Author Topic: diagnosed last week  (Read 1294 times)

jpark01

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diagnosed last week
« on: August 13, 2019, 09:36:55 pm »
Hi, I am 41 yr old and had mild tinnitus and reduced hearing in my right ear for few weeks following my breast cancer reconstruction surgery in June. My MRI revealed that I have 7x 14 mm AN. I met with a surgeon and he suggested that I should go for a surgery or radiation but not to do "wait and watch" because I am young and it will grow anyways. He said there is about 60 % chance of preserving the hearing for surgery but if I have a gamma knife, I will loose hearing eventually in 2 years. I really want to avoid surgery but seems like gamma knife is not a good option, either. Would it be a bad idea just wait and watch now? Or should I just go for a surgery? My doctor says everyone is different and I have to make a decision but I can't make any decision now. Help...

lryan42

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Re: diagnosed last week
« Reply #1 on: August 14, 2019, 11:18:38 am »
Hi, Jpark, good to virtually meet you.  And, I'm sorry to welcome you to the AN club.  I know how spooky and stressful this journey is, especially in the beginning, and I regret that you are going through that.

The good news, though, is twofold:

1. The folks here are super supportive and helpful, and there is a ton of very helpful information to be found here.
2. Having an AN really stinks and can be super scary at first, but you can rest assured that it's going to be OK.

I think regarding your course of treatment everything depends on your tumor's specific details, your medical history, etc.  I'm not a medical doctor so I am not qualified to suggest anything specific about your case, but if you are comfortable sharing a bit more information about your situation perhaps someone who has been through a similar sort of AN can chime in with their experience.  Do understand, though, that everyone's journey is different.

In my personal case, I have a very rare location for my AN which renders it entirely untreatable without destroying my natural hearing.  So, "wait and watch" is the only course of action for me.  As you might imagine, I found that "plan" unhelpful so I collected a LOT of second opinions from a bunch of different doctors.  I personally think that approach makes a lot of sense for you here: I would strongly suggest you talk to multiple people who have experience specifically with treating ANs.  You don't have to talk to 10 like I did, but if you're like me, hearing from 2 or maybe 3 will give you confidence in your choice.

About the specific types of doctors: I think this matters a lot.  Though I have talked to two neurosurgeons, I found the input and experience of my group of specialty ENTs the most helpful.  Specifically I think you want to find an ENT who has training and experience in neurotology: that sub-field of ENT deals directly with the sorts of issues caused by ANs.  When I was talking to some of the doctors I've included below I learned that a couple of them have treated many hundreds or thousands of ANs, whereas a neurosurgeon may have only treated a dozen (or fewer).

There are a number of doctors in the USA who are very focused on AN issues and who do free "virtual consultations" where you can send them your MRI images and they'll give you their opinion and suggest a course of treatment.  If you search these names you'll find many AN patients who have been helped by them.  I have been through the process with each of these groups and have been incredibly impressed with their compassion and experience.  This may be a good place to start; I reached out via email and phone to set up phone consultations:


If I had to pick only one for you to talk to, it would be the folks at UCSD.  They have a patient coordinator who is amazing and is a former AN patient herself.  I talked to her for 45 minutes one day about her experience and she REALLY helped me calm down and understand the path ahead.

And, at the risk of speaking from a place of ignorance about your specific case, and again with the disclaimer that I'm not a doctor and only know about my circumstances: if there is not an emergency due to the specifics of your tumor (for example, is it impinging on your brain), you probably DO have time to wait and watch, and to breathe, read, talk to doctors, and allow the "newness" and fear of this situation to decline a bit.  It might not seem like that sort of emotional evolution will happen, but I suspect it will: I've had my AN for at least 4 years (probably longer), and now it's just an annoyance in my life rather than something which terrifies me each day.

Please keep posting - we're all happy to help out however we can.

