Mastoidectomy - Endolymphatic Sac Decompression

Discussion in 'Your Living Room' started by Verti_Geaux, May 28, 2007.

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  1. Verti_Geaux

    Verti_Geaux New Member

    Okay, I've asked a couple of people and I didn't get a reply, so I'm just putting this out there.

    I'm about to have the ESD surgery and I want to know "How do they get TO the inner ear???" Through the mastoid??? Do they open up your skull??? Take out a piece??? How does all that work??? The more I read "medically" the more I get freaked out! The research keeps talking about "mastoidectomy"!!!!!!!!!! Is THAT what they do??? :eek: EIKKKKKKKKKKKKKK

    Someone please answer.............. :'(

  2. Amethyst

    Amethyst She believed she could, so she did.


    I did respond to your it is copied from the Ativan/Valium/Xanax thread (

    Hi Anne-Marie,

    Sac decompression is no small surgery. You need to be fully aware of the procedure prior to committing to it. The incision runs the entire length of my ear, just behind it, from the top - around the back - down to the bottom. Staples were used to close up the incision and it took about 25 staples to do it. It was a very frankenstein look! I'm still a little confused about how they gained access to the area but if I feel around my incision area it feels like they may have been able to get around the big bone right behind the ear - my incision is very close to touching the back of my ear. I would imagine they moved my ear out of the way a bit to get better access......which would explain why my ear felt detached afterwards. It was a good month before I had any feeling back in it and two months before I could sleep on it again. I still have strange sensations 4 months later. After getting around that area the surgeon enters the 'dura' (the thick lining surrounding the brain) and removes a small piece of bone which covers the endolymphatic sac, making more room for the sac to expand when needed (with the hydrops). My surgery also involved the insertion of a shunt.

    Hope that helps some. It's a lot to digest and not something that should be entered into lightly. All the best to you. Please let me know if you'd like to hear a bit more on the recovery process. After my procedure I had next to no information on what to expect in terms of recovery. Thank God for the good people here or I think I would have gone crazy worrying. The recovery can be long and hard for some. I had jagged motor control for approx 3 weeks afterwards and kept thinking they had nicked my brain until I finally read that this was quite common with the procedure. I also experienced a whole lot of disequilibrium (like an elavator dropping ten floors suddenly) and oscillopsia for a number of weeks afterwards. Others found the recovery process quiet easy and were up and about, and even working, after a week or two.

  3. mangolover

    mangolover I will sleep when I am dead

    I can only offer my experiences I had with my daughter's surgeries. She had 2 mastoidectomies from growths in the middle ear and mastoid. It took her a good 6 months to recover each time and she was very young when she had both. So give yourself time to heal and give the surgery time to fix what is wrong. It is a very small space and there is always swelling after surgery. So that will be a factor too.
    I hope this helps. Good luck on your proceedures!
  4. Henrysullivan

    Henrysullivan New Member

    Before you have the surgery, exhaust every non-invasive treatment reported to have helped others. Surgery changes the equation. Afterward you may have little chance that one of those treatments might work.

    That is the best advice I can give you or anyone.

    Good Luck Anne Marie,
  5. Verti_Geaux

    Verti_Geaux New Member

    Thanks, Amethyst!!! I guess I just over-looked your reply from the other thread. I apologize! See! I'm bad about finding things I've already posted! Ha! Ha!

    Yeah, I want to hear all about the surgery and the recouping. My doctor said I'd be "good to go" in a week!!! Maybe that's wishful thinking! You can PM if you like. I'm sure people have heard this over and over again. But, it's new to me and I'm getting a little scared...........: (

    Jeanette - in a mastoidectomy do they remove a piece of your skull? If so, what do they put in it's place? I'm confused............ ???

    Hank - Good advice. I've been doing meds and diet for 3 years and it worked until now. Been having attack after attack since Mar. 20. I've GOT to do something! Single mom, gotta work, and I'm a teacher. They can't keep carrying me out of my classroom or I'm going to lose my job! : (

    Thanks for the replies!!!

