Author Topic: Newly diagnosed with two acoustic neuromas behind the same ear.  (Read 1039 times)

JaneK

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Newly diagnosed with two acoustic neuromas behind the same ear.
« on: October 26, 2017, 04:46:41 pm »
Hello everyone,
I am really glad that this forum exists  :)
I was just diagnosed with two acoustic neuromas behind my right inner ear and I'm wondering if
anyone here has had multiple of these on the same side at the same time? I know they can happen
bilaterally but does anyone know anything about multiple unilaterally at the same time? Also, I'm trying to not overreact to the thought of surgery but I have to admit that I think it sounds pretty scary. I'll be seeing Dr. Barker at Mass General but right now I'm waiting for him to review my medical notes and MRI, I have no idea it will be before I see him or how long I will have to wait for the surgery. My symptoms have been tough the last 5 weeks and seem to be progressing from bad headaches with pressure, tinnitus and pain in my head behind my right ear and stiffness sporadically in the back of my tongue, to now pain reaching behind my head laterally with it extending into my jaw, upper part of my eye and down the back of my neck on the same side. The fatigue has been a big problem for me for the last year, well before all the symptoms started.
It seems strange that my symptoms are so sever though since both of mine are pretty small still; one is 9x9x7 mm and the other is 4x4mm. The larger one has a cyst in the middle of the legion and is centered in the right poruss acousticus and the smaller one is lateral to it in the right auditory canal. I'm hoping that having two doesn't mean that I'll loose total hearing from the surgery.
I look forward to any insight that anyone has to share and I appreciate your support.
Wishing you all well! Jane

ANSydney

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Re: Newly diagnosed with two acoustic neuromas behind the same ear.
« Reply #1 on: October 26, 2017, 05:54:24 pm »
Jane, welcome to the club that nobody wants to be a member of, but everyone is friendly.

I have never heard of having two tumors on the one side. This is probably a unique situation. It would be interesting if the doctors you consult have seen these, and if so, how frequently.

As you know, there is no need to rush into a decision. These tumors typically grow at about 1 mm/year. At 0.9x0.9x07 cm and 0.4x0.4 cm your tumors are small.

Consult neurosurgeons and radiosurgeons and look at studies.

Most of your symptoms sound like ones I've heard before for vestibular schwannoma, except for the pain in the upper part of the eye and back of the neck.

Surgery has poor success with regards to hearing preservation. The best option for hearing preservation is to not actively intervene - https://www.bhtinformatie.nl/pdf/ingrijpen.pdf .

Have you had a hearing test? What were your results like? How long have you had any symptoms that may be able to be attributed to a vestibular schwannoma.

Keep a record of your symptoms and write them down. Look how they progress over time. Have you had a look at your tumors? If you get a CD of your MRI you can look at the images on your PC and do your own measurements.

alabamajane

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Re: Newly diagnosed with two acoustic neuromas behind the same ear
« Reply #2 on: October 27, 2017, 11:17:25 am »
Hi Jane,
I have not read Of anyone with two on one side that I can remember,, very unusual.

I have read many posts about Dr Barker though and I’m sure you will get good advice from him that you can rely on or your decision making. It is your decision to make and this makes this diagnosis a difficult one. So often with medical issues we are used to a doctor telling us how we should proceed,  such as a broken bone or gallbladder etc. but this is one time that your research and even second and third opinions will be helpful.

You can send a copy of your MRI out to House Clinic in Los Angeles area and receive a very knowledgeable phone consult from one of their VERY experienced doctors. I did this and the information was invaluable and Dr Slattery was wonderful. Just another option to help you understand what you are dealing with. There are other facilities who will provide guidance also.

Your symptoms seem to be impacting your daily life and health. This as much as size of your tumors will dictate treatment or watching. When your symptoms are unbearable, it is hard to justify waiting.

See what doctors say as we generally are not medical professionals,, just AN warriors,,  ;D
Good luck with your research and let us hear from your visit with Dr Barker. It will be interesting to hear if he has seen many patients with two on one side.

