Hi, I'm writing to hopefully get some advice on how best to support a friend who's just been diagnosed with a 9mm AN.
To give some background, he's been suffering hearing loss and balance problems for almost a year but put them down to a persistent ear infection, something he'd been following up resulting in the AN diagnosis.
He had an MRI scan, ostensibly to identify any problem in the ear and was told they hadn't found anything, but had noted some benign growth - as if this was an unrelated issue and nothing to worry about but should be monitored.
The Dr told him this over the phone, but then when the follow-up letter arrived which mentioned a 9mm AN some Googling resulted in the words 'Brain Tumour' - plus all the symptoms he'd been suffering from were precisely those of AN, but the possibility of AN or explanation of what AN is and the various treatment options hadn't been mentioned to him at all.
As you can imagine, it was quite a shock...
I've been focussing on the positive with him but would really appreciate some advice as to the best way to move forward...
From an afternoon's research we've come up with the thinking that earliest treatment could potentially provide the optimum result - ideally non-invasive, to stop the tumour developing further - as I said it's currently 9mm.
All help and advice as to how best to support my friend and guide him to move forward in the best possible way would be hugely appreciated...
Thanking you for your help and understanding - Thank you...
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Easebak
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9mm is still small. The professionals may well suggest a wait and watch approach. These AN lessions do not grow very fast - about 1mm a year. My 24x21x19mm AN was surgically removed because I am a very small woman and 24mm was very big in my small head. But 24mm in a man size head is not considered big. I suggest that you wait until your friend has spoken to a specialist and then help him to explore possible solutions. In the mean time check out the information that is available online. Try not to read the 'doom and gloom' reports. Unfortunately those of us who come through the treatment with no problems tend not to go online and write blogs or reviews - we just get on with living our lives. Best wishes.
Much appreciated Colbe - thank you. Great to hear you had a positive result, and yes, consultation with a specialist will hopefully help narrow down options to achieve an optimum outcome. Many thanks for your positive advice, thank you.
You can wait and see, but it is probably best to deal with it before the symptoms get worse (headaches, tinnitus, etc.). The best approach is Gamma knife surgery (a few minutes of radiation) to kill the DNA of the AN so it doesn't grow further; some grow slowly and some quickly. I had a 15mm AN in 2002 that was dealt with with Gamma knife surgery in 18 minutes with no side effects. Unfortunately for me, it was too late. In December 2001 before it was diagnosed I had slight balance problems and perfect hearing in my left ear. By January 2002, I had lost hearing in that ear, severe balance problems, head pain and tinnitus. My point is, get it resolved as soon as you can; why wait for the inevitable.
Hi, I was diagnosed with a 9mm x 4mm intracanicular acoustic neuroma back in February 2017. Tinnitus started the summer before, I had a hearing test that showed slight high frequency hearing lost in the left year and a mri was ordered and the AN was picked up. I was put on watch and wait with another mri in Feb 18. Fortunately it hadn't grown and I now have another mri scheduled for 2 years time (Feb 20). It was a huge shock when I found out. As these are usually slow growing it may be years or never before treatment is needed. 9mm is classed as small. Hope this helps. Damian
Thanks Damian, glad to hear it hasn't grown. We're thinking along the lines of getting the situation dealt with before there's any further deterioration - need to weigh up the options. He's lost 80% hearing in the affected ear already. Really appreciate your reply - thank you.
I speak to you having had a 4cm (40mm) life-threatening tumour (stage 4 - classified due to brain stem compression).
I 100% agree with those advising to WAIT - indeed I am living proof. My consultant informed me they don’t get many at the stage mine was at. Albeit unintentional I played the waiting game & won. Any treatment on your brain is risky - knowing what I know now if I faced that decision again, no matter how big it was I would wait for the operation.
If your friend feels it would help to know about my experience; symptoms etc I’m more than happy to help. Too much to write, however I will provide my email address & if he feels he’d benefit in any way at all, email me a contact number & I’ll get in touch - unlimited calls so not a problem. Call probably best anyway, should he have any questions.
My advice at this point:
1) U really, really DON’T need to worry - you DO need to enjoy life. [That goes for u2 Easebak]
2) WAIT - ur consultant’s got ur back! He’s not talking to you re possible treatments etc because you don’t need any (at this point) and filling ur head with ‘Possibles’ at this stage (to me) is mental abuse.
Very best wishes
DRaws001
Email: d_raws24@icloud.com
N.B: ANYONE ELSE READING THIS & THINKS WILL BE HELPFUL, PLS CONTACT EMAIL ADDRESS ABOVE.
