Author Topic: Introducing Myself, just diagnosed  (Read 19627 times)

BeckyMax

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Introducing Myself, just diagnosed
« on: February 11, 2012, 10:21:05 am »
Hi everyone, first let me say that these forums are so so helpful. After experiencing hearing loss in my left ear for several months which I attributed to allergies, I finally saw an ENT about 2 weeks ago.  My hearing test did show some loss, but the ENT said the loss was not as great as I perceived and was probably due to a virus, and that I really had missed my window on steroid treatment.  I resisted saying I thought it was worse than that.  He then suggested an MRI.  I nearly cancelled the MRI, thinking it was unnecessary and that he ordered it just to appease me.  My husband was in a car accident last year and we have spent the entire year dealing with his recovery and the medical bills, I didn't need a bill for an expensive unnecessary test, particularly since our deductible had just reset, and I have actually dropped off his plan and am insured by my own company's lower coverage plan (big mistake!, we thought by dropping me, the healthy one, we could increase he and my sons coverage to his companies premium plan and everything would be fine).   Anyay, to my shocked the doc called on Sat and told me of a 5mm x 7 mm AN on he left side.

Holy cow, not at all what I was expecting, and now the fun begins.  The night of the MRI, while talking to an acquaintance I found out she worked for an ENT.  I quickly called her to get recommendations from her doc on other doc.  I have appts scheduled for next week and the following week with 2 different docs.  I also plan to send my records to House for an opinion.

Symptoms are hearing loss, occasional tinitus and fullness feeling.  At 5mm x 7 mm, I'm hoping for watch and wait and then to add myself back on my husbands insurance in January.

Medically, there are the facts, emotionally....wow, so many things running through my head, silly, but I always wanted to get certified to scuba dive.  My son was certified a few months ago and I was waiting till my husband was ready, which we expect would be sometime this year.  Don't know how this will affect that.  I turn 40 next week, and have been feeling the need to do something, accomplish something such as the scuba cert or a backpacking trip.  This is not now I intended to spend my 40th birthday.  But I'll go with the flow, research and be diligent.  There is a support group meeting today, YEAH!  Life has thrown us alot of challanges and we always persevere, this will be no different.

Becky
5mm x 7 mm AN Left Ear
7mm x 5 mm Left AN, diagnosed 2/9/12
7mm x 6 mm  8/12
9mm x 7 mm  8/13
Cyberknife 12/13

alabamajane

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Re: Introducing Myself, just diagnosed
« Reply #1 on: February 11, 2012, 04:45:40 pm »
welcome Becky,, and wow what a story.. but your attitude is great and that will be a big part of your journey,, you have been through so much already,, you know how to handle adversity.
As small as your AN is, and no more symptoms than you have, you should be able to w&w for long enough to do many of  the things you are wanting to do.. I am not a Dr though,, so take their advice,, not  mine  :)
good luck and keep us posted as this is a great forum to vent and talk and research and get help.. Good luck Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

Tumbleweed

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Re: Introducing Myself, just diagnosed
« Reply #2 on: February 11, 2012, 07:44:37 pm »
Hi, Becky, and welcome to the forum. Thanks for posting.

There is no reason why you can't do a backpack trip while you're in W&W mode. And depending on the type of treatment you eventually choose (assuming it even becomes necessary; some tumors never grow), you should be able to go backpacking within several months following treatment. As a backpacker myself, I know this to be true.

I must say I admire your attitude. I was a complete train wreck for about two weeks after my diagnosis. With an attitude like yours, you're going to do great. And the fact that your tumor was discovered so early gives you a huge advantage on many levels (health maintenance, time to research your options, etc.).

