ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: anothereveryman on December 12, 2012, 08:15:43 pm
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I have an intra-cochlear schwannoma, which according to Dr. Slattery, is "the best tumor to have if you have to have one". He said it in most cases fills up the inner ear, cuts off its own blood supply and goes dormant, but in some rare cases can grow from there onto the nerve or toward the brain. He stress that this is rare but is still a frightening possibility for an already tense, anxious person like myself.
He said his recommendation is to do nothing but perhaps get an annual MRI done to look at it. I could barely afford the first MRI with the good graces of my extended family, so doing this early doesn't sound entirely possible. I'd like to get this horrible thing out instead, though that is probably not possible for a long while. I have no more hearing left to lose in that ear, and would rather just not have any additional issues in the future, facial paralysis, dizziness, or even pinching on the brain stem.
Well, going back from my fears, he said in most cases nothing else happens with it, though in some rare cases it can grow beyond the inner ear. Watch and wait... if I could, I'd have it out tomorrow. I have no more hearing left to lose.
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I was in watch and wait for a year and a half after my initial diagnosis. It was very intense at first, but after awhile, I didn't dwell on it much (and that is HUGE for a worrier like I am!) I'd have stayed in that mode for much longer, but the tumor started growing rapidly and causing intermittent facial numbness and twitching. I was terrified of the surgery. Now that it's over, it really doesn't seem like such a bad thing.
Being inside of your cochlea, it's about as far from your brain stem as one of these tumors can be. Dr. Slattery was my doctor. I really like him and I trust his judgment about these things.
How's your balance?
Liz
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I was in watch and wait for a year and a half after my initial diagnosis. It was very intense at first, but after awhile, I didn't dwell on it much (and that is HUGE for a worrier like I am!) I'd have stayed in that mode for much longer, but the tumor started growing rapidly and causing intermittent facial numbness and twitching. I was terrified of the surgery. Now that it's over, it really doesn't seem like such a bad thing.
Being inside of your cochlea, it's about as far from your brain stem as one of these tumors can be. Dr. Slattery was my doctor. I really like him and I trust his judgment about these things.
How's your balance?
Liz
I have had no noticable problems with balance. I will probably be watching it closely out of anxiety... I even test my facial muscles to see if I can still move them independently. Little things like that.
I know AN is a different thing than what I have, but it sounds terrifying what you experienced, even though you had it fixed up. I personally would prefer to have this thing removed just for peace of mind once I am able to/can afford it. Which may be a long time, if ever. :/
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I have no idea how much surgery will be, if they will even give me a payment plan, or if I'll ever be able to afford it. Wait and see simply seems like a pointless risk. I have no more hearing left on that side to lose, so I don't really mind translab.
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What do I do? Nothing? I'd so prefer, wish to have this removed sooner rather than later. Do I have to wait and see if it gets worse years from now before anything will be done? :(
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Hi
I think I would try to take Dr Slattery's recommendation and watch and wait in your situation with your additional economic issue,,, I know you may think it will be difficult ,, but if he recommends it at this point, I believe I would try to go with that for now unless you have more dire symptoms than hearing loss,,
I also had a phone consult with him and he is very knowledgable and caring, even called me the year after my surgery to see how I was ,, ( needless to say, I did not use him),, point being,, hearing
Loss is to the worst symptom to deal with,,I know as I had translab and am SSD(single side deaf),, bothersome but not too bad when you get used to it,,,,,,,, :P
I don't mean to dismiss your case or feelings at all,, I was w&w for three years so I know it can be difficult,, but take his recommendation seriously and who knows, maybe when/and BIG IF you need further treatment,, your financial situation will have changed and you can more comfortably go forward with some treatment ,, this is a terribly expensive surgery not to mention possible complications to go into without much thought and financial security,,, in my humble opinion ,,,,
I really do wish you well and hope that you can find some inner peace to get you through this and on with your life,, best of luck to you and keep us updated,,,Jane
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Hi
I think I would try to take Dr Slattery's recommendation and watch and wait in your situation with your additional economic issue,,, I know you may think it will be difficult ,, but if he recommends it at this point, I believe I would try to go with that for now unless you have more dire symptoms than hearing loss,,
I also had a phone consult with him and he is very knowledgable and caring, even called me the year after my surgery to see how I was ,, ( needless to say, I did not use him),, point being,, hearing
Loss is to the worst symptom to deal with,,I know as I had translab and am SSD(single side deaf),, bothersome but not too bad when you get used to it,,,,,,,, :P
I don't mean to dismiss your case or feelings at all,, I was w&w for three years so I know it can be difficult,, but take his recommendation seriously and who knows, maybe when/and BIG IF you need further treatment,, your financial situation will have changed and you can more comfortably go forward with some treatment ,, this is a terribly expensive surgery not to mention possible complications to go into without much thought and financial security,,, in my humble opinion ,,,,
I really do wish you well and hope that you can find some inner peace to get you through this and on with your life,, best of luck to you and keep us updated,,,Jane
I wanted to ask if anyone here had very loud tinnitus during their experience with their tumors, and if removing it reduced at least somewhat the tinnitus. I am ready to accept that my hearing on my left side is gone. The loud ringing I get almost nonstop (at best it shifts pitches temporarily or is slightly softer) is in ways worse than the profound deafness on that side. I'd like to hope that someday getting this thing out of me if I can might, just might, reduce the ringing.
