New Facial Nerve Schwannoma diagnosis

[mrwva17]

Just wanted to say hello to everyone here. I have been lurking and reading for a while. In a way I wish I had an AN so that I "fit in" better. :-)

I was diagnosed on 1/12/2017 with a 6mm enhancing tumor on MRI with contrast. Since that time I have been to two neurosurgeons with another two appointments scheduled in the next 4 weeks.

Both surgeons so far have advised to watch and wait so here I am.

I must say that the hardest part for me is that this is an incidental finding and I do not have any of the "typical" symptoms of a FNS but more of the VS flavor. And knowing that I have been advised to watch and wait does nothing to help with the symptoms that I have every day and are left untreated.

So having said that, are there any suggestions for combating the endless feelings of nausea and imbalance that are associated with AN/VS/FNS?

Any suggestions are much appreciated. Thank you.

[ANSydney]

Hi mrwva17. Welcome to the club that nobody wants to be a member of, but everyone's friendly. The facial nerve and the vestibulocochlear nerves are the two cranial nerves that pass through the inner ear. So, getting similar symptoms to an AN seems reasonable.

For an AN, a 6 mm tumor  is small. Presumably the same for a facial nerve. One problem is that the nerve the tumor is growing on is usually cut in surgery. Not so bad for a vestibular nerve; out of the question for a facial nerve. However, with intraoperative nerve monitoring and incomplete resection, I would imagine that a facial nerve can be addressed. another possibility is radiosurgery.

I'm glad that you've been recommended wait and watch. From why I've read, ANs are diagnosed at about 1 ~ 2 per 100,000 per year, but that autopsies have the prevalence at much higher, with one source stating almost 1:100. So, prevalent, but not often detected.

I suspect nausea and imbalance will reduce as the other ear vestibular system takes over the function. Do you have any other symptoms? Are the symptoms you have bad?

[mrwva17]

Thanks for the welcome! I know that everyone is friendly from lurking for a while. 

My symptoms are more of an anxious nature I think. What I mean to say is that I am already diagnosed with Anxiety and am under medication for it even at the smallest dose possible. I do not want to depend on medication to carry me through this and other trials and tribulations.

In going over my symptoms, they go back many years from a vertigo perspective. Trying not to go into too much back story I never really thought that I had vertigo in the classic sense. I have never felt as if the world were spinning around me. I just felt like I was "off." The symptoms like that would persist for a week or so and then clear up.

I am 46 now and at the age of 7 had a case of meningitis that sent me to the hospital. I had tubes placed in my ears at that time. I had always had bad ear aches. My neurotologist believes that my hearing started to decline at that time. By the time I was 18 I enlisted into the US Army and had to take the hearing test twice because of problems with the first test administered. So I took a second one and was in. I have not had a hearing test from that time until last week when I met with a Neurotologist.

I have significant hearing loss in the left side and near normal hearing on the right. My word comprehension is fine so communication is not an issue at all.

So my current symptoms at this time are: imbalance, tinnutis (minor and have had it for many years and it does not bother me), nausea, feelings of weakness although physical strength is not a problem, (I hope that makes sense. I feel weak but yet I am strong enough to do anything I need to do physically.)

I have symptoms that have come about AFTER I received my diagnosis on my MRI and scouring the internet. Those are feelings of fullness in my ears, regular headaches, burning and tingling sensations in my head and my extremities. I think that all of those are my anxiety in overdrive from having read so much and being so consumed with my new "friend."

I have been hoping that my tiny brain would start to compensate for my imbalance soon so that I could get over the daily feelings of blah.

Thanks again for the welcome.

[Blw]

How did you know that you have a facial nerve tumor? Did they run the battery of tests? There is one test in particular, can't recall it, perhaps ENoG. If it truly is a FNS or suspected, few people would recommend surgery. You don't want to mess with that nerve. Because mine was FNS, radiation was an easy choice.