There is a bright future for you on the other side of this.
« Last Edit: August 14, 2019, 11:21:15 am by lryan42 »
2017 - Mild vestibular symptoms; lots of testing, misdiagnosis, and vestibular rehab
2018 - MRI w/o contrast: 4mm x 3mm x 2mm AN
2019 - MRI /w contrast: 5mm x 4mm x 3mm AN

My AN's location is inside the vestibule (rare) and not treatable w/o definitely going SSD; waiting and watching for now.

ANSydney

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Re: diagnosed last week
« Reply #2 on: August 14, 2019, 04:52:06 pm »
jpark01, welcome to the club that nobody wants to be a member of, but everyone is friendly.

Most tumors have already stopped growing or have slowed down by the time they have been diagnosed  ( https://acusticusneurinom.dk/wp-content/uploads/2015/10/natural-history-of-vs.pdf )

Your tumor is small so you've got time to do two follow up MRIs to see if it's still growing and by how much. If you read about these tumors you'll discover there is no need to rush. Use the time to find out about your particular growth rate and read studies on this disease.

The best way to keep your hearing for as long as possible is to do nothing.

You may want to talk to a radiosurgeon about gamma knife. I'll bet he won't support the statement "I will loose hearing eventually in 2 years". My bet is he'll say 10 years.

You may want to get your MRI on CD. Most of the time the CD includes a viewer and measurement tools.

From a previous post by me
The article at https://www.ncbi.nlm.nih.gov/pubmed/18559028 concludes "An initial period of conservative management is a safe and reasonable management policy in all acoustic neuromas up to 2 cm in size at the cerebello-pontine angle. Given that there are no failsafe ways of deciding potential for growth in acoustic neuromas, initial conservative management of these tumours offers superior hearing and facial nerve preservation when compared with primary surgical treatment."

No matter what you do, your hearing is likely to decline. If you want to minimize the decline, watch and wait has the best results. ( https://pdfs.semanticscholar.org/2cef/abe8e8eef1ae32cab8bcf3c71dd75f53387c.pdf ) In particular, "In the literature, to our knowledge, there have been no reports of the hearing preservation after 10 years or more after hearing preservation surgery or radiotherapy. In the present study [no active treatment], 95 patients had been observed for 10 years or more. According to the AAO classification, 46% maintained good hearing after 10 years or more compared with 45% using the WRS classification and 75% of patients with 100% speech discrimination at diagnosis."

The clear majority of tumors have already stopped growing by the time they are diagnosed. Take a look at the thread https://www.anausa.org/smf/index.php?topic=23404.msg979773646#msg979773646 .

bfoley

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Re: diagnosed last week
« Reply #3 on: August 15, 2019, 05:58:09 am »
Welcome Jpark01!

Yup - this is the place where we can all relate, in some form or another.  Welcome!  Folks here are great.

I can only speak for my personal journey.  My symptoms were slight hearing loss, balance issues and dizziness.  After doing research, discovered that one can have facial paralysis as well.

A month or so after, I became very sick (vertigo, vomiting, huge balance issues) for 4-5 days and noticed my hearing in the neuroma side was basically gone.  Later, tests confirmed that I have no serviceable hearing.

For me the priority became - 1) preserve face movement.  2) Regain balance.  3) Reduce dizziness.  4) Hearing.

Hearing moved WAY down the list when faced with the other challenges.  I was told that hearing will be whatever it would eventually be if you had no treatment.  If you were going to lose it eventually on W & W, then you will lose it with Gamma/CK, just sooner.

As other suggested, I would talk to several different Drs.  I went to 2 different facilities and consulted with several at each.  The specialist is likely going to recommend the treatment they specialize in (as its what they are most familiar/comfortable with).  I decided to go with Gamma Knife at Mayo in MN. with Dr. Link.  He is unique in that he works both with surgery and Gamma.  My treatment was in July and their protocol is now to wait 1 year for a follow up MRI.

Read through as many of the folks experiences on this board as you can.  As previously stated, everyones journey is different.  It is helpful to know what you might face in the future, as well as make you thankful for what you arent dealing with.  Usually with more research and learning, the treatment path becomes clearer.

