Confirmed by House clinic and Dr. Slattery.

[Jim Scott]

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


Jim

[anothereveryman]

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


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.

[mk]

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

[anothereveryman]

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.

[mk]

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

[AZ JB]

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)         

[anothereveryman]

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.