Hi Everyone! It is great to be part of this community with you all. My name is Shannon and I joined the charity at the start of the year as a Digital Support Assistant.
It would be great if you introduced yourself and we got to know each-other a little better. If you have any questions or would just like to have a chat, feel free to get in touch!
As a charity we will help wherever possible by sharing resources, information and supporting this wonderful community!
Hi my name is Lynn and I lost my hearing suddenly in November went to GP several times bit was dismissed think he thought I was over reacting as I was only a few months in following major abdominal surgery for a rectal cancer which was all removed 🙏 after pestering GP eventually got a referral to ENT and after 2 MRI scans it has been identified I have a AN this morning I am waiting for a call from the specialist who deals with these I have been told it is 4mm x 6mm so hopefully a watch and wait scenario x I did look at the list of questions to ask on your webpage very helpful 🙏
Hi Lynn great to hear from you and sorry to hear about your diagnosis.
I am glad you found the webpage useful, should you end up in a watch and wait scenario let us know as we also have resources about this on the website.
If you have any questions the more you find out from your specialist, you can always give us a call (0808 800 0004) or just post on here and we will respond as soon as possible! Best wishes!
My specialist delivered good news very small AN he was confident it’s not a cancer owing to the lack of symptoms I only have a hearing loss and tinnitus 🙏 owing to my history of bowel cancer he will arrange another MRI in six months rather than a year To be cautious 👍 he was also able to say there was no growth between the two scans I had three months apart All good news and if no growth will be a watch and wait if any growth then probably radiotherapy. Also advised to contact his secretary if any change noted by me 👍thank you universe 🙏
Thank you for sharing such wonderful news! It is great that your specialist gave such comprehensive information. Best wishes!
Nice to know you are there Shannon x
Thanks Kristyll, should you ever have any questions or just want a chat let us know!
Hi Shannon , Beth I’m Sarah J & just joined yesterday. Firstly thanks for this - it is a lifesaver for those new or just wanting info or insight into this sudden thing we find ourselves in.
For my journey - About 3 wks ago I felt things in my (Left) ear & thought was either a trapped fruit fly or just the beginning Of a cold. After 5 days & increasing muffled sounds Went to pharmacy (as was w/end) & got a OTC ear drop for ear issues - pain killer, wax melter etc . As it didn’t fix it called GP on mon as they wouldn’t get an appt with a Phys check of ear I refused to accept the antibiotic & called again on Tues. I knew it wasn’t an infection as no fever or any symptoms in ears - just in head! Oh had tinnitus by then.
But when GP said u can get ear infection without the fever, went along with it.
Wed had the med & took a strong reaction fell asleep for 3/4 hrs woke up & itching hip down. Was so bad had to take antihistamine (allergy tabs) & slept for Another 2/3 hrs!! Coincidentally was my 50th birthday that day!! Not the celebration I was expecting even for Covid.
Got a new antibiotic but when it didn’t get better saw the GP last Tu. he stopped the antibiotics as couldn’t see any infection. Gave anti allergy & decongestant in case it’s that! In 2 days By Thurs Face going numb, walk going wonky & v dizzy so went to A&E - Dr said AN , given v v strong steroids & told to wait for appt - should be contacted in 8-10 days! If not to come back to A&E & they will chase up again! All without even looking into my ears I think!
So I’m just trying to read up in this to get all info I can. Will chase hospital on mon . Is it their neuro Dept?
Thanks
Acoustic neuroma with cysts in it
Operation date
Acoustic neuroma advice if possible
Surgery or radiotheraphy?
New to all this and looking to reach out to others and stop using Dr Google!!
