New: Looking for advise

[bleavitt]

I'm a 38 year male,in good shape, with a 1cm AN in my right ear. I'm looking for any advice anyone could give me. Of importance is that I had hodgkins disease (cancer in the lymph node system-neck)in 1982, which was treated with chemo and radiation. In 2001 in had to have a slivia glad removed on my left side due to mixed results on the biopsy. Overall, no problems, except this!

So that's my history. Dr. Teilan at UofMichigan is my doctor. After one meeting and all the testing, I respet his opnion. He seemed to be leading towards middle fossa for me, given my history and age. My research only complicates things for me. Anyone deal with Dr. Teilan, or UofM? Any thoughts on treatmen?, My main hang up for me as it pertains to radiation is that the tumor can become malignant and/or make surgery more complicated if needed down the road.

Any advice would be appreciated.Thanks!

[Kaybo]

bleavitt~
I'm from Texas so I can't really help you any, but I just wanted to welcome you to this site.  I'm sure someone else will be able to answer your questions!!

K

[cindyj]

Hi bleavitt,

Well, you have certainly been through so much already!  So sorry you now have more to deal with, but you've come to a great place for support and info. 

I will let some of the others that are much more technically/medically inclined than me offer their great advice.  But, I will say that the notion that an AN can become malignant due to radiation and/or may be more difficult to treat as a result of radiation is quite a point of contention in the medical community.  Many doctors agree and many disagree, apparently... This and many other factors make choosing AN treatment very difficult and very personal.  It can be very overwhelming - it certainly was for me. 

Good luck - I'm sure others will be along and will be of more assistance to you,

Cindy

[leapyrtwins]

Hi, bleavitt -

I haven't heard anything about U of Michigan, but I have heard of Michigan Ear.  From what I've heard, Michigan Ear is supposedly #2 in AN surgeries; House (HEI) in Los Angeles being #1. 

I'm not at all saying that U of Michigan isn't a good place - but if you plan to consult with other doctors prior to your treatment, you might want to check out Michigan Ear since they are close to you and they have a very good reputation.

As for your thoughts on radiation - that it might cause your AN to become malignant or that it might make subsequent surgery complicated - I don't think either of these concerns are valid.  But I'll leave that to one of our more "scientifically oriented" forumites to address.  I'm sure someone who has had radiation will have many thoughts on this.

Best of luck in making your treatment decision; it's not an easy task.

Jan

[sgerrard]

But I'll leave that to one of our more "scientifically oriented" forumites to address.

Would that be me by chance?

There are some good reasons to be concerned about radiation, like swelling, and waiting a year to see how well it worked, and not having the tumor actually removed. The chance of malignancy is much too small to be a good reason; if you don't count the 8 NF2 cases, only 6 other cases have ever been reported. More people win the lottery.

Treatment the second time is always a little more complicated, because both surgery and radiation cause scar tissue. The chance of regrowth is about the same either way, so it is just a bridge you have to cross if you get to it. The last few cases that have been reported here were successfully treated a second time.

Whether your previous radiation treatment is an issue is a question for a radiation oncologist. You might want to try the cyberknife forum, where doctors can answer a question like that. They are changing their website on Oct 10th to  www.cyberknife.com.

If you are considering middle fossa surgery, then I assume you are aiming to preserve hearing, so radiation treatment for your 1 cm tumor is worth considering as well.

Steve

[bleavitt]

I wanted to thank eveyone for their input. I've got a day booked with appointments so time is a little short this morning and today, but I look forward to following up this evening, thanks again for the great reponses!

[Tamara]

I've just had a thought and it's not to contradict you, Steve.  Just that the number of cases in which something is reported is not the same as the number present.  My AN turned out to be a very rare adipose tumor.  My doctor mentioned 4 cases ever described in literature.  I asked if he was going to publish my case and he said that he rarely publishes anymore.  Well, no one will ever know that there's another case out there, will they?

As far as the malignancy, my neurosurgeon had a patient in his office the week before my consult to whom this had happened.  Apparently the patient is terminal.  So, I'm doubting this case will be "reported" too.  It's unfortunate that there isn't a better "reporting" system!

Tammy

[leapyrtwins]

But I'll leave that to one of our more "scientifically oriented" forumites to address.

Would that be me by chance?

Steve -

you are definitely one of the ones I was referring to; Mark also comes to mind.

You guys are so "into" the medical and scientific stuff - especially about radiation - I find I'm not in that league. 

I tend to go by "gut", opinion, and personal experience - not by science since I never was good at biology 

Jan

[Omaschwannoma]

Glad you found us and your answers are coming, unfortunately, they probably arent' as definitive as you would like.  This is the problem, there are no clear cut answers to this tumor.  I would like to tell you my story and why I'm glad I chose surgery.

I had surgery in 2005, but before I did the research and talked with doctors that offered radiation treatment also.  The thought I would need surgery after a radiated tumor that decided to grow later in my life always loomed large as one surgeon said he wouldn't feel comfortable performing surgery on radiated tissue.  I didn't want any surgeon dealing with a more difficult surgery after radiation treatment knowing this surgery is a delicate one in the first place, surgery on radiated tissue makes it even more so.  Now I don't know the "numbers" on radiation treatment as well as those who chose this treatment, but I'm sure the "odds" are slim for a tumor to grow after treatment.  

As it turned out I returned to surgery in 2008 due to increasing difficulty with balance.  On MRI they also saw inflammation and hemhorrage of the inner ear.  I had a transcanal labyrinthectomy and now I'm one of the lucky people able to say all is well--finally!  

I think back on my choices and I'm glad I chose surgery over radiation, but this doesn't mean radiation is NOT the way to go.  One has to choose their form of treatment based on information given from reliable sources (doctors) and after that the choice boils down to "what is your gut telling you".  My surgeon told me the day I was introduced to him, "There is no wrong decision in choosing your form of treatment."  

This is your choice and you will have to live with it so make it an informed one.  Sorry you are dealing with this difficulty on top of what you have already been through, this has to make it very hard for you.  

[bleavitt]

Thanks again for everyone's input. I'm talking to a friend of mine from high school today, off the record, who is ear, nose and throat doctor. I will let you know his input. I'm really taken back by all the input all of you have given me, thanks so much! 

[msmaggie]

Hi there,

I have been talking to a friend of mine who is a dr. (anesthesiologist) at U of M hospital.  It is a very good place to be.  You might want to see Dr. Alex Arts or Dr. Gregory Thompson.  Those were some names he mentioned to me.  Thompson is a neurosurgeon...not sure what specialty Arts is in.

Hope that helps!  This site can tell you just about anything you want to find out about!

Maggie

[bleavitt]

thanks msmaggie!

[lacey7]

Hi there,
I live in Michigan, and am about 45 minutes from U of M.  They are an excellent facility, and I went to a welll known rheumotologist there for years.
I choose to go to Michigan Ear Institute, mostly b/c I had heard such good things about them.  As Jan said, they are known to be Number 2 in the state for this.
I'm happy you found a great doctor at U of M, and you feel good with him.  I'm just telling you this, in case you want a second opinion.  Dr. LaRouere is the doctor I went to at Michigan Ear.
Wishing you all the best wishes.
Lacey