Again, I'd like to know some of your experiences if they involved tinnitus.
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I'm sorry, but you should probably embrace the tinnitus as a friend, or at least a constant companion. It likely ain't going anywhere. There are things that can help, such as rest and good diet, but no real cure.
W&W is not such a bad thing. Even with the best, most experienced surgeons, you can still have ongoing issues, such as blinding headaches, and thus surgery is not necessarily an easy out. Take a deep breath and try to put things in perspective while looking at long term options.
Good luck on your journey.
-Tod
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Admittedly I do not know that much about intra-cochlear schwannomas, but I do know that I never had tinnitus until after my first surgery to remove my AN. Like Tod, I believe many of us will have tinnitus for life. Giant strides are being made in the area of tinnitus treatment. If you check the American Tinnitus Association web site (http://www.ata.org/ ), you can follow the research being done.
In other words, I would not push for this surgery now in the hopes of tinnitus relief, but check with Dr. Slattery for his opinion, at some point.
Just FYI, for me, caffeine intake, lack of sleep, and stress all make my tinnitus much louder.
Many thoughts and prayers.
Clarice
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They are all offering good advice. If your tumor is inside the cochlea, maybe it will never press on your balance nerve? I might ask Dr. Slattery about that, but really, I would not worry about symptoms you don't have. At the very least, Dr. Slattery's recommendation has bought you some time to research this. I don't know what your situation is - but is there a possibility of acquiring medical insurance to make a future surgery possible?
Surgery is not likely to fix anything that is currently bothering you and could introduce problems you don't have.
Give yourself some time. The initial diagnosis is a huge shock, and Dr. Slattery has actually given you a very good prognosis. I would bet there are some folks on this list who envy your situation, as weird as that may sound. Let us know how we can help you.
Liz
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My tinnitus is very loud today... and it was very loud last night, with some gaps of peace. I've had tinnitus as long as I can remember, but this is something else, and much louder. It interferes with everything, even thinking. I'm terrified... knowing I can do nothing for such a long time, helpless with this thing possibly growing in my head that I can only hope stays in the space it already ruined. :(
Maybe my opinion will change of it... I'm not the only one with a tumor in my head, though it doesn't help that I have diagnosed anxiety and depression disorders that predate this. I am not coping well and it's hard to think of anything else. Am I doing this wrong, I think to myself. Do I need to do something now, that I haven't done yet, before this gets any worse?
My hands tremble as I type, I am that afraid.
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Possibly your anxiety disorder is compounding the normal distress that accompanies AN diagnosis. Have you consulted with the physician treating your anxiety?
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Yes, I currently have a therapist and a therapy group. The others there are on the other side of things compared to here: none have outstanding physical medical problems but crippling anxiety or depression, or both. I had issues with both well before I lost my hearing, and the progress I made seems frustrated by this new problem, and all of the fear I feel about it, the feeling of "I need to do more, if I don't do more I am endangering myself" yet feeling powerless to really do anything. I'm too poor and poorly connected. It was a huge boon to me to even get that second opinion from Dr. Slattery and it's hard to imagine getting much more than that, no matter how afraid I am.
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anothereveryman,
Please observe what you are telling yourself and how it affects your emotional state. I have learned that thoughts are what engender feelings. It can be very empowering to make conscious choices about what you think. You are not powerless. In fact, you are the ONLY one who can determine your thoughts, and therefore your feelings.
If you want to talk more about this, please PM me.
In caring,
Liz
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anothereveryman,
Please observe what you are telling yourself and how it affects your emotional state. I have learned that thoughts are what engender feelings. It can be very empowering to make conscious choices about what you think. You are not powerless. In fact, you are the ONLY one who can determine your thoughts, and therefore your feelings.
If you want to talk more about this, please PM me.
In caring,
Liz
I suppose it would help to know where to start, what to think that is both hopeful and not deceiving. My mind easily drifts into scary "what ifs" and a sense of general unsafety. It's been a very difficult last two years and some days I wonder how I manage not to hurt myself or ideate about it.
