Feeling pain on other side - Large tu... - Acoustic Neuroma ...

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Feeling pain on other side - Large tumor 3*2.5 cm

Raviverma
Raviverma

Hi all, my wife is diagnosed with acoustic neuroma couple of weeks back. Her tumour size is 3*2.5*2.5 cm so neuro surgeon adviced to undergo surgery by early next year.

She is having tumour at her left ear but she is feeling pain and some kind of numbness in her right side. She is not feeling any pain at her left ear, however she had lost 70-80% hearing from her left ear. She is having vertigo problem and have very bad head ache for last 1 year now that sometimes last for 30-40 mins.

She is 33 year old and we are having 1 year old son as well, she is scared of surgery given we have 1 year old son to take care and also not sure if this is definately going to help the issues she is facing at her right side or more importantly of any issues in right ear is identified afterwards however neuro surgeon have not found any issues in her right ear as per MRI report.

Can anyone please advice if you have gone through similar situation.

Also is it fine to wait for 1-2 years.

Thanks in advance.

Ravi

17 Replies

Hi Ravi,What a very scary time for you both and I do hope you find some support and helpful replies here. The most important thing is that you talk to the team who are deciding on treatment with you and your wife, especially around the waiting question. It sounds like your wife's symptoms mean that she would need surgery sooner rather than later, but it's the consultant that will help you with this. Hopefully others with similar symptoms and situations will offer their experience but I just wanted to say that I hope you can get help and support with all you are facing and to help with your baby whilst your wife gets the surgery and treatment and recovery time she will need. Lin

Raviverma
Raviverma in reply to flappers

Thanks flappers for your wishes, I have received good response from surgery team so I am optimistic however even they do not have definative answer for the right side pain issues. Hopefully it's related to left ear issue and get resolved post surgery.

I have not known of opposite side interference but the symptoms to me seem as if it should be a more urgent intervention. If the consultant from the hospital you are under has a skull base nurse ring and explain the symptoms or ask your GO to expedite the appointment. Good luck x

Raviverma
Raviverma in reply to Kristyll

Thanks Kristyll, as of now I have not received any definate answer from surgeon or nurses team. Looks they do not want to comment unless they found any evidence in right side.

As of now they have kept us on surgery list and we are expecting a date soon. Possibly I am left with option to check the right side issue after surgery now.

Anyways many thanks for your response, hopefully things should sort for her post surgery.

Kristyll
Kristyll in reply to Raviverma

Thinking of you,all the best of luck and try and chill over this wonderful holiday!, ha

Hello Ravi,It must be so worrying for yourself and your wife especially as you have a young son to look after. I have been concerned myself about the surgery and am due an operation Spring time. My tumour is large too. I recently started getting problems with the opposite ear and pain that side. I started with a tickling feeling, like something was crawling in it and then uncomfortableness, like a pea was stuck in it but it isn't swollen. I asked the ENT surgeon when i saw him but he said there was no tumour on that side. It has got worse and i went to my local doctor who gave me some steroid cream to rub into the ear canal. It eased some of the symptoms slightly but it hasn't sorted the problem but unfortunately i can't take it any further as i have just been diagnosed with bowel cancer and so need an urgent operation. I can understand your wife's anxiety with not knowing what is going on with the other ear. I worry that it's my only good ear and i don't want to lose my hearing there too. Its worth going back to her doctor and asking them to look into the problem. Hope all goes well for your wife

Thanks for your response, I am planning to ring ENT to check right side. I hope it's related to left side found tumor only.

I hope you get well soon from bowel cancer.

Hi Ravi,I am so very sorry to hear about your wife . She’s so young . I agree with flappers in that I think she needs attention sooner rather than later . My heart goes out to you both especially with your one year old son . I have just had my 2nd MRI so I’m waiting for my results to find out if I have an AN . Oh the waiting is the worst isn’t it ? I wish you all the best of luck and fingers crossed your wife can be seen soon . Sally

Yes waiting is such a pain, I have got pre operation assessment booked so hopefully my wife should get the operation soon.

Hi my acoustic neuroma is on the left but I have all my symptoms on the right .. such as stabbing pains and ringing in the right ear... it is scary and life changing I hope your wife is ok and stays strong much love to you all

Thanks Jasmine for your good wishes. Did you get any advise from ENT or neuro surgeon for your issues at right side?

To be honest no I feel let down by themThey just sent me

For a hearing test and that was it he just told me to get worried if I started to get numbness in my face ... I don’t no if this happens to your wife but I also get like judering in my brain then it lets off a high pitched ring ? I’m having a mri tomoro aswell as I’m concerned my tumour is growing

My wife have high head ache sometimes but no numbness at right side, anyways I believe her symptoms are quite similar as yours. I would like to hear back from you after your MRI as if they find any issues. I hope it's related to left ear tumor only.

Ravi, sorry to hear this. My brother is 34yrs old and he has had surgery a couple of months back to remove a large VS; in the region of 3.8cm x 4cm. If you are deciding to wait make sure your wife is being monitored every 6 months via MRI, and if its growing quickly the sooner it is removed the better. Key question to ask is to see whether they can preserve and minimise damage to the facial nerve.

Raviverma
Raviverma in reply to AHK45

Thanks AHK for your response. May I know where was your brother treated?

Also how is he after surgery, is it quick for him to recover post surgery.

We are refered to Oxford based hospital.

Hi Ravi, we are in the NorthWest of England. So the hospital is Preston Hospital. He is largely recovering but 3months gone he is still on pain medication - dehydrocodeine. The neuro-rehab people think its nerve pain. If you are going to wait keep an eye on your wife for nausea/vomitting, changes to vision and/or seizures. Any sign of these she needs to go in hospital pretty quickly, it could be brain fluid not draining properly due to the VS. Also the regular scans will confirm. Please look into Hydrocephalus so you are fully aware.

Raviverma
Raviverma in reply to AHK45

Sure, thanks AHK for your prompt response.

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