mum 65, just diagosed with large AN pressing on brain stem

[claireb]

Hi all, I am new here and I am really glad I have finially found a forum about AN. My mum has been diagnosed with having a large AN pressing on her brain stem.  Let me start from the very beginning. From about a year ago, she had been complaining that half her tongue felt numb and that she couldn't taste properly.  She also had ringing in her ear, so she went to the ENT doc who did not find anything alarming and gave told her that she might have a vitamin deficiency so he presribed vitamins (?) to her and obviously her tongue remained the same.  she went back to him as her hearing was getting weak in one ear too.  he told her that her hearing was getting a bit weak, re her tongue , he didn't prescribe anything.  at this stage she started to feel a bit out of balance, so he prescribed her with balance water pills which, once again did not work. at this stage she started giving up on the situation then from about 5 months ago she started losing her balance quite alot. she's be walking and starts bumping into things and she felt like she wasl walking onto one side.  so she went to another professor who suggested a ct scan.  from the scan a small lesion could be seen, so an mri was performed.  when my parents went for the result of the mri, my sister went with them ( i just had a baby and i had no one to leave her with, so I couldn't go).  anyway, the result was a large acoustic neuroma pressing on the brain stem and according to the neurosurgeon it  had to be removed as it is life threatening if it stays.  according to my sister, when he showed them the mri pictures, it was the size of a walnut so i am assuming it is large.  Now the problem  is here, we live in Malta, Europe and the nuerosurgeon who saw my mum has stated that in Malta they only get about 5 cases a year ( Malta is a very small island, hardly noticable on the map) and the cases they do get are usually not that large and complicated (pressing on brain stem).  so my mum has to travel to london.   all this has happened round about the end of april. about 2 weeks ago she got a phone call from the national hospital in london informing her that she has 2 options either to go up on the 24th June or the 23rd july.  she opted for the 24th June.  she is very scared and tense as we are too.  my main concern is this - from what the neurosurgeon told them, ( I was not there so I don't know the very exact details)  it is life threatening.  but then if is was, how come she got two options from london?   if she opted for the one in july, it would have been 3 months since the maltese surgeon told them the news.  if it is as large as a walnut, would they have waited 2 to 3 months from them to send for her? could it be that as the maltese surgeon doesn't have much experience in this field, did not want to commit himself, maybe it is not as large and dangerous as he explained it to us? i would also like to know please if when you see the actual MRi results, is the image to scale, i mean if on the picture it seems to be the size of a walnut, it is actually that size or is the picture enlarged for a better image?  I am sorry to be asking so many questions but we are all so scared of losing her.  since she has had the news of what she has, her moral as gone rock bottom, she can't be left home alone cause we are scared that she might fall and hurt herself.  she gets the occasional headaches in the morning, which i know are part of the symptoms, and the numbness is not only in her tongue now but on half her face.  my biggest concern is this - is there a big chance that she will pass away during the operation, considering her age and the positon the AN is at?  we have been told that there is a chance of facial paralysis too but we are all willing to accept that as long as she comes back.  we love her so much and all this seems so unreal.  Any experiences will be greatly appreciated.  Thanks.

[ppearl214]

Hi Claire and welcome.  You have reached out to a terrific AN support thread and as much as we hate to see you (and your mum and family) join us here, know that we are thrilled that you did.

There are some wonderful surgical centers in London and I do believe, from what it sounds, that your mum is in great hands. I know of many AN'ers here that are based in the UK, so I'm hoping they chime in with thoughts and such from a London standpoint.

Waiting until June 24th should be fine.  This will give you all time to organize your travel plans (and local stay in London).  I am not her doctors but the 3 weeks should be ok.  Typically, AN's tend to grow slow (for many, but does speed up in growth in others). As you know.... with any surgery, there are risks involved.  If you all are comfortable with the surgeon, his experience, his bedside manner, etc.... that is what matters.

