There are a few different surgeries that are performed as a treatment for Meniere’s, this post will focus only on the 2 that I have undergone. Getting Tubes in my ears, and Endolymphatic Sac Surgery.
Tubes – A Tympanostomy tube (sometimes called Pressure Equalization tube, a Ventilation tube, or a grommet) is inserted in the eardrum to maintain a tiny hole. This procedure is often used to help people with chronic ear infections, especially children. Since patients with Meniere’s normally have fully functional Eustation tubes placing “ventilation” tubes in the ear shouldn’t do anything. However, many doctors still try this, and many patients say that it helps.
I first had a tube put in my right ear in the doctor’s office. No anesthesia at all. I will never do that again. It was a horrible experience. This tube fell out within just a couple of months. I then had a T-tube put in, they are more permanent, often lasting years, and that was done under general anesthesia. This did seem to help my symptoms for a long time. When my symptoms returned we found out my tube had fallen out, at this time I was having trouble with both ears. So I had T-tubes put in both ears. The symptoms did not get better. At this time my old ENT told me he didn’t really know that much about Meniere’s. I immediately found a specialist. Dr. Kaylie, an otolaryngologist told me the reason I felt better could have been that I was just having a period of remission. He pointed out that my tube could have been out a long time before I started having the attacks again, and we simply didn’t check it until the attacks came back.
So did the tubes work for me…maybe, maybe not. I thought they did for a while. (over a year) But the symptoms came back, and the new tubes didn’t help. So I just don’t know.
Endolymphatic Sac Surgery – There are a few different Endolymphatic Sac Surgeries: Endolymphatic Shunt Surgery, Endolymphatic Sac Decompression, and Endolymphatic Enhancement Surgery. Often these terms are used interchangeably, but they can mean very different things.
Endolymphatic Shunt Surgery normally means that the surgeon puts in a tube to “shunt” the fluid from the endolymphatic sac to either the cranium or the mastoid cavity in the middle ear. Most people think that the tube is a “shunt”, but the definition of the word shunt is to move fluid from one area to another.
Often the term Enodymphatic Shunt Surgery is used for each of the endolymphatic surgeries, since the fluid is being “shunted” to a different area in each.
Endolymphatic Sac Decompression Surgery is a surgery in which the surgeon cuts a hole in the endolymphatic sac and drains it, but doesn’t put in a tube.
In Endolymphatic Enhancement Surgery the surgeon doesn’t normally drain the sac, he or she will enlarge the area around the endolymphatic sac so the sac will have more room to expand during an attack. Therefore, the fluid will have more room within the membranes and sac without causing it to leak or burst. This is the surgery that I had, however, my doctor often called it a “shunt” surgery.
Dr. Kaylie put an incision around the back of my ear. He went in and removed part of my temporal bone and skull around the Endolymphatic Sac and Dura Mater. Now my membranes should have plenty of room to become dilated without harm.
We decided to do the right ear because it was the original ear affected, and it was causing most of my vertigo attacks. For months I had very little vertigo, and even when I started having attacks again they were being caused from my left ear. I think my hearing dropped in the right ear after the surgery, however, it has been stable since then. I will now be able to get a hearing aid for that ear since the fluctuations have stopped.
I was very pleased with the results from this surgery. It drastically reduced the number of attacks I was having in my right ear, and it stabilized the hearing in that ear. However, the recovery was difficult. I was in and out of the hospital the day of the surgery, but this is a very invasive surgery. It was painful for months. I think the pain would have been lessened if I didn’t have to wear glasses. My glasses would irritate the incision. I had to take the arm off of my glasses for a long time. I do however, want to stress that this was not an easy in and out surgery. At least it wasn’t for me. The recovery period was much longer than I thought it would be. (over a month) However, I’m not sorry that I did it, and I would do it again if necessary.
***update*** after a year, I ended up having the endolymphatic sac surgery in my left ear too. The vertigo was cut by about 75% for about a year and a half. Then it came back full force. I do not feel this surgery was worth it. If asked at this time, I would not have the surgery again. I’m glad I had less vertigo for about 2 years, but there is a possibility I may have had less anyway, and the surgeries were very difficult (for me) The first was very painful, the second caused severe vertigo for over a week.
I started having attacks again within 5 months of the surgery, but they were being caused from my left ear. It was causing attacks as often as 3-5 times a week. I went in to talk to Dr. Kaylie about having the surgery on my left ear, but he asked me if I would be interested in possibly finding the cause of my Meniere’s. Of course I was interested…
and that will bring us to my next post: Treatments for Meniere’s – Part 4 Stabilizing Abnormal CSF pressure.
I’m also happy to announce that I will be having a few Guest Posts coming up after my next post from fellow Meniere’s patients who will talk about the different treatments they have undergone.
To read more about different treatments, there is an intensive list at Meniere’s Info.com.
If you have any questions about the treatments I have undergone, please feel free to ask me about them, either in a comment or feel free to email me!
Picnic with Ants 
Thanks for this explanation. You’ve given me a lot of explanation already, but I didn’t realize it took you over a month to recover. George and I have a trip planned for 4 1/2 weeks after my surgery. I hope that I will be okay.
Btw, I hope you don’t mind all my posts! I really appreciate what you’ve been sharing.
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Kelly, I love all of your posts! I love getting feedback, comments, support, anything! It’s great.
I can’t tell you exactly how long it took me to feel well enough to travel, but it took a long time before I felt “normal”. I’m a little concerned about your headaches. I remember having a lot of head pain after the surgery, including headaches. I hope you don’t have increased headaches during recovery.
