newly diagnosed and confused

[hannie]

Hi all,

I'm 24 and have just been diagnosed with a 1cm AN on the left side. This site looks great, the British equivalent doesn't seem to have much info or people who have gone through the various treatments.

The neurosurgeon i've seen wouldn't recommend a course of action and has pretty much said i need to weigh up the pros and cons and come to my own decision. I don't like the idea of just monitoring this thing - i want to take action but I'm a bit confused about treatment options and was hoping you could give some advice. I have minimal hearing loss on this side and few other symptoms. The surgeon mentioned a risk of epilepsy with the surgery but i cant find any info on this. Any advice? 

Hannie

[ppearl214]

Hi Hannie and welcome. I am glad to see you here. You are noting the BANA website... I see from your profile that you are a "Yorkie" (Sheffield)! My mother's family is from Sheffield and Leeds. Husband is also from the UK (Darlington and Shaftesbury-Dorset)

 We have many here from the UK that can assist with local facilties and treatment options available (esp. with NHS). I know of some that travel towards Central London for treatments... I'll let them make the recommendations. Tony will hopefully chime in soon.  He's has wonderful insight into local treatments there.  Others do as well... will keep an eye open for them.

Try doing a "search' option here for the UK or London or such as well. That will help you see many of the discussions that have already taken place. You may find something of interest.

Again, welcome.
Phyl

[leapyrtwins]

Hi and welcome Hannie -

if you don't want to watch & wait, your treatment options are basically surgery or some kind of radiation (either gamma knife or cyber knife).  There are side-effects to both surgery and radiation. 

I have never heard that epilepsy is a side-effect of surgery, but I guess it's possible.

Jan

[Jim Scott]

Hello Hannie and welcome:

I'm pleased that you've found this site and the forums.  I don't usually make a habit of disputing licensed physicians on medical issues but I have to tell you that I seriously doubt your doctor's statement that acoustic neuroma removal surgery causes epilepsy.  He may have heard or read this story about London Symphony Orchestra trumpeter Ron Franks that ran in the the Times a few days ago.  http://www.timesonline.co.uk/tol/life_and_style/health/article4787232.ece

Note that at the end of the story, Simon Crompton queries Professor Michael Gleeson about acoustic neuromas.  Crompton asks: "Is Rod Franks's epilepsy linked to his brain tumour?"  Professor Gleeson replies: "No.  Epilepsy can occur later in life for many reasons."

I found that interesting.

Your AN is small enough to at least consider non-invasive irradiation treatment but of course you need to consult with physicians on that possibility.  Your doctor was correct about one thing.  Ultimately, the treatment (and physician) you choose will be your decision.  To arrive at an informed decision, do the research.  This website and the ANA info packet are excellent sources.  The internet has many AN sites that can be informative.  Don't overload, but do sort out the facts.  Feel free to use these forums as a resource.  We're not doctors but we have enormous, cumulative practical experience in acoustic neuroma treatment and symptoms.  We want to help. 

As has been stated: we have some very knowledgeable U.K. members that will eventually see this post and respond to it with information on British facilities, doctors and the intricacies of the NHS.   Check back often.

I wish you success in your quest for information and, of course, a successful outcome to whatever treatment you chose. 

Jim

[hannie]

Thanks for all your responses i really appreciate it. Its amazing how much more positive i feel about this having seen so many people have positive outcomes, and cope tremendously well when the outcome has not been so positive.

The mention of epilepsy is in the written info the hospital gave me and refers to the middle fossa approach. It doesn't say what the risk is in relations to a percentage though. I'll try and find some more info on this and let everyone know.

Hannie

[MAlegant]

Hi Hannie and welcome,
It's good that your AN is small.  You have the luxury of time to get a second and third opinion.  Funny, my doctors were all pretty eager to recommend a treatment. Maybe it's the US/UK difference?  I'm glad you found us; you will get more information and support from this site than you can imagine.
Stay strong,
Marci

[dufreyne]

Hannie:

I'm sorry you were diagnosed with an Acoustic Neuroma, but happy for you that it is benign.  I understand the initial confusion and desire to "get this thing out", but I would caution you to take some time to research your options.  No matter what you ultimately choose, you will be happier if you feel that you weren't forced into it and that you really made the choice on your own terms.

