Dx: Superior Canal Dehiscence and Meniere's Disease

[SueR]

Was a long, difficult day. Just today, two MRI's, CT scan, hearing test, and VEMP test.

5 months, my hearing worsened, my balance worsened. What are things going to look like another 5 months from now? 5 years??

 

[Karen]

Good luck with the results of your tests, Sue. I hope you find some answers soon. Were you having all these tests at a clinic in the Boston area?

 

[SueR]

I got the results already. I had my consult as soon as the scans were uploaded. I have SCDS and Meniere's.

 

[SueR]

re: your question... yes, Mass Eye and Ear Infirmary.

 

[Karen]

Sue,

I've just read about superior canal dehiscence, and it sounds like it could be correctable by surgery. Will you be talking with your doctors about this, and/or have they suggested any treatments as yet for the SCDS or the Meniere's?

 

[SueR]

my symptoms aren't bad enough for surgery. and Meniere's - can't do much about.

http://www.mayoclinic.org/diseases-conditions/menieres-disease/basics/treatment/con-20028251

options suck.

 

[Karen]

I'm sorry to hear that. But, at least, it looks like there are some treatments for dizziness/vertigo that might help. I hope you're able to find something that will help you with that, such as a diuretic.

 

[SueR]

I've just begun to read about Meniere's. The word "degenerative" scares the crap out of me.

 

[Karen]

Sue, I was wondering if you might be able to find a support group in your area for Meniere's. Maybe meeting with other people with this condition would be helpful, and would provide you with some coping strategies. I know how awful vertigo can be; I've had quite a few bouts with vertigo myself, and it is a very scary, out-of-control feeling.

 

[SueR]

great minds think alike, Karen! I'm on a FB page for both conditions. The Meniere's is more unknown to me at this time. I was going to ask if there is anyone in my area. Some ppl can't drive anymore, but I still can.

 

[Karen]

That's great! I'm glad you found a Facebook group for both. Hope you're able to find someone in your area with either of these two conditions.

I'm on two Facebook groups myself -- one for pulsatile tinnitus (Whooshers) and one for tinnitus. It helps to communicate with others like yourself who have the same conditions/problems.

Good luck, and I hope you find some support or answers.

Hugs,
Karen

 

[aylp]

Was a long, difficult day. Just today, two MRI's, CT scan, hearing test, and VEMP test.

5 months, my hearing worsened, my balance worsened. What are things going to look like another 5 months from now? 5 years??

From our short chat today, I gather that you are in better condition than you were in April. Great to hear that things worked out well

How did the find out about your SCD? Were you able to hear your eyes move?

 

[SueR]

Yes, I'm much better today. Haven't had a balance problem for a while now.

they saw the dehiscence on either the CT scan or the MRI. I can't remember which. two on my left, one on my right. no, I appear not to be symptomatic from the SCD.

 

[Mad maggot]

Here's a fabulous site for support.
scdssupport.org
I have thinning of the bone without actual dehiscence which can cause the same symptoms as a dehiscence. And I think you'll find that you are the only one who can say whether the symptoms you have are bad enough for surgery or not. It's not the size of the dehiscence but how it's affecting your life. I think if you go to this web page you'll be cheered up!
Many symptoms like mennieres are not but are SCDS and vertigo is a biggie. Surgery could fix it if it is in fact from your dehiscence. Loads of info from people who have it and have had surgery and those waiting for it. Also some with mennieres and SCDS like you!

 

[SueR]

I belong to that group. My symptoms don't match up with SCDS symptoms although my scans showed dehiscence. Im not active in that group because it doesn't really fit.