Author Topic: Question for the forum  (Read 2650 times)

mrwva17

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Question for the forum
« on: February 02, 2017, 10:05:12 am »
I was recently diagnosed with a 4mm X 1.2cm FACIAL NERVE Schwannoma. The FNS diagnosis is from all three surgeons I have seen to date. My initial MRI was not as clear as all three surgeons would have hoped. (3mm slices in lieu of 1mm)

All three surgeons have recommended a wait and watch method and in 6 months they want a new MRI done at their location (UVA). I have no problem with any of that. My question or concern is that the first two surgeons I saw and recommended 6 months made it clear to me at time of meeting that a slow growth or no growth pattern at 6 months would be an indicator to wait another 6 months and repeat.

However, Dr. Jason Sheehan (Gamma Knife at UVA) made it clear to me that I would most likely need to make a decision at the end of 6 months. He did not elaborate why he was different from the other two in that regard. To be honest, I was in shock a little after hearing that but my anxiety is already tense (medicated also) and I forgot to ask him why he might have said that. I know that is my fault. I know his reputation is very good.

My current biggest complaint is dizziness and nausea. Both of which he said would NOT be alleviated with GK. I have read of many procedures on this forum where surgery has resulted in facial issues and my risk is even higher due to the location of the tumor. But to be perfectly honest, I am not sure a lifetime of feeling this way is worth more than the risk of surgical resection.

Any opinions from the forum would be appreciated and I know that there are no doctors here so I know it will only be opinions.

I do have another meeting with a different hospital later in February.
4mm X 1.2cm at initial dx 1/17/17
Increasing balance issues since 6/17

sharonov

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Re: Question for the forum
« Reply #1 on: February 02, 2017, 01:21:44 pm »
Waiting to see if your tumor is slow-or-no growth is always the recommended first option.  If your tumor is slow-or-no growth, then you can opt for a surgery that debulks it rather than trying to remove the whole thing.  This is what I opted for and have had excellent results (I'm 6 weeks out of surgery.)  I still have tumor on my facial nerve, but since it's slow growing I opted for that approach rather than taking the chance of complications.  I, too, was scared of what I read on this forum.

Obviously this was a very personal decision, and I waited over a decade to make it.  But I'm the kind of person who can put something like a tumor outside my mind and not be bothered by it.  My symptoms were loss of hearing in the affected ear and, eventually, trigeminal neuralgia when the tumor grew just enough to press on the nerve.  But the pain became unbearable before I went in.  If I had nausea and dizziness that was truly debilitating, I may have done something much sooner.  How bad are your symptoms?

Over the years I've read and posted on this forum, I kept reading the names Dr Friedman and Dr. Schwarz and the House Clinic.  They do more AN surgeries than virtually anywhere else.  If I were you, I'd be sure to send my MRI to them for a free phone consultation.  Dr. Schwartz is at the House Clinic and Dr. Rick Friedman is now at Keck Institute, which is part of USC.  I'd believe anything either of these guys say. 

mrwva17

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Re: Question for the forum
« Reply #2 on: February 02, 2017, 01:59:41 pm »
Thanks for the thoughts. To answer your question, I am dealing with symptoms daily. I can still walk straight and carry on daily activities but I have to focus much more on what used to be normal walking to make sure i stay in balance. I believe that the nausea I feel is more of a result of my dizziness all day ling as it normally only presents in the later hours of the day. I have had spells like these over the years but never to the length or extent that they are at now.

My greatest concern is that the since this is a Facial Nerve Schwannoma instead of the VS or AN, the facial nerve will almost or will be 100% impacted. Perhaps I am reading wrong but much of what I have read is my choice in 6 months really becomes whether I want to risk surgical complications and facial paralysis or deal with the imbalance and dizziness for the rest of my life.. To be honest, if I had to make the choice at this very moment I would risk the surgery.

Again, all of this is so very new to me being less than 3 weeks diagnosed and my anxiety is definitely in overdrive. Thanks again for the referrals and comments.

Oh, one last thing, was yours a definite FNS or the AN/VS?
4mm X 1.2cm at initial dx 1/17/17
Increasing balance issues since 6/17

ANSydney

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Re: Question for the forum
« Reply #3 on: February 02, 2017, 03:48:28 pm »
mrmva17, I wonder what is different in MRI appearance between a facial nerve schwannoma and a vestibular schwannoma. I also wonder, if they are similar, how many have been misdiagnosed and treated as the other.

I have only researched vestibular schwannomas,  so the following is in that context. A 0.4 x 1.2 cm tumor is small. If your symptoms are tolerable, waiting until confirmed tumor growth or symptoms become unbearable would be the way I go.

Given that is the facial nerve that is affected, the situation is more serious. You can get by without hearing and vestibular system on one side since the other ear can do the function. Full one sided facial paralysis is another story. Not being able to blink means eye drops and ointments all the time and taping the eyelid shut at night. Compare that to your current symptoms.

If your MRI was not as clear at 3 mm slices, why not get another done now using 1 mm slices (mine was done with 0.5 mm slices)? However, as part fo the follow up MRI would probably be just as good.

I totally agree with your surgeons who stated "slow growth or no growth pattern at 6 months would be an indicator to wait another 6 months and repeat". I welcome their conservative approach.

Dizziness and nausea sound like the facial nerve schwannoma (tumor) is pressing on the vestibular nerve. With time, the other ear compensates. (How long have you had the symptoms?) It's also possible to accelerate the vestibular function degradation on the affected side using chemical injections and therefore forcing the other side to take over the functions. In summary, I think it's possible to address the imbalance and dizziness without surgery, but this would have to be checked. Ask the specific question of doctors.

I'm sure there are ways to address anxiety using a psychiatrist. I address my anxiety by reading journal papers on acoustic neuromas, which produces a good feedback loop with regards to anxiety feeding action feeding anxiety, etc. And there has been a lot of reading.

alabamajane

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Re: Question for the forum
« Reply #4 on: February 02, 2017, 04:48:20 pm »
Welcome,,
I believe Sharonov has given you very sound advice,, especially considering she has just gone through treatment for a tumor on the facial nerve  after years of deciding,, I also believe sending a copy of your MRI to House and/or Keck centers is an outstanding idea. Their input is most valuable as a secondary opinion,, I sent mine to House and spoke with Dr Slattery several years ago. It was most comforting to hear he concurred with the treatment that had been recommended to me by others.

As far as the discrepancy of opinions  with regards to the timing of treatment or w&w,, many times, I believe, that is a personal preference of the individual doctor,, and of course Dr Sheehan would recommend going forth with the GK since that is his specialty,,, if symptoms are not very unbearable, it's not uncommon to go through several intervals of MRIs before getting treatment,, if it's indicated at all,, your symptoms will be your guide.

As Sharonov said,, the tumor can many times be debulked without disturbing the facial nerve and then IF it grows do the radiation. There are also many surgeries that can be preformed now if facial paralysis does occur. It isn't the end of the world. If nerve isn't severed, it has the ability to heal also.

Perhaps if you send the MRI out to one of the mentioned centers and get another opinion, it will help ease your anxiety some. Also you would have more info to take to your next appointment at the end of the month,,,
It's a hard journey for sure,, but you can do it!!
We all have,, let us know how it goes,,, we are here for you,,
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

mrwva17

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Re: Question for the forum
« Reply #5 on: February 02, 2017, 05:21:50 pm »
Sound advice from everyone. Thank you. I appreciate it very much. So glad I found this forum.
« Last Edit: February 02, 2017, 06:10:56 pm by mrwva17 »
4mm X 1.2cm at initial dx 1/17/17
Increasing balance issues since 6/17

 


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