Recently diagnosed - Middle Fossa Surgery and hearing preservation

[Swingate2002]

Hi everyone

I have recently been diagnosed (New Years eve to be precise) with a small intracannicular AN (around 5mm). I had sudden hearing loss on 23rd December, saw an ENT specialist on 27th and was put on steroids and given a scan which showed a small AN which is apparently close to the cochlear.

My hearing has returned to near normal and the tinnitus has also gone so I have no symptoms.

I live in London, UK.  What is worrying me is that I was told the approach needed would be middle fossa to remove it but it also appears that this is not routinely done in the UK.  I am waiting to speak to my consultant again as I am effectively on watch and wait until the next MRI in June.  I obviously want to get the best result possible and have contemplated having treatment outside of the UK if necessary but wonder if I am just chasing something that is not really achievable and if I would be better to watch and wait and try to put all of this out of my mind.  I just have the feeling that watch and wait is simply waiting for my hearing, balance etc to deteriorate.  I am a very action orientated person and this doesn't sit well with me.

I think the UK stance is that the MF approach is more risky to the facial nerve and also higher risk generally (eg possible seizures).  Does anyone have any comments, recommendations, experience of having an AN close to the cochlear and having successful surgery?  I am honestly terrified of surgery but also don't want to fool myself that I can just sit back leave this to disappear on its own.

I can't stop worrying about this and going over and over the options - none of which are particularly appealing!

Suzanne

[Jim J.]

I had middle fossa surgery done at house clinic last Aug. and had my hearing preserved. The only way you will be able to tell if it will work for you is get a consultation from a doctor that performs the middle fossa approach. House clinic in Los Angeles Ca. will do a free consultation and give you a call. At that time you can talk with an excellent doctor about your situation.
Sorry to hear about your diagnosis but the tumor is still small and you should get excellent results from whatever procedure you choose.
Good luck,
Jim

[james e]

I am telling you my experience, not making a recommendation. I looked at the 3 choices, radiation, surgery, watch and wait. I looked at my condition. 85% hearing loss, tinnitus, vertigo, facial nerve still working. My AN was about the size of an almond, pressing against my brain stem.

My decision was to have surgery. My doc said I would loose all of the hearing in my AN ear regardless of my decision. He said he could save my facial nerve, and THAT was my most important consideration. I was afraid if I went on watch and wait, the tumor might attack my facial nerve. I had translab surgery and my facial nerve was preserved.

Now, all of these tumors are different. Perhaps mine was not too involved in my facial nerve. Maybe I just lucked out. When you talk to your doctor, ask about your facial nerves. I am perfectly fine being SSD. It is not bad at all. Facial paralysis is a big deal. Personally I would risk the hearing in one ear to save my facial nerves.

Do you have a private health plan or are you on government health? Do you have a choice to get several consultations? Can you pick your doctor?

By the way, welcome. I used this site 4 years ago to help me make my decisions, and there are no words that can describe the relief I got from hearing others experiences.

James

[Swingate2002]

Thanks for your replies. And yes this forum is very helpful and I am glad to have found so much useful information here.

It is so confusing when there are options and each has its pros and cons and there is no right answer. I was already thinking of sending my scan and hearing tests to the house clinic and I will do that. I wish they would accept electronic copies given where I am!

I am however worried that it would cost a small fortune and as I would be self funding I would have a serious issue if anything went wrong without insurance.  I do have private cover but this only applies to the UK and it appears the UK stance is to go for "watch and wait" for small ANs. So the chances are that a second opinion here will also recommend watch and wait. So far I have failed to find anyone else that does the MF approach to get a second opinion from in the UK.

I would hate to have facial nerve issues but I also love playing the piano and can't think how that will be with hearing loss in one ear. It was horrid when my hearing went at Christmas - and that was only partial but was accompanied by distortion like a broken speaker sound.

Suzanne

[Rash132]

Hi Suzanne,

I am also in the UK.  I have normal hearing and my tumour is 14mm x 9mm.  I was referred to Manchester Salfrd Royal.  I have been given 2 options radiosurgery or translab.  Retrosig is not an option for me because the tomour is up against my ear canel. 

You're right they want even consider Middle fossa at this hospital.  I was on wait and watch for 2 years when my tunour was discovered to a similar size like yours.

Did you manage to get an consultation with house clinic?  I am also considering treatement abroad.

[Swingate2002]

Hi Rash132

Sorry for the delay in replying - I have been away and also trying to put all things AN out of my mind!

Yes I did get a consultation on the phone from the House clinic which I found to be very helpful and informative.    I am deeply concerned that the only option open to us in the UK is to lose your hearing without an attempt to save it if you have a tumour located in the IAC.

I am getting a second opinion in the UK this week but I am doubtful there will be any chance of them offering the MF approach.  It is a mystery to me why no expertise has been developed in the UK.  I have to say it is not an operation I fancy having done by a novice either, even if they did say they would offer MF what experience will they have of performing this surgery?

Happy to share experiences on where I have got to if that would be helpful. My first follow up scan is in June.

I had also asked about the aspirin option in case that is proved to halt growth - and months later I am still waiting to hear my consultant's view on whether it is worth a shot or not.

Suzanne

[Rash132]

Hi Suzanne,

I've just read your post.  I've been avoiding reading anything about AN as I found the more I read the more I got consumed by it and worrried about it.  I too got an consultation from Dr. Luxford at House Clinic.  He said in my case its a 50/50 chance whether my hearing would be preserved.  And the cost would be 50000 dollars.  My insurance will not cover medical treatment abroad.  Did you manage to get a econd opinion? 

Things have moved on a bit for me.  I have had an pre-op at Manchester and now await my date for translab.