Informal survey of Labyrinthectomy patients

1) 36

2)from time of official diagnosis ten years, but I truly exhibited symptoms for 14 years, if I just counted correctly, before having my labyrinthectomy

3)No serviceable hearing

4)Vertigo still once a week? Dizziness and off constant.

5)more steroid perfusion shots than I can count, oral steroids, endolymphatic sac decompression/mastoidectomy

6)starting to experience some tinnitus and occasional decreased hearing in other ear, post surgery

7)superficial surgical recovery not too bad though I did develop a staph infection; probably more as a result of getting BAHA implant at the same time as Labyrinthectomy.

8)I continue to eat low sodium, take a diuretic. I do not personally believe you can always do anything to prevent going bilateral. Meniere’s is hereditary in my family. Many of these individuals I’ve never met, some died before I was born. You can only try to be healthy and hope the genes aren’t activated. At least in my case, and IMHO.

9)Luckily, I don’t believe in the concept of normal. No, my life is not the same as pre labyrinthectomy. I had the labyrinthectomy to stop drop attacks, and it worked. The surgery doesn’t get rid of the disease, and people seem to forget this concept. I have balance issues, and I can’t drive. I frequently walk into things, including walls. I do not drink alcohol(I miss the occasional glass of Shiraz, but that’s all), and I remain vigilant about the amount of salt I consume. Why ask for trouble?

10)I have a BAHA, but I feel like it’s not as useful as it was. If you’re a woman, it’s also a pain trying to snap it on and not get hair trapped! I’ve become used to captions on the television, and learning where the quietest places to go out to dinner, or grab coffee, are located. It’s annoying not knowing where sounds are coming from...especially if they’re literally right next to you!

11) They didn’t know where to put me in the hospital for recovery, so I was placed on the maternity wing of the hospital all night after surgery.
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Autumn’s recommendations:
a)make sure you know which wing of the hospital you will stay in overnight. It’s not the poor nurses’ fault they had no idea how to take care of a Ménière’s patient!

b)have a family member or friend stay overnight with you at the hospital. You need an advocate. You may be too weak from throwing up to ask for pain medication, or something to drink, and nurses are stretched too then to make frequent checks. They aren’t going to just provide these things without being asked.

 

Feel free to call me for my answeres.
404-408-3515

Joe

 

Sorry, real quick.

Autumn, didn't your scar tissue problem from the laby affect your recovery?

Bulldogs, I hope someday you'll respond to these questions here for the benefit of everyone.

Such a great post Mac, thank you!

 

Good question, thanks for the reminder, Pupper! I’ll add on:

11) After both the endolymphatic sac decompression surgery and the labyrinthectomy I experienced the complication of scar tissue. No one ever told me this was a possibility with either surgery. The scar tissue has led to intense, though treatable, pain. Though I have no proof to back it up, and I’m trying to be as subjective as possible, I feel like my tinnitus would have improved tremendously had I not developed scar tissue.

 

Puppet

I have enough posts and information about my laby on this forum. I feel people are sick of hearing about it. If they have any questions or want my story they can search my previous posts or better yet call me.

No need to keep repeating my story with every new laby post.

Have a great day...off to do some surfing down at cocoa beach next week for the kids spring break. It is a passion my older son and I share.

 

Pupper.. sorry for the typo on the name.

 

1. 50yrs old.
2. 1 yr of diagnosis
3. Not much of any. Could not understand any words.
4. Every other day. Verigo would last 24 hrs
5. 2 rounds of steroids and 2 gents.
6. Good hearing in good ear. No symptoms
7. Woke up from surgery with just a short spin and that was the last one I ever had. Went back to work abut 2 1/2 months. You have to keep moving when recovering. Don't sit and lay around in a recliner. Walk, walk and walk.
8. No antivirals. I take vitamin C & D daily. Not prescribed by Dr. Low salt and occasional caffeine.
9. I drink occasionally. I eat Pizza and what ever I want and when I want it. I am living a normal life. Ride horses and compete in cutting and ranch rodeos.
10. I do not have any hearing devices.
11. I have not one regret on my decision to get the laby. Would do it again in a heartbeat. You learn to do things just a little different or slower but you have to adjust to your lack of balance. What ever you do, keep moving!

