Author Topic: Recently diagnosed with 2.4cm in Alabama. Need advice.  (Read 805 times)

Artteacher

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Recently diagnosed with 2.4cm in Alabama. Need advice.
« on: September 23, 2017, 10:15:09 pm »
I'm new here. I found out this week I have a 2.4x2.3cm Acoustic Neuroma. I'm more than a little worried. I have had left ear trouble/fullness with pressure for several years. Dr. thought it was due to sinus. Did send me for a hearing test about 3 years ago. This  past year or two, I have been having dizzy spells. Kept thinking it was dehydration. When around Christmas I was having extreme dizziness, I went to an ENT. I had a new hearing test, the light show test on the wall, and the cold/hot water test in my my ears all while they filmed my eye movements. Diagnosed me with Ménière's disease. I had classic hearing loss for Meniere's- not horrible but some.  Gave me meds, etc and it helped some. I was still having daily dizzy spells. I cannot turn my head to the left when laying down or I get violently dizzy and nauseous.
During this summer, my husband and I are dealing with Alzheimer's (my mom), F-I-L had a stroke, M-I-L has dementia, and a B-I-L and great nephew each had open heart surgery. I also have a very difficult father. So, I put off going back for a check up. I just figured stress was making my Meniere's worse. Two weeks ago, after a very stressful weekend, my left ear began ringing very loudly. When I woke up the next morning, still ringing, and my left ear canal was numb and I my hearing was almost gone in that ear. So I went back to the ENT. I do have Meneire's but she knew these symptoms were not it. After getting insurance to agree to an MRI, they diagnosed me with an 2.3x2.4 AN.
I'm seeing a Dr in Birmingham, Alabama on Oct 5th. I have no idea what he will say treatment should be. My ENT said he would take it out. I have many worries but I think I would like to get a couple of opinions before I rush into anything. I wondered if there was anyone that could advise me on who else I could get a 2nd opinion from near me. I want someone that has treated many of these- not a few. I pray I can keep my hearing- and that it comes back to normal soon.  I want experience. Any advice is welcome!!! Thank you!

ANSydney

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Re: Recently diagnosed with 2.4cm in Alabama. Need advice.
« Reply #1 on: September 24, 2017, 05:35:20 am »
Artteacher, welcome to the club that nobody wants to be a member of, but everyone is friendly.

Did you say you also have Meneire's disease or not?

Artteacher

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Re: Recently diagnosed with 2.4cm in Alabama. Need advice.
« Reply #2 on: September 24, 2017, 07:18:47 am »
Yes. I do. At least the ENT thought so. She did say that once the AN was taken out, maybe a lot of my symptoms we thought were Meniere's would go away. My hearing tests and the ice water test, etc showed I did. 

alabamajane

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Re: Recently diagnosed with 2.4cm in Alabama. Need advice.
« Reply #3 on: September 24, 2017, 08:04:10 am »
Hi Artteacher and welcome!,,
Sorry for your health issues on top of family issues,, that's tough,, you have truly had much stress lately,, I hope some of that eases for you.

I'm not sure who you are seeing in B'ham,, but I saw ( and had surgery with)  Dr McGrew first,,  and Dr Fisher ( the neurosurgeon) as a team  at UAB. Both are excellent doctors with experience in AN treatment. There are a couple of other doctors in B'ham that folks have seen,, but I have not talked with anyone who had theirs treated by them.

I don't personally know of any other doctors in the State that have extensive surgical experience with these tumors. If you are interested in radiation treatment,, Mobile has a Cyberknife machine at USA Mitchell Cancer Center. I attended a presentation by them that was impressive and informative.

Vanderbilt in Nashville would be another place that has excellent doctors and reputation for treatment of ANs. Several folks on here have used them. That would be a good second opinion if you want to travel.
There are several doctors who will offer phone consultation after you send in a copy of your MRI to them. One is House Clinic in Los Angeles. I did that and got wonderful advice from a doctor over the phone but did not have surgery there.

Hope this helps give you a starting place for your research and decision making. The symptoms can make daily life very difficult but you have time to make a decision on treatment. Listen to your doctor's advice as we on here are not medical professionals just folks who have dealt with or are dealing with ANs,,,

Good luck,, if you would like to talk or have questions,, feel free to PM me ,, I've talked to several folks over the years,, I had my surgery in 2011,,,

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

Artteacher

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Re: Recently diagnosed with 2.4cm in Alabama. Need advice.
« Reply #4 on: September 24, 2017, 08:49:16 am »
Thank you so much.  I am very anxious about the treatment, costs, time away from work for me and my hubby. A lot to think about. This forum has helped already.

ANSydney

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Re: Recently diagnosed with 2.4cm in Alabama. Need advice.
« Reply #5 on: September 24, 2017, 05:04:21 pm »
Is the suspected Meneire's disease affecting the the hearing on the AN side? What is your hearing loss and are low or high frequencies affected?  Are your symptoms constant or do they come and go? The following may be of interest https://www.ncbi.nlm.nih.gov/pubmed/10908964





Artteacher

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Re: Recently diagnosed with 2.4cm in Alabama. Need advice.
« Reply #6 on: September 24, 2017, 10:42:21 pm »
Well, I was diagnosed In the spring with Meneire's. All the test indicated that I have it. They said my right side was most affected and it shows up on the opposite (left) side. At that time, they tested my hearing and I had only a small amount of hearing loss that is very consistent with Meneire's- basically one time that drops. However, my dizziness was daily- some days a little, some days worse. Meneire's has more episodes I think and not so constant. Looking back, I've had pressure on my left side and a fullness feeling in that ear for years. I just thought it was my sinuses and fluid in my ear. I think that was this AN all along. So, after suddenly waking up two weeks ago and couldn't hear, I ran to The ENT. The retested my hearing and I can't hear the higher tones. Some lower tones are coming through. Adding to that the ringing and they sent me for the MRI. So, I'm not sure about the Meneire's. I guess I will find out after treatment for the AN if I even have Meneire's or not.