With respect to the risk of epilepsy, it is very small.  Only with middle fossa approach.  One study I saw had 800 patients enrolled who went through middle fossa surgery and only 1 patient experienced seizures. That patient was treated for 1 year with an anti-epileptic medicine (I think Dilantin) and then was taken off the medication with no recurrence of seizures.  Based on the size of your tumor and current hearing I would say you are in a good position to research options.  Do you know if the tumor is entirely within the canal?  Does it reach the lateal end of the canal(the fundus)?

Dufreyne

[cathyW]

Hello hannie, sorry for the late reply.
I to am from the UK, after the MRI scan the ENT Doctor advised me of the different treatments and that I would need to make the decision, but when I went to the neurosurgeon, as I said in a earlier post, this was taken out of my hands, but then I did have very poor hearing in my AN ear. I know all NHS practices are different. Have you a second appointment with the neurosurgeon? I only had the one appointment before I was recommended to the board for surgery. Nothing was mentioned about epelepsy.

take care
cathy

[hannie]

Cathy - Thanks for getting back to me, its great to talk to someone else dealing with the nhs. i'm glad to hear you are recovering well from your surgery.

I've had one consultation with a neurosurgeon and an ENT surgeon. They told me to think about my options (GK middles fossa or wait and watch) and let them know what i want to do at our next appointment at the end of october.

I've emailed the neurosurgeon with a list of questions based on all your posts and my reading so hopefully i'll be able to make a definitive decision soon.

Dufreyne  - thanks for your comments on the risk of epilepsy. That sounds quite small. I'm a bit more reassured about that aspect since failing to find any data on this. I'm guessing from this (and the fact that all you clued up people on here haven't heard of epilepsy as a risk factor) that the risk is quite small and feel reasured about this. 

Thanks

hannie

[joebloggs]

Hello Hannie,

I too am newly diagnosed and confused - and from the UK (Cambridge).  Hurrah!  I saw my Neurotologist two days ago (see - very newly diagnosed!) and he did mention the risk of epilepsy with middle fossa (I think it's something to do with the brain being retracted, but I could be wrong, there was a LOT of information coming my way!...but epilepsy was definitely mentioned with regards to the middle fossa approach).  The surgeon was really lovely and answered all my questions.  I was with him for over an hour - perhaps you could ask to be referred there for a second opinion - helps to have all your bases covered - particularly as it's all NHS - you might as well make use of the service after all, you pay your taxes!  They have a website with lots of q&a's - it might help you?:

http://www.addenbrookes.org.uk/serv/clin/surg/neurotol_skullbase/acoustic_faqs1.html

Hope it helps!

[hannie]

I'm sorry to hear about your diagnosis. I hope you'll find as much help and support here as i have done. I think the first week after diagnosis was such a blur its only recemntly started to sink in - i spent the first few weeks trying to calm down and reassure my family!

I'm glad you've had a good experience with the NHS - a whole hour  i only got ten minutes and a leaflet!! I've been badgering my surgeons receptionist (poor lady dreads hearing my voice!) and i've managed to get another appoinment with the neurosurgeon to discuss treatment. I'm really glad about this as i've got a doctor friend to come with me with a big list of questions and a notebook and pen. I considered taking a dictaphone then remembered i wouldn't be able to hear it playing back too well - duh! 

Based on how things go with this neurosurgeon i'm considering getting a second opinion. I spoke to an ENT consultant last time i went (even though the appointment was suposed to be with a neurosurgeon  ) and found him a little dismissive. I think he forgot that this was big and scary for me even if its an everyday occurance for him!

Strange that you and I as UK patients should be warned about epilepsy when the US patients don't seem aware of it. I wonder if there's a difference in the way the surgery is carried out between the countries?! 

Have you considered what treatment you will have? The doctors seem very reluctant to recommend any one course of action for me.

good luck with your treatment. I wish you the very best - keep us posted

Hannie

[Roger64]

Hi Hannie,

I am in the same boat but I've made the chose of surgery. I am getting it done on the 30th so I can give you a blow by blow action of my recover.

Roger

[MaryBKAriz]

Hi Hannie,

I am sorry you have gotten "the news". We all remember the day we heard the news. The best thing is that you have found this site. I would really look at all your options and do your research. My doctor did as yours by letting me choose. While it is hard work learning everything you can, in the end you will be so glad you did your homework and considered every option. You won't regret it, that much I can assure you.

A big hug to you.

Mary