Author Topic: Worried while "waiting"...  (Read 8798 times)

anothereveryman

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Worried while "waiting"...
« on: January 27, 2013, 09:51:44 am »
As I mentioned in this forum before, I have been diagnosed with an intracochlear schwannoma, and was told to "wait and see" and to get a followup MRI a year later. I was told that in most cases my particular type of schwannoma stops growing at a certain point, but in some cases could require removal before it does some of the bad stuff that more common acoustic neuromas do (vertigo, facial paralysis, and worse).

My question is to anyone who might have had something like this: before the next MRI (which I still don't know how I'm going to afford), is there an "early warning" I should be aware of? I get fluctuating but usually very loud tinnitus in my now-profoundly-deaf side, the tone of which seems to change hour by hour. I get sensations of pressure or fullness but it might, just might be congestion because it's hard to "localize" it.

I'm poor, frightened, and may not have a source of income or coverage for some time. I just want to know if someone's been here before. If the stuff that I was told could happen happens, is it sudden onset or some sort of gradual thing? Like being dizzy sometimes, or one side of the face being slightly lazy?

I'm terrifed. I'll just go out and say it. The ringing is maddeningly loud right now.

Glenda

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Re: Worried while "waiting"...
« Reply #1 on: January 28, 2013, 09:12:28 pm »
Hello,

Bless your heart....I know exactly how you feel.  I was in watch and wait for 4 years and just had surgery 8 weeks ago.  I remember how scared I was in the beginning.  First of all, AN's are normally slow growing.  How large is yours now?  The pressure and fullness is normal and that along with the tinnitus is how mine was found.  What you have been told is possible though with modern medicine not as likely as in the past.  They must tell you what could happen. They have facial and hearing monitors as they do the surgery.  Mine was also right next to my cochlea so I am now SSD (single sided deafness) and though I miss my hearing greatly, I am thankful that it wasn't worse.  I am learning to deal with it.  Life will go on!  There are new devices that help you hear through bone conduction.  Hopefully one day I may get one.  I don't think insurance pays and my husband is disabled and I am the breadwinner so we are strapped also and I cannot afford one if they don't but there are many many people who live with SSD. 
This forum is full of wonderful people who are here for you.  Where are you located?  There are also local support groups and it is nice to actually sit down and talk with people face to face who are going through the same thing as you.
As far as the symptoms go, they can come gradually or some have theirs come on suddenly, everyone is different.  My symptoms were not all that bad before surgery.  The tinnitus was probably the worst.  I had the fullness, partial hearing loss and occasional dizziness when turning my head.  My son also had one and his came on suddenly and he lost hearing and became very dizzy and had bad headaches so he had surgery within a few weeks of finding out.  Like I said everyone is different.  My son's AN was close to the brainstem where mine was close to the cochlea.  Location also can make a difference.  I find that my tinnitus is much worse if I am tired or stressed so try to stay as calm as you can....easier said than done sometimes ;-). Caffeine also can make it worse.
You also have the option of radiation if yours is small enough, you can do research and decide what is best for you.  It is a personal decision and do what feels right for you!
I am so sorry to hear about your finances.  Are you in the US?, if so and you are unemployed maybe you could check into medicaid.
Please try to relax and know that you are not alone.  You have lots of friends here!

Hang in there!!!!
Glenda
Diagnosed 5 mm AN  Jan 2008
Deep in IAC
June 2010 7 mm
July 2011 8.5 mm
July 2012 1.1 cm
Nov 28, 2012 Mid Fossa Surgery Wake Forest Baptist Hospital-Winston-Salem NC, Dr John Wilson and Dr Eric Oliver


SSD tinnitus dizziness

anothereveryman

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Re: Worried while "waiting"...
« Reply #2 on: January 29, 2013, 08:44:50 pm »
Hello,

