to change. Have a good week and I'll be checking in. Regards, Joey
-
Congratulations, Joey, you're in good hands at Mayo, you will do great.
Steve
-
Thanks Steve, and again, my confidence has certainly risen since finding all of you - but I have to ask - are you really a knitter? For serious? I was wondering if I would be "allowed" to take my knitting to my GK procedure, if I'm not too hampered by an IV or some staff member telling me no! - Joey
-
Yes, Steve, I have wondered that myself. Are you a knitter? Seriously?
-
Yes, Steve, I have wondered that myself. Are you a knitter? Seriously?
Marci:
Steve jamais prendre trop au sérieux. Il aime les gens enfant.
Jim (lêtre aux prises aveca langue française)
-
Jim,
Pas de probleme--Steve est adorable.
Salut,
Marci
-
According to Babelfish:
Jim: Steve never to take too much with the serious one. He loves child people.
Marci: No the problem--Steve is adorable.
Steve: Merci - je pense. Je ne suis pas un tricoteur.
;D
-
:D :) Okay, even if I am a new kid, I've read enough here to know I can (politely) tell you to get back on task! This is my proverbial two cents: can anyone explain the backward loop cast on? HA! Okay, that was my attempt to lighten mood. I have received my itinerary for Mayo for the day before the GK treatment: on 10-1, I meet with the MRI people for an interview, the radiation oncologist, have a hearing test and see the neuro guy. I sense that my hearing levels are changing right now - yesterday I really felt like I am losing hearing again, feels like someone is stuffing cotton in there! Today it may be better, but I'm not real sure. The effects of the Prednisone - I was given a huge dosage in July - could the effects be wearing off and the tumor gaining weight again? Our weather is definitely changing too, becoming dryer and cooler, so not sure if this has any effect on feeling "stuffy" there. Not that this is going to change my mind about having GK. I've also read enough here to realize the symptoms can and will change at the drop of my knitted hat. On the brighter side, I was in my brother's sailboat Sunday, and I did well balance-wise, no problems. - Joey
-
Hi Joey,
Congrats on making your decision to have GK. The decision process is hard, and I am set to have GK in mid-Sept. I had some confusing rounds with the docs about "what would you do if . . . ." My AN doc said he would do it. The second opinion doc said he would W&W. The third doc told me the pros and cons of all of the treatments, and then he said, "your decision". My new AN doc is the one who said "your decision". I think the fact that he gave me permission to make my own decision gave me a sense of control that I needed. The other docs just made it more confusing for me. However, I know some people would find it easier if their doc told them right up front what to do. Of course, my AN is very small, and I am not having a lot of bad symptoms so I have more choices. In Jim's case, he didn't have a choice since his issues were different. In the end, this is how I came to my decision to have GK. . . I changed over to the AN doc who said "your decision" first of all. Then I met with the radiation oncologist, and neurosurgeon, who are members of the GK team, and then the nurse gave me a tour of the GK center. The radiation oncologist gave me the facts about radiation related issues so she wasn't really in the "what to do" loop. So. . . What really put it in the bag for me was when I met with the neurosurgeon who I saw last. He gave me the same pros and cons and the "your decision" thing like my new AN doc did, but it seemed like the pros just stood out more to me. As I left the examining room, I looked at the neurosurgeon over my shoulder and the words just came out, "I'm gonna go ahead and have GK". It seemed so simple to say those words, and I feel like that was my "gut" speaking to me. I am satisfied with my decision, and I will feel even more satisfied once I get my exact date which I was told should be mid-Sept. In my opinion, if the AN is growing and/or causing problems, it is best not to ignore it. I was in W&W mode for awhile as you can see from my signature. While the AN was content to sit there and do nothing I was fine with W&W. Now that it wants to grow and is starting to bug me, I can hear it loud and clear saying, "Don't ignore me. Do something now." I had to really struggle to hear that AN talking! So, this is how the process had been for me. Different for everyone, and a personal choice about which treatment to go with. And, I have been told here by a very wise person that you do not have to explain your decision to anyone. Best wishes to you Joey, and I hope to read your positive post GK update after I post mine.