With a tumor as small as yours, there is no need to rush into treatment. It makes sense for you to first have a followup MRI in six months to be able to tell if the darn thing is even growing; some ANs don't grow at all over the course of 20 years, although this is uncommon. Should your hearing, tinnitus and fullness symptoms worsen, however, I recommend you get two or three expert opinions on the wisdom of waiting before receiving treatment, tumor size notwithstanding. That's because you don't currently have any imbalance symptoms, and you want to keep it that way. The vestibulocochlear nerve (the branched nerve that comprises both the vestibular-- or balance -- nerve and the hearing nerve) is quite sensitive to irritation and pressure from a tumor, which is why your tiny little AN is already causing so much trouble for your hearing. The balance portion of the vestibulocochlear nerve is situated just above your hearing nerve. So what is now affecting your hearing nerve is likely at some point to affect your balance nerve, too. An increase in your hearing-related symptoms could possibly mean increased pressure on the vestibulocochlear nerve, which could at some point lead to balance issues. Treating the tumor could possibly prevent balance issues from ever developing. But it could also irritate the balance nerve and precipitate the very symptoms you're hoping to avoid. This Catch 22 is why, if your symptoms increase, you should get a few expert opinions on whether timely treatment is your best course of action or not.

In the case of surgery, the anatomical continuity of the balance nerve can be completely preserved and yet the function of the balance nerve can be compromised (by the stress on it caused by cutting away any portion of the tumor that is adhering to or wrapped around it). According to esteemed doctor Steven Chang (Stanford University Medical Center), however, CyberKnife radiation treatments (CK) are not likely to cause new symptoms you don't already have (e.g., imbalance problems) but may exacerbate those symptoms you currently have (fullness in the ear, tinnitus and hearing loss) if only usually on a temporary basis.

So you can see that you can never predict with certainty a win-win outcome with these risky treatments, although some outcomes -- mine included -- are phenomenally successful. You want to use the best judgments of the best doctors regarding if and when to treat. But do keep in mind that any increase in your symptoms should impel you to seek immediate advice vis-a-vis fully preserving your currently intact balance functions.

Again, you're way ahead of the curve, seeing as your tumor is so small and you have no balance problems currently. You are highly likely to have a terrific outcome to all this as long as you do your research and get at least 2 or 3 highly qualified opinions. Btw, Dr. Chang will review your MRIs for free and give you his free recommendation. He is both a CK practitioner (perhaps the most experienced CK practitioner in the U.S.) and a neurosurgeon. His email address is sdchang@stanford.edu.

Best wishes,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

Tumbleweed

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Re: Introducing Myself, just diagnosed
« Reply #3 on: February 11, 2012, 07:50:01 pm »
P.S. Another doctor who will review your MRIs and counsel you by phone for free is Dr. Derald E. Brackmann, world-renowned neurosurgeon at House Ear Institute in California. You should seek his recommendation, too.
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

BeckyMax

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Re: Introducing Myself, just diagnosed
« Reply #4 on: February 11, 2012, 10:27:18 pm »
Thank you both for your kind words and encouragement.  Although it seems I am doing just fine, I can relate to
 the trainwreck feeling you speak of, my emotions are like a roller coaster, I choose my top of the hill moments to read and post and my ruuning down the hill moments for crying :)  I feel as though I have just lost a part of me that I will never get back.  The scuba certification has been my lifelong dream, get certified, go to Australia and dive the barrier reef.   With all that I am finding I don't think I would even consider attempting it, even if given the go ahead fro my doc.  I would just not want to take the risk.
Time to find another dream I guess.

The support group was wonderful,  I left there feeling great, then came home and read over info I got there and down I go.  Dinner at Red Lobster....left while waiting for a table, just couldn't do it.  Wednesday seems like an eternity away, i realize my tumor is small, but still would like to hear docs opinion asap.  Patience is not my virtue.

Becky
(Where do I create the signature line you are all using?)
7mm x 5 mm Left AN, diagnosed 2/9/12
7mm x 6 mm  8/12
9mm x 7 mm  8/13
Cyberknife 12/13

Tumbleweed

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Re: Introducing Myself, just diagnosed
« Reply #5 on: February 12, 2012, 12:55:05 am »

(Where do I create the signature line you are all using?)

Just above this (or any other) thread, there are menu selections: from left to right, they are Home, Help, Search, Profile and so on. Position your mouse over "Profile," and a drop-down menu appears. Select "Forum Profile." A form appears, in which you can type in whatever you want to appear in your signature line.

As for the roller coaster ride, it gets better, Becky. It's really really tough right after being diagnosed, but I promise you that you will get a firm footing again very soon. I thought my life was over after getting diagnosed. Now, life is great.

Don't give up your dream of diving the barrier reef. As far as I know, there is no medical reason for you to forfeit that dream. Your doctors can tell you if it's a potential problem, but I doubt it will be. When I fly at high altitudes, my ears get terribly clogged up, and yet the pressure doesn't bother my AN at all. So I doubt diving would either.

