ANA Discussion Forum
General Category => AN Issues => Topic started by: KimR on June 14, 2010, 09:38:35 pm
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I had surgery in 2003 for, what was thought, a 1.5 x 0.9 cm acoustic neuroma. The surgeons found out, once poking around inside my skull, that it was in fact the more rare variety... a facial neuroma. They decided that, since I was 43 at the time, they would not remove the tumor and instead remove some bone to give it room to grow so I could keep the left side of my face intact for as long as possible.
I was having yearly MRI's up until 2006, when I stopped due to my mom becoming paralyzed from the waist down. The tumor had not grown from 2003 to 2006. The last couple of weeks I have been having episodes of lightheadedness and an increase in headaches. Thursday I almost passed out in the shower, had nausea and blurred vision for about 10 minutes. The blurred vision scared me more than anything else.
This morning I had an MRI and this afternoon I saw the neurologist. My tumor is now 1.6 x 1.7cm and he suggests I go back to the surgeon who did my surgery in 2003. My question is, if they suggest surgery, how likely is it that I will have facial paralysis? This scares me more than anything.
Any info you can give me regarding facial neuromas is greatly appreciated. Thanks.
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Kim, I am sorry to hear of your tumor being a facial one. You had a bone decompression done to help give room for the tumor. I would ask your surgeon how many facial neuromas he has done surgery on. My neurotologist at Univ of Iowa likes to do a nerve graft with taking nerve from by the ear and grafting in if during surgery the facial nerve is severed. In this case one does have paralysis for several months and I did not have complete movement back but some so the face looks ok at rest. Some surgeons remove part of the tumor and leave some and do some radiation to help prevent more growth. One may not know of the outcome till one has the surgery. There are some surgeons who do not know much about doing the surgery on the facial nerve and you need to make sure you have one who does. You have to be specific in asking how many and their outcomes.
My surgery type was translab as had already lost the hearing on that side.
My only symptom prior to my surgery was some facial drooping. I am surprised you would have some of the symptoms you have had. There must not have been anything else showing up on the MRI. I would ask even if maybe if a CT scan might be needed. A dr would be a better one to ask for that possiblity.
If the nerve is severed then yes there will be paralysis if nothing else is done at that time. There are some types of surgeries one can do later to help improve the paralysis. Knowing ahead that it is a facial one can help in getting the right surgeon to do youe surgery. Good luck and keep us posted what you find out.
Cheryl R
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Hi Cheryl,
Thank you for replying. I also get pain and tinnitis in my left ear and some hearing loss due to the surgery I had in 2003. My headaches are daily but recently they are worse. The lightheadedness, nausea and blurred vision is new.
I had my surgery in 2003 at the University of Michigan and they said they had never seen a neuroma originating from the facial nerve except in text books. They asked my mom for permission to video tape the surgery. :-\ I think I am limited as to where I can go since I am disabled and on medicaid.
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Hi Kim,
I don't have a facial neuroma but I have a friend that just had surgery and she had a facial neuroma almost totally removed with a very small amount of facial effect. She had the surgery done by Dr. Kartush at Michigan Ear, she lives in Canton. I don't know how much experience Kartush has in facial neuromas but he did inform her that he would be able to radiate the remainder of the tumor when she heals from surgery.
I will call Carol Ann and let her know that you are here and you have questions and hopefully she will contact you. Do you live in Michigan? I live in Oxford, N. of Detroit and Dr. Kartush did my surgery on May 20th.
Best Regards, Sue
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Hi Kim, That is interesting about your drs not seeing a facial neuroma as know they are not common but not completely rare. Surgery is the same as for a regular AN but one has to be more careful as the nerve can be severed easily and then there are problems and paralysis. Would your medicaid let you go out of state? Iowa City is a bit of a ways. I know as we have a daughter in Lansing. Can you try the Michigan ear? If the state says you need to go where you did before then try to appeal as one need experience. Plus everyone has a different experience as each persons tumor location on the area of nerve can play apart in how it all goes. Sounds like might be best to work on this soon. I know this has to be a worrisome time and hard when we have to be the ones who find the right dr. I don't know if your U of Mich drs can refer you to another if you make sure to say you want a dr who has done them.
Wish we could be of more help. Cheryl R
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Hi Sue and Cheryl,
Yes I live in Houghton, Michigan. So you say Michigan Ear is a good place to go? I will call my neurologist after lunch and ask them about that. Thank you and yes it would be great if I could talk to your friend who had surgery with Dr. Kartush.
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Hi Kim,
I too have a facial neuroma and my experience is very similar. The ENT who operated at the time removed some bone to allow growth, he also debulked the tumour. When I went to see him for a follow up, he told me he had no idea what I have, he sent everything off to pathology and that it was such a mess in there that it wiped out the three bones in my middle ear. I had surgery Sept 2006, and I have been watch and wait ever since. I suffer brutal headaches, facial pain, hemifacial spasms, balance issues and depression.
I have a MRI about every 10 months and thankfully the tumour has remained stable. If there is growth, the neurotologist and neurosurgeon will do a nerve graft but they will take a nerve from the back of my right leg for the nerve graft. Maybe for me it has to due with the location of the tumour.
