Author Topic: Hello, I am new and have a question for anyone with a Facial Neuroma...  (Read 8807 times)

KimR

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Jesse,

I'm glad you're doing well. I did not realize nuking it would give major palsy versus getting it debulked. I have my appointment on June 30th with Dr. Chan at Michigan Ear Institute. My headaches are getting worse and so is my hearing in the affected ear.

Wish you the best,
Kim

neuroma_racer

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I did not realize nuking it would give major palsy versus getting it debulked.

when you think about how gamma knife, cyber knife, etc work, . . .
it creates a cloud of radiation, which is most intense in the center, and less intense at the periphery.

the radiation technologist maps out the pattern, of where to deliver the radiation, according to the shape and size of the tumor.
it would be, however, impossible to map out a hollow cloud . . .
i.e. radiating the tumor surrounding the nerve, but not the center part, which is the nerve itself.

radiating it would KILL the nerve, as the nerve would be in the center of the tumor, and hence - at the hottest, most-strongly radiated part of the cloud.

my tumor was completely within the internal auditory canal.
there is not a radiologist, or neurotologist, on the planet, who could differentiate AN from FN, based on the(MY) MRI.

aces,
jesse
mild hearing loss - 12/'09
left 4x5x7mm, intracannicular schwanomma
MIDDLE FOSSA surgery 4/'10, Dr John McElveen, et.al.
was actually a FACIAL NERVE NEUROMA
hearing worsened 4/'12 - Tumor quadrupled to 9x9x15mm
cyberknife 8/'12
1.5yr MRI shows shrinkage % 85% necrosis
LEFT hearing & tinnitus SUCK

Cheryl R

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Kim, My surgeon had said that he would not know till he got in there if I had the facial neuroma.      I have been very grateful that I had never had radiation on a previous AN as I am NF2 as then I would not ended up as well as I have either.     My FN was taken care of right then with it removed and the nerve graft from by the ear done.   Not perfect but look ok at rest.     My profile pic is how I look.                     I just got  new drivers license and was surprised how it was better now than previous ones.    My last license was in 2005 and I looked worse then.  FN surgery was in 2006.   
                                                   Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

KimR

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Thank you Jesse and Cheryl for letting me know what radiation does. This forum is a real blessing and I'm so glad I found it. I hope you are all doing well.

Kim

iluuvpups

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Hi.  I had surgery on May 27 with Dr. Kartush of Michigan Ear for what I thought was an AN.  When they got in there, they discovered that I actually had a facial neuroma.  So they took out all they could and then closed me up.  They said they left a pencil tip amount on the facial nerve.  I have mild facial paralysis now.  My eyebrow and lower lip don't move and my tear duct doesn't work.  I'm very conccerned about what I've read on here about radiation.  My doctor is recommending that I have gamma knife radiation for the rest of the tumor.  Are you saying that the radiation will destroy what's left of my facial nerve?
Original 1.75cm left-side AN diagnosed Feb 2010
Translab surgery May 27, 2010 with Drs. Kartush and Pieper of MEI
SSD on left side, some facial weakness, tear duct doesn't work
Found I actually had a facial neuroma during translab
Remaining 6mm facial neuroma - watch and wait

neuroma_racer

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Ask him how it WOULDN'T?

Now that comment is for someone with a small tumor completely within the internal auditory canal, with the tumor surrounding the nerve.
If you have some big chunk of tumor distant from the nerve, then nuke away.
I'm in doubt that is the case, or else why wouldn't they have removed that while they were in there??

Remember, a Schwann cell, which is what these tumors start out as, (both ANs and FNs), is like the plasitc insulation around a wire.
That is, in fact, what they do. They insulate tiny, consecutive sections of a nerve, which speeds message transmission down the nerve.
Now, returning to the visual model of a wire, - the insulation surrounds the wire. Is smack-dab TOUCHING the wire.

Jump back to my prior post in this thread describing the cloud of radiation created by a gamma knife, etc.
It is hottest at the center, and the energy gradually dissipates toward the periphery, as we approach the outer edge of the target (tumor).
Had I nuked my tumor, not knowing what it was, . . . The nerve ITSELF would have thus recieves the HIGHEST dose of radiation. AND DIED.

They can't program the radiation to kill one type of cell (tumor) and simultaneously spare a different type of cell (nerve).
They can only control WHAT revieves the radiation.

I am not only a patient treading these waters currently, but am an Emergency Medicine physician.
As such, I have a pretty good idea of what can and can't be done.
That being said, I am NOT a neurosurgeon, a neuro-otologist, a nuclear physicist, nor nuclear technician.

I would get a second and even third opinion, befre I let someone radiate my head if I were you.
I would demand a THOROUGH explanation of what is being radiated, and how the nerve won't be.