Nancy ;D ;D ;D
-
Oh.......I forgot to add! Once I told the neurosurgeon that I was gonna have GK, he responded back, "That is what I would do!" I am sure a lot of doctors have to "bite their tongue" because they know what they would do, but they also know that some decisions are best left to the patient. Afterall, we are the ones who have to live with the outcome.
Nancy
-
:) Hi Nancy, looks like we'll be strutting together into the GK sunset.... I am having mine on Oct 2nd, and I'll be seeing all the experts on the 1st. I am impressed (and incredibly jealous!) that you've had the full tilt tour already. This doesn't even seem real to me yet, but it soon will. I know exactly what you mean about the voices talking to you - and I really didn't have much hesitation in making my decision. Watch and wait was not an option presented to me, and I am anxious to be on with it. We will have to compare notes, that is for sure. Where are you going for yours?? Good hearing from you and let's keep our morale up. Regards, Joey
-
Joey,
You beat me to the GK table. They said mid-Sept, but I got the call today, and they said Oct. 7th. So, you will have to post your notes first. I am having mine done at Swedish Gamma Knife Center in Denver. How about you? Maybe you can call them up and tell them you want a tour sooner to ease your mind. I had some more questions to ask after my tour, and I called up the nurse and she met with me the next day to answer them in person. However, I did ask to talk to her in person otherwise she might have just answered my questions over the phone. From what I understand, the nurse is the "go to" person, but it might be different in a larger treatment facility. Best wishes and congrats on your decision and getting your date set up. We will definitely march forward into the GK sunset, and we will come out of this just fine.
Nancy
-
;) Happy Friday Nancy! You are right about the nurse being the main connection - I have Marina's (Dr. Link's nurse) voice mail and she urged me to leave a message whenever I liked, which I have taken full advantage of. I am thinking a tour might be a good idea, too. I'm actually getting excited about taking the step and getting this done - so I can get back here with some positive reports. My major fear at this point is the application of the headframe, and Marina assures me it won't be so bad and that the frame is in place within 5 minutes. Of course, there are also posts about people reacting to removal of the frame/screws. I am hoping that whatever mild sedation they use - will take the edge off sufficiently. (Bring on the "I don't care" pills!) I still wake up and I'm glad about my decision to go forward, and the only voices in my head now are the positive, uplifting ones!!! PS: I was thinking, as I was drifting off to sleep last night, the ringing in my left ear was sounding like the lake or marsh after dark, complete with crickets and bullfrogs..... Later, Joey :-*
-
Hi Joey,
Me, too, I am feeling good about my decision and ready to get it done and over with. When I went to see the nurse the last time, she let me put the head frame on so I would know how it feels as far as weight and position. It really didn't seem that bad. It is made from titanium, and I think she said it weighs 6 pounds. You might want to see if you can try it on as well. As for them screwing it in and taking it off, the nurse said they numb the areas before putting it on. She also said they give you an ativan in advance of having the head frame put on. She said if I needed more sedation they could arrange that also. While in the GK machine she said they couldn't put me completely out, but they could give me something which would cause me to have amnesia. I am cool with that option. In fact, when I saw the nurse the second time, the sedation part is the only clarification I needed. Once I got that info, I felt a huge sense of relief. I really do feel that the GK team wants this procedure to be as relaxing and comfortable as possible.
My tinnitus seems to be getting louder lately. I tend to thiink it is trying to reassure me that I have made the right decision to have GK. Mine sounds like crickets, and I have heard so many people describe it that way. My husband has tinnitus in both ears, and he says his is crickets also. I haven't had the lake experiences you describe. I have a sound machine that I bought many years ago thinking it would help with my insomnia, and one of the sounds was the crickets, bullfrogs, and such, and that just drove me crazy. Hopefully you are tollerating your tinnitus. I didn't start having tinnitus until a couple of months ago. I was out on a walk, my ear started hurting, and by the time I got home the tinnitus started, and it has been constant since. I was hoping I wouldn't get that symptom. It doesn't bother me too much though.
Take Care, Joey,
Nancy
-
Nancy and Joey, you both sound so upbeat and positive about your decisions...it is great to hear you. I feel like I don't have to make any decisions until my first follow up MRI in Oct, like deciding is for everybody else not me, sort of like maybe it isn't real. Anyway good for you guys, I am cheering you on from my little corner of the world (NH).