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Another ~
I've read your posts and your situation is somewhat daunting but not insurmountable. Upon receiving the AN diagnosis envisioning potentially dire scenarios is fairly common for all AN patients so your fears are not terribly unusual and not without some basis in reality, despite the fact that you have an intra-cochlear schwannoma instead of an acoustic neuroma. However, worrying doesn't accomplish anything. As Dr. Slattery informed you, these particular tumors tend to grow very slowly so observation ('watch-and-wait') is the typical approach following the initial diagnosis. Your facial nerve will likely not be affected due to the location of the tumor (schwannoma) unless it gets extremely large. You will want to have another MRI performed in, say, a year, to see if the tumor has grown.
Meanwhile, try not to imagine the very worst possible outcomes and remember that these tumors are almost always benign and treatable with radiation or surgery. Although lack of finacial resources is an obstacle, it should not totally control your thinking on this issue. There is help available. Here is a link to a website that may be useful to you. http://www.chcf.org/publications/2009/10/county-programs-for-the-medically-indigent-in-california (http://www.chcf.org/publications/2009/10/county-programs-for-the-medically-indigent-in-california)
Jim
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Another ~
I've read your posts and your situation is somewhat daunting but not insurmountable. Upon receiving the AN diagnosis envisioning potentially dire scenarios is fairly common for all AN patients so your fears are not terribly unusual and not without some basis in reality, despite the fact that you have an intra-cochlear schwannoma instead of an acoustic neuroma. However, worrying doesn't accomplish anything. As Dr. Slattery informed you, these particular tumors tend to grow very slowly so observation ('watch-and-wait') is the typical approach following the initial diagnosis. Your facial nerve will likely not be affected due to the location of the tumor (schwannoma) unless it gets extremely large. You will want to have another MRI performed in, say, a year, to see if the tumor has grown.
Meanwhile, try not to imagine the very worst possible outcomes and remember that these tumors are almost always benign and treatable with radiation or surgery. Although lack of finacial resources is an obstacle, it should not totally control your thinking on this issue. There is help available. Here is a link to a website that may be useful to you. http://www.chcf.org/publications/2009/10/county-programs-for-the-medically-indigent-in-california (http://www.chcf.org/publications/2009/10/county-programs-for-the-medically-indigent-in-california)
Jim
Thank you for the support and for the information. The first challenge may be getting that followup MRI... they're very expensive around here.
You said that only if this tumor got very large would it mess with my facial nerves or my balance. That is assuring I suppose... but because a followup is requested its easy to think it'd be so much easier just to have this thing removed. I can't get my wish though, it seems.
I will check that link and see if anything there might be able to help me. House Clinic already did, thanks to previous assistance from this site.
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Hi,
unfortunately having surgery does not mean that there will be no more need for follow up. Most of us still need regular follow ups, for the risk of regrowth. So having surgery will not help you avoid the cost of follow up MRIs. Surgery may also cause all sorts of other problems, which might need regular follow ups with specialists (i.e. PT, vestibular therapy, headaches, eye and facial issues, not to mention the constant need for eye drops that many of us have, which also amounts to a substantial cost).
Please do not consider that it is "easier" to have this surgery, this is a major surgery, which of course sometimes is absolutely necessary. But if someone with the expertise of Dr. Slattery advises you to watch and wait, for sure I would take his opinion seriously. Especially given that the House doctors generally give the W&W advice sparingly.
Marianna
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Hi,
unfortunately having surgery does not mean that there will be no more need for follow up. Most of us still need regular follow ups, for the risk of regrowth. So having surgery will not help you avoid the cost of follow up MRIs. Surgery may also cause all sorts of other problems, which might need regular follow ups with specialists (i.e. PT, vestibular therapy, headaches, eye and facial issues, not to mention the constant need for eye drops that many of us have, which also amounts to a substantial cost).
Please do not consider that it is "easier" to have this surgery, this is a major surgery, which of course sometimes is absolutely necessary. But if someone with the expertise of Dr. Slattery advises you to watch and wait, for sure I would take his opinion seriously. Especially given that the House doctors generally give the W&W advice sparingly.
Marianna
Frightening, what you say... but it makes sense. Yet it's so easy for me to think "if trying to have this thing removed isn't the end of it, then how bad does it get when I DONT have this thing removed?"
I can't afford to remove it anyway, let alone even know where to begin to sign up. So watching and waiting has been decided for me, no matter how frightened I am.
