ANA Discussion Forum
General Category => AN Issues => Topic started by: Twindy on February 11, 2012, 08:24:58 pm
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You have been so informative and warm in your responses to me these last couple of weeks as I've been going through the shock of it all. Seems hard to believe that it was just a few short weeks ago that I started this journey--seems like a lifetime already. On day one I went in thinking I would be told my hearing was slightly diminished (it's at 96% word recognition) and I should come back as it got worse. Instead, sent for MRI, met with doc., and scheduled for surgery all within a 5-hour time span. Doctor was insistent that surgery is the only way to go. Fast forward two weeks and I've been through pre-op exam and ready to go, but finally get in to see the radiaologist just to put my mind at ease that I'm doing the right thing. He tells me that radiation is a valid option and it's what he would choose if it were him. I'm scheduled for surgery next Friday--less than one week, and I've spent the day with hubby pouring over articles, looking at outcome numbers, statistics, etc and am more lost than ever. I'm told I have a 60% chance of preserving hearing with surgery, but with radiation I am sure to lose it over time as the data suggests a steady decline over 10 years.
I won't ask you what you think I should do, because I know you can't tell me. But will you please share with me what factored into your decisions, how you made your decision, and if you've been happy with your choices.
Again, I thank you for the warmth and patience you've shown me these past couple of weeks.
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Twindy, we've all been where you are, so we certainly understand.
When I was diagnosed, it was a shock just as it was for you. The ENT who diagnosed me was someone I'd never seen before, and he told me that, while he performed this surgery for a living, he would not touch me because my case was "too delicate." My family doc always referred me back to the ENT who did not want to talk to me. Everyone I talked to--and I talked to lots of people--had a different opinion. One day I met a man who had brain tumors (I don't know what kind) and had had CK or GK--I forget which. He was miserable. He said they'd given him too much radiation and his brain was "cooked," that pieces of it were flaking off and clogging his spinal cord. He said he's had to have three surgeries to clear it so far.
After that talk and reading all the (old, but I didn't realize it at the time) horror stories about surgical options, I decided the tumors were my friends and that I would keep them.
Luckily, my sister is a very experienced nurse used to dealing with neurosurgery, and she put her foot down. She found the study at the National Institutes of Health, and I called and talked to the head surgeon. I told him the trouble I was having making a decision, and he told me that, since he was a neurosurgeon, he recommended surgery. He said he had research supporting his position, and that if I was interested, he'd send it to me. But he also pointed out that, if he were a radiologist, he'd recommend radio-surgery, and he'd also have research he could send me.
That honesty made me trust him, not something I do easily where doctors are concerned. He sent me the research, and I looked over it. What he sent was valid, credible material that looked fairly at both sides of the issue. So I decided to go in for testing, but I still hadn't made a firm decision.
When I got there and had the MRI, he told me the decision had basically been made for me. The tumor was cystic and growing rapidly; it had to come out right away. There was no choice in surgical approach because the tumor had gotten so big, and CK was no longer an option because results didn't occur fast enough. My only options were to choose the surgery and live (probably) or choose not to have the surgery and die in two to three months.
When he put it like that, the decision became surprisingly easy :)
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Twindy, You just have to go with your gut feeling that which treatment you choose and when to do it will work for you. We have all been thru this in varying degrees and it is not easy. It is hard if what ever treatment has more happen than what you thought it would. One can read here and research and still not have the "perfect answer" You are from the first one here to question yourself and us about what to do. As you know from all the pms that the chances are good at UIHC and part is just what the little bugger may be doing inside that no one could say for sure until see the tumor and nerves, if surgery is your choice.
I wish you well! Cheryl R
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Twindy,
Thank you for asking this question. Still no decision for me. :(
Lisa
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Twindy,
I won't go to the radiation vs. surgery discussion, I am sure you have already read quite a bit on the forum.