I know the next 3+ weeks will be tough on your emotions.... and know we are all here to help you all get through it......I send my thoughts and wishes to you all during this time.... and know that we are here for you.

Please keep us updated...... we will be thinking of you all during this time, on the 24th... and after.

Phyl

[Joef]

A walnut size really is not that large... we've had people here with baseball and grapefruit size tumors.. (MRIs looking like more tumor than Brain!) .. but you are wise to take her to London , the more experience the better ---  but don't feel rushed.. these tumors are "usually" slow growing ...and please let us know your progress!

ps (I'm not a doctor!) ...

[marg]

Hi Claire,   
     This is a great site.  You should get lots of information and help from the Acoustic Neuroma (AN) 'veterans'.  I just had surgery less than 3 weeks ago.  I do have some facial paralysis and balance problems but  I have high hopes that they will get better with time.  I am feeling much better at this stage than I ever thought I would - I just came in from sweeping off our deck in the back yard.  The first week after surgery was the toughest but with family support your mom will be great.   
      The main thing I did was  ask the neursurgeon how many of these he had done.... and how often he does them.  My surgeon does 70-100 a year and has been doing it for over 20 years (in the state of Oregon).  I am sure there are great Neurosurgeons in London.  My tumor was smaller than your mom's but the great thing is that they finally found out what her problem was and it can be taken care of.  I hope the neurosurgeon told your mom that this is kind of tumor is not the cancerous kind (which is a great thing!). 
     I will be praying for your mom (and your whole family.... my family was very worried too).
Margaret

[Boppie]

Claire, I was 64 when I had my AN removed.  I was told it was considered large sized since its end was touching the brain stem but not crowding it.  I had no other complicating health problems and passed a stress test for the heart.  I have low blood pressure.  I was approved for surgery but still had to sign all of the documents that we agree to live with in our system.  Yes, I thought about the possibility of stroke during or after surgery, but I went ahead.  Yes, I was very scared.  I had a two doctors who were well experienced in brain tumor neurosurgery.  They had done many AN's.  "Life threatening" could mean she shouldn't wait to let it grow.  I was told the same thing.  But I believe that is a neurosurgeon's way of saying "This is serious enough to get it done soon."  I don't wish to be political nor persuasive about surgery or not.  It sounds as if you know what is going to happen, but have many questions yet unanswered. 

The MRI is not to life size proportions.  It would glow in the brain space and inner ear canal and look quite impressive on an unmagnified MRI.  More importantly the "walnut" has a measurement in millimeters.  You could ask for this detail and you'd know more.  Here in the states we get the measurement by asking the doc and/or looking at the radiologists paper report. 

My prayers are with you and your family.  Moms are sturdier than you know.  She needs to know everyone there is with her in this journey and that she has done a wonderful job to raise such caring children.

We are looking forward to hearing more from you.  I would take your Mom to London for the surgery for sure.

[Jim Scott]

Hi, claire:

So sorry to read about your mums predicament but glad that you found this very informative website (and this forum).  As you can see, we've all 'been there' and do understand the emotions your mum and her family - you, included  - are going through, now.   Receiving a diagnosis of an acoustic neuroma tumor is always a bit frightening but knowledge can allay some of those natural fears.  You can obtain that knowledge  here.

Your mum appears to be in good hands and a 3-week wait for her surgery doesn't sound unreasonable, if that is her best option.  While any major surgery carries inherent risks, AN surgery has it's own specific risks-  but most can be minimized with nerve monitoring and a skilled surgical team. I'm going to assume that in the U.K, as in the United States, she'll be tested for heart, lungs and other important functions, pre-surgery, to insure she is healthy enough for the surgery to performed with reasonable expectations for a successful outcome.   