If there is anything I can do, please let me know. wendy
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Hello,
I have really enjoyed reading your blog.
I just wanted to say that the urge to urinate may be a symptom of increased Cerebrospinal fluid pressure. I was wondering what treatment you are receiving for this symptom?
I have similar symptoms to yours, I’ve been through the tube experience. Have you tried Amitriptyline, Levaquin or Kangen water? All of these treatments have given me good results.
Best wishes,
Isabella
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Hi Isabella,
I’m glad you are enjoying my blog.
I have low cerebral spinal fluid pressure. Well I did until they patched the leaks, now I’m feeling much better. I’ll talk more about this in my next post. (hopefully, I’ll have it up today.)
I don’t have the urgency to urinate all the time any more, just sometimes it will flare up. My GYN thinks I have Interstitial cystitis (IC), I will be discussing this with her in more detail next week.
I haven’t tried the treatments you’ve mentioned. I think I have been on Elavil, an Amitryptyline, but I’m not sure. I haven’t been on Levaquin or tried Kangen Water. Our water tests very pure, and I’m happy with it.
I should say I’ve been on so many different medications over the years for my different chronic illnesses, that I just can’t keep up with all of them.
I’m happy to say that right now I’m on less medications daily than I have been for years. I take levothyroxin (Synthroid) for hypothyroidism, Lamictal for Bipolar disorder, Doxepin (for migraines, I may be able to get off of this soon.), and Limbrel – a precription food supplement to help with inflammation, (this is to help with my hip pain.)
Have you been diagnosed with Meniere’s Disease too?
Thanks again for reading my blog.
If you have any questions I haven’t answered here, feel free to comment again, or drop me an email.
wendy
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I just had my surgery on Tuesday. This recovery is SO hard. I knew it would be hard but I had no idea that it would be this difficult. Any suggestions or words of wisdom would be appreciated. I’m happy that I did it. I teacher Kinder and have two small children at home. I’m so hopeful that in the end I will have an improved quality of life. I just am in such pain and so uncomfortable right now. Help. 😦
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Melina,
I hope you get as much relief from the surgery as I have. Unfortunately, I have bilateral Meniere’s, so even though my right ear has stabilized, the left ear is still acting up from time to time.
If your results are as good as mine, you will have an improved quality of life. (I’m assuming you only have unilateral Meniere’s). The recovery is hard, harder than I expected. And it hurts for some time, I won’t lie. But it does get better!!
Feel free to email me or comment more here if you have any questions, or need some reassurance, or just want to vent about it!!
Good luck to you!!
wendy
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I was diagnosed with Meniere’s in 2009. I had shoulder surgery in March 2012 had a severe fall and hit my face, my attacks had been gone for almost a year returned. I started Diazepam and promethezine. My Dr had Mayo schedule a shunt surgery for September 27 and I an very nervous and concerned about it. I had to stop the Diazepam because it depressed me and stopped preventing the attacks, we switched to Lorazepam and I was able to work off of it and not had a definite attack for almost 2 weeks. I want to wait for the surgery, but not sure
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Kitty,
Some people have a hard recovery…I think most people who’ve had it and commented here has had a hard recovery, but most people don’t. I did, a bit. The first time, it just hurt more than I expected. The second time I had vertigo for a week. But it was positional, so if I stayed flat the world didn’t move.
But know. this is not the norm, most people have minimal pain and no vertigo, or maybe one day of it.
If I started having drop attacks I wouldn’t put it off. A friend of mine just broke her collar bone and shoulder from a drop attack.
I’ve had wonderful success with my surgeries. The vertigo from my right ear lessened right away after the first surgery. then when I had the surgery on the left ear in December I’ve only had one real Meniere’s attack. (I also have vertigo from migraines, but it’s different.)
If you want to put it off, you know it’s always an option. Don’t be pressured into surgery, but don’t be too afraid of this one. Even if you have a rough recovery, it normally only last a short period of time. Feel free to email me if you’d like.
good luck
wendy
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I had the endolmphatic sac decompression one week ago yesterday. I was shocked at how painful the recovery was when all the articles on the web say you can return to work the next day. Today I had a drop fall. The doctor said I am still healing but I am so worried that I will not return to my “normal” life as I know it. How long does it take to know if the surgery worked? I am only affected in one ear. Thank you!
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I can only tell you my experience. I’ve had the surgery in both ears and the recovery was different in both, and both were odd. As you said doctors say it’s not a big deal. At most 3 days out. Not for me. The first time I had a lot of pain. I think the cartilage in my ear cracked. All I know is that I hurt a lot for weeks. But had no real dizziness past the first night.
I had no bad vertigo for months, and then when it started back it was the other ear. The surgery recovery on that was rough. I had swelling pretty bad, and it caused me to have vertigo for a week. It wasn’t Meniere’s vertigo because if I stayed flat in bed it would go away. so that was an interesting week, in bed, having to have help with everything. I literally could not lift my head.
However, again after the harsh recovery the vertigo slowed way down.
Now instead of severe vertigo at least once a week, I have it 2-3 times a year…and it’s always been under times of great stress.
You may have more swelling than most too. After a month of my last surgery I had an MRI, and it showed I still has swelling in that area.
It was a very difficult recovery for me, but I’d do it again in a minute. The great reduction in severe attacks is such a wondrous thing. (I also have Migraine Associated Vertigo, so I have a lot of mini attacks and I don’t know if it’s Meniere’s or Migraines. I assume some of both.