[Cheryl R]

When you start having facial symptoms.  Facial droop,eye issues.    My surgeon said you can't say 100% for sure till they get in there with surgery.                     Cheryl R

[researcher]

Mrwva17,

Some of your symptoms can be explained by your anxiety. I was diagnosed with it and given a prescription. It has helped. Like you, I do not want to take any medicine but I am willing to do so for a few months. Funny thing, one of the side effects of the medication is dizziness!

You might also be feeling disequilibrium. Definition: is a sensation of impending fall or of the need to obtain external assistance for proper locomotion.
I tell people I am dizzy but I tell the doctor I think I have disequilibrium.

I see that you were diagnosed recently. All your research is a good thing but it scares a person. Totally normal. Hopefully you will start to feel better emotionally as time goes on. So glad that you have found this community. It was such a help for me when I was diagnosed. I had surgery over a year ago.

Here's something fun:
https://www.youtube.com/watch?v=52yucjy_Q8s
It's a song called My Schwannoma. I bet you will know the tune. 

Take care,
Researcher

[mrwva17]

Thanks for all of the information everyone. I just came home from meeting with Dr. Jason Sheehan at UVA. He also said I am alright to wait six months for another MRI, but he seems to think it WILL require intervention at some point and in his opinion, the sooner the better. His official diagnosis is a Facial Nerve Schwannoma even though I am not typically symptomatic at this time. That is strictly based on the MRI results I received closer to home that revealed the tumor in the first place.

I have a meeting with JHU later in February for another opinion. With what I have read online and here, Gamma Knife appears to be the treatment of choice in order to save facial function.

To be totally honest with everyone, my fear that this is NOT benign but is a malignant cancer has me torn in pieces. Certainly I can understand that it is my anxiety taking control but if I could just have a sense of peace that this is benign, I think the overall experience would be so much better. I mean, yes, I have a tumor, but there is information out there that tells me that as uncommon as it is, there is hope. I just cannot cope with the fact that it could be aggressive or malignant even after review from three surgeons and all telling me that it is most likely benign.

I am a Christian who has totally put my eternal soul in God's hands but this weakness I feel toward this tumor is so painful. I do not question my eternal home, but I question the strength of MY faith in God that before now, I was totally confident of.

Sorry to rant and thanks again for all the replies. It helps.

[mrwva17]

Just a quick update. I traveled to visit Dr. Rafael Tamargo at Johns Hopkins Hospital today since I had already set up the appointment right after initial diagnosis.

As the other surgeons (invasive and GK/CK) have recommended, he advised me not to have any treatment at this time and to follow up with another MRI in 6 months. He was very up front about the risks of surgery and the evidence for waiting to see how my tumor reacts at the next MRI. There simply is no need to rush in "his" judgment. He reiterated that it is very small. "He" feels that the measurements are somewhat smaller than the initial radiologists report, but regardless, he told me I have time.

I appreciated the fact that he counseled against any intervention at this time. After speaking to him for a while I asked about Gamma Knife or CK. He mentioned that his personal opinion is that CK is a better option, but then again, that was only his opinion (which I did ask for) and I know there are many here that have had very successful outcomes with GK.

All that aside, it was good to hear that another surgeon has recommended the watch and wait approach.

I want to thank everyone again on this forum for the opinions and suggestions that they have given me either in the forum or via personal message. I am very grateful for all of it. It has helped one high anxiety person (ME) see more clearly through this process. Thank you!

[ANSydney]

mrwva17, good to hear that two doctors both recommended observation. This will give you time to get a followup MRI and learn about its growth pattern. And research schwannomas.

You seemed to be concerned that the tumor may be malignant. Has any doctors suggested that it might be?

[caryawilson]

Honestly, don't waste too much energy on the question if the tumor is malignant,  While it's theoretically possible, these tumors are almost always benign and I don't recall of a case where this was misdiagnosed.   A malignant tumor tends to be a rougher shape and will have numerous modules 

I know it's difficult to know something is in your brain, but do your best to deal with the facts as known today.  It will drive you crazy to imagine every possible scenario.  You have seen a couple world class doctors, and if they have NOT expressed any concerns, then you should sleep well at night.