Nerve cells are fragile, and in the body, are the FIRST cells to DIE when deprived of oxygen.
Now I know that oxygen deprivation is NOT the mechanism by which stereotactic nuclear radiosurgery works; I only offer that up to emphasize how delicate neural tissue is.
FAT cells, which is basically what a Schwann cell is, (and hence these tumors) is a dumb, lazy, cell that doesn't do as much, and as such is more resiliant, and probably takes MORE radiation to kill, than a nerve cell.

Radiating a TRUE AN is one thing and sometimes still results in facial weakness or hearing loss.
Radiating a FN, at whose center is the facial nerve itself, seems ludicrous.

I may be mssing something, but doubt it.

I know I will NEVER get MINE radiated.
It was debulked to some degree.
It was unroofed to reduce pressure.
That is all for now.

If, down the road, I develop a troubling enough facial palsy, . . .
We go back in, excise the tumor, perform the nerve graft, and then that is the end of the story.
The palsy resolves to whatever degree it will resolve.
Move on.

Ask lots of questions, and get 2nd and 3rd opinions before you nuke that thing.
Make sure you talk to neuro-otologist, neurosurgeons, and nuclear
med physicians.
   For more cut and dried cases: you can generally anticipate the recommendation based on who you ask : a surgeon will want to cut it out of you, and a gamma knife doc will want to nuke it.

Be careful
make sure you understand WHY you are doing something.
Ask lots of questions.

Aces,
doc  
 

Btw
why in the world would you do anything now??
Wait a while it may be months before we see where the current FN defecits will settle out.

I was told it could be 15 to 35 years before I needed something else done, if ever

just my $0.02 worth
« Last Edit: June 28, 2010, 10:16:57 pm by neuroma_racer »
mild hearing loss - 12/'09
left 4x5x7mm, intracannicular schwanomma
MIDDLE FOSSA surgery 4/'10, Dr John McElveen, et.al.
was actually a FACIAL NERVE NEUROMA
hearing worsened 4/'12 - Tumor quadrupled to 9x9x15mm
cyberknife 8/'12
1.5yr MRI shows shrinkage % 85% necrosis
LEFT hearing & tinnitus SUCK

neuroma_racer

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Kim,
sorry for the thread hijack.
It's just her post with some suspect advice worried me
Jesse
mild hearing loss - 12/'09
left 4x5x7mm, intracannicular schwanomma
MIDDLE FOSSA surgery 4/'10, Dr John McElveen, et.al.
was actually a FACIAL NERVE NEUROMA
hearing worsened 4/'12 - Tumor quadrupled to 9x9x15mm
cyberknife 8/'12
1.5yr MRI shows shrinkage % 85% necrosis
LEFT hearing & tinnitus SUCK

yardtick

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Jesse,

I found your posting very informative, your explanation answered a lot of questions I had about radiation. 

Anne Marie
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

KimR

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It's ok Jesse. It's all very interesting to me.

I just came back from the Michigan Ear Institute where I saw Dr. Chan. She is questioning exactly how university of michigan came to
the conclusion back in 2003 that I have a facial neuroma. Anyway, my neuroma is right up against my brainstem now, but not pushing on it. I didn't know it was touching my brainstem so it's a bit frightening to find that out.  I had tests yesterday to check my hearing, balance and facial nerve. My balance and facial nerve tests came back fine but I have moderate hearing loss in my left ear and the noise that my brain picks up is abnormal. I don't remember the name of that test. I go back next month for a vemp test and then Dr. Chan will tell me what the plan will be. She says it depends on whether I have acoustic or facial neuroma but I thought that once it starts pressing against the brainstem, it's life threatening?

Denise S

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Was Dr. Chan a very young asian lady?   I was thinking she may have just been a resident there the 1st time I went almost 1 1/2 yrs. ago.  

I am not sure how much it matters if it is AN or FN, whereas when it is getting big enough to press on brainstem you want to try to get it out (or debulk it as much as possible).    Sound like the hearing one you had was the ABR, auditory brain response.   That sends the clicking noises to your brain and can monitor how much the actual inner ear can pick up.   That is the test that really helps determine how much the tumor may be affecting the auditory nerve.   (don't quote me on anything, but from what I remember).

Dr.  Pieper is the neurosurgeon who does all MEI surgical assisting and he does radiation for those interested.

Forgot to ask:   What type of surgical procdure did you have the 1st time? (Middle fossa, Retro???...assuming not translab since you still have some hearing).

Also, did Dr. Chan said how big the tumor might be now?   Your original post size didn't seem like that would be big enough to push on the brainstem yet due to smaller size.   Just wondering.......everyones situation is SOOOO different.   And depending on the angle of the MRI, etc. it makes it hard to predict for sure where it is sometimes.   

