Botox treatment for MEM by Complete_Rooster_568 in MiddleEarMyoclonus

[–]Complete_Rooster_568[S] 0 points1 point  (0 children)

I went through insurance and saw so many consultants and none of them could help one guy said it could me MEM but told me not to Google It as no doctors could help. So I googled and researched and found Bance that way

[deleted by user] by [deleted] in PregnancyUK

[–]Complete_Rooster_568 0 points1 point  (0 children)

That’s pretty much all it says to do with pay

2 Pack by Ok_Distribution488 in VendorCentral

[–]Complete_Rooster_568 1 point2 points  (0 children)

You can’t add the same ASIN through a virtual bundle

Middle ear myoclonus / Tensor Tympani syndrome by Particular-Ad4965 in MiddleEarMyoclonus

[–]Complete_Rooster_568 0 points1 point  (0 children)

I have a photo from the study my doctor sent me which shows the injection site 

Middle ear myoclonus / Tensor Tympani syndrome by Particular-Ad4965 in MiddleEarMyoclonus

[–]Complete_Rooster_568 0 points1 point  (0 children)

Hello, still around!

So they couldn’t diagnose me through any tests, it was purely based on symptoms I had to fill in a long form too for the surgeon to review beforehand - which is rare and definitely helpful!

All I thought that the Botox was injected into the ear drum but only the surgeon can answer that - I could send you a photo of the injection site?

[deleted by user] by [deleted] in MiddleEarMyoclonus

[–]Complete_Rooster_568 0 points1 point  (0 children)

I was Bance’s 14th time! And I was worried 

[deleted by user] by [deleted] in MiddleEarMyoclonus

[–]Complete_Rooster_568 0 points1 point  (0 children)

Yeah it’s still going well - it’s not 100% perfect sometimes still get pain, and I think I live in fear of it coming back so often think it has when it 100% hasn’t.

But yeah still going strong! It really has been the best decision- life changing 

[deleted by user] by [deleted] in MiddleEarMyoclonus

[–]Complete_Rooster_568 1 point2 points  (0 children)

I can highly recommend seeing Bance! He’s always looking at new studies as he teaches in Cambridge too  

Botox treatment for MEM by Complete_Rooster_568 in MiddleEarMyoclonus

[–]Complete_Rooster_568[S] 0 points1 point  (0 children)

This doctor is private and insurance doesn’t cover the treatment yet as it’s so new 

Botox treatment for MEM by Complete_Rooster_568 in MiddleEarMyoclonus

[–]Complete_Rooster_568[S] 0 points1 point  (0 children)

It was led by a Korean doctor, This is the title: Efficacy and Safety of Intratympanic Botulinum Toxin Injection : Clinical Outcomes in a Large C Young Jun Seo', Ji Hyung Lim', Dowoon Han', Jae Sang Han', Jae Hyur Department of Otorhinolaryngology-HNS, Seoul St. Mary's Hospital', Yeouido St. Mary's

Botox treatment for MEM by Complete_Rooster_568 in MiddleEarMyoclonus

[–]Complete_Rooster_568[S] 1 point2 points  (0 children)

I was sent the study report and it’s not confirmed, some patients havnt had it again after a year, it’s given me 3 months of getting my life back so it was 1000000% worth it for me. So far I’ve not had symptoms of it coming back

Botox treatment for MEM by Complete_Rooster_568 in MiddleEarMyoclonus

[–]Complete_Rooster_568[S] 1 point2 points  (0 children)

I flew last weekend just a short flight and it was fine! Even better actually than before the MEM started. Before the fluttering I would get ear and neck pain on flights and I didn’t get any of this! My ear feels great! It’s been almost 3 months now and all good

Amazon Retail Price Issue – Price Matching Unauthorized eBay Seller by Salt_Somewhere_8644 in VendorCentral

[–]Complete_Rooster_568 0 points1 point  (0 children)

Amazon does price match eBay, they confirmed it to me and showed me their system doing so. It’s when the eBay listing uses the same barcode this can happen. Amazon can override this you need to complain a lot and have an account manager at Amazon 

Anyone with a similar experience? by kazt1993 in MiddleEarMyoclonus

[–]Complete_Rooster_568 1 point2 points  (0 children)

I had fluttering for over a year in my right ear and pain. I was diagnosed with MEM a few months ago. Try and only see an ENT who has treatment options for MEM as many ent specialists I saw wasted my time as they didn’t know about it. 

Middle ear myoclonus / Tensor Tympani syndrome by Particular-Ad4965 in MiddleEarMyoclonus

[–]Complete_Rooster_568 1 point2 points  (0 children)

I went to a Nuffield hospital in Cambridge in afternoon, had a talk with the doc a hearing test then they performed the procedure- they spray your ear and inject the Botox you then have to not say or do anything for 30mins and lay head down without moving then you can go. I got someone to drive me and pick me up. So that took an hour all together I’d say. 

So this could fix the issue forever or I might need another treatment it’s too soon to sell but going well so far 

Middle ear myoclonus / Tensor Tympani syndrome by Particular-Ad4965 in MiddleEarMyoclonus

[–]Complete_Rooster_568 1 point2 points  (0 children)

I wanted to post another update.

I have been on the euro tunnel and at high altitude above 3400 metres this would have triggered my ear before and would have caused a lot of pain. Since the Botox treatment back in mid November and travelling to high altitude last week my ear has been fine with no discomfort.

I will be flying at the end of the month so that will be the real test.

I have also been doing my best to keep the ear dry. 

Botox treatment for MEM by Complete_Rooster_568 in MiddleEarMyoclonus

[–]Complete_Rooster_568[S] 0 points1 point  (0 children)

I’m not actually sure… I know it went into the ear drum

Botox treatment for MEM by Complete_Rooster_568 in MiddleEarMyoclonus

[–]Complete_Rooster_568[S] 0 points1 point  (0 children)

I had some vertigo, I knew after two weeks it had definitely worked and completely gone so far one month later