What I will say is that I get nervous whenever I hear that someone got pressured and persuaded to make a decision within a few hours. I will admit that I haven't followed your posts closely, so I don't know what the size of your tumor is, where you are having surgery and the specifics of your situation. However, unless your AN is already very big/pressing on the brainstem/causing hydrocephalus etc, there is no reason to be rushed into any decision.
Are you comfortable with your surgical team? Are you conviced that they have a lot of experience specific to AN removal? Surgical results can range from excellent, on the hands of an experienced team, to very poor at the hands of not-so-experienced surgeons/ENTs. Same goes for radiation patients (although I have never heard of "cooked brains" flaking off, planning for treatment, deciding radiation dose etc are all important).
So I would take a step back and ask myself if I am confident that I have received the right advice, if I feel rushed to have surgery, if in the back of my mind I feel that I would like to have more research done and if I am convinced that this particular team is skilled in AN removal.
Having done both radiation and surgery, I can comment on my opinion for both, but I really think that the first thing that you need to do is to decide whether you feel you need more time.
Marianna
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Thank you,
Marianna, my tumor is 11x4x6. I am 40 years old with two active teenagers. I work part time as a preschool director/teacher. My only symptom is the slight hearing loss. To answer your questions, my doctor is experienced in this and does 1-3/per week, I trust his skills. He said the radiologist would likely send me right back to him. Thankfully, I decided to meet with the radiologist anyway and he did not send me back but rather said the decision is mine to make. He says there is a slightly better chance at saving hearing with surgery so perhaps that tips the scale a bit in favor of surgery. The surgery date is this upcoming friday! I didn't want to do it in in March/April as we have a lot of things going on then, but could easily do it in mid-May. Doctor didn't want wait that long.
A few days ago I as thinking I just want this done and over with, but am now thinking I need to slow down, so your response is confirming my gut.
As someone who has done both, I actually would like to hear about your personal experiences if willing to share.
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Twindy, In every exam room there is a sign on the wall about patient rights and responsibilities. You should have the right to make sure the time is right for you. I haven't read UIHC's for a while but have been there enough to see it. When I was working at Boone we had to make sure a patient saw this as part of their admission packet, in this case. Since this is somewhat of an elective surgery for you and not an emergency,I would make really sure why Gantz wants to do this so soon besides just saving your hearing. As I already told you, that he wanted to do my facial neuroma the next week and I asked if a month was possible so was scheduled then. Having the surgery if that is what you do want to do, goes better when you are relaxed and ready for it. Having been to him for 10 yrs,I think some of it is his personaility, but one needs to feel as comfortable as possible for a major surgery. Many of us here have known his good experience and good staff carebut you also have to be ready for it. I wish you well in what you decide.
Cheryl R
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Twindy,
Are you saying that your doctor said he does 1 to 3 AN removals a week?
Lisa
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yes, that is correct. That is what he told me.
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Hi Twindy
In my humble opinion it sounds as though you are being rushed through something that you don't need to rush through. Your tumour sounds relatively small, so unless there is a medical reason for the urgency I would say you have as much time as you like to make your decision. Perhaps you feel bad pulling out of the surgery that has been scheduled for this Friday, but if things don't go the way you want you will have lots of time to question why you rushed (or were rushed) into it. Don't feel bad if you decide to hold off and spend some more time making this incredibly important decision.
I was like you when I first found out about my tumour, thought it would be whipped out immediately, etc etc. Now I have decided to have surgery when there is visible growth (happy with that decision), I have found the surgeons I will use, and am pretty relaxed about it all. I would really implore you that unless there is an urgent medical reason for the surgery, postpone it and spend the time researching your options. I needed about 6 months to get my plan sorted and to feel that I had paid due diligence researching my options to be fully informed.
Jockieau
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Lisa, I also have been going to Dr Gantz at Univ of Iowa for 10 yrs now due to being found to be NF2. There have been several on here over time who have went there, including many from out of state. They are up to around 70 a year now along with many cochlear inplants. I have got to know one nurse in the skull base area and she also has said how they have been doing more and more.