Wishing you the best!!
« Last Edit: July 02, 2010, 08:34:36 am by Denise S »
W&W 2 yrs. (due to watching other brain tumor: it's stable)
Left AN:  1.2 cm (kept growing during 2 yr.)MIDDLE FOSSA  11/9/09;  Michigan Ear Institute Dr. Zappia & Pieper
SSD, mild tinnitus, delayed onset of facial paralysis lasting 3-4 weeks, no tears AN side
BAHA surgery 10/2/12 Dr Daniels G.R.,MI

KimR

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Hi Denise,

Thanks for the best wishes.

Dr. Chan showed me the MRI film and called it a medium sized tumor and she explained how it is sitting up against the brainstem. There's no deformity to my brainstem though and she doesn't think my "lightheadedness/feeling like I'm going to faint" episodes are necessarily due to my tumor. She said those episodes could be related to something totally different, like my heart.

I had Middle Fossa back in 2003.

I looked at the photos of all the doctors on the wall at Michigan Ear Institute. I saw Dr. Chan's photo and also another asian doctor. I think the name was Dr. Lee. Dr. Lee looks younger so maybe that's the doctor you are thinking of? Under Dr. Lee's photo I believe it said 2008 - 2010. It didn't say any dates under Dr. Chan's photo.

KimR

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Hi iluuvpups,

I'm sorry to hear about your facial paralysis. I hope and pray that is just temporary and you recover completely.

When I saw Dr. Chan, she asked me how Dr. El-Kashlin at University of Michigan couldn't tell from tests, done before my surgery in 2003, whether my neuroma was AN or FN. So apparently Dr. Kartush couldn't tell what your neuroma was either until he opened up your skull. I'm guessing they did all the standard tests for you before your surgery? What size was your tumor before surgery?

Dr. Chan seems to think that a tumor my size would be causing me some facial paralysis, weakness and/or tingling and numbness as she said she had another patient come in with a smaller tumor than mine and he/she had total facial palsy. I have none of the things Dr. Chan mentioned. I just have moderate hearing loss, bad headaches, tinnitus and my occassional "lightheadedness/feeling like I am going to pass out" episodes with one episode of blurred vision for about 10 minutes.

Take care and I wish you the best during your recovery.


iluuvpups

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Hi Kim.  I had 3 different doctors look at my MRIs before surgery and none even suggested a facial neuroma.  Plus I had all the various tests that MEI does on people (like 2-4  hours of tests) done and again, no one even thought I might have a facial neuroma.  They didn't know until they opened me up.   I had no facial paralysis or any facial symptoms prior to surgery.

The size of my tumor was determined to be 1.75 cm from the MRI.  Upon opening me up, Dr. Kartush said it was actually 2 cm.  They took out all but 5 mm. 

I just saw Dr. Kartush yesterday and he is recommending gamma knife radiation in 6 months to a year.  He said it will not paralyze my facial nerve to have it done.  I'm going to get another opinion on this from House Ear Institute in California.  I'm waiting to hear back from Dr. Brackmann from there who is currently out of the country. 

So that's where I'm at in my journey right now.

Original 1.75cm left-side AN diagnosed Feb 2010
Translab surgery May 27, 2010 with Drs. Kartush and Pieper of MEI
SSD on left side, some facial weakness, tear duct doesn't work
Found I actually had a facial neuroma during translab
Remaining 6mm facial neuroma - watch and wait

KimR

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Hi iluuvpups, Please keep me posted how you're doing and what you find out from House Ear Institute.

Take care,
Kim

sues1953

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Jesse,

Many people here have had Gamma Knife after surgery to kill the remaining tumor left to save the facial nerve with great success.  I was with Carol Ann (luvipups) Tuesday when she talked to Dr. Kartush and she specifically ask him about your post, mentioning you are an MD.  He was quite reassuring that he does a lot of these and they are almost always successful.  So I'm not quite sure about the conclusion that you have come to that radiation destroys the facial nerve.  It is so much safer now than it use to be.

Maybe some of the posties that have had Gamma Knife after surgery will respond.

Sincerely,  Sue

I do know that Dr. Kartush's fellow (forgot her name again) did tell us that the exact location of the tumor had a lot to do with the decision for radiation.
3.2 cm AN Right side diagnosed 12/4/09
Translab surgery May 2010 with Dr. Jack Kartush and Daniel Pieper at Michigan Ear Institute.
Successful surgery .5mm left on facial nerve.  Full facial movement. SSD, Tinnitis, tongue and lip numbness.  No headaches.  Back to living life.