[mrwva17]

ANSydney, no one has suggested that it is malignant. That was an initial fear once diagnosed and that hung with me for a couple of weeks. It was so hard for me to try to come to grips with the fact I have a brain tumor so I was of course thinking the very worst.

Cary, Thankfully I am no longer hypersensitive to that possibility. Each of the last two surgeon's have gone to good length allaying  (sp?) my fear of that scenario. So I am moving on...

I am sleeping better each night and am thankful for the information given to me by the ANA and the folks on this forum including both of you. Thanks!

[mrwva17]

Well, final doctor visit is now complete. Flew up to see Dr. McKenna at Mass Eye and Ear/MGH over the weekend. He is in agreement with every other doctor thus far. Wait and watch until August (6 months from baseline) and then proceed from there.

So after seeing 6 doctors now, I am somewhat conflicted as to what road to take IF (and I know it may not happen) there is growth in these next few months. None of the doctors I have seen have recommended a surgical treatment. Matter of fact, each one discouraged surgical treatment. This may sound strange but I am somewhat disappointed because I truly am not convinced radiation treatment is what I want because of my concern of long term effects of radiation. But now, it seems as if each one would recommend different type of radiation for treatment. Sheehan at UVA does Gamma Knife. Tamargo at JHU recommends Cyber Knife, and McKenna at MEEI prefers I go for Proton Beam at MGH.

One big surprise,in my opinion, was that Dr. McKenna told me that the risk of long term effects of radiation were much smaller than the risks of surgical intervention. He specifically told my wife and I that research shows that 1 in 500 people will die from surgical intervention for an AN/VS/FN. I was somewhat taken aback because I "thought" that the risks were much smaller for mortality due to surgical advances in the recent years. I know for sure that risks of facial paralysis, CSF leak, and Hydrocephalus exist as well as headaches and so forth. And then he mentioned that the risks of long terms effects of radiation were much, much less. He was the first surgeon I have spoken to that has addressed these risks using these numbers.

All that being said, I will wait for my August MRI and see what happens. Thanks to all for the responses I have had since I joined the forum. Wishing everyone the best.

Mike

[Citiview]

Having consensus with the surgeons makes the decision making easier. I'm impressed with the amount of doctors you've spoken to in a short amount of time. Dr. McKenna spoke at a support group in Boston recently and he mentioned that there were only about 20 cases of malignant transformation reported in the literature. That talk is on the ANA website if you're interested.
I think the biggest concern with radiation is how long will it control growth?
If it only controls growth for ten years or whatever then what happens after that?

[ANSydney]

I'm afraid mortality following surgery for ANs is more like 1 in 200 ( https://academic.oup.com/neuro-oncology/article/13/11/1252/1303667/Morbidity-and-mortality-following-acoustic-neuroma and http://journals.lww.com/otology-neurotology/Abstract/publishahead/Operative_Mortality_Rates_of_Acoustic_Neuroma.97076.aspx (click print to see the abstract)). And this figure would be for centers of excellence. If you're fit, mortality rates would be better than average.

The chances of malignant transformation are widely different in their reporting. Part of this is the duration of observation and lack of information beyond 20 years. From what I can garther, the chance of a malignant transformation is about 1 in 1000.

A 6 mm tumor is small. Watch and wait is a good strategy.

I'm not sure if I've asked this question, but how long have you had symptoms (the longer the better). Indications are that tumor growth rates are not linear, with tumors growing most in the first year after symptoms.

[Citiview]

A lot of great research is being done at MGH, Mass Eye and Ear, Brigham and MIT for hearing in general and specifically acoustic neuroma. There have been a few press releases recently. Very interesting. Hopefully there might be new interventions in the future that aren't radiation or surgical.