Author Topic: Going to mail my MRI results to that House clinic in Los Angeles soon...  (Read 9469 times)

anothereveryman

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I might do it as early as Friday, when I can get around to a post office to securely send the actual MRI data with trackable delivery (as they requested). I find it remarkable how MRIs in some places are claimed to be 100% accurate, especially with contrast, yet such ambiguity is in my own report. Even in its medical jargon, the summarized report said it could be a schwannoma... but it was in an unusual place, lacked some characteristics typical to a scwannoma, and there was no "enhancement" anywhere but the basal turn of the cochlea (0.6cm x 0.2cm x 0.2cm), and suggested the "differential" diagnosis was labrynthitis.

The ENT I saw before and after was both expensive and unhelpful. "This might be a tumor. They grow slowly. If you have problems you have surgery or Gamma Knife. Here's a number to a Gamma Knife clinic." (I don't have even a hundredth of the amount Gamma Knife cost). "Usually, people with these tumors live normal lives." Then he showed me the door and asked my paying friend for his check.

I suppose I'd like to know what road I need to go down: simply letting go and accepting the hearing is gone forever but it's not a tumor, or that it is and I have to plan long-term on how to deal with it and hopefully get rid of it.

So, on a wing and a prayer as the saying goes.

anothereveryman

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Re: Going to mail my MRI results to that House clinic in Los Angeles soon...
« Reply #1 on: November 28, 2012, 07:34:53 pm »
I sent it by express mail today. Chilling, knowing that as soon as tomorrow I might get answers and maybe I won't like them. But I need to know.

CHD63

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Re: Going to mail my MRI results to that House clinic in Los Angeles soon...
« Reply #2 on: November 28, 2012, 08:11:48 pm »
The fear of the unknown is always much worse than dealing with the known ..... at least for me it is.

Prayers that you will have answers soon and know what some options for treatment (or watching and waiting) are.

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

anothereveryman

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Re: Going to mail my MRI results to that House clinic in Los Angeles soon...
« Reply #3 on: November 28, 2012, 10:22:03 pm »
Thank you. All I can really do now is sit and wait. If it is a tumor, and something of concern in the forseeable future, then I'll have to start a lot of writing and research to see if I can appeal to charity or indigent programs. I have very little to my name: even this computer I type on is rather old and comes from happier times.

LakeErie

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Re: Going to mail my MRI results to that House clinic in Los Angeles soon...
« Reply #4 on: November 28, 2012, 11:00:20 pm »
When you know what your diagnosis is, contact the social services department of a local hospital.
A medical social worker can guide you through the resources available in your area and refer you to
the appropriate people at the neurosurgery centers you use in getting your opinions and treatment.
I know in my area, we have a major hospital for those without insurance and/or indigent. Cleveland Clinic surgeons, where my surgery was performed, offer their services at this hospital. Any medical social worker can advise you where to start.
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

leapyrtwins

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Re: Going to mail my MRI results to that House clinic in Los Angeles soon...
« Reply #5 on: November 28, 2012, 11:37:29 pm »
Vestibular schwannoma is another term for acoustic neuroma.

Also, wanted to note that my ENT was clueless as to what to do with my AN.  He sent me for the diagnostic MRI, but when it showed "something" (as he referred to it) in my ear he promptly referred me to a neurotologist.  The neurotologist is excellent and the rest is history  ;D

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

It is what it is

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Re: Going to mail my MRI results to that House clinic in Los Angeles soon...
« Reply #6 on: November 29, 2012, 12:40:10 am »
I'm glad to see you have received excellent advice from this incredible team of survivors. 

Karen
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

Pattiken

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Re: Going to mail my MRI results to that House clinic in Los Angeles soon...
« Reply #7 on: November 29, 2012, 01:09:18 am »
You're doing the prudent thing sending your MRI to House.  They averted a potential disaster by questioning my original tumor type and they were right. 
Hoping you get some straight answers.  Best of luck to you and keep us posted.

