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Author Topic: Dyneemo  (Read 4615 times)

Offline Hooleo

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Dyneemo
« on: July 21, 2020, 04:15:45 PM »
Dy posted the following on Facebook but I thought all the boardrats would want to know what's going on with her.

So, had a virtual appointment with my neuro-otologist and prognosis is grim 
He is putting me on a sedative for the cluster headaches and vistibular migraines and scheduling me to have Endolymphatic sac decompression surgery; his exact words on the report were: " With her medically intractable bilateral Meniere's Diesease....I remain very reluctant to consider destructive options and accordingly that leaves very little available to her"
He told me that with the MDDS, cluster headaches, vistibular migraines and Bilateral Meniere's Disease I am one of only 16% of patients to have Meniere's this bad.
We laughed and laughed and I asked him to buy me a lotto ticket with those odds.
I have to do a fine cut temporal bone CT prior to the surgery and I think that will be around the end of August.
Guess with me, if I'm gonna do something, I may as well go all out!! (But to be honest, I'm actually a bit petrified  )

The optimist proclaims that we live in the best of all possible worlds; the pessimist fears this is true. (James Cabell, "The Silver Stallion")

Offline oldfanatic

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Re: Dyneemo
« Reply #1 on: July 21, 2020, 07:51:32 PM »
Hooleo, Thanks for posting.  Dy has been one of our long time, frequent posters, hate to see her going through something so serious. Will send her a PM to let her know she's being thought of and included prayers.
Live well; laugh often; love much

dyneemo

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Re: Dyneemo
« Reply #2 on: August 04, 2020, 12:52:04 AM »
You are all so sweet and I miss this board so much! I need to keep myself logged in so I can stay connected with all of you instead of getting all whiney on FB. I got the FB message for Oldfanfic and thought 'Why the heck am I not enjoying my 'rats??" and then I finally remembered my password again! <3

My condition is called Meniere's Disease (endolymphatic hydrops) but I also have Vistibular Migraine and a weird thing called Mal de debarquement (MDD) syndrome which causes you to feel like you're on a swaying boat all of the time or at least a lot of the time. My MD is bilateral, so I have it in both ears. My doctors all conclude that it started when I got sick in London back in 2017 with Labrynthitis and it just pretty much has played havoc with me ever since.

I am prone to drop attacks (when you just suddenly fall over as if God himself just reached down and pushed you over), sudden and violent onset vertigo with vomiting and all that other fun stuff and cluster headaches with almost daily dizziness. It really is no fun :( I haven't had a full-on vertigo attack that lasted longer than 1-2 minutes since March so I'm optimistic about that. Most of my vertigo attacks last anywhere from a few seconds to may 2-3 minutes but my longest was 56 hours and my average is about 6 hours.

My GP referred me to an ENT who referred me to a neurological ENT who referred me to the Otolaryngology department at Seattle's Virginia Mason Neruosurgery unit. I have had endolymphatic steroid injections in my right ear, have taken every kind of weird med you can think of and even have some strange nasal spray to settle down a sudden cluster headache. I'm so exhausted from it all that I am cranky and absolutely unmotivated.

My surgery is scheduled for 8/19 and they'll remove the mastoid (sp?) bone behind my right ear and go in and alleviate the pressure in the endolymphatic sac and then replace the bone and staple me up ;) I'll stay over night and will lose hearing in teh right ear for maybe 6 weeks but the surgery should stop the vertigo and constant, never ending pressure cooking roaring and pressure on my right side. If all goes well, we will either do the left side or maybe I'll be good with just the right. It's my worst side and the most prominent trouble maker ATM.

Hubby wants me to look into my autoimmune disease and see if it plays a part and I talked to my doctor today to see if EBV (Epstein-Barr Virus) is a contributing factor. He said it wasn't but was willing to allow me to take an anti-viral to see if I felt better; but with as long as my symptoms have lasted consistently (since October last year) he doesn't think it's likely.

Anyway, sorry for the REALLY long post. And thanks to Anna for reeling me back to this wonderful and comfortable place. I get so upset and nasty on FB and need to just stay away from all that negativity for awhile.

Thank you all and I really love you all and love this group!

Dy

Offline oldfanatic

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Re: Dyneemo
« Reply #3 on: August 04, 2020, 09:33:53 AM »
Dy, Thanks for the update on your problems.  Feel so bad for you, having to go through all this, and hope and pray your surgery is a big help for at least part of it.  Please do keep us posted on how it goes; we love you and want all the best things in the world for you.
Live well; laugh often; love much

Offline sarapals

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Re: Dyneemo
« Reply #4 on: August 07, 2020, 02:37:14 PM »
Wow! Dy-- hoping for successful surgery! Do what the good docs tell you to do! This is a lot to handle.

Hope everyone is staying safe and healthy!
"Long long afterward, in an oak I found the arrow, still unbroke..." (Longfellow & Sara Sidle, Ending Happy, 2007)

Offline Hooleo

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Re: Dyneemo
« Reply #5 on: August 12, 2020, 01:36:34 PM »
I had read several posts from Dy on Facebook and figured her friends over here would want to know what she is going through.  It's a really tough situation. I hope knowing how much we all care and are concerned for you, Dy, will lift your spirits a little.
The optimist proclaims that we live in the best of all possible worlds; the pessimist fears this is true. (James Cabell, "The Silver Stallion")

dyneemo

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Re: Dyneemo
« Reply #6 on: August 20, 2020, 09:19:35 PM »
Surgery went well yesterday; I admit I was freaked out. Today was much worse than yesterday and I've battled nausea all day and been in bed. Glad to have it over; I cannot hear anything out of my right ear but pain is so far manageable. I am praying this works and stops the vertigo attacks so I can get back to normal (wait..are any of us normal?_

Dy

Offline Hooleo

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Re: Dyneemo
« Reply #7 on: September 16, 2020, 01:04:25 PM »
What's the word, Dy?  Did the surgery help?  Are you feeling any better and has the vertigo gone away?  Hope you're checking in with the board and will let us know.
The optimist proclaims that we live in the best of all possible worlds; the pessimist fears this is true. (James Cabell, "The Silver Stallion")

Offline oldfanatic

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Re: Dyneemo
« Reply #8 on: September 16, 2020, 02:22:02 PM »
To add a word to Hooleo's question to Dy about the surgery.  Sorry not to have followed more closely on the Board.  Dy, hoping all is well and the surgery was a complete success. Let us know how it's going, please.
Live well; laugh often; love much