I am also puzzled over his wanting to do Twindys surgery so soon. He wanted to do my facial neuroma in 2006 the next week but I was able to go a month so could have all in order. I do know even with my first surgery 10 yrs ago another gal had hers the day before me. I talked to her and then saw her at the first post op visit. A person needs to feel ready for when they do have their surgery. Cheryl R
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Hello Twindy,
It certainly sounds like your being rushed. Your AN would be considered small. Many people with AN's of that
size go with watch and wait. Usually the Docs would wait 3 - 6 months to take another MRI to chart stability or growth then go from there. I have not seen many on these forums that were scheduled for surgery so quickly unless there were major issues. These you would have known by now. Personally, I would get several other opinions. One or two for surgery and one or two for radio.
I haven't read all your posts to date. Where in the country are you located? Would you be willing to share who your doc
is? Maybe more on here have had experiences with them. Good luck, I know it's tough right now.
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Thank you all for your replies and you are all confirming my gut instinct to slow down and explore all options. I am in Iowa City--small Iowa University town with an EXCELLENT hospital with a top-ranked Oto. department. Dr. Gantz is my doc. Like I said, I completely trust his skills as he's been doing these for 30 years and does them weekly. He was eager to show me a paper he just wrote comparing his mid-fossa results vs. radiosurgery in saving hearing (60% mid fossa for tumor my size vs. "you will lose your hearing in 6-10 years with radiosurgery). Now, he didn't say I needed to it in Feb., he said in the next "several months," but when I asked if I could do it first of June, he said no, it should be sooner. He seems to think the sooner the better for preserving hearing. Now thinking about all of this, he did note there was some fluid which he said may be part of why I've maintained such good hearing thus far-maybe he's worried the fluid will disappear and then suddenly no hearing???
Thinking back on it, I was in such shock that I think I just nodded my head and agreed to whatever seemed needed to be done.
I'm sure you get these sort of confused posts all the time on here--thank you for sticking with us newbies!
What factors came into play with all your decisions. Would anyone do it differently second time around?
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I've always wanted to live in Iowa. Might retire there.
Sounds like your Doc has it covered, just up to you about timing. Mid fossa would probably be your best chance at hearing preservation. In hesitation, I might throw out something to think about. AN's are notorious for killing hearing. Most people will have some hearing loss. Most, not all usually have hearing loss ahead of their treatment and hearing loss is usually how they find these things. Surgery or radio, there is a probability there will be some hearing loss before or after the procedure, or in time. Take your time and good luck. Bryan
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While I think you have time to wait, I wish I would have acted at least a little sooner. I was diagnosed in 2009 and have been W&W. Last August, my AN showed a 2.5 mm growth and I was at 88% speech recognition. Went back this past week and now I'm at 64%. Once I got over the initial shock of having the AN and doing a lot of research at that time, I slowly got away from it and didn't always think about it. I was hoping I was going to be one of those who can be in the W&W with no symptoms or problems. I also have some balance issues along with constant tinnitus.
Lisa
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Dr. Gantz has excellent reputation. He obviously considers that the smaller the tumor the more likely to save hearing. Keep in mind that at any point there is a possibility that you might experience sudden hearing loss, which would obviously complicate things if hearing preservation is the main goal.
Most AN patients are resigned to the fact that they will experience some level of hearing loss, either during W&W, or following surgery or radiation. Dr. Gantz seems to be convinced that he can save your hearing, if the procedure is done soon. I wouldn't doubt this, he is the expert.
From your point of view you need to prioritize how important it is to save your hearing (or remain at the same levels as you are now), versus having major surgery, which can have complications, and all the disruptions that go with it. Quite a few choose W&W in hopes that they will avoid the disruption, but knowing that some hearing loss is very likely. Others have hearing preservation as their top priority. This decision is entirely up to you.
The last point I want to make is that for small tumors, quite a few here had excellent hearing outcomes with radiation too (most commonly fractionated, CK). The major centres quote a 70% hearing preservation rates with CK in small tumors.
