I cannot blame the PMR

[whitefishbay]

Saw another ENT doctor yesterday (never the top dog) and they had the results of my MRI. My sudden hearing loss was not the result of my autoimmune issues - not PMR or hypothyroidism. No, I have an acoustic neuroma or also known as vestibular schwannoma. No one wants a brain tumour but I guess this is the one to get if you have to. I was hoping it was inflammation and it would go away.

Moral of the story - when your hearing changes - go get it checked out urgently.

Thanks for listening. Thank God for MRI scans and for the NHS.

Whitefishxx

[SheffieldJane]

Here here! I am sorry that you are having this worrying time. Keep us posted and take care!

[whitefishbay in reply to SheffieldJane]

Thanks. You get what you get. Could be better...but could be worse. Thanks.

[123-go in reply to whitefishbay]

Your stoicism will see you through, whitefishbay and your good advice will prompt others to seek advice when they notice changes.I'm full of admiration and wish you all the very best, 💐

[whitefishbay in reply to 123-go]

Thanks. I think PMRers are super stoic. The motto is get on with it.

[MrsNails in reply to whitefishbay]

Morning - have they decided if it needs treatment? You’re right about us being stoic - we do tend to just ‘get on with it’…..

Hope you’re feeling OK 💐

MrsN

[whitefishbay]

Hi Mrs Nails, it is a benign tumour and it is a wait & see situation (MRI in sixth months). Funnily enough sharing with my family and team PMR only at the moment. Everyone is kind and sympathetic.

[MrsNails in reply to whitefishbay]

That’s good it’s benign 🙏🏼 & that they’ll keep a close eye on you. It’s good to have Team PMR for support

Take Care x

[powerwalk]

Oh goodness, never a dull moment. Thats a shock to you. Let us know how you go. Wishing you all good wishes x

[whitefishbay in reply to powerwalk]

I would be happy to have a dull moment at this point. Thanks.

[powerwalk in reply to whitefishbay]

Oh im with you there!!

[PMRpro Ambassador]

Hopefully watchful waiting will show it is all good.

But you are so right - it really isn't always the PMR!

[whitefishbay in reply to PMRpro]

In fact I probably don't have PMR anymore but this is my support group. Everyone is kind and gets it. That 1 mg pred. keeps the other wolves from the door (or keeps the aches in pains in check). Hope you are okay in hibernation mode.x

[PMRpro Ambassador in reply to whitefishbay]

I wish I was in hibernation - but the list of things I must do gets longer, not shorter ...

[whitefishbay in reply to PMRpro]

It is all that paperwork and certificates. Also you have brain fog at this time (well I did when my father died). THinking of you.x

[PMRpro Ambassador in reply to whitefishbay]

I spent 2 hours yesterday "chatting" online to RBS in the absence of any other useful option. "All" our agents are busy helping people - didn't get an answer to my query as to whether that really meant "Our only agent" ...

[Hunter134 in reply to PMRpro]

Iam thinking of you during this difficult time❤️I don't know you but I feel you re strong and really smart I admire your strength!!!

[Daffodilia]

Best of Luck

[whitefishbay in reply to Daffodilia]

Thanks. Funnily enough if you tell people it helps. I told my neighbour in our ride to work and her sister has the same thing.

[Telian]

News you didn’t want - thank goodness it’s benign. They’ll look after you. My niece was diagnosed with a benign brain tumour in her mid teens - she’s 32 next month and leading a normal life - is a radiologist and has three young children. Best wishes. 🌺

[whitefishbay in reply to Telian]

My neighbour#s sister has the same condition. She lives in CA so it will be good to hear what they do in the USA for it.

[Bennijax]

I had two sudden hearing losses, one in Feb 2010 and the other in December 2013, both ‘cured’ by a a period on very high steroid doses. MRIs were negative. Thought to be a virus. I wonder if linked in any way to the PMR that hit me March 2019. How many of PMR patients get sudden hearing loss I wonder.

[PMRpro Ambassador in reply to Bennijax]

At that time difference it is difficult to say - but I haven't heard of many PMR-ers with sudden hearing loss. But it certainly can be linked to GCA and even LVV.

[HeronNS in reply to PMRpro]

Wasn't there a survey about this a few years ago?

[PMRpro Ambassador in reply to HeronNS]

Don't remember it ...

Ah - do you mean the basis survey that lead to the 8th cranial nerve study? That was hearing changes and ear symptoms of all sorts, not specifically sudden sensioneural hearing loss. But it did include PMR patents too, you're right.

[HeronNS in reply to PMRpro]

Haha, I just found it, google, not hu search function. healthunlocked.com/pmrgcauk....

[HeronNS in reply to HeronNS]

Congratulate me, I just successfully located, copied and pasted a link using my mini tablet!

[diana1998]

Can you wear a hearing aid to help?

[whitefishbay in reply to diana1998]

I wear one hearing aid. It helps a bit but some people mumble. I am out of the closet as far as deafness I tell everyone. Of course, they instantly forget but I hear most of what I need to. 🤣

[PMRpro Ambassador in reply to whitefishbay]

And if you are like my husband was - you hear the things someone doesn't expect/want you to hear

[whitefishbay in reply to PMRpro]

haha. I wish. I am big on body language though.

[diana1998 in reply to whitefishbay]

Well done you. Take care.

[whitefishbay in reply to diana1998]

P.S. I cannot give enough praise to the audiologists at Charing Cross Hospital. They are super busy but always calm, professional and just get on with the job with kindness.

[Joni21]

Lifting you up in purposeful prayers and that when you return for your follow up MRI it’s good news! 🙏🏼

[whitefishbay in reply to Joni21]

Thank you very much. I am praying for a miracle. Just trying to figure out the best saint to pray to: St Francis de Sales, St Filippo Smaldone...? Thank you again.

[Joni21 in reply to whitefishbay]

Those are good whitefishbay! St. Peregrine is known as Patron Saint of cancer, know you mentioned on thread tumor is benign, but he is also prayed to for healing….. “mighty” and “wonder worker” because of the miracles obtained through his intercession for persons through powerful prayers.

“Intercede for us all, St. Peregrine, that we may be sincerely grateful for every healing, every favor and grace from the Lord God, who is ever glorified in His saints. Amen.”

Padre Pio as well for Pain, Suffering, Healing.

Lastly, you could search for “prayers” for testing, results, treatment, peace, anxious as you await the next MRI. I have a 365 Day Lives of the Saints Book, Vol. 1 and need to get Vol 2. I am a prayer warrior! I will continue to keep you and all in prayer!🙏🏼

[whitefishbay in reply to Joni21]

Thanks for this saintly info. I need all the help I can get. Thank you.

[sandydame]

Wishing you well and praying a peaceful mind for you as you await the next MRI. I join you in thanksgiving for the health care we are able to receive there and here in the USA where I live. I so appreciate this site. I have had PMR 7 years and it has been my most valuable place to go for understanding by others about living with PMR . We will always be here for you. Live the coming holidays JOyfully!

[whitefishbay in reply to sandydame]

Thank you. You are all my invisible friends.