ANA Discussion Forum

Pre-Treatment Options => Pre-Treatment Options => Topic started by: anothereveryman on November 28, 2012, 04:56:15 pm

Title: Going to mail my MRI results to that House clinic in Los Angeles soon...
Post by: anothereveryman on November 28, 2012, 04:56:15 pm
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.
Title: Re: Going to mail my MRI results to that House clinic in Los Angeles soon...
Post by: anothereveryman 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.
Title: Re: Going to mail my MRI results to that House clinic in Los Angeles soon...
Post by: CHD63 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
Title: Re: Going to mail my MRI results to that House clinic in Los Angeles soon...
Post by: anothereveryman 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.
Title: Re: Going to mail my MRI results to that House clinic in Los Angeles soon...
Post by: LakeErie 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.
Title: Re: Going to mail my MRI results to that House clinic in Los Angeles soon...
Post by: leapyrtwins 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
Title: Re: Going to mail my MRI results to that House clinic in Los Angeles soon...
Post by: It is what it is 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
Title: Re: Going to mail my MRI results to that House clinic in Los Angeles soon...
Post by: Pattiken 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
Title: Re: Going to mail my MRI results to that House clinic in Los Angeles soon...
Post by: anothereveryman 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.
Title: Re: Going to mail my MRI results to that House clinic in Los Angeles soon...
Post by: CHD63 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
Title: Re: Going to mail my MRI results to that House clinic in Los Angeles soon...
Post by: dtorres135 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.
Title: Re: Going to mail my MRI results to that House clinic in Los Angeles soon...
Post by: anothereveryman 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.
Title: Re: Going to mail my MRI results to that House clinic in Los Angeles soon...
Post by: lrobie 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
Title: Re: Going to mail my MRI results to that House clinic in Los Angeles soon...
Post by: anothereveryman 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.
Title: Re: Going to mail my MRI results to that House clinic in Los Angeles soon...
Post by: Slab 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.
Title: Re: Going to mail my MRI results to that House clinic in Los Angeles soon...
Post by: mindyandy on November 30, 2012, 02:49:18 pm
I remember...I went through the same thing last year. I sent my scans and Dr. Friedman phoned me when he was on Thanksgiving vacation...LOL it was nice. You will hear from them. They are very quick to get back to  you but you must incorporate holiday & weekend etc.

Mindy
Title: Re: Going to mail my MRI results to that House clinic in Los Angeles soon...
Post by: anothereveryman on November 30, 2012, 05:20:08 pm
I'm incredibly grateful that they offer to help and I just hope the MRI report arrived in the mail safely.

Trying to guess what they will say is gnawing away at me. It's a bad habit. But I'll report the moment I know anything from them and update here.
Title: Re: Going to mail my MRI results to that House clinic in Los Angeles soon...
Post by: jsanders1379 on December 01, 2012, 11:15:51 am
I mailed mine the 28th-also anxiously waiting...
Title: Re: Going to mail my MRI results to that House clinic in Los Angeles soon...
Post by: jsanders1379 on December 03, 2012, 11:21:20 am
Have you heard anything yet? I also mailed everything to House on Nov. 28
Title: Re: Going to mail my MRI results to that House clinic in Los Angeles soon...
Post by: It is what it is on December 03, 2012, 08:37:48 pm
I hope you carry your questions with you at all times.  When I received my phone call, I didn't have my questions with me and couldn't remember to ask everything I wanted to know. 

Karen
Title: Re: Going to mail my MRI results to that House clinic in Los Angeles soon...
Post by: jaylogs on December 03, 2012, 09:27:46 pm
Just know that EVERYONE has several of these anxiety producing moments during this whole ordeal.  You are waiting on that phone call, then you might get a few more opinions. THEN you will have to decide, if you have different options of approach, of which approach and which doctor.  Then comes the procedure and all that implies...it goes on and on.  I only bring this up because in truth having an AN is NOT fun and not to be taken lightly.  Having a good attitude, arm yourself with information and of course seek support from your loved ones or even on this forum will only help you in the long run.  It's ok to vent here, we've all done it. There's no such thing as a stupid question.  Good luck and hope you hear from them soon!
Jay
Title: Re: Going to mail my MRI results to that House clinic in Los Angeles soon...
Post by: mindyandy on December 05, 2012, 06:41:49 am
I'm anxiously awaiting the news. I sure hope you both hear soon.
Title: Re: Going to mail my MRI results to that House clinic in Los Angeles soon...
Post by: anothereveryman on December 07, 2012, 08:43:23 am
My news is half-news: I get the consultation on Wednesday. No information yet. Reading my own MRI summary, the report couldn't even decide if it was a schwannoma or not. Hopefully the House people can make that determination.

The first step in a journey should involve knowing which direction one has to go.
Title: Re: Going to mail my MRI results to that House clinic in Los Angeles soon...
Post by: It is what it is on December 07, 2012, 09:37:11 am
Thanks for letting us know that much. 
Until Wednesday,
 Karen
Title: Re: Going to mail my MRI results to that House clinic in Los Angeles soon...
Post by: jsanders1379 on December 07, 2012, 01:47:03 pm
Talked to Dr. Friedman @House Monday. He pretty much agreed with the track I'm on right now... also offered to look at my repeat MRI scheduled for April...great service they offer...
Title: Re: Going to mail my MRI results to that House clinic in Los Angeles soon...
Post by: millie on December 10, 2012, 08:06:54 pm
Praying for you guys.  Hang in there, everyman. Glad you sent your info to House; they contacted me within the week too, and the doctor I spoke  at that time with suggested the procedure I eventually had in NYC  five months later.
Millie