I have a question on procedures

[Maude]

I have been reading the different types of treatment and none seem to reflect what my specialist explained to me in 2000 that would be done. In my own lay terms it is kind of a "rotorooter" system through the ear canal that then takes out the tumor and then plugs the ear so the brain fluid does not fall out. I was told this was the "easiest" because it did not encompass surgery through the skull. I would not be able to hear, I was told, the tintiniitis would continue as would the dizzyness.  Is this one of the other procedures that I have been reading about?  I have read about the combination with radiology, the mid fossa (spelling), but not this one.  Can anyone help clarify this for me.  Thanks
My AN is in my right ear and is small 9mm x 5mm.

[OTO]

Maude
I'm not an expert, what was explained to me is that there are three microsurgical techniques that have to do with where on the side of the skull the surgeons will enter:  middle fossa, translabyrinthe (not sure spelling) and retroidsigmoid (not sure the spelling).    These three techniques give the surgeons different angles to view the nerves and the tumor.   There is a canal called the IAC (not sure what it stands for).   The tumor normally starts in the IAC canal.   As it gets medium to large it presses out of the canal against the brainstem.   Depending on the size and location, they will use on the techniques to enter the skull and drill into the IAC canal to view the tumor and nerves.  They don't go in through the ear canal and ear drum but through the side of your head (on the temple or behind the ear or below the ear).   Middle fossa is typically used when the tumor is smaller and still in the IAC and when you have useable hearing to save.   Middle fossa has a little more risk in stressing or damaging the facial nerve.    So that is usually a decision point on selecting middle fossa (i.e., how good is the hearing it that ear).

On this forum, there are topics about endoscopic surgery and skull base surgery, which I'm not familiar with...   keep researching and asking questions....  aloha, OTO

[Maude]

Thank you Otto,
I really appreciate the distinction you gave. It helps a lot.
But, I went back to my notes and when I saw my specialist in 2000. He said. "the easiest and simplist way is to go through the ear...there will be no hearing and no balance function...it is the best chances to take it all out with the least difficulty possible."

He at that time estimated 2 hours for the surgery and 2 -3 day hospital stay, with a 90% chance to have facial nerve damange  I see my specialist on Thursday.

I have been looking and looking for this type of procedure replication elsewhere. I have not found it. That kind of unnerves me. I am going to the Cleveland Clinic, which has a good reputation. Maybe they have their own procedure in place, but I would think it would be known elsewhere. Anyway, this time I'm seeing a different specialist at the same clinic because the one I went to has retired.  I'm just trying to get my "ducks in a row" for the consultation.

I just found this site, I've been 7 years struggling alone (with the support of my family, of course). I am amazed how wonderful it feels to have this venue.

Thanks again Otto, you really helped me understand the other options.

[neal r. lyons]

hi maude!  the IAC stands for the internal auditory canal which is a canal thru which some of the nerves that are or can be involved with an acoustic neuroma pass (such as the vestibular-cochlear nerve) which is where the tumors originate
     i think that your doctor was referring to one of  the known procedures and not anything new or unknown
                                                                                     take care and best of luck to you-neal

[Windsong]

Maude, the rotorooter idea sounds like he was actually talking about trans lab surgery..... they go in behind the ear but when they get to the iac area they go in through there.....

w.

[Boppie]

Maude, I had translabyrinth surgery.  I understand that "going through the ear" means laying the entire ear lobe to the front and going into the skull through a quarter sized hole made behind the ear, and removing the tumor which is involved with the nerves.  I question that the facial nerve has 90% chance of being damaged. 

[Maude]

Thank you all. I know I can now ask the specialist if the procedures is translab. That makes more sense to me, including the fat to stop the brain fluid from falling out of my ear description.  I am a lot calmer now.  I am going to type up my questions now, so that when I get in there, I have everything in place so I don't forget something important. Does anyone have any suggestions on what I should not forget to ask?

[Boppie]

Maude, Ask if you can come back for questions that might arise if you get concerned.  Also, ask if there are alternatives to the approach or to the treatment type that he does.  Ask how many of the procedures has he done in the last month or year.  Ask enough questions so that you get a feeling for the man inside that person.  Get to know his humanity.  Is he approachable?

Ask if he will take care of your facial nerve?  Ask how he does this.  No question is too small.  Take a second listener in there with you.  This helps tremendously.

[Maude]

Boppie,
Thanks for the sugggestions. I printed that out--as I did all of the thread--to take in with me. I broke down the questions into three main topics: qualifications, update, treatment. That way, I can kind of group ideas together in the conversation. I thought if I just started bombarding him with unrelated questions, I would get confused as well. I have organized a folder (with my medical sheet, living will, x-ray reports, questions, and notes from previous meetings all in different little compartements). Maybe that will help. I know when I went in 2000, I was so shook that even though I had a list of questions, I am not sure if I even asked them. In fact, I'll bet the specialist could have told me the sun was purple and I would not have processed correctly and would have just noded my head. I really don't want to do that this time, too. Thanks for your feedback.

[ppearl214]

Maude, just curious... with the size of your AN being 9mmx5mm (which is deemed small), have you researched radiotreatment options such as FSR/Novalis, GammaKnife and Cyberknife, etc?  There seems to be a general consensus now in AN treatment physicians that radio-treatment on small AN's are now on the forefront.......just a thought...

Phyl

[Maude]

 Phyl,
It is one of the questions that I have prepared for my visit on Thursday. I am not sure if my mother had AN, she was deaf in one ear but never had it checked out. She died suddenly at 45 (I was in high school so my grasp of the whole thing is not as great as it could be). I understood if the AN is genetic based, radiotreatment option is not as good.   I understand the GammaKnife but am confused on Cyberknife (that is not an internet term, right  ) I will research the FSR/Novalis because I can't recall that those are. Thanks for the head's up.

[FlyersFan68]

Hi Maude,
  I wish you well during your AN journey. I hope you find the best doctors and the most suitable treatment. There is plenty of information and help out there. Maybe this link will provide you with some answers.

http://www.washingtonent.com/vestacneuroma.htm

[ppearl214]

...I understood if the AN is genetic based, radiotreatment option is not as good.

Hi Maude,

I have never heard that unless someone else here can chime in on that....

Here is the link to the manufacturer of Cyberknife and what it is:

http://www.accuray.com/Products/Cyberknife/index.aspx

If you also read the Radiation forum on this site, you will learn more about all the radio protocols available.  You can also check the Cyberknife Patient support board (if you read the "Brain" section, you will see many AN posters with questions about treatment options and comparisons to other radio protocols.  The dr's that volunteer their time their are quite versed on the many radio protocols has they actually perform them as well.  Website link:  http://www.cyberknifesupport.org/forum/)

Hang in there!
Phyl

[SteveWWD]

Never heard of that approach. Perhaps they were referring to the translab.

[cookiesecond]

Hi Maude,
I had the translab approach. They went in behind my ear. I did lose the remaining hearing and my balance nerve. The vertigo is getting better. The doctor says the other side will compensate.They did use belly fat to plug the incision.My facial nerve remained intact and they did remove all of the tumor.
Overall, I am doing good. I still get dizzy at times but I do have a neck/back injury that complicates things. Taking the questions in on paper is a great idea. However Bobbie had a good idea about asking questions as they arise later. I always think of something after I leave the office. My doctor was great about returning my calls to answer questions.

Having a doctor that you feel comfortable with and that is experienced is invaluable!!!!
Take care and keep us posted.
You are in our thoughts and prayers,
Lynn