Author Topic: Newly diagnosed, need help please  (Read 4323 times)

dankar1016

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Newly diagnosed, need help please
« on: February 11, 2016, 12:02:16 pm »
Hi everyone, Please help me if you can.  About me - 47 year old female, thyroid cancer survivor (2012), history of heart rhythm issues (tachycardia, SVT) and had an ablation in 2012.   I have had some ringing in my ear for quite some time, but it didn't impact my ability to hear as far as I remember.  4 weeks ago, I started to feel really sick - like the flu. High fever, upper respiratory issues...that lead to sinusitis that led to a horrible ear infection.  Tested negative for flu.  Doctor gave prednisone and antibiotic.  Fever went away after starting prednisone, 8 days after the start of being sick.  I also have been getting stabbing pains in my head on the side with the infection. Doctor also put tube in my ear to help drain the fluid over a week ago.  Still can't hear, ear feels full and ringing although headaches have decreased. ENT ordered MRI with contrast that was done yesterday. Last night I get call from him telling me that my ear still has a lot of inflammation and to do another round of prednisone, oh and by the way, the report indicates you have a 8 mm AN.   Wait....what?     At this point I'm looking for advice, next steps, and please some encouragement as I'm freaking out!!! At this point, I started the prednisone again today with a follow up appointment with my ENT in 2 week.  Thank you so much!

Criley

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Re: Newly diagnosed, need help please
« Reply #1 on: February 11, 2016, 11:12:41 pm »
First of all don't panic! My diagnosis was in 1992. Same type of symptoms. I had surgery at the U of Minnesota. Best place in the world. I went on from that surgery to have another surgery in 2001 for scar tissue that was annoying me with similar symptoms. That was removed along with my entire inner ear. My vestibular was very messed up for a time but with physical therapy I have been able to work full time since 2004.
I can't walk in the dark without assistance. Uneven ground is a challenge, lifting and carrying heavy items is also hard. I also can't tell where sounds are coming from.
I'm hoping to get a hearing device such as a CROS finally.
Medicine has advanced so much since my surgery and there are so many new things. I encourage you to go to a big hospital to have surgery. If you live in a remote area go to a big city or a university or Mayo clinic. Hang in there!! My prayers and thoughts go out to you!!

Crazycat

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Re: Newly diagnosed, need help please
« Reply #2 on: February 11, 2016, 11:12:52 pm »
You've been through a great deal. But as far as the AN is concerned, with an 8mm growth you're a good candidate for either cyber or gamma knife treatment (radiation) after whatever infection you have is stopped. My advice is to get it taken care of  ASAP to prevent any further cranial nerve impingement and perhaps save what hearing remains in your effected ear.
« Last Edit: February 11, 2016, 11:15:17 pm by Crazycat »
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

areles

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Re: Newly diagnosed, need help please
« Reply #3 on: February 12, 2016, 04:32:02 pm »
Hi, and welcome to our little club, dubious honor though it is.  :)

As a newb myself (and not even directly; it's my son who has AN), I can't begin to offer you the wealth of experience and advice others in this forum can, but one thing I CAN offer, as a newb, is commiseration with how overwhelming this currently seems, and how scary.  So if I have any actual advice, it is this:

Read.  A lot.  Not just stories here, but stories across the internet.  Try not to filter only the negative experiences, because there are a LOT of positive ones as well.  And even so, if it seems like you see more negative than positive, please keep in mind that people don't necessarily rush to the internet to share their good stories.  Not only are they out living their lives and feeling good, but it also can feel a bit like boasting (I imagine) if you're sharing your great story with people who've had not so great ones.  It took me a few weeks to realize that though there is indeed cause for concern, and life will indeed change after treatment, that it doesn't have to be The End Of The World As We Know It.