  6. mangolover

    mangolover I will sleep when I am dead

    In a mastoidectomy, they make an incision behind you ear and open the mastoid cavity from there. In my daughter's case, they removed the bony air cells and then made an opening into her ear canal and kept the cavity open. They can close it with a bone graft and usually it will heal just fine.
    I agree with Hank in that you should use surgery as the last resort, if you are able. If not, make sure the ENT that is doing it has done many of these before. I was fortunate that we were able to have the head of the ENT Dept at UC Davis here in CA do my daughter's surgery.
    Please let us know how things go.
  7. survivedit

    survivedit New Member

    HI Anne-Marie - Amethyst's description is right on. That's what they did to me as well, only they closed my incision with stitches instead of staples. They don't open your skull, but they do remove some of the mastoid bone - that's the one you can feel right behind yor ear.

    I think 'good to go' in a week is a little on the too optimistic side. You'll probably be able to get around the house in a week and get in some short walks, but it was 2 weeks before I could get around very well and a month before I felt 'normal' again. I, too had some equilibrium problems at first, but they weren't too bad. I stayed off work for 2 weeks, but wish now i would have done another week. You can expect to:

    be tired

    be sore around the incision

    not be able to sleep on tht ear

    feel like your ear is a piece of wood glued on to the side of your head

    feel like your ear is packed with cotton

    be uncomfortable with the giant bandage you'll wake up with

    I'm making it sound more awful than it really is, but that was the reality for me. I think if you're prepared for it, it will go a lot better. Plan on taking it real easy for as long as you can and hopefully you have someone to take care of you and help you out while you recuperate.

    it's definitely uncomfortable at first, but every part of it is bearable and it does improve over time. The surgery was a success for me - no vertigo for 15 months now and I would do it again if I have to.

    Good luck and hang in there.

    Bob W
  8. LisaB

    LisaB New Member

    For me, he cut from top of ear to bottom as Amethyst says, but my doc used stitches that just dissolved. Nothing to remove later. I ditto that you should not worry too much about having odd sensations.....I thought at first I was worse, but you have to give your body time to recover from being cut, and stuff is swollen inside, sometimes intensifying the symptoms. As I've said, I think, the first week was the wrost but I had no terrible dizzy spells right after the surgery so for me that was a plus right away. Wobbly, yes. Lisa :)
  9. Linda1002

    Linda1002 New Member

    This picture (scroll down) is from Tucker's VNS, but it might give you an idea anyway:

  10. survivedit

    survivedit New Member

    Linda and Anne Marie - that picture of Danny is nothing like what you get with endolymphatic sac decompression. It is like described - a cut from the top of the ear to the bottom along the back of the ear where it attaches to your head. VNS surgery is much more serious than ESD.

    Bob W
  11. Linda1002

    Linda1002 New Member

    Yes, the VNS is much more serious than the ESD.

    Does anyone have a picture of his or her ESD surgical area?
  12. Verti_Geaux

    Verti_Geaux New Member

    Thanks Bob & Thanks to all that replied!!!

    I'm just getting jittery, so the more I know about it, the better off I'll be. I'll have the whole summer to recoup, so that will be good. And I have family & friends that will care for me. The fear of the unknown is the worst, so I like hearing all about it! Thanks so much! I hope I do as well as you did, Bob!

    We always go to the beach the last week of July & 1st of Aug., so I'm hoping I'll be able to do that. Surgery is June 18th. But, we'll see. If I can go, good, if not, there will be other years. I've just got to get better before school starts. My principal is NOT being very compassionate!!! Been there 7 years and only had 2 attacks there, but SHE took me home both times!!! Ughhhhhhhhhhhh

    I do pretty good with pain as I've already had a masectomy and reconstruction, and that was PAINFUL!!!

    So, I'm just PRAYING for the best! If anyone has anymore pics, I'd love to see them!

    Thanks again!!!

  13. Amethyst

    Amethyst She believed she could, so she did.

    Hi Anne-Marie,

    I'm sure you'll be able to enjoy your time at the beach, as long as you're taking it easy. My recovery was similar to Bob's but perhaps a little slower. When I awoke from surgery I was in enormous pain espescially through my neck. I was given morphine intraveneously in the recovery room and that quickly did the trick. Once I was up on the ward (I stayed in hospital overnight) I was only given oxycontin and Tylenol 3's which really wasn't enough. By the third or fourth day the pain subsided though. I was nauseous as can be for over a week, eating gravol like candy and unable to eat much at all (lost 8 pounds that week). The dizziness was horrible for a few weeks in my case (equilibrium issues primarily) and I experienced oscilopsia for a good 6 weeks - makes chewing crunchy food and brushing teeth a real challange. At 4-5 weeks I started to feel more like myself and the recovery went quickly from there. It seems to me, from what I've seen people write of their experiences, that you should expect to be in ok (but not great) shape at 4 or maybe 5 weeks. As long as you have lots of time to recover you should be just fine. A few seem to improve much more quickly but the average seems around 4 weeks.