Good luck!
I hope things are better soon.
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Thanks. I guess it’s good to just hear validation that it’s not unusual to up and running the next day.
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Any time. If I can help in any way, just give me a shout out. you aren’t alone.
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Hello.
I am getting ready to have this surgery. I also have bilateral Menieres. I was diagnosed 8 years ago. I have had 3 gentamicin injections in my left ear. Multiple ambulance rides to the Er , tubes in both ears, and the latest was the Meniett Device. Nothing has worked. I am completely deaf in my left ear. I take lasik , potassium, on a low sodium diet, I have done it all. My Menieres and vertigo are progressively keeps getting worse. My doctor has me on diazepam but it is not working any longer. I am a very unique case as he has said. I just need some relief. I am a counselor at a pre-k -12 school and love my job. I am afraid I will not be able to work. I have read all. 0f your information and it sounds like you and I are very close to having the same other issues as well. Any more advice you can think Of would be greatly appreciated. Oh I forgot to mention I have Cluster headaches on the right side and vestibular migraines on the left. I was diagnosed with the cluster headaches in 1980. Thank you in advance.
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Hello Lori,
I’m so very sorry you are going through this. You do sound like a very complicated case, like me.
I didn’t have the gentamicin injections though, they wouldn’t do that to me because it was “too destructive” since I am bilateral. I did have a doctor at John Hopkins who would have done it, but he was too far away for me to see all the time, and my doctor at Duke wouldn’t do it, and no other doctor that I saw would. They were afraid I wouldn’t have any balance left if I did. How is your balance?
I had the endolymphatic sac enhancement/decompression/ surgery…what ever you want to call it….I didn’t have the shunt put in…on both ears. I felt it helped some for a little while, but it didn’t last. I haven’t talked with anyone who has had it and had lasting results from it. I honestly can’t tell you if I’d do it again if I knew then what I know now, but I might, when you are desperate, you do a lot of things.
The only thing that I found helpful was vestibular rehabilitation therapy. My vertigo calmed down a lot after that. I was told a long time that it wouldn’t help me, but I finally talked a doctor into sending me to one and I found it very helpful. When I first started I went home with vertigo every day, but soon it got further and further apart. Of course, not everyone is the same.
I have finally gotten to the point where I don’t have as much vertigo from Meniere’s now. I am deaf and have cochlear implants in both ears. You mention you are deaf in your left ear, are you planning on getting a CI? Which ear are you getting the surgery in? If it’s your left ear, then the Endolymphatic surgery is mostly a mastoidectomy, plus a little more…and the CI surgery starts off with the same type of surgery, so you will have had most of that surgery done. If you are going to get a CI, I’d ask my doctor if it’s really worth getting the endolymphatic sac surgery, or if the CI surgery would do the job. I’m not sure, but it might.
I’m extremely impressed that you are working. I haven’t worked in many years. I also have vestibular migraines, chronic migraines (that have been intractable lately) and clusters (I think you know that from your comment). You’ve been dealing with clusters for a very long time. I’m so very sorry. They are torture.
If you want to talk with me about any of this, please feel free to email me at apicnicwithants@gmail.com
my heart goes out to you. good luck my fellow spinner.
wendy
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Hey there thanks for this, i am ( or was a musician) sadly, i developed this months after a near 1 first record deal attempt in 06 at the age of 26, vertigo was horrendus at first, killed my music career and my plans to becoming a pilot, (i had just enrolled in a helicoptr fight school with the first attack happened) hearing went down in the right ear 80% i found a great e.n.t. and he started with meds and low salt diet and it seemed to had helped greatly, for a while, went once almost 6 months without vertigo, went through those horrendus dizziness tests ( im sure you did too) at Emory the Doctor wanted to cut the nerve, i didnt want something so permanent, but when i hit this good period they just would have a dietician see me at Emory, so ive just had been rifilling meds with my e.n.t., then last november 13, i had a bad drop of hearing in my left ear, (my good ear) , with bad return of vertigo, and what i feared was true is was starting in my left ear, so like you, im bilateral.its now confirmed, i have 80% hearing loss in both ears, its calmed down alot but not gone away im having a bad period and was looking at the shunt operation info when i came to your site, im all out of good ears, so im thinking about it if its start to go downhill,i have loosend up on the strict low salt diet im gonna see if that helps first but may have this done, im an artist now, and getting my art degree with a correspondence course id like to become animator, but im on disabilty cuase the (waviness) and vertigo are often enough and unpredictable for me to have gainful employment, id like to to stay in touch with you, in case i do have one of the shunt operations and your the only bi-laterail case ive found, sorry for any misspelling, these smartphone buttons are smurf sized, thanks and God bless-
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Sorry in my previois post i meant to say that i slacked on the low salt diet, but will try to restart keeping it strict-
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Tony,
It will probably be easier to answer you on email…so drop me a line…look at my About page.
Thank goodness you didn’t have the nerve cut…if you had then then went bilateral, you would be a mess! that was irresponsible. IMHO.
But I’ll tell you all about the surgery…and all my stuff. I’m a rare case…on the bad side…so don’t let me scare you….but also I’m happy. So it’s not that bad. You are finding a way for your artistic outlet. You aren’t sitting around thinking….I just want my life back…that’s a BIG THING. I’ll talk more in an email. drop me a line…if I don’t hear from you soon, I’ll try and track you down! I’m not giving up on you!