When I got treated for my AN (with CK), I asked one of Dr. Chang's nurses what I should and shouldn't do afterwards. She said to me, "Live your life. The people (with ANs) who fare the best are the ones who just go on living a rewarding life."

Don't give up your dreams. There is absolutely no reason to!

Best wishes,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

Lou

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Re: Introducing Myself, just diagnosed
« Reply #6 on: February 12, 2012, 06:49:39 am »
Hi and welcome.
I have to concure with the other comments, never give up on your dream. My husband and children are all scuba divers, I however am not, because my ears do not equalise themselves. I have to have tubes in all of the time to help with the pressure, unless this is an issue, I don't see why you couldn't scuba dive.
As far as the size of your AN, I think that it depends on where it is sitting as to symptoms. And yes it is so hard not to let it run your life. It does get easier.Some days it runs my life due to symptoms, sometimes I can go weeks, but knowing what you are dealing with helps and this forum is a god send.
Go scuba diving, at least go for a tri dive and see if you want to pursue
''The more difficulties one has to encounter, within and without, the more significant and the higher in inspiration his life will be''

Bilateral facial nerve neuromas
8mm left side and 7mm right side. diagnosed late 2011.Watch and Wait Staus -  Currently at
the mercy of the English NHS system

PaulW

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Re: Introducing Myself, just diagnosed
« Reply #7 on: February 12, 2012, 12:47:02 pm »
I tried to go Scuba diving a month ago, but the health declaration that you need to sign would stop you unless you have a medical certificate.
ie do you have a brain tumour, or balance problems.
You will need to get a clearance from a doctor before you can go.
If you have clearance its all good.
No reason I can think of as to why you cannot Scuba Dive with an AN


 
« Last Edit: February 12, 2012, 01:12:36 pm by PaulW »
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!

Tumbleweed

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Re: Introducing Myself, just diagnosed
« Reply #8 on: February 12, 2012, 11:25:26 pm »
According to esteemed doctor Steven Chang (Stanford University Medical Center), however, CyberKnife radiation treatments (CK) are not likely to cause new symptoms you don't already have (e.g., imbalance problems) but may exacerbate those symptoms you currently have (fullness in the ear, tinnitus and hearing loss) if only usually on a temporary basis.

Best wishes,
TW

After re-reading what I wrote, I have to correct one part of it: After CK (or any type of radiation treatment), you may experience additional permanent hearing loss. Some patients do, others do not. I was thinking of increased balance issues when I wrote that; they are almost always temporary. Again, since you don't currently have balance issues, CK is highly unlikely to cause them.

It is unclear whether the CK recipients who suffer additional hearing loss do so because of the radiation or because of the tumor. Radiation doesn't immediately kill a tumor; that takes many months. It's the radiation's damage to a tumor's DNA (and it's blood supply) that kills it, because the tumor is unable to undergo cell division and continue to grow. That process takes awhile, during which time the tumor is still alive -- though dying -- and may be the cause of further hearing loss. It's possible that a CK patient who loses additional hearing might have lost that hearing over the same time period even without treatment. Nobody can say.

Sorry for my partly inaccurate statement.

Sincerely,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

BeckyMax

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Re: Introducing Myself, just diagnosed
« Reply #9 on: February 19, 2012, 10:35:17 pm »
I met with a Neurotologist on Wednesday and he advised me exactly as I expected, to wait and watch.  I left his office feeling very relieved but as the week ended and I approached my 40th birthday on Saturday, I started really feeling down.  This is just so much to take in.  I know I don't need to make any decisions right now, but it is so difficult just knowing that I have this tumor in my head.  We had a weekend getaway with some friends and I ended up coming home about 6 hours earlier than planned, I just didn't enjoy myself and couldn't understand why everyone else seemed to be having so much fun. 

I'm seeing another doctor tomorrow for a second opinion, maybe I'll feel better after that.

Glad to have some place to express my true fears and know that you all understand.
7mm x 5 mm Left AN, diagnosed 2/9/12
7mm x 6 mm  8/12
9mm x 7 mm  8/13
Cyberknife 12/13

CHD63

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Re: Introducing Myself, just diagnosed
« Reply #10 on: February 20, 2012, 07:41:20 am »
Hi Becky .....