In your reading, familiarize yourself with the terms, the procedures, and under what circumstances each are recommended/utilized.  This will prevent you from feeling overwhelmed as you begin consulting with doctors. "Gamma-what, what did he say?  Middle what?  Foccacia?"  if you're already familiar, you won't be scrambling later to remember what was said, frantically trying to research it, and then having to circle back with questions.  You'll already know what questions to ask when you meet with them. 

Two months ago I didn't even know the terms "gamma knife" and "middle fossa" and "retrosigmoid" and "cyber knife" and "translab".  Now I can tell you how each are done, and in what circumstances they are recommended.  It's strange how your brain shifts to accommodate new concepts like this from the moment you're faced with them.  :) 

So, that's first.

Secondly, one thing I discovered upon all my hours and hours of research, which was independently confirmed by Dr. Schwartz at the House Clinic when we met with him, is that as a 47 year old woman with an 8mm AN, you're in a pretty good situation.  Your tumor is small enough that it can be treated in a variety of different ways.  Conversely, my son is so young, and his tumor so large, that he has only ONE option, which is translab surgery, and his age + the size of the tumor indicates that its growth is aggressive.  Your tumor is small enough, and you're old enough, that it is likely you have a very slow-growing tumor, which means you [most likely] don't have to rush into any decisions.

Thirdly, please get more than one opinion.  I'd highly recommend, if doctors are at a premium in your area, that you get copies of your scans and hearing test (if you have one) and send to House and Keck for phone consult.  You many not need or want to fly out to LA, but these physicians are GOOD and based on personal experience, you can expect a response within three to five days.  They will analyze your scans and call you to explain their findings and what they recommend as the best treatment option for your specific scenario.  This can be useful as you're approaching local doctors, and with your next appointment in two weeks, you have plenty of time to get their feedback in advance.

Remember, you aren't looking for opinions on the diagnosis, but rather, the proper way to approach it.   At least two, preferably three.  Ideally, all your doctors will agree on the best course of action, because that makes your decision much easier, but if you get differing suggestions, do the research and weigh the potential costs/benefits.  Do your research in advance on the various treatments and the experiences people have after each - and look for people in your age range, with a tumor nearly the size of yours; that will give you the best results.  Definitely look for experiences with the specific surgeons with whom you're consulting.  I've found that just searching their names here, or their names and your diagnosis on the internet at large, will come up with a wealth of personal war stories, and these can be useful for helping you weigh the doctors and their recommendations.

All in all, hang in there.  This is scary, but the more armed you are with knowledge, the more comfortable you'll feel in your situation, your doctor, and the recommended treatment plan you decide to pursue.  I can tell you from personal experience, this is the case.

Good luck to you and please keep us updated on your journey.

(Editing to add one more note:  there's a link on the ana home page that provides a list of what to ask your doctors as you're consulting.  I urge you to find and save this info; it is exceedingly useful.)
« Last Edit: February 12, 2016, 04:40:59 pm by areles »
22 y/o son:

2.8cm dx 12/31/15
translab (10 hours) at house clinic 2/23/16 - dr schwartz, dr miller
surgical repair of csf leak 2/27/16 - dr miller, dr chen
as of 2/28/16, still in hospital, with tentative release scheduled for 3/1/16
{indeed sprung 10:15a 3/1/16}

dankar1016

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Re: Newly diagnosed, need help please
« Reply #4 on: February 12, 2016, 11:57:51 pm »
Thank you all so much for your words of encouragement and great advice.  I have a lot to think about until my next appointment and I already researched doctors both in my area (I live in a big city on the east coast with university teaching hospitals) as well looked into a couple in LA (USC, ST Vincent).  I will definitely take advantage of those free phone consults and I'm not opposed to flying out there for treatment if my chances are better for the best outcome.  I am concerned about putting anymore radiation in my body....I had more than my share in my life - lots of it to treat the thyroid cancer and many X-rays, cat scans in my life.  Its probably either watch and wait or surgery.  thanks again, I'm calming down a bit now....well, as best I can on these darn steroids! And thanks again for taking the time to write back to me!