I totally agree with your views although in my case it was an emergency , my Ac was in 1988 , a 45mm compressing the brainstem and left me with a multitide of problems and this is 30 years later, mine regrew 3 times since the initial life saving op and again was told this is rare especially as I was only 21 yr old , how are you still coping ?
Thank you for your reply... Sorry my response has taken a while, struggle to compose/concentrate. It is refreshing & interesting to get your reply as not come across anyone in same boat (initially), my op was urgent as was compressing brain stem, to answer your enquiry as to how I am now... where to start!! I’m sorry u’ve had to go through a triple recurrence, I hope u have recovered well. I look forward to discussing the many issues i am experiencing. I’m thinking the problems you still have are as a result of your first tumour, do you? I also suspect you are as frustrated as me too.... no-one to discuss/compare symptoms & after effects due to the rarity. I’ve got to go now but I will definitely be in touch.....soon! Will be interesting to find out if we share after effects. It would be much easier for me to discuss via phone if that ok for you......can’t tell you how many times I’ve started this reply!!! Take care Freddy1000.
Hi thanks for taking the time to reply, I have learnt that not all An patients have the same symptoms, some massive variations , some make a full recovery some very difficult, as in my case , I could write an essay with what I’ve been through lol and still am to this day , but putting it shortish , my problems consist of some which I’ve not really come across usually with other stories from people apart from the usual complications of total hearing loss and palsy , the wierdest symptom is screeching when I move my eyes, I’ve since found out this is called ‘gaze evoked tinnitus ‘ along with the other tinnitus , but little is known of it , it drives me mad .
Others symptoms are , slowness down my right arm and in my fingers making dexterity difficult so I have learned to use my left hand for finer tasks even tho I’m right handed but even if I try to do anything which requires concentration and hand eye co-ordination I get the shakes down my neck and arm , I have trouble swallowing on one side , and my balance is still horrendous , can’t taste on one side of my tongue, it’s exactly half of it , same as the numbness in face , exactly half my head/face , running from the top of my head down my forehead, nose to my chin and neck .
I still get extremely tired very easily and need to just switch off , I retired medically 4 years ago and that had helped a lot as I now go with my pace and not at others wanting .
There’s still more I could put but for now I have to go , I’d love to speak but can’t really as i have problems with hearing on the phone I can’t hear very well in my ‘good ear either ‘ if I can call it that lol ,
Many thanks for your reply, I really feel for you and can relate to most of the symptoms you spoke about; I had numbness/taste problems prior to op, following surgery symptoms relieved (mostly) right side of face still has slight numbness. I have tinnitus still but now I also have a strange horrendous noise in my head, don’t think connected to my eyesight but who knows! Slowing down/tiredness is stil hard for me & frustrating. (I have neck/lower back issues, not related to tumour however my surgeon is planning operations in both areas, one benefit of my tumour, for which i am grateful).
Cognitive issues in abundance & so clumsy! My employer is looking into early retirement as I speak, Ian awaiting an appt with Neuropsychologist re cognitive issues.
Totally get the ‘going at your own pace’ I find it eases the frustration a little. Time is not meaningful to me now, am ‘hours’ late for anything.....embarrassing to say the least!
I think similar symptoms due to b/stem compression as all areas/nerves effected in some way (discovered this just before your reply which kinda confirms it) You have suffered for a lot longer, my op was in 2015. I thought all ANs were slow growers until reading your post.
I can only imagine how you felt hearing it had returned once let alone 3 times! You ‘beat the buggars’ though and thankfully still here - amazing, well done you! A fighter for sure.
Oh dear, think my ‘time stealer’ has been.......again!
Bye for now Colin, thanks again for your reply, take care & Be Lucky.
Thanks for the reply Dawn, it’s strange as you say you say you have neck and lower back problems as I have the same issues as well , again I don’t think it’s linked but that’s uncanny that is , it’s been nice to talk to you about this illness and I take my hat off to you and anyone who has had to to deal with fallout from it and try and move forward, it’s difficult to say the least , I hope you get your retirement sorted and live your life as you want to in the best way possible, take care and keep in touch every now and then on your progress . 😊
Many many thanks DRaws001 - apologies for not posting this as a direct reply previously, it was posted as a separate response, so I'm reposting now. We really appreciate your offer of ongoing help and advice. At the moment it's early days and we're just integrating information and assessing the landscape. Great to get some perspective based on previous experience. The initial meeting with the consultant hasn't happened yet but should be soon. Thanks so much for highlighting the benefit of minimising stress and maintaining a positive mental attitude - totally agree - for now, that's just the ticket. I'll pass on your email and very kind offer of assistance. Thank you.