You are describing exactly what many of us felt upon learning about our ANs ..... after the shock of the initial diagnosis.

It truly changed my viewpoint on life, at many points.  The important things in my life shifted quite noticeably (to me!).  I was one who could not have waited and watched, knowing that "thing" was growing in my head.  But, not everyone is like that and I respect that.

All that being said, did you ever send your MRI CD to House Ear Clinic for another opinion?  If not, you should.  It will help you to make an educated decision.  You are under no obligation to do what they recommend.

It is your body and your life.  Only you can make the decision on what to do.  Many thoughts and prayers during this very difficult decision-making time.

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

BeckyMax

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Re: Introducing Myself, just diagnosed
« Reply #11 on: February 25, 2012, 01:05:01 pm »
My second opinion didn't go as planned, he advised surgery.  Although I had been told ahead of time that his reputation is to operate i thought that certainly with the size of mine, that wouldnt be the case.  Already I'll from a head cold, I was really stressed and depressed after this appointment.  Pretty much stayed in bed for 3 days, sleeping, crying, researching.  Made an appointment with a third doctor and saw him on Friday.  He totally disagreed with doc #2.  He set me at ease and I've decided to watch and wait.  My outlook today is so much better. I hit the gym last night and this morning.  I've booked my scuba trip on our upcoming cruise, which all 3 docs have said is OK.  I've decided to let doc #3 follow my case.  Dr. B is a surgeon, stated that he is so and that he makes a living doing surgeries, but he also does not advise a surgery that will leave a patient worse off than when they started.  Being that my tumor is so small and that I have only slight hearing loss as my only symptom he would not recommend undergoing such an invasive procedure at this time, and even if it grows and becomes more symptomatic he would recommend radiation over surgery.  He went on to say this would be his recommendation if this were his wife.

I love Dr. B!  He said everything I was feeling and clearly is a good fit for me.

(Wondering now how my insurance company is going to treat these 3 appointments)

Becky
« Last Edit: February 28, 2012, 01:26:11 pm by Jim Scott »
7mm x 5 mm Left AN, diagnosed 2/9/12
7mm x 6 mm  8/12
9mm x 7 mm  8/13
Cyberknife 12/13

Mickey

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Re: Introducing Myself, just diagnosed
« Reply #12 on: February 28, 2012, 10:34:21 am »
Being diognosed with a 1cm AN approx. 5 years ago at 58 really changed my way of thinking. I just do everthing to the MAX (especially health orintated things). At 63 and stable W+W, feeling pretty good retired I have NO boundrys.  I attribute my well being feeling (under the circumstances) to Just DO It approach. Wishing the best for my AN family, Mickey

Susan A

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Re: Introducing Myself, just diagnosed
« Reply #13 on: February 28, 2012, 06:59:40 pm »

(Wondering now how my insurance company is going to treat these 3 appointments)

Becky

So sad that we have to worry about such things! I saw a local neurotologist, another at MEEI, the chief of neurosurgery at MGH, and Dr Plotkin at MGH - and my insurance paid up without any trouble for all four visits. Hopefully yours will pay up as unquestioningly too!

Susan
2011 8 x 7 mm AN, & 20 x 22 mm M found, both on the left. Mosaic NF2 diagnosed. Some hearing loss
2014 hearing 30% on left, now using hearing aid (HA)
2015 Now have CROS HA - no longer hear enough for HA to be useful in AN ear
2016 Use an FM system on occasion at work to supplement HA

BeckyMax

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Re: Introducing Myself, just diagnosed
« Reply #14 on: February 28, 2012, 08:25:21 pm »
Mickey, so true!  I really do feel as if this has been some sort of wake up call.  I had already started working on my health, exercising and eating better.  I was down 16 lbs.  I now feel, motivated to keep going, trying for another 9 lbs.

Susan, that's good to her.  I've only been on this job for 5 months and have not used my medical insurance at all yet, other than for a prescription.

I'm doing well and want to thank everyone for their support.

Becky
7mm x 5 mm Left AN, diagnosed 2/9/12
7mm x 6 mm  8/12
9mm x 7 mm  8/13
Cyberknife 12/13