 

1. How old were you when you had the procedure? 45yrs old (Jan 2018)
2. How long did you have MM before you made the decision? 10 years...but really bad for last 3.
3. How bad was your hearing in the MM ear? 75% loss, but hard to understand words even when very loud.
4. How often (per month/week) were you having vertigo...or was it just constant dizziness? The last year was about every other day. Woozy almost always. Would get a week or so break once a quarter.
5. What procedures had you tried (steroids/shunts/gentamicin)? Steroids - injections and oral. Helped some initially, but then stopped working. endolymphatic sac decompression - which changed severity of attacks for about 5 months.
6. How was/is your hearing in the other "good" ear? Did you have any symptoms? Great hearing in good ear
7. How long did it take you to recover (weeks/months) from the surgery? 4 days in hospital. 1 more week for surgery recovery. However, 6 weeks before I could drive. I'm at 3 months and feeling good, but still bump in to walls from time to time.
8. Are you doing anything proactively to prevent MM form going to bi-lateral? (supplements, anti-virals, diet). My dr said there is no evidence any of this works. So I am not.
9. Do you now drink alcohol, eat pizza, and enjoy food like you used too (is your life back to "normal")? I'm back to normal and feel good.
10. Do you wear any hearing devices (cross-over hearing aids, baja hearing aid, cochlear implant) if not how is life with one ear? Cross over hearing aids. Working pretty good - I like it (just got it though - so time will tell).
11. Final thoughts - I wish I would have done it 3 years ago. Was in such misery. It's only been 3 months, but I would do it over again in a second. Ask me in 10 years the same question though (never know if i'll go Bi-lateral or not).

I wish you the best of luck in your decision.
Mike

 

Make sure to ask the surgeon if in your case you will be able to have a cochlear implant on the operated ear in the future should the need arise. The answer varies and you cannot depend on other people’s experince for that one. I recommend you choose your surgeon carefully and choose one with lots of experience with this particular operation.

 

If I opt for the labby (still waiting to see how the Sac Decompression surgery treats me ), the surgeon has already told me they will give me a cochlear implant at the same time. He said they have chosen to do this for all candidates.

 

^^ interesting. Do you have much useful hearing in the other ear? Used to be i thought, you had to have little useful hearing in either ear to qualify. Keep us poseted on the whole journey please.

 

Sorry mac. I did not have a lab y but i did lose hearing and balance nerve in one ear due to a different surgery resulting in the same end results.

 

1. 53

2. I had been diagnosed for about 5 years, however I struggled with it several years before being diagnosed with increased symptoms to the point of constant ringing, pressure and dizziness with serious episodic vertigo.

3. Hearing gradually decreased over the time I was diagnosed until I was about deaf in the ear by the time I had the laby.

4. By the time I had the laby, I was having serious, disabling vertigo attacks weekly, with almost constant dizziness and unbalance in between.

5. I had previously tried steroids, gentamicin as well as a sac decompression surgery.

6. Hearing in my good ear is great (probably better since the laby as the ringing in bad ear is not as bad) no symptoms in my good ear at all.

7. Physically, I was up and moving (very slowly) in a few days and moving pretty well in about two weeks. I was driving on the highway in 3 - 3 1/2 weeks. However I am currently at about 10 weeks and still have some unbalance when moving. It varies day to day and is a lot better than the vertigo, but it is there and does affect me (I won't ride my motorcycle, and occasionally stumble slightly or catch the corner of a wall on my shoulder, etc.) I have heard from some who have had the surgery that it might take a year or more for me to get back to 100% but as it is, it is only an annoyance and not a huge problem. Much better than the vertigo and it does not stop me from dong most anything I want.

