Hi! From a new member to the club

[Mark_UK_73]

Hi everyone

I have been reading the posts on this site now for a number of months which have been so helpful and encouraging, but have only just registered as a member.

I was diagnosed with a left-sided AN in February of this year.  It measured 10mm x 8mm.  Symptoms were high-frequency hearing loss, some tinnitus and the occasional very slightly drunk feel.  My neurosurgeon recommended surgery and poo-pooed GK as I was too young, the fact I will need to have MRI scans for the rest of my life, the fact it could turn the AN into cancer and that if GK didn't work then surgery would be more difficult.  He must have seen my shell-shocked face as he said that I could wait six months and have another scan to see the growth rate!  Well I have my next MRI on 18 September and follow-up appointment with the neurosurgeon on 6 October - where has the last 6 months gone! 

I have been through all the huge roller-coaster of emotions as the year has progressed and having read many similar posts on here am glad that none of my emotions is really any different.

I have lurched from deciding on GK to surgery and back to GK again!  Its such a hard decision and potentially life-changing, I can see why people find it such a relief to actually make a decision and have a particular form of treatment.  Its also really hard to think about making a decision contrary to what a doctor recommends as we are so used to just trusting what one doctor says as being the final authority on the matter.

Its an honour to become one of the AN family on here and I look forward to getting to know you better.

Mark

[tenai98]

Hi Mark and welcome to the forum
Making a decision is difficult.  the way my ENT put it to me....surgery removes the tumor while radiation abates its growth but remain inside the head...and I was to use that as a base foundation to build my research on and deciiding if I could live with a freeloader inside my head...I battled back and forth...At  first I was dead set against surgery...Then after much sould searching, it was my chosen path...
Again welcome to our family
Joann

[sgerrard]

Its also really hard to think about making a decision contrary to what a doctor recommends as we are so used to just trusting what one doctor says

Yes it is and yes we are.

At the symposium in August, we all got to watch a panel discussion and see 5 doctors disagree about what course of action was best for certain patients. They agreed on some cases, but not all. The best recommendation is to talk to several doctors. If you are looking at radiation, talk to an experienced radiation oncologist, or a doctor who routinely practices radiation treatment.

They will be able to ease your mind, at least about not being too young, needing MRIs periodically whichever way you go, not being statistically any more likely to get a malignant tumor, and that surgery more difficult does not mean outcomes any worse. I think your doctor covered all the myths.

Welcome to the forum, I hope you find it useful as you research your decision.

Steve

[Pooter]

My neurosurgeon recommended surgery and poo-pooed GK

I think this speaks volumes.  Your SURGEON recommended SURGERY and didn't like RADIATION.  That should tell you something about his bias.  LIke Steve alluded to, I think you'd get a different story from experienced radiation oncologists.  When I first read your post, my first thought was "What do you mean he's too young?"  And, "But, radiation doesn't necessarily turn a tumor into a cancerous one."  And then finally, "But, surgery after radiation makes it more difficult, but outcomes generally are the same.. so, more difficult doesn't mean worse outcome."

Do your own research..talk to several doctors (both surgeons and radiation oncologists)... you will arrive at a decision that's right for you, for your situation, for your life, for YOUR tumor.  None of us here will try to steer you one way or the other, only provide our experience as a source of your own research.

Regards,
Brian

[Vivian B.]

Hi Mark,

Welcome to the forum. Making a decision as you see is not easy as there are risk factors with both types of treatment. Howevver, remember that overall sucess rates have been very good with both surgery and radiation. The emotional part gets better. Some days will be overwhelming, but it's o.k. Give yourself time to digest what is happening as this is not an overnight thing to deal with, but patience, positive thinking and belief will get you there.

Vivian

[leapyrtwins]

Hi, Mark.

Welcome to "the club" 

Jan

[madison]

hi mark!
i had gamma knife treatment a year and a half ago and i am only 38(almost)
i decided to try to kill the tumor or possibly shrink it before moving on to brain surgery.
my symptoms include tinnitus and sometimes "wonky" headedness. my next mri is in october and i guess we'll take it from there. please feel free to ask me any questions you'd like. take care of yourself and sorry you too had to be part of this club

[ppearl214]

Hi Mark and welcome.  Good to have you here and see that the gang has been on their best behaviour!

Have to ask about the "UK" portion of your screenname... you are in the UK? Where abouts? There are some great radio treatment facilities in C. London if you are near there for CK and GK.  I know GK is more widely used in the UK.

Many docs that are not truly familiar with treatments will try "scare tactics" to try to sway folks in one direction or another. In the case of the "cancer" scare.... yes... it can occur but I have more chance of being hit by lightening vs. my AN turning cancerous on me.

As others have noted.... do your homework. If you feel overwhelmed by it... take a step back..... we all need a breather from this from time to time.

We're here to help. Hang in there... and again, welcome.