That being said, having such an experienced doctor (especially on middle fossa surgeries), with a good record for hearing preservation, right in your backyard is not something to be overlooked easily. Tough decision; ask yourself what are the possible reprecussions/outcomes of every option, and which one of these you are most willing to live with.
Marianna
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Well said, Marianna ..... I would have to agree.
Clarice
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FYI
http://www.neurosurgery.pitt.edu/news/neuronews/pdf/2010winter.pdf
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Twindy,
It was so difficult trying to make sense of all that the Drs were telling me. It would have been so difficult making a decision without the ANA & the forum.
I was a candidate for all 3 options, surgery, radiation, & W&W. I didn't want to wait 6-18 months to see results of treatment. That's why radiation wasn't for me. One surgeon told me that inflammation alone can cause nerve damage. So I ruled out W&W. If my hearing & balance nerves had already been damaged, I didn't want to wait for the tumor to grow more & possibly cause facial weakness or facial paralysis. Knowing that surgery can cause further nerve damage, I decided I had to get the surgery ASAP.
I had retrosig in an attempt to save my hearing & fully aware that this surgery results in the highest rate of post-surgical headaches. Do I regret my decision? Not at all. I chose what I felt was the lesser of the evils for me. I lost more of my hearing with the surgery & I have struggled with chronic headaches. I don't know that opting for the other surgical approaches would have avoided headaches. I find it best not to second-guess my decision.
I'd say that the first 3 years after surgery were very difficult. Because of time & a proactive attitude, I can say that it is so much better for me now.
Syl
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Hi Twindy
Factors that have influenced my decision:
I wanted to have another MRI after my initial MRI to see whether I had a tumour that was rocketing along growth-wise - this enabled me to understand the ball park I was playing in. 2nd MRI showed no growth. My 3rd one is in a few weeks and I feel my symptoms have increased, so it will be interesting to see.
I prefer surgery over radiation. I want to know where I am at after the surgery - and deal with whatever the outcomes are then - SSD, facial issues, fatigue, feeling fantastic, whatever. I don't want to have radiation and worry that every twinge is the tumour growing / dying / taking my hearing / etc etc. I want post "dealing with it" (in my case surgery) to be about recovery / getting better - however long that takes and whatever is requried. So surgery is my preferred way to go - and it will be middle fossa due to still having good hearing in that ear.
My surgeon has stated he will recommend surgery when the MRI shows growth (or my symptoms are worse). I don't want to have surgery until that point as I don't want to have a bad outcome and think "well basically I felt fine before having the surgery, and now I am SSD / droopy faced / headaches / or whatever the problem is". I want to feel I had the surgery for a reason / that there was a driver for it. I think "growth" is a good enough reason.
I am not prepared to continue with W&W if there are signs of growth after an MRI, as I will then worry that the AN is becoming more instrinsically involved in the nerves e.g. that it will be more tricky to remove, increasing risks. I wouldn't want to continue with watch and wait and then find after surgery that the tumour was wrapped up in the facial nerve, for example. I would then question "if I had it out earlier, perhaps this would not have happened". Of course it might be wrapped up in the facial nerve as we speak, but mine is only small (7mm x 6mm) so my "action trigger" is signs of growth, and hopefully I'll not be too far along that things are getting completely !@#$ed up. If they are, well, I don't know that the growth between one MRI and the next was really the thing that made the difference - that outcome was probably my destiny even if I had rushed into the surgery up front without any W&W.
If my hearing suddenly goes prior to surgery (which can happen even without growth) so be it. I won't be happy, but feel a bad surgery experience / outcome - facial issues being my biggest fear - would be worse than SSD.
Within my parameters I agree with the doctor who says "what are you waiting for" - but if the thing isn't moving at all and not causing any symptoms I would answer "I am waiting to know the thing is on the move".
So growth for me = time to whip it out!
For me, time was the key to getting my head straight. It is always worth getting more than one opinion too, no matter how qualified / experienced your doc is. I even sent my details to House (I am in Oz) and had a lovely and informative calll from Dr Brackmann, who recommended immediate removal. I consider him a world expert, but still feel happier with the current alignment with my surgeon and his recommendation.