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I am 2 days post op shunt revision. My last endolymphatic shunt was 7 years ago. Once recovey was over I had great results. Found scar tissue had grown over this one. I don’t remember the first one being this bad. The pain and dizzyness/ nausea, has been horrible. I was suppose to go back to work in 2 days. Not going to happen. May loose my part time job. But I hope for full recovery. Are there any exercises to help with balance?
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Rebecca,
I didn’t actually have a “shunt” put in, my surgery was more what they now call the endolymphatic sac enhancement surgery. but often still call it “shunt” surgery because they are shunting the fluid from one place to another…at least that’s the explanation I was given.
I’ve had this surgery on both ears. and each surgery was drastically different. DRASTICALLY! so it doesn’t surprise me that your surgery now is different from your last one. Just be assure, they both healed. One of my surgeries hurt more, but I was much more mobile…the other I had vertigo for over a week. I do not understand why a doctor would tell anyone they could go back to work in a couple of days….you are having your ear pretty much taken off…and then they are working in your skull. It’s pretty major. *sigh* give yourself a break.
as far as exercises for balance. there is something called vestibular rehab. I was told it wouldn’t work for me. I think that’s because I’m bilateral, if you are unilateral, maybe it would work for you?? I don’t know. I hope you feel better soon!! and no more revisions.
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Well its been a month since my shunt revision. I had a week where it wasn’t too bad, but starting Thursday evening I was back to nausea vomiting and pain in the ear was horrible. The roaring is almost unbearable it is so loud. Suppose to start a new job on Tuesday. I don’t have much hope at this point.
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oh my dear, I am so sorry. Do not lose hope. I know I had an MRI over a month after one of my surgeries and it showed swelling still in that area,and my doctor said it wasn’t unusual, perhaps you are very sensitive to it.
I know the pain from my first surgery took a long time, but it was from the outer part of the ear, not the inner part.
are you having pain from inside?
when was the last time you were checked out?
just wanting to make sure you don’t have an infection….pain in the ear, I usually have an infection, if it last more than just a day.
Now the tinnitus, it can vary for me. I will have some at some point every day that it is “deafening” (since I’m deaf sounds kind of strange to say that). but it doesn’t stay that way. I always feel off during that time, like I’m going to have a full spin, but I don’t.
I’m not sure why I don’t now, I’ve changed so much. Not that I don’t have one now and then, but normally I don’t. I’ll have mini attacks, and I often feel like I’m on a boat, but I don’t have the full out throw up for hours and hours attacks any more…well rarely.
I hope you can find some way to get some balance back. I’m still really hoping you get at least a little bit of relief from this surgery. something. Even half as many attacks in the long run.
I’m pulling for you. Really I am!!
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Hi Wendy I just had my endolymphatic sac decompression surgery on Friday and instead of me gaining more of my hearing back it feels as if I lost more. I was wondering was this normal for me and if it is how long did it take for your hearing to be restored. Please I really need to know I’m getting so discouraged.
Thank u, crystal
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Crystal,
You still have a lot of swelling and will for a while, you can’t really judge how the surgery is working yet. This surgery is not for your hearing though. It is to help with your vertigo. My hearing was not affected by this surgery one way or the other. It did improve my vertigo, by a certain amount. However, it didn’t stop it. I do have a couple of friend who haven’t had any vertigo since she had the surgery. it is possible. Mind is much less, it comes in cycles. So take heart that your vertigo may get much better. As for your hearing. I’m not one to talk to about that. As I said, this surgery isn’t to repair your hearing. I lost my hearing. it is not as devastating as I thought it would be. I have 2 Cochlear Implants now. It’s a completely different way of hearing, but I hear. And I have learned so much! The world is different. You can either look at it as a loss, or an entirely different way to see the world! I took the later. And I love my life. I “hear” things I never “heard” before.
Good luck Crystal.
Let me know how you are doing.
sending you healing thoughts.
wendy
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So after your surgery it helped you a little with your dizziness but it made your hearing worst?
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No the surgery didn’t make my hearing worse. The disease did. My hearing loss accelerated much faster than most…frankly faster than anyone else I’ve heard of. I’m bilateral are you? The hearing loss when I was unilateral was very slow…that’s more normal. When I went bilateral it Mr. Meniere’s decided he was in hurry with me and just went crazy in there. I have one of the best doctors, I personally think he’s the just the bestest!, and he was shocked. He’s at Duke. He said I am a very unusual case.
The surgery helped my vertigo about 70%. I lessened the intensity, and how often it happened. More so the intensity. But I have cycles. Like now. I have had a few weeks of a lot of attacks, but I can handle most of it now. I practice mindfulness techniques and I am doing very well. I had my first really bad major attack in a long time just night before last. It was a surprise. That hasn’t happened in a LONG time.
I would do that surgery again in a minute. It didn’t help me as much as it has helped others I know. but it helped me a lot. Before the surgery I was having attacks almost daily.
Does that help?
There really isn’t anything they can do to stop the hearing loss for Meniere’s. However, MOST people do not lose all of their hearing. The people you find on line are usually the people who are the ones who have more attacks and hearing loss, because the other people don’t have much to talk about, ya know? I know when my symptoms weren’t on the drastic end….for many, many years….I wasn’t blogging about it.
What I’m trying to say is….don’t let my story scare you.
But if you are on the high symptom side. Know you aren’t alone and let my story inspire you. 🙂
any help?
