Lipoma or Acoustic Neuroma?????

[Dawn]

Hi all,

I had my follow up MRI on Tuesday and was told there was little growth which was good and that the surgery option for me would be Mid Fossa as the tumor is all the way at the end of the canal and my hearing is 100%.  So I leave and feel pretty good that we have a type of surgery to get this out of my head....when I get the call from the doctor to come back in for more tests as they think in might not be an Acoustic Neuroma but an even more rare Lipoma in the Internal Auditory Canal..

After I have the tests done, they still weren't sure and were going to have consults with radiologoists, ENT and Neurosurgeon.  Get the call 2 days later and they do believe that it is a Lipoma and will not operate on it b/c it doesn't respond well to surgery and would almost guarantee facial nerve damage!

So my question is has anyone out there heard of this or even had this diagnosis and if so how was it treated.  My research has not turned up much except that it keeps telling me how rare it is.

Where the doctor thinks this is great I find this extremely upsetting...I want this out of my head!!!  I'm tired of waking up with headaches and being off balance.  While I was not looking forward to a surgery, I was looking forward to having it removed, healing and getting on with my life!

Any help anyone can offer would be great, I'm so upset and frustrated right now, I feel Like I'm back at the beginning!!

Thanks
Dawn

[sgerrard]

A lipoma in the canal is pretty rare (there have been something like 40 ever reported). They are a little more common in the CP angle area. Before I would accept that diagnosis, I would want to know if Dr. Brackmann at House Ear Clinic agrees with it. This is the kind of case where his phenomenal experience in reading MRIs would be valuable. You can send a CD of the MRI and get a phone consultation. http://www.houseearclinic.com/acousticneuromaconsultation.htm

If it is a lipoma, it seemed to me when Googling it that several have been removed surgically, so I'm not sure where the guaranteed facial nerve failure is coming from. Since no one has a huge amount of experience with them, I would want to go to House, or somewhere really good, if it is a lipoma. I have no idea if radiation is an option (it sounds like it would not be), but the place to ask would be on the CK forum. Dr. Medbery will know about them. http://www.cyberknife.com/Forum.aspx

I hope you get to the bottom of it soon, and find a good path forward.

Steve

[Dawn]

Steve,

Thank you so much for your response.  I have been in contact with Dr. Fayad at House, he originally read my MRI and spoke with me about having Mid Fossa Surgery.  I did call him and will be sending him the new MRI once I get it in the mail.  Do you know if all the Doctor's at House read them together or is it just the one I'm in contact with? I would love to have the opinion of all of the best out there.

I too thought if this was a Lipoma that I would most definately be going to House!!!

I am so upset right now thinking this could actually be a Lipoma and unable to be removed without damage to facial nerve.  I was told that if it is a true Lipoma they usually adhere to the facial nerve and most always leave some sort of damage as it is hard to get out.

Again thanks for the response, I'm looking for any opinions I can get.
Dawn

[JerseyGirl2]

Dawn,

I think you're wise to be sending your latest MRI to House. Re: your question about whether all the doctors review the MRIs together -- my assumption is that the doctor who calls you is the one who's reviewed your MRI, but I would be willing to bet that in "unusual" cases (and yours sounds as though it may fit that category) more than one doctor gets involved. I think most would agree that you absolutely need to consider a world class facility if your situation turns out to be a rare one.

Best wishes as you proceed,

Catherine (Jersey Girl 2)

[sgerrard]

As Catherine said, I think for an interesting case (from their point of view), the doctor handling your case would share the MRI with the others. I suspect Dr. Brackmann would want to see it, since it is pretty rare.

I noticed you said in the original post that it was all the way at the end of the canal. Does that mean the end away from the facial nerve? If so, the facial nerve may not be in much jeopardy. My other question for you: if it is a lipoma, would leaving it there and just watching it be okay? They may be less likely to grow or cause trouble, and maybe that is the best way to handle them.

Good luck,

Steve

[Dawn]

thanks for the responses.

Steve that is one of my big questions....if this is truely a Lipoma and at the end of the IAC if it is not touching the facial nerve yet, in my opinion just take it out before it gets to touch it and cause more problems.  I originally thought the AN was on the vestibular nerve but wasn't sure about the facial nerve.  These are questions I now have to ask.  The doctor I saw is recommending wait and watch but since November when I was diagnosed I have thought of pretty much nothing else.  I WANTED IT OUT!!! and now not so sure they can get it out without higher risks.

My other problem now is...lets say after House reviews MRI's they say it is an Acoustic Neuroma....who do I believe?  I now feel more helpless and confused then I did before 

Well I'm hoping to get my MRI's in the mail this week and mail them off to House by the end of the week, so I can get to the bottom of this

thanks again for responses and for letting me vent my frustrations...

Dawn

[sgerrard]

At first I was going to say I don't know what you should do, but then I looked back and realized something. Your current doctors won't operate on it, because they believe it is a lipoma. You are in consultation with House to see what they think it is. Regardless of which one they pick, if they say they can treat it, you have to go to House.

Here it is spelled out. If House says it is an AN, your doctors won't want to treat it, but House will. If House says it is a lipoma, your doctor's won't want to treat it, but House might be able to.

So I think that if you are getting treatment for this thing, you are going to House. Be sure to get a photo taken with David, Lainie, and Nancy.