We “Janes” usually are unusual and interesting folk !  >:D
Peace.
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

kareno

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Re: Newly diagnosed with two acoustic neuromas behind the same ear.
« Reply #3 on: October 30, 2017, 02:35:49 pm »

Hi Jane:

ANA forum is a wealth of knowledge with friendly folks who help each other.  I have read posts over the years but have not seen (2) AN's on the same side.  If you are looking for a second or third opinion Dr. Carl Heilmann Tufts Medical Center Boston and his team are amazing and operated on my husbands large AN.  Their care was exceptional.  Sending you positive thoughts and prayers.

Karen
Caregiver:  Husband 3.0cm diagnosed 1/10, Retrosigmoid Surgery 4/10 Tufts Medical CTR Boston, Dr. Carl Heilman-Exceptional Surgeon

JaneK

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Re: Newly diagnosed with two acoustic neuromas behind the same ear.
« Reply #4 on: November 02, 2017, 07:32:44 am »
Thank you Sydney, Jane and Karen for your thoughtful and encouraging replies.
I just had my hearing test and exam with Dr. Santos at MEEI and he will be working with Dr. Barker for my treatment.
It turns out that it is only one AN and that Dr. Santos has the experience to view the AN at multiple angles so his assessment has lessened my concerns a little. Dr Santos was very thorough about explaining my options. I agree it's hard to make the decision to have the surgery, especially when you know that you're going to initially come out of the surgery feeling worse than when you go in. The recovery seems like it'll take a sharp bite out of you for a while. It's definitely a decision that puts your symptoms at the forefront for the most reasonable plan. In my case I can't see an option that doesn't involve the surgical removal because for whatever reason my biggest symptom is nerve pain which I'm finding difficult to function around.
I was happy about my audiogram results which showed only a little hearing loss, so that's pretty encouraging.
The doctor said that the surgery for me would be the retrosigmoid. He said the size of the tumor is considered medium and this approach allows me the best case for maintaining my hearing.
How intense is the recovery from this kind of surgery? Will it mean I can't drive ? I have four children so I'm a little concerned about the restrictions. Also, how long is it before you can take a plane? I feel like there could be an entire recovery manual written for these surgeries.
Thank you all for your kindness and support, it's really nice to have people to talk to who really understand and have so much insight into this condition.
I still laugh at the part of Sydney's comment ... welcome to the club that no one wants to be a part of .... LOL  ;)

alabamajane

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Re: Newly diagnosed with two acoustic neuromas behind the same ear.
« Reply #5 on: November 02, 2017, 07:54:36 am »
Jane,
I’m glad you feel comfortable with Dr Santos and Barker. I have read many on here who have used these Drs with good results. Stay positive and find peace with your decision.

I didn’t have retrosig surgery so I’m hoping some others who did will reply with recovery help. I don’t think you will be able to drive however for maybe at least 3-4 weeks,,, just my thoughts ,, I know I did not feel confident for about 5 weeks,, but it was around Christmas with extra traffic etc,,,  :)

Good luck ,, you may want to send MRI copy to other Drs for second opinions if you feel the need.
But if you are satisfied with this team then there would be no need.

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

ANSydney

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Re: Newly diagnosed with two acoustic neuromas behind the same ear.
« Reply #6 on: November 02, 2017, 04:13:42 pm »
JaneK,

Not so unique - only one tumor :-)

For your nerve pain, there are pharmacological solutions. Not suggesting you should be on them for years, but long enough to see if symptoms get better or worse and give you time to check if it's growing and by how much. Ideally a third MRI would also tell not only velocity (which can be positive or negative), but also acceleration (which can be positive or negative).

It also buys you time to talk to others and do your own research.

What are your hearing scores?

What chance were you given of retaining hearing?


bethtretrault

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Re: Newly diagnosed with two acoustic neuromas behind the same ear.
« Reply #7 on: November 03, 2017, 03:12:03 am »
Jane, I am 2 years post retrosigmoid today. Yay! While not the same I am better in some ways. No more tumor related symptoms since it is gone, for example. I am glad I chose that path. Chose the path that is right for you. We all have different circumstances. For me I feel powerful and humbled and grateful. I REALLY appreciate each day in a way I  didn't before and found I impressed myself (that really was brave). All the best and keep us posted.


beth
12/2013 5mmx4mmx4mm left
tinnitus, w&w
5/2015 7mm-louder tinnitus, occasional dizziness
retro sigmoid 11/2015

 


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