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I I’m on the serious side of having menieres disease. I have already lost almost total hearing in my left ear. Now they are trying to save the right ear. They even told me that by getting this surgery it will help me with my hearing a little better as well as with my vertigo. But I know you have experience the surgery that I’m under now and you haven’t had any luck with your hearing improving and that’s what I would like to do. I think I can handle the vertigo a little better then not being able to hear. What would be a step u a took to hear better
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For those who need some hope, this surgery extremely helpful for me! It changed my life at the time! I had endolyphatic sac decompression surgery WITHOUT a shunt resulting in over 3 years of being vertigo-free! I’m unilateral. I was diagnosed with Meniere’s in my Right ear in Fall 2010 with mild hearing loss in the low frequencies. My vertigo was severe and disabling. March 29, 2011, I had the endolymphatic sac decompression surgery without a shunt. I had an extremely difficult recovery from the surgery (3 weeks in bed) BUT it was completely worth it as after I was completely recovered from the surgery (about 2 months post surgery), my vertigo went into complete remission for a little over 3 years. I had a Meniere’s related vertigo attack in June 2014 and nothing again to date. . My hearing loss also is still mild. I hope this can give people hope who are having a difficult time with their recovery. Don’t judge anything too soon. Our bodies take a bit to readjust. Keep holding onto hope!
(Wendy, I think I might actually finally write a blog post on my surgery experience—which was horrific but good outcomes. Thanks for the inspiration. I don’t think I’ve ever written about my Meniere’s come to think of it. How strange! By the way, you are doing an incredible job being a resource to people! You are a warrior and I am inspired by how you deal with/cope with your Meniere’s. I’m thrilled to see people finding your blog and find so much help and support from you!! I hope you don’t mind me sharing.)
Hugs! Kelly
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Kelly!
I NEVER mind you sharing. Actually you were one of the friends who I was mentioning when I said I had some that had good outcomes from the surgery.
BTW…I too have NO SHUNT.
Hugs to you Kelly!!
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Crystal,
I can honestly say that I would have rather have gone deaf than have had the vertigo as bad as I did. I wanted to die.
I don’t know of anything that can save your hearing. My doctor had no way to save my hearing. Meniere’s is a devastating disease. My doctor told me when I first went to see him. (He’s a specialist at Duke) that is one of the worst diseases he knows of that doesn’t kill you, but it can make you wish you were dead sometimes.)
I thought losing my hearing would be devastating. I hasn’t been. I don’t want to scare you with my story about my hearing loss, because it is a very drastic one, and it doesn’t happen this way to most people. So don’t think it happens this way to most.
I had slow hearing loss in my right ear over 15 years. No need for hearing aids. Then I went bilateral. Suddenly I was having vertigo attacks all the time, and with each attack my hearing dropped, and didn’t come back up like it used to. I got hearing aids. Within 3 months I couldn’t hear out of one of them. The sounds were too distorted. I couldn’t hear…well I heard things but I couldn’t make any sense out of them. I got a Cochlear Implant. different people take different amounts of time to get used to CI’s, some hear great from the get go, others take longer. I think I’m in the middle. the thing about CI’s your hearing gets better and better the longer you have them! Within a couple more months….the other ear…distortion. I got my second CI a little over a year after the first.
I’ve had that CI for a year now. and I hear pretty darn good. I have limitations, but I do pretty good. I even like the quiet when I take my CI’s out. Love it actually sometimes. I can sleep through anything. LOL. I can unplug when I am in a noisy place. I never have to put up with hearing a child screaming in a store. It’s not so bad. Really! If you have a good doctor, you will never go without some way to hear.
you can email me if you want to talk more about this in detail. apicnicwithants at gmail dot com
or we can still talk on here.
I am in a group with other Meniere’s people with hearing loss, I like a lot. It’s an email board, and it’s a good group of people. You might like talking to them. They have a plethora of knowledge. You can go to their web page to join the email list. http://www.saywhatclub.com/ They also have a facebook page now, but I haven’t even checked it out yet. I like the email board.
Please, don’t let my hearing loss story scare you. Most people don’t lose their hearing as fast as I did. and most don’t lose it to the point that they need cochlear implants. there are a few on the board, but you have to realize when people reach out to places like that, they are often the ones who have been through a lot. However, a lot of the people have hearing aids, or just have some hearing loss and are talking about it.
With my CI’s I now have blue tooth capabilities. I sat writing on my computer yesterday plugged in listing to music straight in my ears. I used to hook up my hearing aids to the phone or my box connected to my TV and I had instant surround sound…it’s pretty great. (I can do something similar with my CI’s too.) Yes I have challenges, I can’t hear people come up behind me a lot of the time, I have trouble in crowds, there are things that are hard. But I take it in stride. it’s part of me. i work hard on accepting all of me, the good and the bad. I’m even working hard on accepting the vertigo. The more I accept the better I deal with it. The less stress and well, it’s just not that big of a deal any more. (I will say the hearing thing, I noticed that before I started adopting this philosophy.)
good luck my dear.
keep talking, it helps.
wendy
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Hi there. I am writing you far away from the US, i am from Europe, so please excuse my English, as i am not a native speaker. It just happened to read your blog and the information i found inside, were so helpful.
I was dagnosed with Meniere’s disease 16 years ago. It started as a permanent noise on my left ear. No vertigo, no nothing at the beginning. So the doctors told me not to worry. As time was passing by, i had severe vertigo incidents and i lost my hearing progressively. One year ago, i was under big stress and i can still remember the time when i turned to my husband and said: i just lost much of my hearing. And it was true. Now i can hear only 20% from my left ear.
