Author Topic: Confirmed by House clinic and Dr. Slattery.  (Read 9260 times)

anothereveryman

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Confirmed by House clinic and Dr. Slattery.
« on: December 12, 2012, 08:15:43 pm »
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.

LizAN

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Re: Confirmed by House clinic and Dr. Slattery.
« Reply #1 on: December 12, 2012, 09:57:05 pm »
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
8/20/2010 - 9mm AN on left side 
Fullness, tinnitus, mild hearing loss
2/20/2011 - 8mm
4/20/2012 - 12.4 mm
Moderate to severe hearing loss, LOUD tinnitus, deteriorating balance
Facial numbness and twitching, which subsided pre-surgery
Translab at House, 7/3/2012, Slattery and Schwartz

anothereveryman

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Re: Confirmed by House clinic and Dr. Slattery.
« Reply #2 on: December 12, 2012, 11:20:46 pm »
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. :/

anothereveryman

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Re: Confirmed by House clinic and Dr. Slattery.
« Reply #3 on: December 12, 2012, 11:30:18 pm »
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.

anothereveryman

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Re: Confirmed by House clinic and Dr. Slattery.
« Reply #4 on: December 13, 2012, 04:40:57 am »
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? :(

alabamajane

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Re: Confirmed by House clinic and Dr. Slattery.
« Reply #5 on: December 13, 2012, 07:29:31 pm »
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
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

anothereveryman

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Re: Confirmed by House clinic and Dr. Slattery.
« Reply #6 on: December 13, 2012, 11:44:31 pm »
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.

Tod

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Re: Confirmed by House clinic and Dr. Slattery.
« Reply #7 on: December 14, 2012, 06:30:40 am »
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
Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

http://randomdatablog.com

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.

CHD63

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Re: Confirmed by House clinic and Dr. Slattery.
« Reply #8 on: December 14, 2012, 07:41:32 am »
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
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

LizAN

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Re: Confirmed by House clinic and Dr. Slattery.
« Reply #9 on: December 14, 2012, 09:48:26 pm »
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
8/20/2010 - 9mm AN on left side 
Fullness, tinnitus, mild hearing loss
2/20/2011 - 8mm
4/20/2012 - 12.4 mm
Moderate to severe hearing loss, LOUD tinnitus, deteriorating balance
Facial numbness and twitching, which subsided pre-surgery
Translab at House, 7/3/2012, Slattery and Schwartz

anothereveryman

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Re: Confirmed by House clinic and Dr. Slattery.
« Reply #10 on: December 16, 2012, 01:56:20 am »
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.
« Last Edit: December 16, 2012, 02:06:09 am by anothereveryman »

LakeErie

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Re: Confirmed by House clinic and Dr. Slattery.
« Reply #11 on: December 16, 2012, 07:51:03 am »
Possibly your anxiety disorder is compounding the normal distress that accompanies AN diagnosis. Have you consulted with the physician treating  your anxiety?
4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017

anothereveryman

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Re: Confirmed by House clinic and Dr. Slattery.
« Reply #12 on: December 16, 2012, 09:36:28 am »
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.

LizAN

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Re: Confirmed by House clinic and Dr. Slattery.
« Reply #13 on: December 16, 2012, 12:45:15 pm »
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
8/20/2010 - 9mm AN on left side 
Fullness, tinnitus, mild hearing loss
2/20/2011 - 8mm
4/20/2012 - 12.4 mm
Moderate to severe hearing loss, LOUD tinnitus, deteriorating balance
Facial numbness and twitching, which subsided pre-surgery
Translab at House, 7/3/2012, Slattery and Schwartz

anothereveryman

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Re: Confirmed by House clinic and Dr. Slattery.
« Reply #14 on: December 16, 2012, 09:21:37 pm »
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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