ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: BlueSky on June 29, 2012, 09:38:21 am
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Just wanting to know what other peoples thought processes are about this.
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Bluesky,
Hmm......Good question! For me it was different it was a list of things that I completely ignored : a fall in a shower in 1995 breaking 3 ribs, in the shower shortly thereafter I felt a fullness in my ear which was improperly diagnosed as swimmers ear and I thought that during the 80's and 90's I had spent to close to speakers at rock concerts, once when my wife and daughter thought that it wasn't tolerable anymore I got tested for a hearing aid which I got without the proper test, later when I lost it I fell and had a radial fracture of my right arm, after the painful breaking over the years of all my fingers on my right hand at least twice, (it must be noted here that I have a right sided weakness from two strokes in 1970 and 1974), then finally in 2011 while away in Ireland with my family I broke my right arm again and had to have titanium put in my right arm.
Does admitting all of this make me fell foolish? yes, but it all starts with symptoms that something isn't quite right? When you look back on my history with falls and fullness in the ear, I was ignoring what to you folks would seem rather obvious.
The fact that I had had a brain operation (1974) before made it seem ridiculous to consider that anything was happening to another region of my brain.
So people that is why I keep telling you "listen" to your body it maybe trying to clue you in on when you add it all up. Get checked regularly by your MD at least yearly. Go even if you don't want to!
It is a miracle that I am here so many years later to tell you this, but I am DON'T IGNORE YOUR SYMPTOMS please! I had a large neuroma 3.1 CM I didn't listen to 13 Neurosurgeons! Thank goodness, I finally listened... Don't wait have it out while it is small!
Bluesky, aren't you glad that you asked?
Mike
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Hi BlueSky,
I would say - before it effects your hearing or if it is impacting the quality of your life and health.
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I agree with Mike and Chances...
Listen to your body and the symptoms and definitely if you think either is "sending " a signal,, take heed..I waited three yrs from diagnosis to surgery and wish I had gone on earlier.. my symptoms progressed and the tumor was pressing hard on the brain stem so watch carefully,,, best of luck,, Jane
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My criteria to move from watch and wait: I thought my hearing loss was in my R ear but the AN is in my L. ear! Confirmed diagnosed with an MRI on March 19th, 2012 by chance: 1cm x 6mm x ?
My audiograms show excellent hearing but my allergies get in the way. My right ear has been extra full and aches. I saw the regular ENT. He explained, "think of my R. ear (good ear) as my ONLY kidney! He said, I will eventually lose my hearing in the left ear."
I have been concerned about taking Dexadron (steroids) after treatment but the ENT said, "take them!" He doesn't like to use steroids much but saves them for the "big guns!" He said, "my ear is about to be hit with a grenade...the big guns!"
I am going thru thru the work-up to have SRS the week of July of July 23rd. I'm anxious. I hope my hearing is saved along with everything else. The lowest dose of SRS (12.5grays) is supposed to be = to FSR of 40-50grays). We will see.
JW
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Hi Blue Sky,
I noticed a hearing loss in my left ear at least l5 years ago and just thought it was from loud noises. I finally went to an ENT five years ago and was misdiagnosed. It wasn't until January of this year that my primary care doctor sent me to another ENT. I had the MRI and an AN and a meningioma were discovered. By this time, it was too late to save my hearing. I then studied all of my options and went with GK at Yale New Haven Hospital in March. Don't wait too long to decide what you want to do. Study all of your options and, along with your doctors, you can make an informed decision.
Good luck,
Bonnie
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My decision will be based on growth rate.
The hearing on the right side is gone.
April 2012 MRI diagnosed 3mm x 4mm by 9mm.
Next MRI October 2012.
Pretty sure I'd opt for radiation early on.
I'm 65 and wouldn't want to be having surgery at a more advanced age.
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If my tumor was smaller, I'd have gone radiation, no hesitation.
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I`ve been W+W for 5 years now. I feel good and would be happy to gracefully grow old and take whatever I have with me. I look at my yearly MRI as my reference point. If we say "stable" there is nothing for me to think about. Best wishes, Mickey
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Bluesky
I'm basically in the same camp with my good buddy Mickey. My tumor is small and my hearing loss began happening a long time ago. I've lost about 55db which is a lot. That tells me that surgery or radiation isn't saving any of my hearing. Now it's just watching to see if I have any SERIOUS issues coming up. Right now I have some motion issues and have had some bouts of nausea. If this gets to an unbearable level then I'll have to make a decision. So it depends on your situation. Everyone is different. If your tumor is small you probably have time.