Steve

[Tamara]

Hi Dawn,
  Sorry, just saw this thread now.  I had a lipoma removed last summer via translab.  At the time, no one had any idea it was a lipoma, and just thought it was a normal AN. 
  A few things about this:  First, the literature I've seen (and there IS remarkably little) states that the most common symptom with lipomas is hearing loss.  Significant hearing loss was my only symptom.  Now, that may depend on where they are found.  Also, I really don't know where mine was located. 
  Second, lipomas differ from ANs during surgery in that they are very "sticky".  This means they can be quite tricky to remove.  In my case, they had to cut it off the nerve with a scissors.  Usually, ANs just peel off, I guess.  The extra trauma can cause more damage to the nerve, either directly, or indirectly through later inflammation in the area.
  I did indeed have facial palsy after surgery.  Directly afterwards, when I woke up, my function was only slightly off.  As the inflammation set in, I had significant palsy.  I had eye issues because the lid would not close properly.  That part was the worst.  I am now 9 months post op and most things have resolved.  My eye is fine, and I have both a closed-mouth smile, and a smallish open-mouth smile.  I still cannot raise my eyebrow, and my mouth cannot clamp shut on the left.  I cannot whistle or blow up a balloon.  I also found that I cannot do "rescue breaths" during my latest CPR training, so no one had better collapse around me.
  OK, that sounds like a lot, and yes, it was a pain to deal with.  BUT, I would do it again, since a little sticky mess is still easier removed than a big sticky mess.  My lipoma was only 7 mm.  I don't see the size of yours listed.
  I'm curious to know why the surgeons think yours is a lipoma....my doctors didn't seem to think there was anything different on my films, and were surprised by the pathology findings.
  House is probably a very good option, but I guess my story proves that even your local AN doctor can remove one.


Best Wishes,
Tamara

[Dawn]

Hi,

I am glad to hear you are getting better!!!!

I had the MRI done and the radiologist thought that with and without the contrast the tumor looked a little bright which usually means it is "fatty", I just received the written copy as well as films from that last MRI and will be forwarding it to House tomorrow!!!!

The doctor did say it CAN be removed but that these type tumors are very Sticky and tend to stick to the facial nerve which would most likely cause facial nerve damage and possibly permanent paralysis!!!  I am so afraid of having my face muscles not work

My tumor is very small like 5 mm and it is what they say deep in the IAC.  I have no hearing loss but have some balance issues and a 40% deficit of the vestibular nerve on the left side.  I'm hoping that b/c it is so small if we act now I can get it removed before it presses against the facial nerve!!!  but i don't know how close it is to the facial nerve?

So I'm hoping House hasgood news for me.

Thanks for the help
Dawn

[wendysig]

Dawn,

I hope House has good news for your too.  Please keep us posted and let us know what your plans are.

Wendy

[Tamara]

Dawn,
  Just curious - if your doctor won't remove the tumor, what does he think you should do about it??

Tamara

[Vivian B.]

Hi Dawn,

I was just reading through your posts. They thought I had an AN. It turns out to be a mengioma that usually sticks to the bone. I am confused as well as I have to see a Neurologist now and the surgeon only said that he is pretty sure that it is not an AN. I understand how you feel. What would be the difference from a lipoma and a mengioma?


Vivian

[Pooter]

With a quick wave of my magic wand (i.e. search of the internet) garnered these gems:

"A meningioma is a type of tumor that develops from the meninges, the membrane that surrounds the brain and spinal cord. "

"Lipomas are non-cancerous, slow-growing tumors composed of fat tissue. "

MsMaggie, another member here, was diagnosed with a meningioma or possibly acoustic neuroma, but the doctor wouldn't be able to tell for sure until surgery.  She got different diagnoses from different doctors.  Ultimately, the symtoms were very similar and treatment was pretty much the same.  Both types of tumors tended to be non-cancerous.

She had surgery just a little while ago.  Aside from a few bumps in the road to recovery, she's doing great.  I saw her just a few weeks after surgery and she looked like a million bucks!  Since that time, there have been a few bumps but that's somewhat expected (not surprised by it) to have during recovery from pretty major surgery like BRAIN SURGERY.

Lipomas, based on what I've read, are routinely not symtomatic and only removed if a) fast growing (not the norm) , b) symtomatic (not the norm) or c) for aesthetic reasons.  They're also usually non-cancerous.

That help? 

Regards,
Brian

[Dawn]

Tamara - My doctor told me to just leave it alone and pretty much wait and watch with frequent MRI's or until I get worse with symptoms

Brian Thanks for the info - I do not have hearing loss which is the typical symptom...I do however have vestibular problems, according to the test (the balance test I have a 40% deficit of my vestibular nerve on the left.  I understand that these tumors are harder to remove but since it is so small now I was hoping they would take it out now as opposed to waiting to see how it grows....I also only have 1 opinion that says it is a Lipoma so I'm going to get more opinions before I make any decisions!!!

House is first on my list.

Thanks again, you guys are always there for the support and understanding I need!!!!

Dawn

[msmaggie]

Hi Dawn,

My tumor was indeed a cpa meningioma, but as Brian said, the removal of it was exactly the same as an AN. The only difference was that it was not on the hearing or facial nerve, and the balance nerve was not cut.  Recovery has been good except for the usual things that could happen and did happen. I'm doing fine.

The drs. at House will definitely get together to consult on your films if there is any question.  I had a Dr. Wilkinson looking at mine, and he took them to the weekly radiology meeting as the "interesting films of the week."  They all confirmed that it was a meningioma and they were right!  I think you can count on an accurate diagnosis with them.  Good luck .

Priscilla