    On top of the dizziness issues, I had very little hearing in my affected ear which improved slowly over the next 4 months (although I've had a significant change in my hearing loss since the surgery - no one knows if it's due to the surgery or not). The tinnitus will likely be very loud as well - mine started settling down after a month or so.

    That's about all I can think of right now but please keep us up-to-date on your recovery process and we can answer any questions you have. I'm very happy to hear you have lots of time to devote to your recovery - I think that will really help. It sure helped me (been off work for a year now).

  14. Verti_Geaux

    Verti_Geaux New Member

    Thanks everyone for replying with answers to my questions. The time is drawing near. :-\ Only 2 more weeks......... I have a couple of more questions for you wonderful peole that have had the surgery.

    1) Do they shave part of your head? :eek: Not that it matters....... and
    2) Did you stay in the hospital or was in out-patient?

    Mine will be out-patient. I'd rather spend the night!!! My Neurotologist is going to do the surgery and I feel confident in him. My ENT wouldn't touch this! LOL!!!

    Anywho......... thanks for the replies!!! ::)
  15. DizzyDon62

    DizzyDon62 My Hearing Ear Dog Ember

    I have had it done to both ears and they just shave a little behind your ear and it was an overnight stay in the hospital. I just had my last sac surgery on April 10th I wish the best for yours

  16. Verti_Geaux

    Verti_Geaux New Member

    Thanks, Don. How is is working for you? Are you getting results. You can be honest with me. I just want to know what I'm facing and what my odds are.
  17. DizzyDon62

    DizzyDon62 My Hearing Ear Dog Ember

    The surgry did work for me as far no more vertigo but if you would like to chat I can go into the chatroom

  18. LisaB

    LisaB New Member

    Anne Marie, mine were both outpatient. I did not spend the night. Lisa
  19. survivedit

    survivedit New Member

    Hi Anne Marie -

    They only shave about 3/4 of an inch around the ear.

    Mine was outpatient, but it was a very long day. I had to show up at the hospital at 8 a.m. for all the check in stuff (bring a credit card, healthcare power of attorney, etc.) and then did lots of waiting. Finally got me prepped at about 2:30, surgery at 3:30 and they were waking me up around 5 p.m. They wouldn't let me go until I ate something and that wasn't until they had the pain under control -about 10 p.m. By then I was beat and didn't care where I stayed, but they wanted me out. I think that's as much for insurance reasons as anything. I was staying in a place attached to the hospital (It was St. Vincent's in downtown LA), so it wasn't a big deal to get there. Depending on what time of day you have the actual surgery you could easily do it as outpatient if they do the operation early enough, but I would guess if you don't want to move, they won't make you. I don't know if that's something you can pre-arrange at the hospital or not. Whatever you decide I would recommend not going very far at all that night or the next day. Also bear in mind that if there is a complication from the surgery (those are not common) you won't want to be too far from the hospital. I was so tired that night tht I could even sleep with the gigantic bandage on my head. We tried to drive home to Flagstaff the next day and that wasn't a good idea. Very quiet day that day is what you want. At the very least get a room within a few minutes of the hospital.

    Also - bring a button down shirt - you won't be able to get a pull over shirt on with the gigantic bandage.

    Gigantic bandage comes off in 24 hours - big relief.

    You won't be able to eat or drink after midnight the day before the surgery. I had a bunch of pasta for my last meal thinking it would stay with me pretty long ( I like to eat). That seemed to work pretty good. Plenty of water, too so I wasn't dehydrated going in.

    There was lots of down time that day so maybe a book or something to occupy your mind while you wait if you get the same scenario.

    I didn't have to get a catheter.

    It will all go good. Think positive and if you have any more ?'s - fire away.

    Bob W
  20. survivedit

    survivedit New Member

    Success rate is about 75% and there doesn't seem to be any indicator of who is a good candidate and who is not.

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