Superior Semi-Circular Canal Dehiscence

[just]

Anyone have this or know someone who has? (for those who don't know but are curious - en.wikipedia.org/wiki/Superior_canal_dehiscence)

My best friend was diagnosed with a serious case about 6 weeks ago and her surgery isn't until the end of March. It's killing her. It's affecting her driving, she doesn't want to talk, can't watch tv or listen to loud noises, eating is unpleasant, even being too quiet is an issue.

I want to do something to ... feel less useless. I live across the country from her but I'm at a loss. Any one know what would be a good option?

[Eagles]

alzi

[mcsangel2]

Holy crap, this sounds awful. I had severe recurring vertigo on and off for about 6 weeks at the end of last year, and it was the absolute worst thing ever. I can't believe there's actually something more awful than that was. Is she experiencing the vertigo also or just the hearing symptoms?

I'd venture there isn't anything that's going to help her until she gets the surgery.

[just]

Feb 10, 2016 18:42:10 GMT -5 mcsangel2 said:

Holy crap, this sounds awful. I had severe recurring vertigo on and off for about 6 weeks at the end of last year, and it was the absolute worst thing ever. I can't believe there's actually something more awful than that was. Is she experiencing the vertigo also or just the hearing symptoms?

I'd venture there isn't anything that's going to help her until she gets the surgery.

She has every fucking symptom. My heart is breaking for her.

All my usual I love you gifts don't work - books, movies, magazines, music, gift cards for food, many bottles of wine.

[MrsPotatohead]

That sounds like a nightmare.

Would a GC for a massage be nice or make it worse? Or if it would be too uncomfortable now, maybe you could tell her to use it after the surgery, something to look forward to? I feel like when you feel really sucky, at least having plans in the future are nice to think about.

[just]

Feb 10, 2016 19:16:34 GMT -5 MrsPotatohead said:

That sounds like a nightmare.

Would a GC for a massage be nice or make it worse? Or if it would be too uncomfortable now, maybe you could tell her to use it after the surgery, something to look forward to? I feel like when you feel really sucky, at least having plans in the future are nice to think about.

That might work! She's been told she should make a full recovery after surgery ... Thanks

[thatgirl2478]

poor girl! That's got to be rough.

[lilac05]

Poor girl. You're a good friend.

Does she like to take baths? Maybe some bath salts/bombs, a new candle, and some nice lotion, along with some cute new fuzzy socks?

[alzi]

I have this, and know a lot about it.

Any gifts that you got her to make her comfortable or relax. Unfortunately there is nothing you can do to ease her symptoms

This was just discovered in the late 90s, and already the treatment has gotten so much better. She will feel so much better after surgery

Good luck to her, and if she has any specific questions you can PM me!

just

[mcsangel2]

All I know is, when I had the vertigo, I was completely and utterly incapacitated. I couldn't walk, I couldn't read, I couldn't look at a screen.

I would ask her if anything is giving her comfort and go from there.

[just]

Feb 10, 2016 19:52:36 GMT -5 alzi said:

I have this, and know a lot about it.

Any gifts that you got her to make her comfortable or relax. Unfortunately there is nothing you can do to ease her symptoms

This was just discovered in the late 90s, and already the treatment has gotten so much better. She will feel so much better after surgery

Good luck to her, and if she has any specific questions you can PM me!

just

I'm so so sorry that you're dealing with this. You said you have this (still) - I hope that you're doing better? ok? not horrible?

Can I ask if smells are an issue? Would a massage be something that she 'may' like?

I really appreciate the offer of a PM, I may take you up on it.

(hugs)

[alzi]

Feb 10, 2016 19:58:14 GMT -5 just said:

Feb 10, 2016 19:52:36 GMT -5 alzi said:

I have this, and know a lot about it.

Any gifts that you got her to make her comfortable or relax. Unfortunately there is nothing you can do to ease her symptoms

This was just discovered in the late 90s, and already the treatment has gotten so much better. She will feel so much better after surgery

Good luck to her, and if she has any specific questions you can PM me!

just

I'm so so sorry that you're dealing with this. You said you have this (still) - I hope that you're doing better? ok? not horrible?

Can I ask if smells are an issue? Would a massage be something that she 'may' like?

I really appreciate the offer of a PM, I may take you up on it.

(hugs)

Mine is thankfully not severe. So it is not debilitating. The surgical treatment is only done on severe cases.

Smell would be fine! So I'm sure a massage would be nice too!