Bless your heart....I know exactly how you feel.  I was in watch and wait for 4 years and just had surgery 8 weeks ago.  I remember how scared I was in the beginning.  First of all, AN's are normally slow growing.  How large is yours now?  The pressure and fullness is normal and that along with the tinnitus is how mine was found.  What you have been told is possible though with modern medicine not as likely as in the past.  They must tell you what could happen. They have facial and hearing monitors as they do the surgery.  Mine was also right next to my cochlea so I am now SSD (single sided deafness) and though I miss my hearing greatly, I am thankful that it wasn't worse.  I am learning to deal with it.  Life will go on!  There are new devices that help you hear through bone conduction.  Hopefully one day I may get one.  I don't think insurance pays and my husband is disabled and I am the breadwinner so we are strapped also and I cannot afford one if they don't but there are many many people who live with SSD. 
This forum is full of wonderful people who are here for you.  Where are you located?  There are also local support groups and it is nice to actually sit down and talk with people face to face who are going through the same thing as you.
As far as the symptoms go, they can come gradually or some have theirs come on suddenly, everyone is different.  My symptoms were not all that bad before surgery.  The tinnitus was probably the worst.  I had the fullness, partial hearing loss and occasional dizziness when turning my head.  My son also had one and his came on suddenly and he lost hearing and became very dizzy and had bad headaches so he had surgery within a few weeks of finding out.  Like I said everyone is different.  My son's AN was close to the brainstem where mine was close to the cochlea.  Location also can make a difference.  I find that my tinnitus is much worse if I am tired or stressed so try to stay as calm as you can....easier said than done sometimes ;-). Caffeine also can make it worse.
You also have the option of radiation if yours is small enough, you can do research and decide what is best for you.  It is a personal decision and do what feels right for you!
I am so sorry to hear about your finances.  Are you in the US?, if so and you are unemployed maybe you could check into medicaid.
Please try to relax and know that you are not alone.  You have lots of friends here!

Hang in there!!!!
Glenda

Mine is .06 x .02 x .02 CM from the last MRI. I was told that I should get a followup MRI, that I don't know how I can afford yet, even with family helping (times are hard on everyone). The tinnitus ranges from "forgot that it's there" to "dominates my world and makes it hard to hear anything even out of the still-working ear". Dr. Slattery said that my kind USUALLY remain in the cochlear part of the inner ear and "pinch off their own blood supply" but that in some rare cases it does need to be removed later. I wish I could have it removed anyway for peace of mind and a feeling of safety. Need I wait until I get additional physical problems before this is done? :(

Translab surgery would be fine: I have no hearing left on that side to save. It might (might) even help with the tinnitus.

I am in the Fresno area of the central valley of California.

I am applying for disability for previous psychiatric issues but I certainly added the hearing loss and tumor to my case. Hearing is in a few months. I have to wait and hope... and its so very hard.
« Last Edit: January 29, 2013, 08:50:19 pm by anothereveryman »

Nannybee

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Re: Worried while "waiting"...
« Reply #3 on: January 31, 2013, 10:21:09 pm »
Wile you are waiting, check with several of the non-profit hospitals in the area and ask about charity care or reduced cost care. I work for a large health system who offer reduced cost ( often 100% coverage) for patients with financial need. In our hospital it covers all testing done at the hospital and specialists as long as they are affiliated with the hospital.
Good luck.
AN 18x19 mm
3 meningiomas
NF2
AN treated with SRS April 2013
MRI Feb 2016 AN shrunk to 17 x 8 mm :)
Constant tinnitus in AN ear
Severe hearing loss AN ear

anothereveryman

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Re: Worried while "waiting"...
« Reply #4 on: February 01, 2013, 12:02:20 am »
Wile you are waiting, check with several of the non-profit hospitals in the area and ask about charity care or reduced cost care. I work for a large health system who offer reduced cost ( often 100% coverage) for patients with financial need. In our hospital it covers all testing done at the hospital and specialists as long as they are affiliated with the hospital.
Good luck.

