Author Topic: New to this, very terrified... insights, experience, knowledge welcome.  (Read 7901 times)

anothereveryman

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I have been effectively deaf in one ear, with audiological reports to verify that, for about half a year.

My MRI reported a 0.6 x 0.2 x 0.2cm enhancement on my left cochlea at the basal turn. It reports no vestibular schwannoma, nor any problems with the left seventh cranial nerve. In fact it seems the only thing wrong that caused my deafness and very loud tinnitus is that "enhancement" in my left cochlea. No "enhancement" elsewhere on the MRI, and the nerves seem untouched if I'm reading the report right. I'm terrified all the same. I can feel throbbing as well as ringing, matching my heartbeat... I have very little money and my family is spent from the MRI. What can I do?

I am aware that these things can cause facial paralysis, vertigo, even pinch or crush the brainstem. Is that my future because I can't afford to have this thing cut out?

Please, if anyone has experienced this, please respond. The unknown is bad enough.

anothereveryman

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Re: New to this, very terrified... insights, experience, knowledge welcome.
« Reply #1 on: November 20, 2012, 12:19:10 pm »
Please, someone talk to me. I can't afford a second opinion, and at least some insight, however frightening, is better than the ambiguity and second-guessing that I have to work with now. :(

producer

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Re: New to this, very terrified... insights, experience, knowledge welcome.
« Reply #2 on: November 20, 2012, 01:26:59 pm »
Hello there. If i undesrtand correctly 'enhancement' in radiological reports especially for our symptoms and findings refers to growths  ie tumors/schwannomas etc..  I have always had mine referred to as an enhancement and then stating that its likely a vestibular schwannoma.

Im guessing your report may be less hesitant to state thats its a schwannoma due to its unusual location (basal turn of cochlea).

But Cochlear Schwannomas do occur although not very regularly.  Ofcourse im not making even a remote attempt at 'diagnosing' based on what you said my friend and you should definitely follow up for further and more detailed diagnosis.

Heres a case which is very similar to yours..

Schwannoma in the basal turn of the cochlea:

http://www.rbrs.org/dbfiles/journalarticle_0013.pdf



hope this helps a little

best wishes

chris
Mosaic NF2  diagnosed march 2011.

9mm x 6mm x 6mm left VS

Cyberknife 3 day treatment completed May 2nd.

leapyrtwins

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Re: New to this, very terrified... insights, experience, knowledge welcome.
« Reply #3 on: November 20, 2012, 05:56:45 pm »
My best advice is find a good neurotologist.  Whether you have an AN or another ear problem, a neurotologist is most likely the best type of doctor to help you.

If you can tell us what state you live in someone can probably recommend one.  I live in Illinois.  If that helps, let me know and I'll tell you about my doc.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

anothereveryman

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Re: New to this, very terrified... insights, experience, knowledge welcome.
« Reply #4 on: November 21, 2012, 01:42:39 am »
I live in California.

Is a neurotologist the same thing as a neurologist?

Also... what do I do in the meantime? I can't afford much of anything unless my disability appeal goes through (unrelated reasons).

anothereveryman

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Re: New to this, very terrified... insights, experience, knowledge welcome.
« Reply #5 on: November 21, 2012, 01:45:42 am »
The journal article was helpful somehow... but I have to ask, if its not a schannoma, what is it? What can be done about it? Nothing?

anothereveryman

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Re: New to this, very terrified... insights, experience, knowledge welcome.
« Reply #6 on: November 22, 2012, 01:53:01 am »
What should I do for this uninsured, no income, waiting for disability/a miracle period? I feel like I have this thing in my head and it can only get bigger and harder to remove and take more and more of me with it... I'm terrified out of my wits!