Hang in there Twindy, you will come out the other side* soon (*enlightenment on your AN isssyooooo!).
Jockieau
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Greetings Twindy,
You've gotten some great responses to your question and I have enjoyed reading this thread. Another thread you may want to take a look at is here:
http://www.anausa.org/smf/index.php?topic=3791.0
Last spring I was in your shoes. I was diagnosed in April and felt that I had to take action by late May. The doctors were all saying I needed to act quickly. That it was better to do it sooner than later. I was reading a novel recently written by a surgeon and in the book he shared some inside lingo that doctors use: "Why wait when you can operate" and, "If in doubt take it out". Hey, they are surgeons and that's what they do. And some do it VERY well. Surgery has comes such a long way. We are lucky to have these new surgical procedures available to us.
For me surgery just felt wrong and radiation didn't feel right either. I was so torn. And waiting and watching didn't seem like an option. The doctors were advising against waiting and watching but only gave me a 50/50 chance of saving my hearing with surgery. Surgery came with a long list of possible complications. I have a 5 year old daughter and that was another BIG consideration.
After obsessively reading this forum everyday, I decided to wait and watch and try a more holistic approach. I started doing aggressive acupuncture treatments with electricity. I stopped eating wheat and dairy. I stopped drinking coffee and switched to green tea. I avoided salt and sugar. I started drinking a lot more water. I took supplements, curcumin, reservatrol, b vitamins, holy basil and most recently added honokiol to my list. I also started doing a lot more Kundalini Yoga which works specifically on the nervous system. I do it almost everyday now. I also refused to take ownership of the AN. I referred to it as the AN in my head, or the marble in my head.
I had an MRI last July that reported that the AN was stable with no growth. The Dr. said he still did not recommend waiting and watching but since it was stable, it would be OK and we would do another MRI in 6 months.
I'll say this next part with caution, I just had that 6 month MRI (10 months since diagnosis) and apparently the tumor has reduced in size by about 5mm. I'm not sure what this means yet but I do know that wait and watch was the correct choice for me. Even if the AN continues getting smaller or stays the same size, I still may lose my hearing. So far I still have my hearing and it is seemingly stable. Tinnitus comes and goes, but usually it's because I'm tired or I've been around loud noises.
From what I've read, there are ANs that grow very quickly and those you have to look out for. That's why the Drs did the 3 month MRI, to see what the growth rate was. My hope is that I can hang in there for awhile if not forever and not ever have to choose a treatment. If I wait long enough maybe a better treatment will come forth.
I'm not a doctor, but I personally feel that estrogen and cortisol along with adrenaline have something to do with the AN in my head and that is what I focused on. Hopefully the reduction in size is not an error with the most recent MRI. I won't have another MRI for 9 months. Fingers crossed I'll have good news then. The link to the thread I posted at the top of this post was what gave me the courage to wait and watch. You 'll find what is right for you. Listen to your heart. Happy Valentine's Day.
Lisa M
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Thank you all so much for your thoughtful responses. Yesteday I cancelled my surgery for Friday so that I can slow down and learn more about radiation. If I decide surgery was the way to go, I will reschedule, hopefully April, May, or June. So now step two in this process, gather as much information as I can and get some opinions regarding radiation.
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Hi twindy. I was diagnosed thanksgiving 2011 and had Translab lab on 1-25-2012. I chose surgery over ww and radiation because I did not want to wait for the tumor to get bigger and more attached to my nerves and press further on my brain stem. I did not want to have radiation because it seemed like the chances of splatter and turning things from benign to maliganant....or changing the cellular structure..well my gut David no way! Plus I am 47 and I have 6 children at home still, so I felt like getting this thing out of my head now and moving on with my life and not waiting was right for me. I am almost 3 weeks post op. I am doing fantastic and do it regret having surgery at all. I even drove today, have been doing some cooking. I am still in the be careful moe but dr. Friedman told me last night that after another week, I can do as I wish. I asked him about my new stationary bike. It is an agonizing decision I know. But you will do what is right for you. If you choose surgery, however, you will be courageous and with a great attitude...will do awesome. Good luck twindy. :))
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Twindy - I'm so happy for you that you have made the choice to learn more and bide your time.