I was diagnosed with a 20mm AN in my left ear 1 year ago. I had been having tinnitus, hearing loss and balance problems for 2 years before that. I saw a specialist in Paris in July last year and he recommended that I did a MRI every 6 months to see how it grows. Last February I had another MRI and the AN had grown by 1mm. The doctor told me to come back in September this year. Meanwhile I have been wearing hearing aids with much success and on the recommendation of my doctor. He advised that if the AN grows by another 0.5 - 1mm then I should consider Gamma Knife before it’s too late for that procedure. I do not want to go through surgery as the big disadvantage with that is complete hearing loss. I shall have more news after I see my doctor in September. I hope this helps
Really appreciate your reply Arnaud. Now my friend's got his diagnosis all the symptoms are understandable - we just, like yourself, want no further deterioration if at all avoidable as it doesn't seem like any of the symptoms are reversible once treatment's been done. Hoping next month goes well for you, and thanks very much for the hearing aid recommendation - thank you.
Hello-thanks for your post. My cystic AN was 3cm, and a compressed brain stem made surgery, I was told, fairly urgent (balance, headaches, pain, facial and eye twitching etc.). This was followed by Gamma as the tumour involved several nerves and couldn't be removed totally during surgery. However, my surgeon used the retro-sigmoid/sub-occipital(?) approach, going in behind the ear rather than through the ear canal (translabyrinthine approach?), to try to conserve some hearing. This worked. I still have some hearing on that side, and have just got a new hearing aid, which helps in some situations. There is a Tinnitus Clinic run by UCLH at the London Hearing Hospital which may provide some useful information on tinnitus too.
Hello, please see my reply to Arnaud above re. the retro-sigmoid/sub-occipital surgery to conserve hearing, which worked in my case to a great extent (it was balance and other problems which lead to discovering my AN, rather than hearing loss). Keep a note of all your questions for your next appointment, and trust in your consultant's experience once your questions have been answered. If you aren't happy with your GP's handling of things (a telephone call to give the news wouldn't be the most re-assuring approach, most of us might suspect) then make enquiries and move GP if necessary. Having faith in your doctors is fairly key. Perhaps also encourage your friend to look into meditation. I found it hugely helpful in helping me maintain a feeling of control, and I was the last person in the world to consider meditation. "Headspace" is a very down-to-earth approach that works for me. Best of luck. Isn't life interesting?
Many thanks Anan88 for detailing the procedure you went through and so glad to hear that they proved successful. We'll get familiar with the terms you've used so as to get a greater understanding of options available. Yes, to date it doesn't seem that there's been full transparency from the Drs and that's something which will have to change; hopefully when he sees the specialist and goes in with an open mind to hear what's being suggested, coupled with detailed questions as to available options, the specialist will be more open, interactive and helpful than the previous ones... Really appreciate you highlighting the need to 'maintain a feeling of control,' yes, he certainly doesn't want to get swept away by it all which is why getting feedback of others' current and previous experience of the same / similar issues is so helpful and supportive. Really appreciate your help - thank you.
The more I read comments from people who have dealt with AN, as my husband has, I realize that every case is quite different and each will have different parameters. In my husband's case, he determined that he was 65 and in good health and waiting could possibly result in his being older and perhaps not in such good health. Therefore this may be the optimum time to do it. Choosing a method was fairly easy as he had so much hearing lost in his right ear, no need to do the more elaborate surgery to preserve 10% hearing. So he, with the advice of his surgeons, chose the translabrynth method. It took 9 hours. We feel he made the right decision. AN totally gone, tumor didn't have a chance to grow further into brain stem and other than yearly MRIs over the last 5 years showing no growth, he has had no further treatment. Whatever course of action your friend decides, it will be based on his individual circumstances. The best news is ANs are not cancerous and your friend can choose the timing and method best suited for him. Do a lot of research on the physicians you will use. We used top surgeons in Miami and feel that was critical to his excellent surgical outcome.
Many thanks Margielyn, apologies for the delay in posting as a direct reply, I posted previously as a separate post so am reposting this here now. Thanks so much for sharing the elements which went towards your husband's choice of treatment option, and great that there's been no further growth / treatment needed - perfect... Yes, indeed we should get some background on the surgeons who might be potentially involved; thanks for flagging this up. Really appreciate your help and advice - Thank you.
