Author Topic: CT mom...just diagnosed :(  (Read 4321 times)

Auntie

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CT mom...just diagnosed :(
« on: January 10, 2015, 06:22:52 pm »
Hi, All!

Well, being diagnosed with an AN was NOT the way I wanted to kick off 2015!

On Monday I received a call informing me that my MRI showed a small 6x3x4 mm AN on my right side. For a split second I was relieved to have an explanation for my vertigo, which is at times debilitating. That was a blissful moment before the panic set it! I was referred to Dr. Kveton at Yale and we met yesterday. I would like to share some things about my situation with the hopes of hearing your thoughts and reactions. Here goes!

-I am 30 years old and live in southern CT.
-As I stated above, my AN is quite small.
-Based on testing I have zero hearing and balance loss.
-I experience significant vertigo daily.  Some days are better than others, but I have experienced dizziness at least once a day for the past month and on and off for 7 months.
-Dr. K said radiation is not an option because I am young and still have perfect hearing. Surgery is the only chance of preserving hearing and the long term effects of radiation are not known.
-By no means did he make me feel like I should rush into the operating room tomorrow. However, he said that any day I could wake up with hearing loss and there is no way to get it back. The better hearing you have going into surgery, the better your chances are of having some degree of hearing after.
-I have a 15 month old and was gearing up to try for another, so that is adding to the emotional struggle.
-I have an appointment with Dr. Piepmeier at Yale in 2 weeks.
-I will be getting more opinions, but nothing is scheduled yet.


I have SO many questions..I just don't know where to begin. I'll spit them all out and if you have an answer to at least 1, please share!

-does the suggestion of surgery seem hasty or accurate? I'm struggling with committing to a major surgery when I have zero damage. At the same time it seems ridiculous to wait for it to get worse to do something about it.

-any recommendations on doctors in CT or NY?

-I've seen information on doctors who do phone consultations. Any recommendations on which ones are the best?

-For those who have experienced surgery, after the approximate 6 week recovery, what does the first year post op entail? At what point do you have another MRI? I want to wrap my head around how long baby #2 may be delayed.

I appreciate any guidance possible! To say I am overwhelmed is a massive understatement. I am just trying to slowly chip away at this..I feel like this diagnosis is a full time job!!

CHD63

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Re: CT mom...just diagnosed :(
« Reply #1 on: January 10, 2015, 09:17:19 pm »
Hi Auntie and welcome to this discussion forum .....

You have come to the right place to find a wealth of accurate information regarding treatment options.  If you have not done so already, I would urge you to explore all of the pages of the anausa.org web site, especially https://www.anausa.org/medical-resources

I would also urge you to send for the free informational packet from the ANA:  https://www.anausa.org/contact-us

With a small tumor you have time to do your research.  Do not let anyone rush you into treatment until you feel comfortable with a plan.

There are several medical facilities/physicians around the country with vast experience treating acoustic neuromas ..... most of them will do free evaluations based on a copy of your MRI, an audiogram (if you have one) and a brief history of your symptoms.  Many of us traveled to other states for the best treatment we felt was right for us.  If you would like a list of places with vast experience, just let us know.

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

Kathleen_Mc

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Re: CT mom...just diagnosed :(
« Reply #2 on: January 11, 2015, 02:08:27 am »
Hi and welcome
The decisons ahead of you are difficult one's that's for sure, they are only yours to make.
I myself had my initial surgery long before I planned to have children, about a year to a year and a half before I got pregnant with my first I had an MRI done, it was the first to be done after my surgery. The neurologist I had at that time told me it only showed "scar tissue" and to return the next year for another MRI.....with the belief that I was tumor free I went ahead and had my son......only to return a year later and find she hadn't been truthful and I had tumor regrowth that had continued to grow! I wanted to have another child so my sergeon advised I just "wait and see" as the tumor posed no threat.....I went ahead and had another child and continued with yearly MRI's, the tumor continued to grow and I had it removed when my youngest was 4.....the years I spent in W & W were rather anxiety ridden (to say the least) and I found I constantly worried that I was pushing my luck by continuing to wait to have the regrowth removed (my orginal tumor was massive and almost killed me.....within mm of the brain stem when found). If I had it to do differently my doctor wuod have told me the truth and I would have had the regrowth removed BEFORE having children.
That all being said again the decision is yours to make right now, what are you comfortable with?
You want to have another child, is your age an issue? Is that why you don't want to put off another child and have the surgery now (or what ever form of treatment you have?).
The doctor you spoke to what were his concerns about you having gamma knife? The unknown long term effects? I have read about many young people having it.
Your only symptom is vertigo? You should know having surgery will not necessarily remove that for you, some people don't have this pre treatment but develope it post operatively as well.
Do you plan to get opinions from both doc's pro surgery and pro radiation?
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)

ANGuy

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Re: CT mom...just diagnosed :(
« Reply #3 on: January 11, 2015, 10:19:11 am »
This is simply my personal opinion, based on only the thoughts that have run through my head since I was diagnosed in June '14.  At your age, with your size tumor, I would wait a minimum of one year before I even considered surgery.  Set time tables for yourself.  For the next year, spend your time learning all about this problem, and seeing that your emotions WILL MODERATE.  Even in the next few weeks, you will see that it all becomes easier to deal with.  DO NOT let your emotions get the better of you, as some, unfortunately do.  In some ways, this is a very big deal, in others, it isn't.

Keep in mind the following.  Often, with surgery, they leave behind as much tumor as you have now.  People with 3cm tumors come out of surgery with more left behind that you have now because the surgeons play it safe in regards to damaging the nerves.  Also, symptoms, as mentioned above, are very often independent of the three choices you have.  Surgery, radiation, and waiting all have the same possible risks and benefits.  Any of the three could make your symptoms worse, better or they could stay the same.