Karen
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In 2003, I discovered that a friend was completely deaf in one ear, caused by a 2cm acoustic neuroma.
She was in her early 30's, had two young children aged 3 and 9 months.
She had it removed in a 13 hour operation, her facial nerve was compromised, and she died 3 weeks later from acute liver failure as a result of an allergic reaction to the anaesthetic.
So when I discovered I had an Acoustic Neuroma in 2010, surgery was something I was not keen on.
I chose Cyberknife and I am very happy with my decision.
Hearing has come back and is almost as good as it ever was.
Wonky head, stuffy ear feeling, tiredness, all gone.
I am back to my old me, and after 3 years of symptoms I did not think that was possible.
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Reasons that I chose radiation initially (in no particular order):
-My son was a baby, and my daughter was 4 years old at the time. I had just returned from maternity leave to a very demanding job.
-No help from immediate family close by - both my husband's and my families live overseas.
-My husband couldn't take a lot of time off work, fearing for his job (this was back in 2008 during the recession, with companies downsizing etc)
-I was afraid that if I had serious side effects like vertigo, headaches, needing rehab etc., I wouldn't be able to take proper care of the kids. Given the possible side effects, hearing loss seemed to me at the time the less worrisome.
-No qualified doctors in close proximity, meaning that I would need to have surgery out of town, posing all sorts of problems with childcare etc (see point 1 above). I was also afraid that in case of complications, I would be able find qualified specialists in my town, meaning again more travelling.
I was essentially asymptomatic, and knew that I will likely be worse off after surgery.
These were the reasons why I chose radiation at the time, even though I knew that for me it was a long shot, since my AN was already quite large. I thought I would give it a try. Even though I know the outcome now, looking back I still think that I didn't have another option.
Yes, it didn't work. But it bought me some time, as in the 3 years that followed my kids had grown enough, the job situation was more secure, my mother in law had retired and was able to come and spend a few months with us, and I did my research thoroughly to choose a very highly skilled neurosurgeon.
Marianna
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You have to decide for yourself - don't let anyone else, including a doctor (unless you have no treatment options due to size and/or location) - tell you what to do.
IMO there are two parts to this decision:
1) who will be your doctor and 2) which treatment is best for you.
I'm a little unique here because I only went to one doctor - a neurotologist that my ENT referred me to. He does both radiation (GK) and surgery and I loved him from day one. Just knew that he was the doc for me, so that decision was easy. If I didn't like the doc - or he insisted on one treatment over the other for me without reason - I would have consulted with others until I found "the" one.
My doc wouldn't make my treatment decision for me - flat out refused - so that part was a little harder; and although I was initially not happy that he refused to make my choice, in time I came to understand that he was absolutely right.
The first words out of my mouth were "there's no way I'm having surgery", mainly based on the length of the hospital stay and recovery and the fact that I single-handedly parent two children who were 10 at the time. I couldn't imagine being off of work or unable to take care of my kids for any length of time.
But when I started to consider radiation I realized it wasn't for me. First and foremost, I just wanted to have the tumor out of my head so I could get back to my life. I also didn't want to deal with the followup MRIs post radiation and the thought (at least in my mind) that every little twinge, headache, etc., might mean a tumor that was continuing to grow. In addition, I wanted to know my side-effects upfront so I could deal with them (surgery) vs. potentially waiting 12-18 months for side-effects to occur (radiation).
So, I sucked it up. Had a heart-to-heart with my family about the help I'd need with my kids and with my boss about needing time off for brain surgery.
I knew in my heart, my head, and my gut that I'd made the best choice for me - and I've never second-guessed myself.
You want to get to that point - both with the doc(s) you choose and the treatment you choose.
It's one of the hardest parts of the AN Journey, but you'll get there.
Have faith and good luck!
Jan