ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: Zan on June 27, 2017, 04:14:32 pm
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Last Tuesday I was diagnosed with a Schwannoma. At first I thought it was an AN, but after getting my MRI and reading the report, I realized that it is a Facial Nerve Schwannoma. It actually makes more sense because I have no hearing loss (confirmed today at the ENT).
It has been a little harder to research since FNS are more unusual. My only real symptom is facial weakness/partial paralysis and dry eye. My tumor is approx. 10mm.
Has anyone had a similar experience? Do they still advise W&W with a small FNS if there is some facial paralysis already? Is radiation an option for this sort of thing? Or is surgery more common? I have an appointment with a neurosurgeon tomorrow (Dr. Chu at Cedar Sinai) and a second option on Friday (Dr. Schwartz at House) but I always like to have more facts and understanding when I walk in.
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Hello, there is some information: Schwannoma and AN are the same medical condition, tumors deriving from Schwann cells. Since yours is causing deficits, it needs to be treated, at that size, radiation probably will be less invasive option. Good luck with your consultations. Please, share the results!
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Zan, how do YOU know it's a facial schwannoma? If the diagnosis is from symptoms, this is not necessarily reliable. If it's from an MRI, I want to know what technique was used to ascertain this (I hear it can not be ascertained from MRI, but would love it if it was).
When I asked an ENT whether if my AN was growing on the superior or inferior vestibular branch of the vestibulocochlear nerve, he said it was the inferior. When I asked how he knew this, he stated that's where most grow. That is, statistics are used to ascertain your specific case. At least the radiosurgeon said its not possible to tell.
Facial nerves are far more precarious than vestibulocochlear. A severed vestibular nerve just makes your brain use the other ear (and eyesight and muscular proprioception). You can learn to perform with just one vestibular system (or one hearing ear). If a facial nerve is severed, its a much more serious condition - you can't even close your eyelid, therefore will get corneal damage and blindness, without ongoing proper care.
I would talk to someone who has had a facial schwannoma that was radiated over ten years ago. How are they going? Is this acceptable to you?
Finally, you can observe for a period and take objective notes of your symptom changes and MRIs every 6 months.
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I was told by my neurotologist that you do not know for sure where it is until go in. With having symptoms now I think treatment means sooner than later. I did have one as have NF2 and had 2 ANs and the one facial neuroma over time. You do need a dr very familiar with doing them. Mine was 2 cm and was severed during surgery with a nerve from by the ear put in at the same time. I do not have complete movement back but fairly good. There is a chance it is just at a location on another nerve but pushing on the facial nerve too. Many drs do try to get as much as can of the tumor but may leave a small amount to preserve the nerve. Let us know what you do find out Fri. Cheryl R
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Thanks for the responses.
ANSydney, there are a few reasons that I think this is a FNS. Here they are (all this said, I might be wrong).
Quoting from my MRI report
"There is a mass which is identified along the course of the left seventh cranial nerve which extends into the subdural space of the middle cranial fossa. The majority of the mass sits at the level of the genu and extends into the subdural space measuring 10mm. However there is additional subtle abnormal signal and enhancement involving the distal left seventh cranial nerve within the inta canalicular portion. There is abnormal enhancement of the genu and proximal portion of the tympanic section of the nerve. The descending portion of the facial nerve does not abnormally enhances. There is no involvement of the inner ear structures and the cochlea, vestibule and semicircular canals are preserved. The right neurovascular bundle is normal. The cochlea, vestibule, semicircular canals are of normal signal intensity without enhancement. Findings would be most consistent with the 7th cranial nerve schwannoma/neuroma. Additional consideration does include hemangioma."
I'll be honest, I don't know what most of that means, but it seems clear that the inner ear is not involved and that doctor thinks it is a FNS. That said, I am sure she (like almost everyone) is not an expert in this specific diagnosis.
My hearing tests came back basically normal, with mild high frequency loss in both ears.
I also have now met with the first Neurosurgeon. in appointment report he wrote " Neoplasm of uncertain behavior of facial nerve".
I googled the term "neoplasm of uncertain behavior" and I found that term basically means any tumor that has not been biopsied.
I have an appointment with Dr. Schwartz at House tomorrow and I'll see what he says.
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Given the thoroughness of your MRI report and the multiple visual indicators cited, I would tend to agree that the diagnosis would have basis. I know nothing about facial schwannomas, except damaging the facial nerve is more serious than damaging the vestibulocochlear nerve.
As voron999 said, there is no "Undo" button feature with these things so spend time now researching and talking to doctors. The alternative is spending many times as much time managing any poor outcomes. No matter what anyone says, one thing is, there is no need to rush (unless there is MRI evidence of rapid growth or unbearable symptoms).
In the wise words of Dr Michael McKenna, in the video at https://www.anausa.org/resources/videos/support-group-video-library , “The best treatment is no treatment, if you can do it”. I'm not sure if this also applies to facial schwannomas.
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Zan, from http://emedicine.medscape.com/article/846352-treatment :
In patients without facial dysfunction, a conservative strategy consisting of clinical and radiological observation should be considered as a treatment option. When facial nerve paralysis has developed to a House-Brackmann grade of more than III, an immediate operation is recommended to obtain a good postoperative facial functional recovery. On the other side of this debate, some experts report early schwannoma resection with facial nerve preservation. Little data have been published on the use of radiotherapy to treat facial nerve tumors.