When you need help, ask these folks - everyone is supportive. 

Wishing you PEACE!

Enri

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Re: diagnosed last week
« Reply #4 on: August 16, 2019, 04:46:37 pm »
Sorry to read about your AN but welcome to the club.

When I was first diagnosed, I think I read almost every post in this site.  It really brought home how different people's experiences are.  Some get comfortable with surgery, some with radiation and some with watch and wait.  I found it useful to read as much as I could.  It is important to talk to doctors that have treated many patients with AN.  A newbie or one that treats one once in a blue moon will not do.  Like others, I can only speak about my personal experience. 

My symptoms were mild tinnitus and partial hearing loss in the right ear.  I was diagnosed October 2015, although I think that I must have had the developing AN for years as I remember how I gradually started to favor my left ear when speaking on the phone.  I must confess that deciding on surgery was scary, but I was one of those that could not get comfortable with the radiation options.  My surgery was performed in Nov 2016 at Houston Methodist by Drs. Jeffrey Vrabec (neurotologist) and Gavin Britz (neurosurgeon). 

My symptoms after surgery are pretty much the same as before.  I had about 50% word recognition in the right ear before and it is about that now.  I had my second post surgery MRI earlier this year and it still says the magic words, no residual or recurrent VS.   I will have a follow up MRI in 2 years. 

I was almost 60 when I had surgery so I probably felt a bit more of a time pressure.  I wanted to deal with the issue before I got older and health issues become more complicated.

I posted a long note straight out of the hospital back then about my surgery.  I had retrosigmoid.   My blood pressure was going up when I tried to walk with the spinal drain still on.  but once they took the drain off, it was fine.  I stayed in the hospital an extra day to get myself comfortable that my blood pressure would not get unruly while I walked.    I managed to develop a CSF leak (out of the stitch on my back for the drain) a few days later.  I went back to the hospital and they found that I had  developed meningitis.  I went back on the spinal drain for a few more days and, of course, the antibiotics.  I got home just before Thanksgiving  and life has been great since then.

Overall, I am happy with the choice I made even if it was scary.   All I can suggest is do your research until you find what you are comfortable with.

Best of luck. 












----
Diagnosed Oct. 2015 - mild tinnitus, partial hearing loss - Right ear
1.5 cm x 0.8cm
Retrosigmoid Nov 2016 - Houston Methodist - Drs. Vrabec and Britz

Sharky

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Re: diagnosed last week
« Reply #5 on: August 20, 2019, 11:33:48 pm »
Hi jpark01 :-)

I was diagnosed end of May this year with a 7mm x 4mm AN. It was an incidental finding of sorts, because they were looking for an optic nerve tumor, but I had also just had a severe bout of vertigo that sent me to my primary care doc. It was interesting timing!

I was so so shocked and scared when I got the diagnosis. It was surreal. I'm coming up now on three months since diagnosis and I can say that, thse days, I feel really pretty chilled out about it all. I had to work through some serious terror, anger, disbelief and, of course, obsessive researching. My symptoms are very mild--ringing in my ear, that "full" feeling in my ear, and some subtle balance issues that typically show up when I'm over-tired and are noticeable mostly only to me. I thought I was having fatigue from the tumor, but that turned out to be low iron, vitamin D, and low B-12. Supplements and a much-improved diet have taken care of that.

At my initial visit, the ENT here in my city said that, because the tumor is small, and I am young (55), he wanted to W&W for six months and then discuss treatment options. However, I've decided to go out of state for treatment, if and when the time comes, and these doctors will not even do surgeries on small ANs. The stance I am taking is that I want to hold off on any treatment for as long as I reasonably can, because of the complications that can arise with surgery or radiation. It's such a personal thing, I know. This is just my story so far, and I hope something in it is helpful to you. Take care. :-)
NF2 suspected--genetics assessment 08/2019
05/25/19 W&W until 11/26/19
05/20/19-AN found R ear via MRI--7mmx4mm

-fullness in R ear, minor balance issue, tinnitus, FATIGUE-

 


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