It covers testing? Would that include MRIs? I don't know where to begin... and it's such an exhausting process already. I'm spent emotionally and mentally very easily, with all the paperwork I'm already doing. :(

nftwoed

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Re: Worried while "waiting"...
« Reply #5 on: February 03, 2013, 03:36:45 pm »
Hello;

  Not sure your age, but yes, the older one gets, often the greater the likelihood of it to stop growing.
It may help you to remember an AN's usual slow growth of only 1 or 2 mm. per year, if indeed it is growing. Maybe some nerves are irritated ( truly ) and a bit ticked at having Mr. Schwannoma pressing on them?
  A neurosurgeon told me not to base growth assumptions on symptoms.
  Seems you should qualify for Medicaid in your state. Some states will give Medicaid if a person earns but $2.00 a month ( MEPD in Iowa ).
  You could send CD of the MRI to House Ear Institute in LA and receive a free telephone consultation of their assessment of the now somewhat old MRI and new? symptoms.
  Would say anxiety increases tinnitus. If they didn't jump at Tx a year ago, what could have changed THAT much?
  Yes; True vertigo ... Been there and hospitalized 3 xs for it. It is ghastly! I've asked myself if I might have Meniere's Disease also.
   Stay strong, everyman.

anothereveryman

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Re: Worried while "waiting"...
« Reply #6 on: February 03, 2013, 09:17:17 pm »
has anyone else with tumor-induced tinnitus had a loud/fluctuating cycle? Mine seems to be steadily, progressively louder... and its hard not to associate it with possible schwannoma growth. It scares me very much. I'm not scheduled for another MRI probably for a half-year roughly (and that's if I can somehow find a way for a family member to pay, everyone's hurting right now), so I really only have fear for company. :(

nftwoed

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Re: Worried while "waiting"...
« Reply #7 on: February 04, 2013, 09:02:56 am »
Hi;
  I have the loud, flucuating cycles. My feeling is, however, tinnitus is more associated with hearing loss than AN growth. It is known a person can lose all hearing w/o the tumor growing at all.
  Why so afraid considering Dr. Slattery's opinion of a slow growing ( if growing ) tumor? Intracanicular and recommendation to watch and wait a year? The AN is not even close to a life threatening area as the brain stem. That's abut 3.00 cm. away ( 30 mm. )
  How large was your AN?

anothereveryman

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Re: Worried while "waiting"...
« Reply #8 on: February 05, 2013, 04:53:29 am »
3cm doesn't seem very far from the brain stem to me, at least in an instinctual sense of safety. :(

My tumor is, last time it was measured, at 6mm x 2mm x 2mm.

Its strangely assuring to know that its possible that the tinnitus cycles are not necessarily signs of the tumor growing. If I knew what I really had to look out for, might be comforting so long as such signs didnt happen.

PaulW

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Re: Worried while "waiting"...
« Reply #9 on: February 05, 2013, 07:54:36 pm »
Your schwannoma is very very small.
6mm x 2mm x 2mm is smaller than a grain of rice.
The other thing is, as it is a Intracochlear Schwannoma its on the outside of the skull.

To get to the brainstem the tumour needs to grow through the tiny internal auditory canal which is about 5mm wide x 10mm long. and then expand another 30mm, about the size of a golf ball before it starts to become a real problem. Rarely some people have had tennis ball size AN's with no symptoms.

I think there is a far greater chance it will grow outside of the skull where there is more room, rather than navigate its way inwards.

I can imagine as it is on the cochlear its creating problems, removal may bring its own set of new issues.

I guess you have been recommended W&W because the risks of removing a thing the size of a grain of rice may not justify the risks of surgery, or the potential outcomes.
 
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

anothereveryman

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Re: Worried while "waiting"...
« Reply #10 on: February 06, 2013, 03:40:17 pm »
Your schwannoma is very very small.
6mm x 2mm x 2mm is smaller than a grain of rice.
The other thing is, as it is a Intracochlear Schwannoma its on the outside of the skull.

To get to the brainstem the tumour needs to grow through the tiny internal auditory canal which is about 5mm wide x 10mm long. and then expand another 30mm, about the size of a golf ball before it starts to become a real problem. Rarely some people have had tennis ball size AN's with no symptoms.