Patti

anothereveryman

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Re: Going to mail my MRI results to that House clinic in Los Angeles soon...
« Reply #8 on: November 29, 2012, 04:28:56 am »
You're doing the prudent thing sending your MRI to House.  They averted a potential disaster by questioning my original tumor type and they were right. 
Hoping you get some straight answers.  Best of luck to you and keep us posted.

Patti

I am glad I found this place, then, in advance.

I hope I sent the right information: the disc with all the full MRI details, the center's summary and analysis of that raw data, a handwritten letter stating my situation, a contact telephone number and a backup one. I hope that it arrives safely and that they do indeed give some answers. Even if they are not ones I'd like to have, it is better than the parylysing state of uncertainty and fear I am in now.

CHD63

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Re: Going to mail my MRI results to that House clinic in Los Angeles soon...
« Reply #9 on: November 29, 2012, 07:42:23 am »
The doctors at House are very quick to call you on the receipt of your MRI CD and accompanying materials.  They do want to have the actual CD to view for their own evaluation.

Since I know personally that House does work with patients with no insurance and few resources, be sure to mention this to the doctor who calls you with an evaluation.  They will be able to give you the information you need to apply for assistance with them.

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

dtorres135

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Re: Going to mail my MRI results to that House clinic in Los Angeles soon...
« Reply #10 on: November 29, 2012, 01:49:27 pm »
I am also mailing my cd and results to Dr. Schwartz at House.  Its a plan B for me in the case NYU is not up and running by the time I need to do something.  The answers from House will also help me to decide which direction to go.  My insurance does not cover services from House but we will see what their advice would be.   I wake up every morning saying to myself "really".  how did this happen to me...I've never been sick.(besides common cold). ever.

anothereveryman

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Re: Going to mail my MRI results to that House clinic in Los Angeles soon...
« Reply #11 on: November 29, 2012, 03:30:29 pm »
I haven't gotten my call yet and when I called them I got an answering machine so I left a message. According to my local post office it couldn't have arrived later than 1:30. I feel stupid for not requesting that a signature be given before the package is left off. I hope it will be safe.

lrobie

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Re: Going to mail my MRI results to that House clinic in Los Angeles soon...
« Reply #12 on: November 29, 2012, 09:04:13 pm »
Did you get a tracking number that you can look up online to see if it was delivered?  Try not to get worked up waiting for the call.  I think it was a few days before I got my phone call.  I do hope you get some answers.  Even if it isn't an AN, if it's related to your ear and the nerves around it, they should know what's going on.

Lisa
6/2009 7mm x 4mm  W&W
8/2011 9.5mm x 5mm
2/2012 UPMC Follow-up , slight growth
Surgery on 7/18/12 w/Drs. Friedman & Schwartz (mid-fossa)
www.caringbridge.org/visit/lisarobie

anothereveryman

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Re: Going to mail my MRI results to that House clinic in Los Angeles soon...
« Reply #13 on: November 30, 2012, 06:45:01 am »
Did you get a tracking number that you can look up online to see if it was delivered?  Try not to get worked up waiting for the call.  I think it was a few days before I got my phone call.  I do hope you get some answers.  Even if it isn't an AN, if it's related to your ear and the nerves around it, they should know what's going on.

Lisa

Knowing what is wrong, even if nothing can be done (I'm slowly making peace with the concept of permanent deafness in that ear), will give me some relief from the biting terrible sense of "what if something is very very wrong and my delays in somehow doing something about it are making it even worse?"

I will wait a few days before worrying about tracking numbers and other such things. I will try to simply wait.

Slab

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Re: Going to mail my MRI results to that House clinic in Los Angeles soon...
« Reply #14 on: November 30, 2012, 10:38:09 am »
it took a couple of days for them to get back to me, too. Probably a bit behind with the holiday weekend.
10/30/2012 - MRI reveals 3.5 cm AN on left side 
conversation level hearing down to 20%, facial tingling/numbness around lips/nose, occasional loss of balance, and tinnitus
12/3/2012- 12 hr. Translab at Allegheny General in Pittsburgh, PA- Drs. Chen and Aziz, comp. tumor removal, facial nerve saved