Good luck.
Glen
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Bluesky I'm in the same boat. I think mine is on the bigger side (3.1cm x 1.8cm) and I'm only 44 with 3 kids. hearing is already severely lessened, but I don't want to get any more of the same symptoms. My doc says he sees no problem in waiting 6 mos. for another MRI, but I know I'm going to worry that whole time. Also, they say get it out earlier rather than later. I just don't know what the criteria is either.
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Hi Kedge,
My AN is smaller, 6mm right now but it is starting to cause me problems (hearing loss, tinnitus, some balance issues) so I have decided when I get this thing treated I want to have surgery so I have started getting second opinions from the surgical teams I am considering. You might want to do the same thing, I know many people on here have consulted with multiple doctors until they found the one they were comfortable with treating them. Their opinions might help you decide if you should wait or not.
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since reading yesterday a good bit on here, i am definetly moving in that direction. i was almost at the point where i just thought it was nothing much to worry about. now i know it isn't the worst thing that it could be, :), but it seems that I could do to be a bit more proactive about getting more information. Thank you to everyone for taking time to share stories and give opinions.
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You can ask your ENT the location of the closest and best treatment center for acoustic neuroma.
Get the US News/World Report report on the best hospitals in the U.S. for 2012. I believe they also list info on the ones with the best Neurosurgery/Radiooncology Departments. Find the best ones near you. Call for appointments.
Johns Hopkins gives free opinions if you mail them your written reports of your MRI's. Columbia is ranked very highly and so is NYU. Mass General is supposed to be the best, I think, but I don't believe the doctors at these last three hospitals there review your records for free like Johns Hopkins or House does.
I am still learning all this.
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I find myself torn with this as well. I'm recently diagnosed, and still pretty young. At first I wanted them to just take it out so I can get on with my life. I am sick of the headaches, balances issues, ear pain, ringing, etc. But, the doctor said that the surgery won't do anything to get rid of those, and that it could just make them all worse permanently, and that I'll be deaf in one ear instantly, versus waiting and having the symptoms, but still maintaining some hearing.
Somedays I still want it gone. Just for piece of mind maybe. To get the recovery over and done while I'm still young and otherwise healthy. But, as of right now, I'm still waiting. I guess until maybe the doctor says its go time? Or I just get so fed up that I call and make the appt haha.
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Mary-I read your posts and it seems you are going to an excellent resource-Dr. Barker from Mass General.
I too have headaches and get tired, probably from my brain compensating/not compensating for the balance nerve. I almost always have the earringing. I am starting to have to guard against depression and inactivity. I am sick of the "wonkiness."
I too was told that surgery or treatment may/may not lessen the symptoms. However if the thing is growing, the idea is to stop its further growth. Mine went from 1.1 to 1.4 cm in length in five months. I am going to do either surgery or radiation, but which? I'd really like to be more symptom free but there seem to be no guarantees.
Yet many folks have had various treatments and are living quality lives.
I'm done with watch and wait. But my son gets married September 7th so I want to be as present as I can be for that, and then I will act. Although, if I knew I'd have few side effects, I'd do this next week!
Millie
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Mary,
If the outcome you don't like is from one particular doctor, find another, and if you don't like that one find another. The choice is up to you. Brain surgery is not new. Find the doctor and the center you are most comfortable. There are others on this site who will be able to chime in. You must not give up hope, your effort will be rewarded with a good outcome!
Mike
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I am so glad I read this post. I was diagnosed in December 2011 with a 5 mm x 10 mm AN on the left side. My neurosurgeon and neurologist have made me feel that my symptoms are imagined since the tumor is so small. My symptoms include intermittent bouts of dizziness with slight nausea, balance issues, hearing loss, and tinnitus. I am scheduled to have a repeat MRI in September. Is it uncommon for someone with a small AN to have my symptoms?
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Hi, Teresa ~
The answer to your question is 'no'. Often, although it may seem counter-intuitive, small ANs give the patient the most trouble. Although size matters, AN location and configuration are equally important as that can generate the kind of symptoms you're experiencing. The upcoming MRI should tell your doctor a lot. If he doesn't respond to your symptoms and again dismisses them, I suggest you seek out another doctor. Oh, and welcome to the ANA discussion forums. :)
Jim
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I remained in watch and wait with my regrowth until my two children were grown such that my husband (at the time) would be able to cope with the two of them and me ill. I wanted to have the re-growth removed while it was still small (hence shorter surgery, easier recovery), I wanted it done before the tumor grew big enough to do any damage, and I wanted the surgery doen before my children were old enough to fully realise what was happening and be scared (young enough to acept it was a bump in my ear and not a brain tumor).I chose to have the tumor regrowth removed, it was not yet medically required.