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Sorry for making this sound so frightening, for sure there are many very positive outcomes from all three modes of treatment, surgery, radiation and W&W. For all of us facing an unknown outcome is unsettling and even frightening, but there are no guarantees in life anyway. All we can do is hope for the best. Having gone through the entire experience, including a failed radiation treatment, further growth and surgical removal when the tumor was already quite large, I can say that I have seen people facing all sorts of worse situations, including chronic conditions, terminal cancers etc. At least our condition is benign and treatable, and sometimes doesn't need treatment at all.
I can also understand that not being able to have appropriate follow up causes a lot of stress. I cannot offer any advice on this since I am not familiar with how the system works in these cases, but I see that others have offered some good leads in this thread. I really hope that you will manage to get your follow up MRIs as needed.
Marianna
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Hello Anothereveryman,
My heart goes out to you -- I remember how frantic I was when my husband was diagnosed with his AN. I don't panic at all when it comes to my own health/situations, but when it has to do with Bob or our sons, well, that's a different story!!! My initial reaction when Bob got his diagnosis was to get that thing out of his head immediately. When he said he thought radiation was the way he wanted to go, I thought he was crazy!!! Research, consultations, people on this forum & time changed how I felt & calmed my fears. So, I have a few ideas you might want to consider. First of all, why don't you also send your MRI results to Dr. Chang at Stanford? He's the doctor who did Bob's procedure & like Dr. Slattery at House, he also does free phone or email consults. Maybe it will calm your anxiety some if you have two highly regarded doctors conferring on the wait & watch plan. Secondly, I don't know where you are in CA, but I know there are several very active support groups that meet frequently there. Try attending a couple. There's a person in our Phoenix group who's been a wait & watch for MANY years & is doing very well. Going to these support groups will also let you see that some people struggle with other side effects after their surgeries/radiation & wish they could have been a wait & watch, & you will receive support & valuable tips & information. Also, remember that it could be soooo much worse. Though Bob & I wish he didn't have to deal with this, we are very grateful it is what it is! If I find myself feeling down, the best medicine for me is volunteer work. If you're able to, give it a try. Helping others gets my mind off whatever it is I have going on. It's been a while since your last post, so I hope it's a sign you're not feeling as anxious about your diagnosis. Hang in there & we'll keep you in our prayers.
Judy (Bob's wife)
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Hello Anothereveryman,
My heart goes out to you -- I remember how frantic I was when my husband was diagnosed with his AN. I don't panic at all when it comes to my own health/situations, but when it has to do with Bob or our sons, well, that's a different story!!! My initial reaction when Bob got his diagnosis was to get that thing out of his head immediately. When he said he thought radiation was the way he wanted to go, I thought he was crazy!!! Research, consultations, people on this forum & time changed how I felt & calmed my fears. So, I have a few ideas you might want to consider. First of all, why don't you also send your MRI results to Dr. Chang at Stanford? He's the doctor who did Bob's procedure & like Dr. Slattery at House, he also does free phone or email consults. Maybe it will calm your anxiety some if you have two highly regarded doctors conferring on the wait & watch plan. Secondly, I don't know where you are in CA, but I know there are several very active support groups that meet frequently there. Try attending a couple. There's a person in our Phoenix group who's been a wait & watch for MANY years & is doing very well. Going to these support groups will also let you see that some people struggle with other side effects after their surgeries/radiation & wish they could have been a wait & watch, & you will receive support & valuable tips & information. Also, remember that it could be soooo much worse. Though Bob & I wish he didn't have to deal with this, we are very grateful it is what it is! If I find myself feeling down, the best medicine for me is volunteer work. If you're able to, give it a try. Helping others gets my mind off whatever it is I have going on. It's been a while since your last post, so I hope it's a sign you're not feeling as anxious about your diagnosis. Hang in there & we'll keep you in our prayers.
Judy (Bob's wife)
I have been away for a while, yes... I've been doing an exhausting amount of paperwork and making calls to try to get some help. To make a long story short, I feel numb and helpless with fear. Especially at times like this, sleepless until sunrise, with a horribly loud fluctuating-by-the-hour tinnitus in my now-deaf left ear, I truly don't know what I can do. Tinnitus would be more bearable to me if I didn't associate it with the very real possibility that the tumor that caused and aggravated it may very well grow, even if "benign".
I have no insurance and I'm too emotionally exhausted to do much more than I already have right now, which due to the lack of responses or good information in return, feels like very little. :(
As an afterthought, I'd like to send my MRI results/disc to another person, but I already gave the solid copy I had to the lawyer I hired to represent me for an upcoming disability hearing. The profound SSD is a part of the case now, yes, though it started for other unrelated reasons (filing for disability takes a long, long time and appeals are longer)... I am too spent to consider asking the MRI center for another copy at this time. I know I should, but... well lets just sleep I don't even sleep well these days. I have little energy for anything. Writing this took a lot of what I saved up.