8. No, I stopped all treatment of MM after the laby (I still take some of the vitamins from JOH regiment, but only because they are good for me in general, not for MM.)

9. Yes, for all intents and purposes my life is back to normal. I eat whatever I want, I drink alcohol (of course in moderation) I never stopped eating pizza ;D

10. I do not wear any hearing devices and will probably not wear any unless the hearing in my good ear starts to go bad. Life is OK for me with one ear hearing, but this is really more of a preference and is very dependent on the individual.

11. Overall, I wish I had done it sooner. I hadn't realized how much the MM had made me a prisoner until I was out from under it. Being free from MM is not only about being free from the vertigo itself, its about being free from the constant worry and fear of the vertigo. Looking back its amazing how slowly this disease took away my normal life, took away my freedom, until finally I was at the point that I wouldn't hardly ever leave the house.
My advice to anyone that will listen is.......Don't wait, its not worth it, get your life back as soon as you possibly can, life is already much too short, to waste any of it on MM is a tragedy.

 

1. How old were you when you had the procedure?
44 yrs old

2. How long did you have MM before you made the decision?
7 years. Significant vertigo in the first year, and then again in the last year. Inbetween, all the other not-fun symptoms.

3. How bad was your hearing in the MM ear?
In the end, it was just *barely* in the correctable range (by high end Widex hearing aid). I forget about the db, but it was functioning around 40% I think (60% loss or more). This would have definitely been worth saving (ie not doing a laby) since with the aid, my hearing was still really good. However, in the final months before I had the laby, after a bunch of severe attacks, I also acquired severe distortion, which the doctor said was not reversible and also not correctable with an aid. As a result my speech discrimination on that side dropped to 30% or less.

4. How often (per month/week) were you having vertigo...or was it just constant dizziness?
In December 2017, I started a period of having severe vertigo attacks that lasted 2-3 hours, every 12 hours without fail. You could set a watch to it. That continued for about 4 weeks until I had the shunt surgery in Jan. Things settled down for a few months, but the same cycle of vertigo started again in May 2018. Inbetween attacks I had horrible imbalance and lots of dizziness too.


5. What procedures had you tried (steroids/shunts/gentamicin)?
Strict low sodium, very little caffeine/alcohol for 7 years - overall I think it helped somewhat. I was too scared to go off the rails with the salt to find out otherwise.
Steroids - oral and injections at various times during the 7 years. Neither helped. I did a series (well, two... I turned down #3) of injections at the end which I think made me even worse.
Shunt surgery - Jan 2018. Only brief reprieve from the worst of the symptoms.

6. How was/is your hearing in the other "good" ear? Did you have any symptoms?
Hearing tests at 100% good but I do have some minor tinnitus on that side. At times when storms roll in, I also get the old fullness feeling on that side -- though mild and not extreme. There's a good chance that is due to vestibular migraine (MAV) which the doc believes I have as a dual diagnosis with the MM. So far, no real MM on that side, knock wood.

7. How long did it take you to recover (weeks/months) from the surgery?
My doc did the laby and BAHA implant as outpatient so I was home that evening. A couple miserable days in bed, and then slowly began moving more and more. Started going back in public places regularly (with company) by 3 weeks. Driving at 4 weeks. I am 7 weeks post surgery now. I've gone on hikes in the mountains recently for over 3.5 miles and am doing just about everything I normally would. I'm not hopping on a bicycle but then I'm not a huge biker. Not sure if I will be confident enough to ski this season but the doctor says there's no reason why I shouldn't.

8. Are you doing anything proactively to prevent MM form going to bi-lateral? (supplements, anti-virals, diet)
No, I dropped the diuretics which I'd been on for 7 years as soon as I had this surgery. My kidneys already have mild/moderate kidney disease, likely from some very strong diuretics I was put on years ago without monitoring. I also stopped Betahistine.