Kathleen
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Teresa
No worries. I have all the same symptoms. You are not crazy. You may get the sense that your doctor is ignoring your symptoms. He may or may not be doing so. If he's any good he won't act until it's really necessary to act. I don't think he can do a whole lot until that point. I suggest carrying a box of Bonine {motion sickness medication}. It's an over the counter drug. When you are getting the dizzies it can help but it can also make your drowsy. I had a bout of motion sickness earlier this year for about 3 days and Bonine helped me through it. I carry it in my bag everywhere I go.
What bothers me most about the symptoms is the unpredictability. Some of the symptoms can come and go like a speeding train or pull into your station and hang around a while.
Glen
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I was watch and wait for three years but had terrible pain so had it removed with no regrets.
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Generally a good time to move from watch & wait to a procedure is 1) your MRI shows growth or 2) your symptoms start to increase or get worse.
Jan
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I think so too. I know last year, I could hear with my left ear and had no fullness in my head. I was also not diagnosed until February (late)2012. By then, my hearing had worsened and I was getting "feelings" in my head I never had before. Like something in there. Perhaps a cross between a clogged ear and a spirit sitting on the left side of my head. Then, the ear ringing started.
I take hope in Jim's saying the little ones cause the most trouble sometimes. Does that mean removing little ones gets rid of most symptoms? I know hearing loss with surgery is permanent. However I feel even relief of half the symptoms would be a blessing.
Lately I think I get pains in my left head. Maybe it is tension and/or stress.
I look fine but feel tired.
Your symptoms definitely have a source, in my humble opinion!
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I Like what Gman said "What bothers me most about the symptoms is the unpredictability. Some of the symptoms can come and go like a speeding train or pull into your station and hang around a while". Personally I like the speeding train part. I am still awaiting decisions on the course of treatment. Mine showed a growth spurt on my last MRI in July. Except for the ringing and squealing, most symptoms follow the train scenario. Growth and increased symptoms will sometimes indicate a need for trearment.
Skip
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That's why I made a decision about treatment. I have to say, I am glad I made a decision. Now I want to get on with my life. No spirits sitting on my head would be a plus.
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Being a W+W for 5+ years now my criteria has to do with Growth, Symptoms, and my Age. NO GROWTH is most important! Symptoms are variable in everyone. I know I have tinnitus (which I`m used to) and eventually would expect my hearing to diminish as I get older. As for age, stats say the older you are the more chance your AN has reached its top growth. I`d say if your 55 or better try to deal with everything if possible and monitor growth W+W. Remember also W+W dosn`t mean do nothing... Just the opposite with a heathy lifestyle (Tips from the W+W Brigade) Best wishes, Mickey
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Skip
Thanks for the complement.
General comments to everyone reading this:
I think the important things in W+W have to do with:
1. Watching to see if the dark passenger grows over time.
2. Keeping an eye on the symptoms so that you realize when they are worsening BUT not allowing yourself to be overcome by having symptoms because they are a part of it.
3. Accepting that there is a fair chance that things may get worse.
4. Learning and growing into it so that by the time you must ACT you can stand in your truth and deal with it in the best manner possible. This is a head game in more ways than one.
I, for one, don't like it when I 'm laying on my right side and it sounds like there is a big potato growing out of my left ear. However, I know that I have to learn to accept this. I'm not saying it's easy. Since I don't have the luxury of choice, my only path is to find my peace with it.
Here's where I am lucky. I have my fellow ANA members who I am constantly learning from. With every obstacle they tackle I'm given more strength. That's what the organization is all about. We all share our experiences. Contrary to what many outsiders believe, most of these people are very positive given their situation. We all understand the value of that. We all know it goes a long way. It means a great deal to me.
G_MAN
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Good words, G-man. I think the symptoms added to "regular" life challenges can find us (me?)
pretty down and now I find myself forgetting a lot too. I think it is stress. It is good to read the wise words posted here.
Thank goodness for the forum .
Millie
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Words of wisdom from the voice of experience. Thanks Gman
For now I am stuck with the "Train Station Scenario," where the tinnitus has taken up residence. Hopefully treatments will lessen this. The good thing is...that no matter how bad it is there others with much worse conditions. Proton beam here we (the AN and I) come!
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