Hi I was suffering from really bad headaches my face started to go numb down one side also had problems with balance .I was diagnosed with AN 28mm I had mine debulked 2 years ago headaches stopped and balance got better .I have dry eye and a slight droop in my face .apart from that I feel fine and the main thing I'm here to tell the story
Many thanks for replying 6625 - so glad to hear you that your situation has improved; great! I’ve two questions if you’d be so kind: How was the ‘debulking’ done, and have you suffered no hearing loss...?
Sorry yes I lost hearing in right ear. Debulking was done by them drilling into the tumour as surgeon explained he told me to imagine a Orange he would still through the peel n remove as much of the inner he could .as you can imagine I was petrified it was long operation I woke up n actually thought they hadn't done it until I moved head n felt all the padding.
Many thanks for the update. Yes, I can imagine, such a procedure would be very challenging... So glad to hear it gave an overall positive outcome - Thanks again for taking the time to share. It seems as if hearing in the affected ear seems to be in the direct firing line with or without treatment...
I had a 15mm AN that was completely resolved by gamma knife surgery; the only symptom that got worse after surgery was my balance, which I don't attribute to the surgery, just a deteriorating condition in my cerebellum that I resolved with my balance exercises. Your 11 mm AN is going to grow whether you like it to or not and your symptoms will only get worse. The sooner you get the gamma knife surgery the better; I wish that I had known when mine was only AN 11 mm, I would have saved most of my hearing in my left ear.
Thanks Dean, the issue is that he had a consultation with a specialist yesterday who said that due to the positioning of the AN on the nerve that loss of hearing was inevitable with or without treatment. The specialist also said that in 80% of tumours like his that there would be no further growth (so why the loss of hearing...?). He was actively encouraging watchful waiting. I'm suggesting getting a second opinion. Your views would be very much appreciated...
What "tumors like this" is he referring to? And as you said, why the hearing degeneration if the AN (i.e., the myelin sheath schwann cells surrounding the 8th cranial nerve) doesn't grow and squeeze the 8th cranial nerve?
If the AN is in the tight bony vestibule going from the brain into the ear it is more technically a vestibular schwannoma (my AN, which was scheduled for GK surgery within weeks of reviewing the MRI) where growth beyond 12-15mm will crush the nerve and blood supply to that inner ear, destroying your balance and hearing.
If the AN is at the other end of the 8th cranial nerve it can affect your mid-brain area; not good but less probable.
Anywhere else along the nerve it has less immediate repercussions, even if it is a few centimeters, unless it affects the facial nerve, which is not good but less probable.
Thus, you need to know exactly where the AN is on the 8th cranial nerve before you decide to either "wait and see" or get gamma-knife surgery. You might want to review your MRI scans with another ENT or surgeon to be sure. Unless you will be paying for the surgery yourself (without insurance), waiting may not have much meaning.
Thanks for the further detailing Dean. Yes, the precise positioning needs to be focussed on, plus further clarification given as to why he was told that total hearing loss in the affected ear is inevitable with or without surgery; seems to me like a 'worst case scenario' rather than the optimum outcome (which the surgeon should be aiming at / working towards...). A second opinion is needed and is in the process of being arranged. Many thanks Dean.
Assure your friend that the tumor isn't cancerous. Also, since my husband had his removed there are even more options. In addition to actual surgery, there is the Gamma Knife therapy and Proton Beam Therapy. There is also "watch and wait" depending on the size of the AN. Another consideration could be where the AN is located, which may help you and your doctor make decisions. Most importantly, encourage your friend to seek out doctors who specialize in AN and have multiple patients. While hearing that one has a benign brain tumor can be scary, there are many, many , many successful outcomes!
Thanks Margielyn - yes, the optimum route to a successful outcome is precisely what we're looking for. A second opinion is being sought to clarify how best to move forward. Really appreciate you taking the time to reply. Thank you.
Thanks for the advice, but it seems like the Drs have decided (and won't be moved) on course of treatment - waiting to see if the tumour grows, following up with Gamma Knife if it has. Next MRI scheduled for March. Drs wouldn't even approve a second opinion with a separate trust which offers CyberKnife; you'd think they'd be okay with a second opinion request just to verify that the treatment options they're suggesting are the best course of action, but no... We had wanted immediate treatment to avoid any further deterioration but they said they wanted to monitor if there was any further growth before moving forward with treatment, and as I said, they won't be swayed...
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Newly diagnosed with AN
Small Vestibular Schwannoma
How were you diagnosed?
Husband diagnosed on monday
Diagnosed today with an acoustic Neuroma.
