New diagnosis of acoustic Neuroma

[Ayooshi]

Hello everyone, this is my first post since being diagnosed with a 13mm acoustic Neuroma. I was diagnosed last week and still trying to come to terms with this. I have been having a lot of symptoms for a while from pain in ears, tinnitus, some hearing loss on my left, where the AN is. But mostly vertigo, dizziness, balance issues, nausea, eyes not being able to focus properly, aversion to light. I have some facial palsy which has been gradual over a couple of years. I noticed my left side of face has dragged a bit down, and when I speak my left side of mouth is lower. I have been told by my audiologist to watch and wait and gave me another appointment in a years time. But I feel my symptoms are only getting worse, as small as the AN may be to others who have bigger ones. I was wondering has anyone went ahead and asked for the surgery when their tumor was this size? From what I have read, there’s a better chance to save facial nerves when the tumor is smaller, obviously depending on where it sits. I have a mri on Tuesday for their records, the doctor said, to cancel out cancer etc. But I just don’t know what to do at all

[Kristyll]

The symptoms are nothing to do with size, it depends where it lies. It’s not really any ones choice but yours. Go and discuss it. Good luck x x

[Ayooshi in reply to Kristyll]

Thanks for your reply, will the mri show where it lies? For a second opinion? How would I find out exactly

[Kristyll in reply to Ayooshi]

Ask to have the MRI RESULTS EXPLAINED TO YOU. Then ask if this causing these listed symptoms x x

[Ayooshi in reply to Kristyll]

Oddly my next appointment to see my consultant is next year January 2021! And I read later that ppl are seeing neurologists etc. I haven’t been offered any of this. Just wait for a year and come back for a mri and take it from there. And when I complained of my symptoms he just shook his head and said his advice is watch and wait

[Leodo]

Hi, totally understand your feelings, think the overall level of knowledge, advice, understanding, is very poor. Think just because it’s not cancer the practitioners feel that treatment should be a low key affair but some of the side effects can be high impact. I would not want any more watch and wait and would be pushing for gamma knife ASAP. Facial palsy can have a major personal effect and if you are feeling this already the facial nerve is being impacted. This should not be allowed to continue. When it is overstretched it is too late and it will not return. This happened in my wife’s case. She has since had gamma knife and also a facial nerve transfer to address the overstretched facial nerve. Hope this helps do not want to alarm anybody but really do not get the watch and wait diagnosis when side effects are already happening

[Ayooshi in reply to Leodo]

Thanks so much for your reply, I am very nervous about the gammer knife radiation, from the research I have personally done I feel like it isn’t for me or something I would be 100% comfortable with knowing the tumor has not been removed. I think psychologically I would not be able to deal with it. Can I ask how is your wife is now after treatment? And if she plans to go ahead and have the full surgery?

[Leodo in reply to Ayooshi]

Hi, again totally understand your feelings, think about and discuss with the consultant your options, surgery will probably not be able to remove the AN completely, if it is on or near the facial nerve there will also be associated risks. Think we would all love to just chop it out but it is rarely that simple. Gamma knife should kill the tumor and stop it growing any further. It may also then reduce in size. The wife is doing ok now, 2 years on the mri has shown a slight reduction in size but she has also had a shunt fitted to prevent increase in fluid and as said previously a facial nerve transfer. She also has regular Botox treatments to help with the non symmetric mouthline. It has to be your call just try and get all the knowledge and expertise to help with that call and as said make a nuisance of yourself do not accept watch and wait. Good luck

[Kristyll]

If your symptoms are worsening your GP can expedite your appointment. Have a word with him and tell him all you have said here. All the best x x

[Ayooshi in reply to Kristyll]

I will, it’s so hard. I have just moved house and new doctors too. My old doctors wouldn’t keep me on their books because I was out of their postcoded areas. It’s all so crazy right now. I revived a letter from my consultant which he had sent to my Gp and he even got what side the AN was! He said right side. But it’s on my left side!

[Kristyll in reply to Ayooshi]

My friend a female got a copy of a report to her GP and it referred to her as HE, all the way through so why am I not surprised?

[Soxyboy]

Hi Ayooshi. I had GKS on mine, because my AN was 19mm when it diagnosed and deemed too large for 'watch and wait'. However, the only symptom I had was tinnitus. You need to have the results of the MRI and have it explained to you, so that you can make an informed decision, and should be able to choose your options, as your symptoms are not just effecting your hearing. I feel that too much emphasis is put on how big it is and not what it is doing to you. Good luck.

[Bshems in reply to Soxyboy]

Hi there just wondering when did u have the GK and was it effective ?

[Soxyboy]

You should push for an earlier MRI scan

[Soxyboy]

Please ignore my last comment.