Through the years i tried several medical treatments, some months ago i even tried injections directly into the ear. Nothing worked.
That is why i decided to go through the surgery of Decompressing the endolymphatic sac. I had the surgery on Monday the 10th (that is 4 days ago). During my stay at the hospital, probably because of the pain killers didn’t feel much pain and everything was ok. Everything but the hearing. My hearing was/ is awuful. When talking I feel like i am in a barell and i hear it all over my head… The doctor told me it was/is normal because there is still lots of blood in the ear and that it will go away as time goes by.
One day after the surgery i came home and that was when the big pain really started. Lots of pain…Unbearable. My ear hurts, is swallen, my neck on the left hand side hurts and of course when touching my left ear, i feel nothing at all, or almost nothing. There is this weird feeling while touching it, as i am touching sth else that is not my ear. Hard to explain, especially when english is not my mother tongue. All these past days i had difficulties even with eating, as from the pain i couldn’t open my mouth and chew. But today is the first day, that i am really better. Of course, there no way i go to work on Monday, i will have to stay in for one more week, as my ear is swallen, it still hurts a lot, my neck hurts a lot and the doctor advised me to avoid hair washing for 5-6 days.
I really hope that i will not have any more vertigo from now on. But although i know the surgery didn’t happen in order to improve my hearing, i really pray to God and hope that my hearing will improve after this decompression.
Thanx for your blog and all the info. It’s good to know that others can understand what i am going though… And once again i am sorry for my english. I hope i am easily understood.
Thank you and i really hope you are better.
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Coccinelle,
Your English is very well understood. Not a problem.
I had the surgery on both ears and both recoveries were different. I have a few friends who have had the surgery and their recoveries were different. You are lucky you haven’t had vertigo with the recovery, that often happens as the swelling is going down. The swelling…all the fluid in your ear is why things sound differently. You probably won’t have improved hearing…but I guess anything is possible. I will say, I was ready to lose my hearing to get rid of the vertigo. There’s always hearing aids and cochlear implants to help with that. Remember that, you can help your hearing, you can’t get rid of the vertigo so easily.
For the friends I know who have had this surgery, it has worked wonderfully. For me, it reduced my vertigo about 70% and reduced the severity. For a while. Now I have bouts here and there. I will suddenly have a few weeks that are hell and I will have to go and have a round of steroids to calm things down. But I am a very strange case. A hard case. I am very advanced. I have it in both ears, I’ve had it for over 20 years. I have 2 cochlear implants…so I’ve lost my hearing in both ears..usually people do not get to this stage. and if they do they stop having vertigo. I do not want to scare you. I am in the very, very rare group. I don’t know anyone who is like me.
But as for the surgery you just had, it is a high percentage rate of success. You may not completely get rid of your vertigo, but it should reduce it drastically.
Oh the feeling touching your ear will come back soon. I’m sorry you are having so much pain. When the feeling comes back touching your ear it may get worse. That is really when my hurt the most. The hurting inside you are having now is because your ear is trying to drain a lot of fluid but your Eustachian tube is too small to take it all away so fast. So it is all built up in there and pushing on things. (I hope you can understand that.) The Eustachian tube runs from the ear down the neck to the stomach…gets rid of the fluid that build up in your ear when you get a cold or allergies. that is why your neck and everything is so sore too. and it is sore because of the position they had you in for the surgery. They really gave you a strong local anesthesia on your ear, it wears off in a week or so…so soon….because they did a lot to the ear itself. that is why it feels funny. My first surgery when they feeling came back in my ear, it hurt a lot. the second one, it didn’t. So it may or may not.
The first one, I didn’t hurt so much in the beginning, the second one I did. The first one no vertigo, the second one a lot. It was so different.
I had the same surgeon, same hospital…everything. But the recovery from each surgery was so different.
About me now. I go up and down. Recently I’ve had a down spell. but it’s getting better. I just take it moment by moment.
If you ever want to talk, feel free to contact me, my email is on my About Page.
i hope you are feeling better…and hope the surgery is a great success!! wendy
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I am scheduled to have surgery on DEC 15. I am terified . I wanted to know what it will be like the day of surgery. Will I wake up dizzy and spinning and vomiting I will be having outpatient surgery and a 2 hour drive home from the hospital. What will the pain be like and how long before I feel half way normal. I am sorry for all the questions any advice is appreciated thank you
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I had the surgery twice. and both of them were different. I didn’t wake up with vertigo from either. However, I did have vertigo a lot the second time. I was not normal. as my doctor has told me, I’m never normal. 🙂
You will not be driving!! This is a major deal. The first time I had more pain, the second time very little pain. Ummm…Normal? Well, I don’t know your doctor or anything, and as I said, both of my surgeries were very different and I had the same doctor, same hospital, same everything. So…it varies.
Don’t be terrified, it isn’t that bad. Especially if you can take pain pills…I can’t, so that makes it worse on me. It also depends on how well you drain. My Eustachian tube didn’t drain well the second time so I had too much fluid so I had vertigo a lot. it was positional so if I was still it was better. this lasted about a week. This is VERY unusual. A week or so you should be feeling pretty good. You will be sore for a while. If you wear glasses it hurts, try to think of a way to make this better.
The night you first get home if it really hurts like it is pressing against you really bad, they may have put too much packing in your cup…take it off and remove some and put it back on. this made a world of difference to me. they may forget to tell you that you can take the cup off the second day or so, I liked it on longer, but just kept changing the dressing. my ear drained more. if your ear doesn’t drain much you may want it off. especially if it hits close to the stitches in the back. Do not put ice on it….I thought…oh it hurts and ice might feel good…WRONG! Ice near that will cause vertigo immediately. let’s see, anything else?
