Meniere’s Disease and SCDS — Pee it Out

So, here’s a funny story.

A long time ago in a land far, far away, where it’s almost always sunny and 73 degrees, I once had an ear problem. Ten years ago at least. Lots of fullness, pulsatile tinnitus, constant infections. An ENT there came to believe I had Meniere’s Disease. So I went on a low sodium diet and took diuretics. Eventually, miraculously, it all went away and I forgot about it.

During my recent troubles, I failed to mention that episode to any of my doctors. It might have made a difference. Dr. Lee believes that Meniere’s Patients with SCDS are more susceptible to ear damage from surgery than those without it. He said he’s never had a patient lose hearing from a surgery, but I might have been his first. That’s very little consolation, but I wonder…. So make sure you discuss Meniere’s, or endolymphatic hydrops with your doc if you are considering any kind of SCDS repairs. It’s something to be aware of as they often go hand-in-hand — or canal to canal.

As for now, since some of my symptoms may be associated with Meniere’s, which happens frequently after significant ear trauma, I’m back to low sodium (in addition to low sugar, no gluten, no alcohol, and no caffeine), and am on a diuretic. I’m seriously peeing enough to solve the California drought issue. I lost three pounds over the weekend — which is good, because a year on prednisone can really pack on the weight.

There was good and bad news on my scans. The good news is that the tegmen repair looks solid, and that the hole on my “good” ear is very small. He does not believe that ear is affecting me. The bad news is, he can’t tell if my “repaired” ear is plugged as it should be. The wax and tissue used to cover the hole do not show up on CTs. So there’s a chance it didn’t hold. No way to know I guess without cracking my head open again. I’m following up on that.

My doc says it could take a couple of months to know whether this low-sodium plan helps resolve some of my current post-op symptoms. In the meantime, I’ll try to remember to put the seat back down.

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3 thoughts on “Meniere’s Disease and SCDS — Pee it Out

  1. Prof. W

    I appreciate your update –and the notion of meieres, you and I had scd surgery same week (my doc knows your doc and family)and as far as I can tell you and I only ones with lost hearing ->and constant hydrops-recent tests show a little more hearing is coming back — I been on diuretic since surgery–> and no salt–no gluten, no sugar, no alcohol, and no caffeine, in fact I cheated one day and had a beer to try–ear plugged immediately and I earned double vision in the eye surgery side-> fun..I can get around but jogging or exercising is out of the question still-> I am now exploring other ideas to hydrops -> potassium dispersion in the body–> gluten issue then, a possible yeast issue which create a blood red cell issue which create head pressure – did you have a CFL as well ? did you rule out PLF? thanks for sharing and keepin website going

    Reply
      1. Prof. Waldow

        CFL==cerebral spinal fluid leak– its like a crazy air pressure seal leak-sinus/spinal fluid related– – that forces the potassium levels to rise in your inner ear (hydrops) and causing strong tinnitus and hearing loss—-rare but not too rare
        PLF = Peri lymphatic fistula —-this is what is constantly causing my dizzy, hydrops, and hearing loss– I have had this surgery with my SCD surgery but I keep breaking the seal on the PLF and have recently just had it done again and probably broke the seal again — this is a very tricky healing process and very common issue for the hearing loss, tinnitus, and dizzy–this sucks– as 8 weeks of bed rest with no pressure exerted at all-this happens to those of us that work out a lot and in your story like mine I was running alot and then this happened..(pushing ourselves—known as the weightlifers accident — I think of it as the hernia for the inner ear–everytime I get this seal fixed my hearing comes back-dizzy goes away immediately– but one little strain and the seal breaks — dizzy comes back and hearing starts to go again –ear fills so full — hope your doing better– I just had PFL surgery 12/30 so I have a crazy 8weeks bedrest again and seal most likely is already loose so – another one coming down the line most likely–question–is your doctor the dad or the son? Stay strong!

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