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Endolymphatic sac decompression/shunt placement

Posted , 6 users are following.

wendy45166
wendy45166

Hello to all, I was diagnosed with menieres about 6 yrs ago.  Started off with just fullness in the left ear with some distorted hearing.  As time went by episodes became more prominent with the tinnitus starting.  I had 2 episodes within a short time frame and went to ENT.  Hearing tested, discussion with doc about signs and symptoms and was diagnosed.  I started with maybe only 1-2 episodes a yr, increasing to 3-4.  At that point we did steroid injections with the first one seemingly to resolve the episode.  Times passes another episode another injection this time with longer period of time for results.  Repeated process again 2 times with no results.  I will be honest and say was told to restrict salt/sugar/nicotine/caffeine.  Yes my life just ended!  I do all the above.  I did try hard to cut back on all the above but wow how much I learned about habits and addiction.  I continued on with episodes becoming more frequent severe fullness and the multiple sounds from a ring, to a ding, to a humming, a high pitch streak....completely annoying.  These episodes would eventually bring on the vertigo.  Started quick short little burst of dizziness to any loud sound sending me into a spin.  Shopping and scanning the shelves was debilitating as I would end up having to leave due to the vertigo.  I have fallen in the past and resulted in breaking my hip.  Recently I have had an episode that has lasted 6 weeks.  That's everyday for 6 weeks.  Ringing, humming, fullness, vertigo...exhaustion!  ENT doc sent me to another ENT who specialized in the shunt placement for menieres.  I had the surgery and currently 3 days post op.  I can say honestly the vertigo has stopped, however the fullness and ringing is still there and magnified.  I was desperate the day I met the new doc and maybe I should have researched a little more, but I am now understanding I may always have this part.  My postop appt is in 2 weeks, but wondering if anyone else has had this surgery recently and what the experience was for them.  On a side note, if doc tells you that you will be up and back to work in 3 days....RUN LIKE HELL.  Soooo not the case.  Any help is greatly appreciated as this disease is so difficult to explain as most people have no idea the suffering you actual have!

0 likes, 8 replies

8 Replies

  • christine_35821
    christine_35821 wendy45166

    Posted

    I have only recently been diagnosed having had vertigo and vomiting since pneumonia last December. My gp prescribed betahistamine and I take 6 x 8mg per day evenly spread throughout the day/night as this reduces the ear pressure. I’ve read that it’s the constant increase and reduction of pressure that causes the damage to hearing so I try to keep it constant. This has so far stopped the vertigo. Since I already had lost 50% of my hearing I’m daunted at the prospect of losing any more. The tinnitus I agree is hard to tolerate especially if it interferes with sleep. I feel panicked if it gets very loud. What operation did you have?  Are you in America?  My vertigo always results in vomiting and I was hospitalised in December as I couldn’t stop for over 4 hours. I also retired from my job as a CAD technician. Too stressful trying to act normal when I had an attack. Looked like I was drunk!  Did your operation cure the tinnitus?  
    • wendy45166
      wendy45166 christine_35821

      Posted

      Hi there.  To answer your questions yes I am in America... Texas.  The operation I had was an endolymphatic shunt placement.  I am still having the tinnitus and fullness.  Unsure at this point if that will change as I am only 4 days postop.  Doctor says 85-95% effective at relieving the vertigo for a period of time.  Some go years, some go 5-6 yrs and some may have return of vertigo sooner.  His statistics are based off of his practice/patients.  He has performed hundreds of them.  He stated he felt as though the ringing and tinnitus will subside after 6-8 weeks but that's not a guarantee.  If it does not then he says we can try the injections again but probably about a 15-20% chance of reducing it and may be I have it from now on.  So that's where we are at.  Since surgery I have not had any vertigo.  But let me say my issues with the vertigo becoming debilitating were fairly new with only a couple of episodes where it really effected me, the last episode being the actual 1st I had ever had that made me vomit.  The reason I was quick to act, I work in the operating room and cannot subject a patient or my coworkers to me falling out on the floor.  I had researched and heard conflicting results and when I spoke with my original ENT about the last episode is when I was recommended to the ENT who,placed the shunts.  

  • davewombat
    davewombat wendy45166

    Posted

    Just to send my sympathy . Sounds dreadful. Hope vertigo remains under control. The tinnitus and fulness may subside as the ear settles after the opp. Regards and best of luck.
    • wendy45166
      wendy45166 davewombat

      Posted

      Thank you very much.  It is very much a debilitating disease.  
  • tanney
    tanney wendy45166

    Posted

    Hi Wendy.  You do not mention diuretics....are you or have you been on them?  I've found that diuretics (water pills) with dose of 50mg - 75mg/day will pull all the fluid out of your ears and reduce the ear fullness/pressure and tinnitus you experience.  Diuretics do have side effects (blood pressure, potassium decline and kidney concern) which are easily managed.

    • wendy45166
      wendy45166 tanney

      Posted

      Hi there, yes we did lasix for a month...no change 😞

  • Bmac339
    Bmac339 wendy45166

    Posted

    I had the surgery last October. It did not help that much with the vertigo. I have had several attacks since. I know many people have had a lot of success. It is very hard for the doctor to determine where the sac is. I wish you all the best!!
  • Guest
    Guest wendy45166

    Posted

    Hi.  I’m new to forum. I was wondering how your endolymphatic sac decompression is today? Any problems? I had that surgery in May without a shunt. I’m having some residual balance issues.
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