Really, don’t be too scared. It helps more than it hurts. If you want to email me….please do. apicnicwithants@gmail.com Remember, everyone is different. I have talked to a lot of people who have had this. Some have had little to no pain (I had really hardly no pain at all the second time), some have had a lot….some have no vertigo at all…I had NONE the first time….some have a lot. It is different. Most have some pain, and some dizziness, normally not full blown vertigo…a feeling like you are going to have it…you will feel like your ear is VERY full. I got a neck pillow and wrapped it around my head and caused it to be like a round hole around my ear so I could sleep on that side so it could drain. worked pretty well. I just kept changing cotton in my ear. The scar around your ear will fade and you will not even see it.
I hope you it all comes out well. I’m here if you need. I know someone else who is having it the same day by my doctor, so it’s a busy day for this.
Remember, you can’t predict or change the future, so don’t worry so much. It will come out as it will. You will handle it and it will be fine. You have been handling this disease, this surgery is not worse than that!!!!
Just think….less vertigo! I have one friend who had this done 3 years ago and hasn’t had a vertigo attack since! (I just found out I have a bit more than Meniere’s and it still helped me…so it is a good thing!) Hold on to the good thoughts, you will be just fine!
wendy
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Thank you for your response my husband will be driving me home from surgery. Dr. Yates from IU in Indianapolis is doing my surgery at 2:30. I am currently walking with a cane or walker due to falling all the time. So any help at this time will be better. I hope and pray things get better for you soon
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Could you please tell me how will my balance be after surgery I currently walk with a cane or walker due to balance issues and falling all the time I’m hoping this surgery will fix this
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jen….
I’m sorry I can’t answer that question. I didn’t get the surgery even thinking about helping that part, I got it to just thinking about relieving the vertigo.
If you are still having a lot of balance issues afterward perhaps you could ask your doctor about vestibular physical therapy. It helps a lot of people. I haven’t done it…yet…but it is something I’m looking into.
I’m sorry I can’t be more helpful.
Good luck tomorrow!!!!
Healing thoughts your way!
wendy
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Wendy,
Thank You Thank You for all your Blog Posts…. I have had MD for about 10 yrs now…Ugh!!!! Finally Diagnosed about 9 yrs ago. I finally had to get the Endolymphatic shunt surgery last week…very hard recovery but worth it!!! I have been living in a fog the past two months with, vertigo, nausea, Bobble-Head effect, drop fall fainting episodes, etc…. So when I came out of surgery feeling the immediate relief from the Bobble-head effect & less pressure~ I was amazed & elated!!!!! Haven’t washed my hair in a week cuz I’m too afraid before these stitches come out…LOL!!!!!
But thank you for the blog & posts… It has been wonderful reading!!!!
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oh Tina, you can wash your hair, just be a little careful. I was cautious, but it won’t hurt anything. 🙂
You’ll be getting those stitches out in no time anyway! Soon it will start itching back there and you will really want to wash it just so you can rub it some. LOL
I sure hope you feel much better.
Many people I know have had the surgery and their life just turned around!
It helped with me, but it wasn’t the miracle it has been for most of the people I know. However, I did recently find out that I have “more than Meniere’s” so don’t judge yourself by me. 🙂
If you ever need to talk or anything, feel free to contact me, there’s a contact form in my About Page. from there I will email you back.
Good luck to you fellow Meniere’s Warrior!
Peace!
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When you say you were diagnosed with something else on top of the menieres….what was that if you don’t mind me asking. I’m having the shunt surgery in two days and am nervous as heck. Michelle
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Hi Michelle,
I’m not sure where you read that part. For a while there I was diagnosed with high Cerebral Spinal Fluid…or Intracranial Hypertension. But that has kind of cleared itself up, at least for now. (a very long story). However, I do have “more than Meniere’s” but they don’t know what it is. I’ve been told I need to go to some place like John Hopkins Vestibular Clinic and see if they can figure out something.
Now, that has nothing to do with this surgery.
I will be happy to answer any questions you have about this surgery.
I think you are having it tomorrow?
I’m sorry I didn’t see this comment the day you made it.
I know of a few people who have had this surgery and have come out feeling much much better, vertigo has gone away for years.
Some have a hard time with the recovery period, harder than is expected, but many are great immediately.
I had pain for about a month the first time and positional vertigo for a week the second time. Both are uncommon, but as my doctors say…if it’s gonna happen to anyone, it’s gonna happen to me. 🙂
I think more people get in touch with me when they have a hard time than when they have had a very positive experience.
However, even the people who have had a hard time recovering, normally have very successful results in terms of stopping the vertigo….or at least reducing it a HUGE amount. For example, going from many times a month to once or twice a year.
I did work for me for a while. But as I said, I have more than Meniere’s, they think I have an autoimmune disorder, they just can’t pinpoint what. (I do know I have Migraine Associated Vertigo and BPPV now too, so that causes me a bit of trouble on top of things)
Is there anything else I can answer?
Please let me know how you are, and if I don’t hear from you before, please let me know how things go.