As for your mum's age (65), not to worry.   I was 63 (and in otherwise excellent health) when I had my large AN 'de-bulked', then underwent a 5 week series of low-dose radiation treatments to kill it's DNA. According to my last MRI scan (late April) the remaing tumor appears to be dying, as planned. Now, a year 'out' (of surgery), I'm doing splendidly and about back to normal in almost every respect.  Of course, no one can guarantee the outcome for any patient undergoing any surgery, especially surgery that is as specialized and delicate as acoustic neuroma removal. However, the mortality rate for AN surgery is less than 1%, which should be encouraging to you.

I went into my AN surgery with almost no real worries and came out of it pretty much 'intact'.  My pre-op symptoms dsisappeared and I steadily improved over time.  I trust your mum will have a similar experience.  Remember, on this forum, we're not doctors but we do have valuable information we're willing to share.  Please come back as often as you feel you need to. 

Our best wishes to you and your mum. 

Jim

[Rc Moser]

Sorry to hear about you mum, as stated usually the tumors are slow growing, she probably had it for 10 to 15  years. Her case history sounds just like mine. I went for a long time with ringing in the ear, only when migraines, balance, and facial numbness occured along with taste, togue, and gum feeling gone it was found.  Doctors said mine was proabably atleast 15 years old. I think back and my first thing that I couldn't explain was my left eye drooped for about 3 months. This was in 1987 and I had 4.5 CM removed in 2003.

IMO when the tumor grows alittle it presses on the some of the 12 crainal nerves, IMO this is when you get the symstoms for awhile and then they seem to go away for a bit till the tumors starts pressing on them again. As far as the two dates it takes a team effort usually as many 4 specialists doctors to preform this operation. Some are quite long due to the stickiness of the tumor on surrounding nerves an tissue. So, it ususally take time to schedule getting a team togather. My operations lasted 18 hours, this will probably drive you crazy in the waiting room, I know it did my wife to go hours with no news.

I went throught the same feelings, once you find out you have a tumor you want to get it removed. The size of a walnut would be considered large, proabably about 3.5 by 3.5 CM's just by guessing, they can actually measure it off the MRI picture.  Only thing I can say is usually as stated above the actual operation in not that dangerous, IMO it's what the tumor is stuck to and how hard it is to get off the nerves, Usually the facial nerve is streached and it will usually go limp for quite awhile after the operation if no damage had occurred either by the tumor or the removal process.  usually most of us are left with facial paralization and ringing in the ear you don't have, most suffer from headaches for quite some time after. So IMO things will probably never be back to normal for your mum.  I hope the best and it will be stressfull times for awhile, hopefully mum will get throught this and be back to normal by the fall.

[claireb]

Hi all,
I would like to thank you all so much for taking time to answer back to me.  I feel a bit more reassured now and even though you are not doctors, you all speak from first hand experience which is the best advice one can get.  I really do hope things turn out well for my mum, as I mentioned her admission date at the hospital is on the 24th June.  My biggest regret is that I will not be going up with her (my dad and sister are).  reason being is I have a 6 month old baby girl who I am breastfeeding still and I don't think it will be a good idea to go up with her ( my baby) there, plus I have a 4 year old girl too.  We will leave everything in God's hands - so thanks once again for all your support.  I will be keeping you updated of the happenings. 
Claire

[marg]

Claire, 
    Know that many of us will be praying your your mum and your whole family.  I am writing her surgery date on my calender... and I will ask others to pray too.
Margaret

[HeadCase2]

Claire,
  Sorry to hear about your mum's diagnosis of having an AN.  I wanted to add two things to the notes from others above. 
  Most MRI "pictures" have a scale along at least one side.  And MRI viewer software, were you can look through the MRI slices on a PC, usually has measurement capability that aloows you to click on one side of the AN and draw a line across to the other side, and it will indicate how long the line is.
  I sometimes hear about AN patients that take steriods, during the pre-surgery period, to help prevent swelling around the tumor that is causing symptoms.  Since your mum has symptoms of the AN pressing on nerves, it may be worth asking her doctors if steriod treatment would help preserve her nerve function until surgery.
Regards,
  Rob