ANA Discussion Forum

Watch and Wait => For those in the 'watch and wait' status => Topic started by: HCSTARWIND on January 09, 2009, 01:32:50 am

Title: It not an acoustic neuroma but a lipoma
Post by: HCSTARWIND on January 09, 2009, 01:32:50 am

Hi I recently had a f/u appt. @ Johns Hopkins and they feel it is a lipoma in the IAC vs an acoustic neuroma. This is also a benign tumor but can be a more infiltrative tumor. Also slow growing. I plan to f/u with a neurosurgeon next week here on my trigeminal and neck issues. Maybe I'll get some answers there.

Has anyone here had a lipoma diagnosis? How was it managed. I guess if my neurologic symptoms continue, they can remove it through the middle cranial fossa approach since is it so far in laterally. For now I am going to continue to watch and wait and f/u with periodic MRI's.

I keep you posted. Thanks for all your support.

Helen

Title: Re: It not an acoustic neuroma but a lipoma
Post by: Syl on January 30, 2009, 12:34:24 pm

Helen:

Isn't a lipoma a lump of fat? I had one the size of a golf ball removed from my neck in 2007. It wasn't doing any damage, but it was huge.

I hope you get more answers.

Syl

Title: Re: It not an acoustic neuroma but a lipoma
Post by: mimoore on January 30, 2009, 03:03:49 pm

I found this: http://www.uabhealth.org/17771/ (http://www.uabhealth.org/17771/)

Hi Helen,
Keep us posted.
Michelle  ;D

Title: Re: It not an acoustic neuroma but a lipoma
Post by: suboo73 on January 31, 2009, 06:14:47 am

Hi Helen!  I am curious - did the doctor give you an explanation as to why they think it is a lipoma and not an AN (shape, rate of growth, color, etc.)? 
I have been to Hopkins myself - if i understood the surgeon correctly, he told me he does not do middle fossa approach any longer, saying there are more complications with that approach than the other approaches.  Maybe that is just his experience and preference as i know from reading on this site that other AN patients have middle fossa with other doctors.

Anyway - i am due for MRI #2 in April 09 - so just curious about your 'new' diagnosis.
Watching and Waiting makes me crazy some days - but it seems like W & W for you was good, and helped your doctors better define the growth.

I hope others can help you learn the treatment options for the lipoma.
Please give us updates when you know more.

Take care.
Sue

Title: Re: It not an acoustic neuroma but a lipoma
Post by: MAlegant on January 31, 2009, 08:03:14 am

Hi,
I have a lipoma as well, in my abdomen, actually, just below the skin surface, not in the abdomen.  They will remove it when I'm ready since it's doing no harm (just getting bigger).  I told them I needed to wait at least a year before another surgery!  Yes, Syl, I think it's just a fatty tumor. I wonder if these are related in any way to AN's?  Anyone else out there?

Anyway, my tumor was not an AN but another type of schwannoma.  Still gets removed the same way and can do the same damage if it grows too large.  Good luck!
M

Title: Re: It not an acoustic neuroma but a lipoma
Post by: catlover on February 18, 2009, 03:19:16 pm

Hi,

This is very interesting! About 20 years ago I got a lipoma (I think) removed from just under my skin at my back. When I read your discussion I also wonder if those lipomas really have anything to do with ANs. It seems as if the ANs and the lipomas are the same sort of tumours, but only grow on different places in the body. Sometimes I also worry about having NF2, but my doctors have said that it is almost out of the question because I'm soon 43 years old. They told me that if you have NF2 you often notice that when you're much younger. I don't know if that's true.

All the best,

Helene in Sweden

Title: Re: It not an acoustic neuroma but a lipoma
Post by: Cheryl R on February 18, 2009, 03:37:09 pm

Hi Helene.     Lipomas are fatty tumors while a NF2 would have a neurofibroma which is different.   Lipomas can happen to anyone and are not a rare tumor.   
I was 50 when the tumor on my left showed up and caused me to be classified as NF2.    I had had my surgery on my right 2 years before and never dreamed that I was a future NF2.   
I just keep saying life is all day by day!                         Cheryl R

Title: Re: It not an acoustic neuroma but a lipoma
Post by: HCSTARWIND on February 24, 2009, 10:58:36 pm

Hi Sue...in answer to your question about the lipoma vs an acoustic neuroma. It is my understanding that lipomas show up on MRI with Gad as hyperintense.( brighter). According to the Dr. they can do a fat suppression test to determine if in fact it is a lipoma. Since mine is so small and laying far in the IAC near the labrinyth it would be difficult to get at with at Retrosigmoid approach. I beleive they can do Translab which would definitely take out all of my serviceable hearing or do the middle cranial fossa approach. These tumors are sometimes not easy to remove. They can be sticky tumors. It has something to do with cell structure. So for now I had to address my Cervical spine issues that was causing alot of neurological symptoms. My hands and feet were numb and tingling and achying alot. There still is a question of MS but that is difficult to diagnosis. MRI showed significant spinal stenosis (cord compression) that was causing the myelopathy in my extremities. So I needed to treat sooner than later. I am 3 weeks post-op and doing fairly well.
I saw 2 dr's at Johns Hopkins Hosp. and both felt that watchful waiting would be the best course of action for me at this time.
I encourage you to get as many opinions out there to help you in your research. I have had 4 opinions to date.
Take care and stay posted. Helen