I'm curious are you on disability because of the tumour or another health reason for I'm also on disability because of headaches and facial pain.
Anne Marie
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Hi Anne Marie,
I'm on disability because of Ankylosing Spondylitis. I found out about the tumor after. I'm so tired of doctors and surgeries. I've had 4 surgeries since 2006, not related to the facial neuroma, and have just been told I may be looking at knee replacement in the future. I'm a real mess. Now I find out my tumor has grown. :-\
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Hi Kim,
I talked to Carol Ann and told her about you. She is 3 weeks post opp and has not been on the computer yet. She is going to contact you soon. Hopefully today.
It sounds like you are going through a lot right now. I will keep you in my thoughts and prayers.
There also is DeniseS, she lives in Ludington MI and she went to MI Ear as well.
Good Luck. Sue
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Oh my dear friend Sue even mentioned my name ;) how interesting. I was reading this (because I was thinking of Carol Ann when I read the topic) and see you too are from MI. Anyways, I would highly recommend Michigan Ear Institute as the place to go in MI. Try to be sure to get Dr. Kartush if you can. Sure he is probably the most experienced in this state anyways. I'm pretty sure he is the one who developed the facial monitor that is used during surgery to monitor the facial nerve while working on tumor removals.
BEST WISHES to you!!
Denise
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Kim,
I'm also a Michigander. You're in my prayers. When I was diagnosed, I was seriously considering Michigan Ear and would have tried for Dr. Kartush as I have an acquaintance who had him and was quite pleased. I ended up going with Cyberknife. Take care. Mona
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Kim,
I'm also a Michigander. You're in my prayers. When I was diagnosed, I was seriously considering Michigan Ear and would have tried for Dr. Kartush as I have an acquaintance who had him and was quite pleased. I ended up going with Cyberknife. Take care. Mona
Well hello other Michigander ;D What area are you from? Curious where you are getting the cyberknife done? Hopefully all is going well.
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Hi Denise,
I'm in Kim's neck of the woods - Upper Peninsula. Had CK at Stanford 11/'08. It was well worth the trip. It was the right decision for me. I hope all is going well with you also.
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Thank you everyone for your best wishes and prayers. I hope you are all doing well. :)
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Hello Kim,
I am about 2.5 months s/p middle fossa approach for what was thought to be. 5x4x7mm AN, but turned out to be a FN, like yours.
I had NO facial palsy going in, minimal hearing loss, and mild (ignorable) tinnitus.
Once inside my noggin, they uncovered it's true identity, debulked it a little, (obviously unroofed the boney canal), and closed me back up.
I asked the neurosurgeon how much he debulked it, and at one time he said "60%", and at another time, he said "just a little bit".
(I'm not quite sure how to reconcile those two different estimates)(and at this point, it doesn't much matter)
Post-op, hearing is the same, and if I tell someone to look for it, they can BARELY detect a slight assymetry to my smile, ( it would be unnoticible, if one didn't know to look for it).
The way it was explained to me was that:
if, down the road. I were to develop a grade IV palsy, then they could go back in, excise the tumor, do a nerve graft, and get me back to at least a grade III, if not better.
Since I had NO palsy yet, they made (IMO) the right decision to leave well enough alone, for now.
I had three neurolotologists from House Ear Institute on my case, AND a neurosurgeon.
Overall I am happy with my outcome, and remain eternally thankful I didn't opt to nuke the thing as I would have a major palsy , and perhaps be less (to perhaps UN-) responsive to a nerve graft.
Hope this helps some.
Jesse
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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
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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
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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
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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
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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?
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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
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Kim,
sorry for the thread hijack.
It's just her post with some suspect advice worried me
Jesse
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Jesse,
I found your posting very informative, your explanation answered a lot of questions I had about radiation.
Anne Marie
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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?
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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!!
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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.
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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.
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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.
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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
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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.
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Yes LOCATION, LOCATION, LOCATION is very crucial when dealing with a facial neuroma. I am not a candidate for an type of radiation because of the location. I had several opinions.
Anne Marie
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Sue ~
I don't have a medical degree so I won't attempt to arbitrate between what licensed physicians state regarding the use of radiation on a patient with a facial neuroma. However, I gathered from Jess's post that he was clearly making a statement specific to "someone with a small tumor completely within the internal auditory canal, with the tumor surrounding the nerve".
As you commented in your last post, according to Dr. Kartush's Fellow, the location of the tumor is paramount when deciding on radiation as a treatment. I'll have to assume that Carol Ann has a tumor that is amenable to radiation based on it's location. However, the final decision is hers and of course, the advice she received from Dr. Kartush, an experienced doctor who is familiar with her case, has to be taken as completely credible as well as being directly relevant to Carol Ann's tumor. Jesse was just offering a general opinion, not trying to direct anyone's specific treatment. I'm sure Jesse would agree that Carol Ann needn't fret about this apparent dichotomy of opinion between doctors and to trust the opinion that comes from the doctor working directly with her. That's my take.
Jim
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Thank you Jim. I do understand that location is important and each case is different. I believe you are right about Jesse's comment on a small tumor within the bony canal.
Sue