From http://journals.sagepub.com/doi/abs/10.1177/000348940111001106?journalCode=aora :
Facial nerve schwannomas are slow-growing tumors that may involve any part of the facial nerve. When they present with moderate to total facial palsy, complete resection is clearly indicated. However, in cases with mild or no facial dysfunction, the best course of treatment is less obvious. A series of 22 patients with facial nerve schwannoma is presented, of whom 12 underwent definitive excision and 10 were managed more conservatively. The best postoperative facial function in the group who had tumor removal was a House-Brackmann grade III, while 8 of the conservatively treated group had normal facial function up to 10 years after presentation. As well, no significant tumor growth was noted on serial radiologic imaging of those being observed. Delaying surgical resection of facial nerve schwannomas may allow patients to retain normal facial function indefinitely.
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thank you so much for posting that. It is very interesting.
I found it particularly interesting that the article that seemed to advocate a more surgical approach was published later than the article that advocated a conservative approach (which I assume is W&W or radiation). Usually, when I find articles on AN, radiation is advocated more in later articles.
I am going to print these out and take them to my appointment tomorrow.
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I met with Dr. Schwartz at House today. I loved him!! He said that it is too early to tell if it is a FNS. The other option is a Facial Nerve hemangioma. He said that it is absolutely not an AN. I need to have a CT scan before they can make a final diagnosis. It is interesting to note that hemangiomas do not respond well to radiation and if that is my diagnosis, the Neurosurgeon at Cedars would have done a pointless and possibly harmful procedure.
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Hi Zan,
Just wanted to let you know that I had a Facial Nerve Tumor removed 25 years ago, it was large and at the time there wasn't as much information available as there is now so I went ahead with surgery. Unlike you I had severe hearing loss, hearing loss was first noticed during grade school testing. I had the surgery when I was 35. I was first diagnosised with an Acoustic Neumora because of the hearing loss but when checked out by a specialist they told me before surgery that it was a Facial Nerve Tumor. I do have to take good care of my eye as someone else mentioned, I unlike most can blink and close my eye 90%. All of us are the same in that we have or have had a tumor but that's where the similarities end. Jill
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Thanks Jill Marie.
t this point my eye is my biggest issue. Dr. Schwartz said that my facial paralysis is a high 2 on the HB scale. So, like you I can close my eye most of the way. I a can also close it all the way if I try.
The doctor also told me that the tumor has ruined my left eye's ability to make tears.
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Zan, what are you doing to protect your eye? There are lots of posts in the eye issues section that you can read. I wear a soft daily contact lens and use eye ointment. There are several people that have a hard contact lens called the scleral lens, some use ointment others use drops. That's what I meant by saying that we are all different in my last post. How long we've had the tumor, side affects post treatment, how we have the tumor removed, post tumor side effects, there we all differ. Good luck in finding what is best for you. Jill
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Zan, if the AN specialists have not recommended it, see an ophthalmologist anyway. Learn how to protect your eye and have your cornea examined regularly. If you have incomplete lid closure while sleeping, exposure issues can arise quickly, they did in my case. The loss of tear production adds to the lid problem. A silicon plug can block your tear duct preventing drainage which keeps your eye lubricated. The plug process is quick and can be reversed just as easily, mine was removed last visit as my lid closure is back to normal now. At least use lubricating drops. Good luck
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Thanks LakeErie and Jill Marie
Is some ways this has opened a whole new world for me as far a eye care. I have been dealing with this for about 18 months and the only option I was given was Restsis and over the counter drops. The Resasis did not work and there were many days that I could barely make it through the work day.
The neurosurgeon gave me the name of some gel that I tried for the first time last night. It, of course, made my vision blurry for the rest of the night, but it was so soothing and felt amazing. I also might look into some lenses.
I think I will also make an appointment with an ophthalmologist. Good idea.
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What is the name of the gel?
Feline
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It's called Refresh Lacri-Lube. It is over the counter, but my pharmacy had to order it because they did not carry it.
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I had my CT scan today and I actually don't have a facial nerve schwannoma. I have a facial nerve Hemangioma. Apparently, it is even more rare and it does not respond to radiation.
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Is the need to treat a hemangioma more or less than a schwannoma? Does surgery for a hemangioma have better outcomes than for a schwannoma?
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Did you see in the news that Maria Menounos had a golf ball size tumor removed successfully. It was impacting her facial nerve. You can find the story in five seconds with a quick search
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As far as I know, there is a greater possibility the the facial nerve can be saved in surgery, although it is still not guaranteed. I also think that they might go in for surgery a little faster since there are some studies to show that the nerve does best when the surgery is performed sooner rather than latter. I guess I will find out more at my appointment on the 21st
I did hear about Maria. Someone at work told me yesterday.
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Zan, take a look at studies yourself. A surgeon may only "see" the ones that are favorable to (immediate) surgery. If it's anything like an AN, there are varying studies.
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Zan
The reason I mentioned the Maria Menounos story is I mistakenly thought it was the same kind of tumor as yours. I also thought it was an inspirational story.
Good luck with everything.