[Lois_Howell]

My AN was surgically removed 15 years ago 54 years old. My trigeminal nerve was being compromised by a 4cm tumour and the tinnitus was so bad that that I was unable to decode speech with my left ear. My surgeon, Prof Ramsden (aka God), sacrificed my eardrum which was already useless, to preserve the trigeminal nerve. 3 months on I was over the episode, discharged and life back on track. I was relieved not to be offered GK. You are never 'over it' completely, continual monitoring and living in fear of regrowth, more GK; just something I was glad not to have to make a decision about.

I wish you well, I was lucky to have private health cover. If you don't I'd be very assertive, exaggerate symptoms, use the phrase 'failing in your duty of care' etc. My GP wanted to give my anti depressants and steroids. Hope you get some action.

PS. Get your MP involved. How old are you?

[Kellyc in reply to Lois_Howell]

Yes they know it’s so hard to live with the T they push pills. I have a 2mm AN sitting in my hearing nerve so what they say is there are too many risks with surgery. What I don’t know is will it take the T away which is all I care about I have to think it will because the screeching is in the left ear where the AN is. Md says messing with it is very risky but the T is risky for your sanity!

[mountainbrown]

If you’re having symptoms and you want action taken, I would push for what you want. Yours is smaller so it should be easier to remove (however each acts differently). When I found out about my tumor, my symptoms started increasing. I asked about it. I think my doc thought I was being paranoid, but he ordered another mri for my piece of mind. It turned out to be a fast grower. I’m not telling you this to show we need to follow our gut. The symptoms are hard to live with. Do what’s right for you. My tumor was removed last August (2.5 cm) and was told it was removed entirely. I’m single sided deaf, which I’m trying to adjust to. Life changes and we have to adapt. Good luck.

[Ayooshi in reply to mountainbrown]

Thanks for your message, can I ask if you had yours removed via the NHS and what side effects other than one sided deafness you had? Any facial palsy? I think this is my worst fear and having the dizziness/vertigo not going away x

[mountainbrown in reply to Ayooshi]

So, when I was going through my diagnosis and struggling with everything somehow I found this group, however I’m not in the UK. I’m in the States. But my advice would be the same for everyone. I went through a LOT trying to find the best surgeons I could get covered by my insurance. I found a high volume facility which is really important. Fight for yourself. You want surgeons who have done hundreds of these surgeries. I do not have facial palsy. I have tinnitus, single sided deafness, the rt side of my tongue always tastes sour/salty, I get fatigued easy and recently I have been feeling a little dizzy again. I’m 6 mos out from my surgery and trying to decide if it’s caused from the bad weather or if I’m dehydrated. But I’m glad I chose surgery. It was right for me. Good luck.

[Margyr in reply to mountainbrown]

Iam the same as you don’t know what to do reslly the noise is unbareable

[Danb595]

I was diagnosed with AN in 2015. I had a 2.3 cm on the left side as per my mri. After discussion with my ENT about surgery or radiation I talked to the radiation oncologist and decided to go with the cyberknife treatment. All the possible side effects and recovery of the surgery were not anything I wanted to go through.

One month later I had a planning ct scan and mri and was fitted with a soft mesh facemask. My treatments consisted of laying flat on a movable table with the mask holding my head in place for 45 minutes as the cyberknife robot moved around me. I had a treatment ever other day for two weeks for a total of 5 treatments. My follow up is an mri each year for 5 years and then every other year. So far there has been no change to the tumor which is exactly what was expected. The cyberknife is supposed to change the DNA of the cells in the tumor to stop their growth.

I did not have any side effects and to date still do not have any side effects after 5 years.

[Russwebb in reply to Danb595]

Thanks Dan. That sounds encouraging. How are you lately?

[Danb595 in reply to Russwebb]

Another year and another MRI showing no change. My radiation oncologist is very pleased with this and doesnt expect anything different in the years to come. I have been diagnosed with trigeminal neuralgia in my left jaw area. Sharp electrical pain shooting down the lower jaw bone. That's the same side as the AS. I talked with my radiation oncologist about this and its a possibility the tumor pressed against the blood vessel could be the cause but after another review of the MRI no change was seen. The trigeminal neuralgia has been treated with medication and the pain has gone away so far. Other than that I am doing just fine.

[Hidden]

Hi, I was diagnosed 6 months ago. Woke up one morning with raging tinnitus in my right ear. I had no symptoms prior to this. Partial hearing loss in the ear is now apparent. I've had a scan and seen it, it's the size and shape of a small grape. The care has been excellent so far with the exception of the most recent consultation where the ENT specialist consultant tried to play down the impact. After writing a letter to the consultant expressing my concerns I have managed to get a referral to the hospital near to me that specialises in the treatment of brain tumours. The appointment is next week. I think I've been in shock for most if not all of the six months. I want the thing stopped in it's tracks, hence my question about Gamma Knife treatment. I wish you well and the only advice I could give would be to formalise/document your thoughts to your doctor if you don't seem to be getting what you want. All the best.