Kathleen_Mc

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Re: New to this, very terrified... insights, experience, knowledge welcome.
« Reply #7 on: November 22, 2012, 04:51:20 am »
You really need to be seen by a doctor to determine exactly what is going on, "we" cannot diagnose. I am Canadian and have no idea how things work in the states, what happens to people there that haven't insurance and/or money? Does the government just let you suffer? Here in Canada nobody is denied seeing a doctor or having medical tests and there is a drug programme for people who cannot work due to medical issue's but not so sure how much it covers.
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

anothereveryman

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Re: New to this, very terrified... insights, experience, knowledge welcome.
« Reply #8 on: November 22, 2012, 01:49:04 pm »
You really need to be seen by a doctor to determine exactly what is going on, "we" cannot diagnose. I am Canadian and have no idea how things work in the states, what happens to people there that haven't insurance and/or money? Does the government just let you suffer? Here in Canada nobody is denied seeing a doctor or having medical tests and there is a drug programme for people who cannot work due to medical issue's but not so sure how much it covers.

Your suspicion is correct. People where I live are convinced they have "the best healthcare in the world" when just about everyone has a relative who is bankrupt or filing for bankruptcy or at the least has a very high medical bill with bill collectors constantly hounding them. (I get those same phone calls over an ambulance ride. An AMBULANCE RIDE. If it was a taxi, it was a taxi that charged thousands of dollars a minute!)

I really don't want to put up with more of this unless there's some hope for treatment I can afford. I can afford very little at all unless a near-miracle happens and I get some government assistance. Here, government is a boogeyman that is blamed for everything and private medicine can do no wrong.

Kathleen_Mc

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Re: New to this, very terrified... insights, experience, knowledge welcome.
« Reply #9 on: November 23, 2012, 03:49:09 am »
So glad I didn't move to Florida in 1989 like I considered doing! I was all set to go, job lined up just needed to finalise the deal....but something stopped me from going and I didn't know what at the time I just didn't go....so glad I didn't go 'cause I wouldn't have had insurance yet to cover the costs of diagnostic testing or treatment  so I wouldn't have had them and I would have died then.....my tumor was within mm of the brain stem when found and my doctor predicted death within months without treatment!
It might be said you all have the best medical treatment in the world but what good is it if you can't access it!
I do hope there's a way for you to get what you need done done!
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

CHD63

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Re: New to this, very terrified... insights, experience, knowledge welcome.
« Reply #10 on: November 23, 2012, 07:57:44 am »
Hi anothereveryman .....

I will not get into the healthcare discussion.  However, I just wanted to say that I know House Ear Clinic in Los Angeles (one of the best medical facilities for ear issues in the world) does care for people with inadequate or no insurance.  If you are in the Los Angeles area, please contact them for an evaluation!  Actually they do free consultations if you send them a copy your MRI (and audiogram, if you have it).

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

millie

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Re: New to this, very terrified... insights, experience, knowledge welcome.
« Reply #11 on: November 23, 2012, 05:22:33 pm »
Yes, Everyman-
Clarice , I believe, is talking about the HOUSE in California to whom I sent my MRI's when I was diagnosed in February with  my own  an.  For free, they will evaluate your MRI and give you an opinion within a week or two.  They are supposed to be among the very best.  Do call them on the phone...you should find their address on this site as well as the phone number.  If not send me a PM and I will find it for you.  Hang in there.  Millie

anothereveryman

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Re: New to this, very terrified... insights, experience, knowledge welcome.
« Reply #12 on: November 23, 2012, 08:39:33 pm »
I'll contact the person who offered to send me more information. I'm in the dark here and desperately poor (even this computer is on its last leg).

CHD63

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Re: New to this, very terrified... insights, experience, knowledge welcome.
« Reply #13 on: November 23, 2012, 10:05:08 pm »
Here is the link to all of the information you need to contact House Ear Clinic:

http://www.houseearclinic.com/consultation/acousticneuroma

Please do it soon.

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

millie

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Re: New to this, very terrified... insights, experience, knowledge welcome.
« Reply #14 on: November 24, 2012, 07:30:34 pm »
I sent you a pm with the House phone number 213-484-7111
House Ear Institute
2131 West Third Street
Los Angeles California 90057

www,hei.org     Go to Directory and "Contact us

There must be an 800 number too.



 


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