Cheers!
Phyl

(btw, if you are from the UK... so is my bloke.  Darlington area and C. London. My inlaws are in Dorset)

[mimoore]

Welcome Mark,
You will find comfort here and a place to come and chat, when it is so difficult for your loved ones to truly understand.
Knowledge is power! Ask many questions and do lots of research, scary stuff but it does make you feel better when you understand some of the Drs gargon.
Michelle 
I have a cousin in the UK who is named Mark and was born in 1973. You didn't recently get married in Germany did you?

[DR]

Hi Mark.  Sorry about your diagnosis, but you have found a great place.

Like most folks here I am familiar with what you are going through.  First CK was the answer for me, then surgery, then GK, and now I am back to surgery.  My recommendation is the same as many above me - feel free to take a break for a while.  Heck, let me rephrase that... you have to take a break at times.  The amount of information available is overwhelming and so are the emotions.  Just remember, you aren't alone!

[Jim Scott]

Hi, Mark - and welcome.  I can't add much to the many previous posts but as my fellow moderator Steve, stated, your doctor covered all the radiation myths extant.  I won't bother disputing them because some internet research can show you that they're mostly baseless.  

My neurosurgeon debulked my large AN and worked closely with a brilliant young radiation oncologist to 'map' my subsequent FSR (fractionated stereotactic radiosurgery) treatments.  He had no hesitation about recommending radiation as a follow-up treatment to my surgery and he was dismissive regarding the myths about radiation, basically saying that he had never seen these things happen and that he wouldn't be recommending radiation for me if he had any reservations about it being potentially harmful.  This seemed reasonable to me as my neurosurgeon had 30 years experience treating acoustic neuromas and was highly respected by all who knew his work.  He was an adjunct professor of surgery at prestigious Yale University School of Medicine in New Haven, Connecticut, a top-ranked U.S. medical school.    

I'm certainly not a doctor and cannot credibly recommend a specific procedure to you but I would have to concur with other posters who've suggested you consult more than one (probably biased) surgeon on the best treatment for your relatively small AN.  Irradiation (GK) is well proven at this point and certainly worth your consideration.  Doctors are knowledgeable but they are also fallible and subject to bias and closed-mindedness, as we all are at times.  Treat their opinions with the respect they deserve but make your treatment decision based on your criteria and your instincts, remembering that the result of that decision, whether it's good or not-so-good -  will be lived by you, not the doctor(s) or anyone else.  

I look forward to reading more from you in the near future and I wish you success as you continue to seek answers to your questions and work toward a final treatment decision.  Whatever your choice, we'll be here to support you, Mark, rest assured of that.

Jim

[Mark_UK_73]

Thank you all for your fantastic responses.  It feels really empowering to have such a great bunch of people behind me, rather than facing it alone or with people who want to help but don't really understand what emotions I am going through.

Some of you asked some questions, so here are the answers (I think) to them.  I am 36 years old on Friday.  I live in the UK on the South Coast in Eastbourne.  No I haven't married anyone from Germany - or anywhere else for that matter 

Looking forward to keeping in touch you guys as my journey unfolds 

Love to you all

Mark

[Esperanza]

Hello Mark,
Sorry you have been diagnosed with one of these unwelcome intruders...  Mine is a little bigger than yours and I have been W & W for 21 months - I have been put off GK by everyone I have seen although they would have referred me to find out more for myself if I had wanted - had regular MRI's since to monitor growth and there has been none so far.
I do have various intermittent and permanant effects from mine -  the main being that it caused sudden and profound deafness in the AN ear (which led to it's diagnosis) with no forewarning which has left me with constant tinnitus.  I think you will come to realise what the best course of action for you to take will be given the relatively limited choices on offer in the UK.  I think you do sometimes have to be a bit bolshi (in a nice way of course!) to survive the system at times!  I am planning to have mine removed back end of next year - I would rather it was out as it does affect my quality of life in many ways.
I am sure you will come to decide on a care pathway which will suit you and then you can sit 'comfortably' with your choice - sometimes not knowing what to do is far worse..
My sister lives in Polegate  - you are so lucky to enjoy your microclimate down there...

[4cm in Pacific Northwest]

Happy 36th Birthday MARK!!!
I hope with the UK time delay this is not a belated greeting. Best wishes to you!

Signed you "new" ANA buddy

Daisy Head Mazy.

[wendysig]

Hi Mark and welcome to our group.

Since the welcome wagon has come out in full force, I don't have much to add.  Making the decision regarding treatment is definitely the hardest part of the journey in my opinion.  In my opinion, because your AN is small, a good doctor will recommend that you get information on all possible courses of treatment before you reach a decision, as mine did.  Understanding the pros and cons of each form of treatment is essential to making an informed decision.  If possible, see a couple more surgeons, and at least two radiation oncologiists, research on your own.  Your gut will let you know when you have enough information to make the right choice for you.  Please let us know what your latest MRI shows.

Good luck,
Wendy