ANSydney

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Re: Recently diagnosed with 2.4cm in Alabama. Need advice.
« Reply #7 on: September 25, 2017, 01:52:49 am »
Rather than treatment to then find out if you also have Meneire's, I would do it the other way around.

High frequency hearing loss is indicative of an AN, while low frequency hearing loss is indicative of Meneire's ( https://en.wikipedia.org/wiki/M%C3%A9ni%C3%A8re%27s_disease )

I'm having trouble determining which side the Meneire's on and the side that the AN is on. The following article may be applicable and pertinent; https://www.karger.com/Article/Abstract/108109 (click on the First Page Preview to read more, or spend the $39 to see the full article).

AN surgery destroys hearing in most cases and radiosurgery does so over time. Plenty of references in the forum regarding hearing preservation.

Artteacher

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Re: Recently diagnosed with 2.4cm in Alabama. Need advice.
« Reply #8 on: September 25, 2017, 05:43:52 am »
I think you are right. I know the AN is on the left side. I wouldn't be surprised if most of my symptoms were just the AN and may not be Meneire's.
Does surgery always destroy hearing? I guess that's where I am at. I don't want to rush into surgery even if the Dr thinks that's best. I've had many surgeries in my life so I can handle having one- just afraid of the end results of this type.
Very interesting articles.  Thank you! From my understanding, my MD presented on the right side but affects the left side. Explained as the right side brain controls the left/left side brain controls the right. So both MD and AN are affecting the left.
« Last Edit: September 25, 2017, 05:51:48 am by Artteacher »

alabamajane

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Re: Recently diagnosed with 2.4cm in Alabama. Need advice.
« Reply #9 on: September 25, 2017, 09:21:26 am »
 Meneire's  disease so mimics the symptoms of an AN that it is often the initial diagnosis for many ENTs who are not very familiar with ANs. It may be that your symptoms are due to the AN.

I think you will have much more valuable info once you see or get phone consults with doctors who have considerable experience with ANs.

Surgery does not always cause hearing loss. Translab procedure does but the other two types do not necessarily. I just read a post from someone who had Cyberknife and still has hearing 71/2 yrs later.

One thing to keep in mind with ANs is that every  experience is different . Every patient tolerates their symptoms differently. There are no guarantees with these tumors.
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

Artteacher

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Re: Recently diagnosed with 2.4cm in Alabama. Need advice.
« Reply #10 on: September 25, 2017, 10:08:34 am »
Thank you. That gives me hope.

mac84

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Re: Recently diagnosed with 2.4cm in Alabama. Need advice.
« Reply #11 on: October 02, 2017, 08:24:53 am »
Artteacher, welcome....I'm in Central AL also and will simply echo Alabama Jane's recommendation of Vanderbilt. I see Dr. Rivas there every April and am on the Watch and Wait. They do a thorough job of making sure things are stable. I have tinnitus but no other issues so far....mine is much smaller than yours. Good luck!
Diagnosed 10/13/14 with 1.4cm AN left side
1st Consult with Vanderbilt on 11/5/14
W/W.  Next MRI in April 2015 at Vanderbilt.
April 2015 MRI showed no growth - moving to 1 year!
April 2016 showed no growth - still 1.46cm. Next MRI 4/17.
4/17: No growth! MRI in 4/18! W/W

ColleenH

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  • Do not fear, for I am with you. Isaiah 41:10
Re: Recently diagnosed with 2.4cm in Alabama. Need advice.
« Reply #12 on: October 03, 2017, 01:36:28 pm »
It is always good to get a second opinion. I love Vanderbilt. They do far more AN surgeries than UAB, but I have seen several successful done there. How long will you be out of work? Well, that is a person to person thing, but generally 4-8 weeks. I was about 10 but I had some complications and a couple extra surgeries. Take your time, do your research and find peace with your decision. This forum is wonderful in learning all you can. ;D
Surgery date 5/2/2017 @ Vanderbilt Translab approach with Drs. Haynes & Chambless. Love them :)
Success: removed 99.9% of tumor; no facial issues
Readmitted on 5/7/17 for CFL, had a lumbar drain inserted; CFL repair surgery on 5/14/17 and sprung on 5/15/17.

Artteacher

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Re: Recently diagnosed with 2.4cm in Alabama. Need advice.
« Reply #13 on: October 14, 2017, 03:13:55 am »
Thank you.  I was told I would be out of work around 6 weeks.  I'm still debating on Dr's. I will be seeing Dr Swaid soon in Birmingham.  I had a consult on the phone with a Dr Slattery from the House Clinic. That left me more worried about surgery and where to have it than before.

alabamajane

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Re: Recently diagnosed with 2.4cm in Alabama. Need advice.
« Reply #14 on: October 14, 2017, 06:02:58 am »
I also had a phone consult with Dr Slattery. He was very helpful and concerned. Even called me back in a year to see if I had had treatment. I would have liked to have gone out there but was not able. I believe he would have been a good choice for treatment.

One thing I would say is to be sure that if you have surgery that it is done by a team of doctors, not just one doctor. I’m not personally familiar with Dr Swaid, but just ask him who will perform the surgery with him. I say this because when I was first diagnosed I didn’t realize that it took a team of doctors for this surgery and the first guy I saw was going to do it himself. Thankfully I didn’t like him anyway but  It wasn’t until I went to a support group meeting that I found out it should be a team of doctors anyway,,,

Good luck with your appointment,,
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