If you’d like to email me please feel free. There is a contact form under the About tab. I’ll email back ASAP. I promise. wendy
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Hi Wendy, had my shunt surgery Jan 13. Still have the spinning but mostly at night. If I had a lot of nighttime spinning, I wake up with nausea and light headed for most of the day. I also have the ringing in my right ear, loud, and some in my left! While in surgery, the doctors removed a tube they had put in 2 years ago, and patched my ear drum. There is still packing in my ear below the ear drum and behind it! I was wondering wether you had any of this packing put in, and if you know how it susposed to be removed! I really don’t want another surgery to remove the packing. I don’t return to myMD until March.did your ringing eventually go away along with the night spins?
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My goodness. Behind your eardrum? I have no idea how they plan on getting that out. So your eat isn’t draining through the hole from where they took the tube out? My first surgery I had a tube they removed too. and it actually went better than the second surgery because it was able to drain from that hole. It was messy but it was such a relief. and I had really no spinning from that operation. The second one, I had a lot of vertigo because of the fluid build up and swelling. With my second surgery, after the first week of constant vertigo, when I was having the spins like you are talking about, because the fluid wasn’t draining as well when I was lying down flat. The fluid needs to drain down the Eustachian tube, so sleeping with your head elevated might help. As for the ringing. Well my ears just do what they want there. Sometimes it is quieter, sometimes it is noisy. They just do their thing. Now when they are more aggravated, like after surgery, or before an attack, they do make a lot more noise. So I would think they would calm down. To tell the truth, I don’t remember if it got better after the surgery. Really I’ve lived with this varying tinnitus for so long, I just kind of tune it out unless it is really screaming to the point I can’t hear. Well, not that bad.
I would be calling my doctor and asking how they plan on removing this packing behind my ear drum. I couldn’t wait until March to find out. I’m surprised you don’t go back to your doctor for so long. Heck, I don’t remember, but I don’t think it was that long before I went back to mine.
Of course, I don’t know your situation. You may live a long way from yours. I lived just 10mins from my doctor at the time.
Good luck!
If you need me just shout out.
If you want to talk to me personally, just go to the About Page, there is a contact page there, and you can email me from there. I promise I will get back to you, ASAP.
But I will always answer from here too.
ooo hugs
wendy
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I also had packing behind eardrum it will desolve on its own. I had surgery DEC 15 I am still having vertigo and am currently in vestibular rehab because I’m so off balance. I am having terrible migraines I wish I had never had surgery done. Dr now thinks it has gone to right ear
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oh Jen, I’m so sorry you are having so much trouble. You know I have a had a lot of trouble with my ears and the doctors think I have “more than Meniere’s”. I went into this surgery after I was already Bilateral, so I had no hopes there. I know many people who this was a savior for. It really helped me for a while. My vertigo was reduced at least by 75% I would say.
But things changed with me. I go through spells. I have times where I have no vertigo for months, then I have horrible spells for a while, then I’ll go through spells of what seems like remission. It is odd. I’m odd.
I hate to hear you are having such a hard time. I hope the vestibular rehab helps. again, I know a lot of people who it has helped. I haven’t had it. We’ve talked about it recently, but I’m having a lot of hip troubles. So, physical therapy there right now. My PT is also working on my balance. After my hip is better….possibly after the hip replacement….I may have vestibular therapy. Depends on how well I’m doing. My doctors at Duke are thinking I may need to go to John Hopkins if my vertigo keeps coming back like it does. At the point I am in the disease, I shouldn’t have vertigo like I do.
Lynn, don’t let me scare you….I am a VERY RARE case. and as I said…I have “More than Meniere’s”
Jen….did you have Migraines before? are they better when you are up for a while? or when you lie down? do you wake up with one? do you often have vertigo and migraines together? Have you been to a neurologist who really understands headaches? Have they talked to you about vestibular migraines? or Migraine associated vertigo?
I have that too. Regular migraine meds don’t really address these migraines as well. I was put on a specific medication to help those migraines. it’s really a calcium channel blocker, but it is used for this too. I go to Duke’s Pain Clinic, there is neurologist there who specializes in headaches and facial pain. Well I did, I’m transferring to a neurologist at a Headache Clinic in Charlotte. I’m very lucky there is a headache specialist here too that my old doctor recommended.
With migraines, my biggest recommendation…find a neurologist that specializes in headache pain. a plain neurologist is just too varied, they have to know so much, they don’t know enough about the causes of headaches. Good luck my dear. thinking of you!
and Lynn…please keep me informed….and good luck! Really, for most people I know it does get better, and I’ve heard from a lot of people who have had this done. Most email me. Healing thoughts your way.
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I started getting migraines after my hysterectomy. They get so bad I’ve actually had seizures and passed out from them. I can not lay down at all when I have them or migraine is 10x worse. I do see a neurologist for them I’ve tried numerous medication none have worked so I’m getting ready to start topamax. I’ve not noticed vertigo and headaches being related at all. Good luck with your hip I’ll be praying for you
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Jen,
Wow, started after your hysterectomy. My migraines have gotten better after menopause. Thank goodness. Hormones play havoc on our bodies. I’m on Topamax, it helped me a lot. I’ve been on a lot of different drugs. Topamax helped me for a while, then it stopped, then when I went through menopause and they got better I went back on it and it has helped a lot. I even tried Botox. Is this the first preventative med they have tried or have you only had rescue meds before?
I have to lie down when i have one or I’ll throw up. I have passed out from one. and often throw up. I just can’t imagine lying down making it worse.
I have headaches from abnormal Cerebral Spinal Fluid, not if my pressure is high, and I lie down it will kill my head. but that is different. hopefully.
thank you about my hip.
healing thoughts to you!
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