Facial Nerve Schwannoma - Help wanted

[chanc93]

Hey everyone, I was just diagnosed this month with a Facial Nerve Schwannoma. I started to had symptoms of vertigo in November 2015. I had about 8 cases of vertigo from November til February 2016 but all these instances happened when I was tired and I didn't get enough rest. I thought that was my body just telling me I was tired. However, sometime in late June 2016 I suddenly noticed I the hearing in my left ear significantly decreased. I was put on prednisone for a while and I was going to go in for an injection but an ENT did a tuning fork test on me and we came to the conclusion I had conductive hearing loss. So I got a CT scan and an MRI and the radiologist said I had a facial nerve schwannoma.

So I just went to the House Ear Clinic and I saw Dr. Wilkinson and he said if I got surgery, I would definitely have facial paralysis because the schwannoma is close to my facial nerves, unfortunately. On the bright side, however, I haven't experienced any facial weakness on the left side so Dr. Wilkinson recommended I get radiotherapy and go through cyber knife or gamma knife. That way, the rest of my hearing would be preserved and the tumor wouldn't spread and do any damage to my facial nerves and I would preserve facial movement.

He also said I can wait 4-6 months to get another MRI and to see how fast the tumor is growing before getting the radiotherapy. However, I am afraid of waiting because I don't want to experience any facial weakness in that time period. But on the other hand, it would be useful to document how fast the tumor is growing and maybe my tumor will maybe even stop growing. Maybe I won't even need radiotherapy if it, by some chance, stops growing.

So I was just wondering if anyone had any insight on my issue. I was considering going through radiotherapy soon just because I don't want the tumor to spread even more and to lose any facial function as I wait. Of course, I understand you guys aren't doctors but if you had any suggestions to help me think of what to do that would be greatly appreciated.

Thanks so much.

EDIT: I am 23 years old, and I'm not sure how big my tumor is I think my MRI mentioned 9mm x 8mm but when the doctor showed me the MRI it seemed much bigger than that... but I'll ask next time.

[UpstateNY]

chanc93,

The decision about when to get treatment is a difficult one, since nobody can predict what will happen.  It really is a personal decision.  You don't mention your age or tumor size, since they may have some bearing, but I would suggest you consult with Dr. Chang at Stanford (Cyber Knife), Dr. Lunsford at UPMC (Gamma Knife), and/or Dr. Kondziolka at NYU (Gamma Knife).  They all give phone consultations and could help provide guidance.

If you decide to wait, another consideration might be a MRI in 3 months to gauge the growth as opposed to waiting 4-6 months.

I wish you luck with your decision.

[v357139]

Chanc93,
If you are considering radiosurgery, I would definitely consult with the 3 doctors mentioned by the previous post.  They are tops in radiosurgery, and you want to top.  Keep in mind radiosurgery has very good tumor control rates, but not 100%.  If surgery is required after radiosurgery, it can be more difficult.  Just something to consider.

You might also get opinions from another very, very experienced surgeon or two.  You may get different opinions on how to proceed.  There are definitely differences with different doctors.  Keep us posted.
Rich

[mcrue]

Hi chanc93,

In addition to Chang, Lunsford, and Kondziolka, depending on your insurance coverage, you may also consider contacting Dr. Jason Sheehan at the University of Virginia. He has excellent outcomes with Gamma Knife and offers free phone consultations. Also, the team at Wake Forest in North Carolina is most excellent. Do your research.

Speaking of the House Ear Clinic in Los Angeles, Dr. Schwartz does both Gamma Knife and microsurgery. He does free phone consultations as well, and would be an excellent choice for a second opinion.

Naturally, I understand your top priority is to avoid facial nerve damage due to microsurgery, which you were told would in your case would be virtually a 100% certainty. That must be a very frightening position to be in.

Neither microsurgery or radiosurgery is 100%, but obviously given your unique circumstances, I fully agree with you and Dr. Wilkinson that radiosurgery would most definitely be the proper route to take.

Even when they "get it all out" with microsurgery, I can't tell you how many times I've read of regrowth on this forum. You have to consider all the pros-and-cons for each procedure and tailor it to your unique case.

Best of luck with your journey.

[Blw]

I was diagnosed with that, though it is not as cut and dried as it sounds. Most tumors are not on the facial nerve, but many can impact the nerve function. You should get a full work up at an ear clinic, I think the key test is an ENOG test. Having said that, I would strongly suggest talking to Lunsford at Pitt. Gamma knife has fantastic outcomes for facial nerve schwannomas, and Lunsford is the world expert. Because of quality of life issues for facial nerve damage, you really don't want to mess with it-- do lots of research. However, I would not wait on a facial nerve schwannoma because facial nerve symptoms are quite disconcerting and generally require you to do something--steroids, or get treatment. They also can involve a lot of functions--muscle tone, blinking, tongue sensation, mouth numbnes, etc. While it can be really troubling to read up on, the outcomes I think are now excellent for radiation, and the House doctors have also claimed to have very good results, though they would be the only surgeons I would use. I think, however, surgery may actually leave some of the tumor behind, which will either die, or can be irradiated in the future if they reactivate. That might be one con of radiation as a first choice, what to do if it doesn't work. However, I have seen publications that claim you can radiate again.

[mcrue]

Blw,

You had the same diagnosis and went to Dr. Sheehan instead of Dr. Lunsford after consulting with both. Am I wrong?

[Blw]

Correct. I liked the service at UVA. Sheehan always emailed back immediately, night or day. He is an MD/PhD with a good publication record. We had friends in the area to stay with, and I think Sheehan actually trained with Lunsford. UVA is also something like the 6th oldest center in the US, and Sheehan is a colleague of a neurologist in San Antonio who I was referred to, so while Lunsford has the best reputation, Sheehan was a better fit and not much of a drop off. Plus, Charlottesville in January was more appealing than Pittsburgh.

[mcrue]

I always knew you were a wise man Blw.

[Blw]