I think there is a far greater chance it will grow outside of the skull where there is more room, rather than navigate its way inwards.

I can imagine as it is on the cochlear its creating problems, removal may bring its own set of new issues.

I guess you have been recommended W&W because the risks of removing a thing the size of a grain of rice may not justify the risks of surgery, or the potential outcomes.

Your information is very helpful, even comforting to me. I didn't realize the proportions involved... but Dr. Slattery did say some people do need to have this sort of tumor removed eventually. He didn't specify why. I take it it's if it does precisely what you said it sometimes but rarely does and grows the other way?

I get very loud tinnitus, throbbing sensations, and I am completely deaf in that affected ear. Every time the ringing hits a high point (or changes to a stranger sound like metal-grinding or electrical pulses) I get scared and wonder why the sudden fluctuation. A dying cochlea, I am lead to assume...

What "issues" could happen from removing something from a dead organelle like the cochlea that's not even doing anything anymore?

Again, thank you for your input.

anothereveryman

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Re: Worried while "waiting"...
« Reply #11 on: February 15, 2013, 05:18:19 am »
I mean that with the greatest sincerity to anyone who feels like responding: the more I know, the more I understand, the more I can envision this, the more comfortable I can feel about it. The unknown is the worst part. It went from 'that howling loud screech that makes my  head feel full and ear canal examinations came up with nothing as I went deaf' to 'a grain of rice sized tumor just outside of the skull that hopefully will not get much worse'. That sort of understanding, or shared experience, means a tremendous lot to me.

mk

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Re: Worried while "waiting"...
« Reply #12 on: February 15, 2013, 11:35:43 am »
I am so glad that you were able to find some comfort. Paul's explanation was right on the spot.

This is what this forum has been to most of us. An invaluable source of information, a means to find comfort and encouragement from people who really understand and can relate, and occasionally a place to vent our frustration.

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

Sheila1977

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Re: Worried while "waiting"...
« Reply #13 on: February 15, 2013, 10:02:55 pm »
I can only add that fear and stress are doing you a lot of harm.  At least in my case, doing a lot of research, talking to other patients, and deciding the best path for me, alleviated some of my anxiety and fear.  The tinnitus is associated I think with deafness on your AN ear, perhaps not with the tumor.  I'm not a doctor, its just my opinion.  I had the tumor removed and the tinnitus was there after surgery, less so now (5 months later).  The more you know about your AN and how best to deal with it, the better you will feel about it.  You may find that you actually are in a very good situation, that is the tumor is very small and not growing.  Easier said than done, but the next MRI will confirm.  If you can find an organization or person that can finance an MRI sooner, if that's what you want, you can either confirm or assuade your fears.  Doctors say 12 month follow up because most ANs grow very very slow or not at all.  Hoping all the best for you.
s
7mm AN June 2011
Almost doubled in July 2012
Translab Sep 2012 at Kaiser San Diego

Nannybee

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Re: Worried while "waiting"...
« Reply #14 on: February 22, 2013, 10:11:16 pm »
Wile you are waiting, check with several of the non-profit hospitals in the area and ask about charity care or reduced cost care. I work for a large health system who offer reduced cost ( often 100% coverage) for patients with financial need. In our hospital it covers all testing done at the hospital and specialists as long as they are affiliated with the hospital.
Good luck.

It covers testing? Would that include MRIs? I don't know where to begin... and it's such an exhausting process already. I'm spent emotionally and mentally very easily, with all the paperwork I'm already doing. :(

At our hospital, yes it covers any and all imaging, blood tests, hearing evaluations, etc as long as you have a doctor's order and the tests are done at the hospital. Office visits are covered as long as they are with a practice that is owned by the hospital.

I suggest you start by calling the business office at the hospital and ask who manages their charity care, or reduced cost care program.

You can pm me for info on the hospital system that I am referring to.
AN 18x19 mm
3 meningiomas
NF2
AN treated with SRS April 2013
MRI Feb 2016 AN shrunk to 17 x 8 mm :)
Constant tinnitus in AN ear
Severe hearing loss AN ear

 


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