Also, while there apparently isn't anything on the horizon, you never know what improvements in treatment could be around in ten years.  The possibility of you being able to postpone treatment for ten years is not out of the question.

As for the symptoms, there are meds to help with vestibular symptoms.  Do you get "vertigo", or are you actually "dizzy".  I thought I have vertigo when in fact I was actually just dizzy.  The vestibular symptoms can make you vomit over and over again.  It is like a bad hangover.  There are meds for this.  With my nausea and dizziness, I get attacks once in a while.  The rest of the time I feel "normal".  When I feel myself getting dizzy and sick, I take a zophran which immediately stops the vomiting.  I also take a med called antivert and a valium.  These take an hour or two to stop the dizziness but at least I'm not vomiting.  Sometimes when I feel a little "off" in terms of dizziness, I take a benedryl or two and it really works well.  Ask your Drs about meds for dizziness and vertigo and get a few different ones.  The ones that work best, for strong symptoms, will make you drowsy, very drowsy.  The ones like benedryl, you can take half the dose (one 25mg pill) and you get used to the slight drowsiness for when your symptoms are slight.
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

Echo

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Re: CT mom...just diagnosed :(
« Reply #4 on: January 11, 2015, 01:46:23 pm »
Hello and welcome Auntie!

I agree with ANGuy you have time on your side. A rushed decision is not necessary until you research fully your options.  Definitely get several opinions and check out specialists with lots of AN experience.  The more experienced your doctor the better your outcome.  I was in my late 50's when diagnosed with my AN at 1.8cm. Within a year it had grown to 2.4cm.  Statistically AN's grow very slowly, however, some can grow a bit faster.  Be diligent and have follow up MRI's done at 6 months and 1 year to establish if your AN is growing or remaining stable.  As you do your research, learn more and have a few more consults, your decision will become easier. 

While your first specialist told you that surgery is the only chance of preserving your hearing, that depends entirely on what type of surgery he is recommending.  With Translabyrinthine you will loose all hearing immediately, with Retrosigmoid and Middle Fossa you have an increased possibility of hearing preservation but it can be lost over time.

One of the interesting facts I found was that your symptoms can change or increase without your AN growing in size and your AN can grow without your symptoms changing - this is what makes those yearly MRI's most important so you can determine exactly what's going on.

Best of luck,
Cathie

Diagnosed: June 2012, right side AN 1.8cm
June 2013: AN has grown to 2.4 cm.
Gamma Knife: Sept. 11, 2013 Toronto Western Hospital

madonal1

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Re: CT mom...just diagnosed :(
« Reply #5 on: January 12, 2015, 10:20:52 am »
Hi I have a 2.2 cm an , have not had surgery. My problems like facial numbness gt worse while pregnant with my 4th child, Dr. thought it was bells palsy.  After my fifth child I felt like it was not bells palsy so I got an mri. I have a 1 r old, 3 yr old, 5, 7, 13. I was told that I would lose all hearing in that ear after surgery. I already have severe hearing loss in the ear. I am dreading having to stop breastfeeding or not seeing my baby for a week.  I would just think of all the pro's and cons and pray about it. Sounds like your is really small.

michellef08

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Re: CT mom...just diagnosed :(
« Reply #6 on: February 02, 2015, 02:09:03 pm »
You can send your MRI to House Clinic in LA for a free consult:  https://www.houseclinic.com/consultation/acousticneuroma
They are very experienced with AN surgeries, so it will be great to get their opinion, even if you don't decide to go with them.

I had my surgery there with Dr. Schwartz and Dr. Friedman in April 2013, when I was 27 years old. I had Middle Fossa, and I had zero facial or balance issues and they saved my hearing! Because of my young age, the 3 specialists I saw (UMD, Hopkins, House) all recommended surgery, to get the tumor out, recover quickly, and move on with my life.

For recovery time - I was back to work at 6 weeks. I was driving, and going about my life completely normally. After you leave the hospital - you are done with appointments! The only thing is a 1 year MRI, and I believe maybe a 2 year?, and then a 5 and 10 year MRI!

Let me know what other questions you have, I am happy to share my story!

~Michelle
Diagnosed Dec 2012: AN right side 1.4 cm with mild hearing loss and tinnitus. Surgery: Middle Fossa at House with Schwartz/Friedman on April 10, 2013. Entire tumor removed, no facial issues, no balance issues, and they preserved my hearing!!

Auntie

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Re: CT mom...just diagnosed :(
« Reply #7 on: February 20, 2015, 11:26:45 am »
Hi Everyone!

First off, thank you so much for your support. When I first posted I was SO incredibly overwhelmed and all of your responses really helped me to see through the fog.

I ended up getting 4 opinions and for the most part they lined up quite well. 3 agreed on surgery now, while 1 said I could watch and wait and eventually have surgery when it grows. After some serious consideration I decided it was best for me to go ahead with the surgery now, so I will be heading out to USC to have my surgery done with Dr. Friedman on March 4th. I feel really confident in my decision and am so anxious to put the surgery behind me.

Again, thank you all for your support! We are so lucky to have this community helping us along the way!

Ahollo

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Re: CT mom...just diagnosed :(
« Reply #8 on: February 20, 2015, 08:38:06 pm »
Hi Auntie!

Good luck with your surgery. I'm trying to get out there too. I'll know next week if my referral is accepted. My husband is military, so the insurance part is going to be tricky. I was told this afternoon that the Colonel of the hospital here said to deny all outside referrals. I'm going to stay positive, and fight it if necessary. I too, am anxious to have this thing gone!!

I'll be thinking of you!

 


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