9. Do you now drink alcohol, eat pizza, and enjoy food like you used too (is your life back to "normal")?
It took me a few weeks but now I am eating pizza, bagels/lox, chinese food, etc with complete abandon ;D It had been so long that I'd been so strict with the sodium, I couldn't believe I could really do it. After a few weekend trips with family where I wasn't cooking I dipped my toe in and haven't looked back. It's almost too good to be true. Actually, at one point it was... one of the first things we did after surgery when I was holding down food again, was order PF Changs carry out, as I used to LOVE their lettuce wraps. I'd been making a (low sodium) version for years but wanted the real deal. Well guess what, the real deal tasted like crap to me! I'm so bummed! Anyway, for health reasons I don't plan to alter the way I've learned to cook, but this will make life sooooo much easier when out at restaurants and other social situations, and especially travel. We have a cruise booked for holiday season and I can't wait to eat whatever the heck I want on the ship. I lost SO much weight this past year from being so sick with the cycles of vertigo. I am now putting all that weight back on very quickly... I do need to dial it back a bit
I've never been a big drinker but it's nice to drink a glass of wine or a beer every now and again and not worry about the MM. I don't seem to process alcohol well like i used to now that I am in mid-40s, but that's not Meniere's related.
And I'm VERY pleased I can drink a cup of coffee every morning if i want to!

10. Do you wear any hearing devices (cross-over hearing aids, baja hearing aid, cochlear implant) if not how is life with one ear?
I got the implant for the BAHA but won't get the device part for it for another month.

11. Final thoughts - feel free to offer any other things we should know...Good/Bad - let us know what the surgeons may not tell us.
I went into this surgery with much trepidation but now on the other side, I am SO glad I did it. Life wasn't much fun, and barely manageable, in the months before I had the surgery. I have three kids at home, ages 6-15, and they deserve a mom who can reliably interact with them, drive them places, and *be there*. I was none of those things in the end. I also have freelance clients depending on me, as well as a spouse, and friends etc. I am not recovered 100% yet but I am leaps and bounds beyond where this crappy disease had me a few months ago. For me, it was worth it 100%.

 

We are all so helpful to each other. It restores your faith in people. What a nice thing this internet machine is.

 

1. I was 63 when I had the laby.

2. I'd had MM for 17 years.

3. I had no useable hearing in the bad ear -- i.e., zero word recognition. My good ear was consistent with my age.

4. I would have flare periods with frequent disabling vertigo, up to 3x per week with 1-2 days to recover. I was not driving, barely able to leave the house (twice had to be rescued and brought home by a neighbor when I went for a 5-block walk). At home I carried a bucket with phone, water, rescue meds (valium), and towel from room to room.

5. Steroids -- once oral and once intratympanic -- offered no noticeable help.

6. I don't have symptoms in my "good" ear, which has mild decline of hearing typical of age.

7. The recovery was 4 months or so before I felt I could do whatever I wanted. There is still a tiny bit of imbalance remaining, which I notice only occasionally.

8. I'm not allowing myself to think about going bilateral because worrying about it is pointless. I find high-sodium foods less appealing for the most part. My vertigo episodes were highly correlated with deviations from the low-sodium diet.

9. I do enjoy most foods in moderate amounts. Getting Meniere's really upped my cooking game, and I still choose low-sodium ingredients and lots of fresh items that I prepare myself. An occasional pizza, glass of something alcoholic, bits of sausage and cheese, etc. enrich my life now.

10. I had a BAHA (bone-anchored hearing aid) implant at the time of the laby. It doesn't help as much as I'd hoped, but is better than nothing. I had tried CROS hearing aids prior to the surgery but didn't like putting something in my good ear and thought the BAHA would have better sound quality. I don't enjoy listening to music as I once did.

11. I was surprised to find how much the constant Meniere's anxiety had affected me, and how terrific it was to finally have my confidence restored and be able to appreciate the world around me. I'm deeply grateful to all those on this forum who encouraged and supported me throughout.