Labrynthectomy Side Effects
Posted , 5 users are following.
I've posted before noting my history of meniere's disease which I've had for more than 8 years and all the various treatments I've been through: water tablets, yoga, sac decompression, gentamicin. After the 4th gentamicin injection not being effective I opted to have the labrynthectomy procedure just two days ago. I would like for others who have had this procedure share your after-the-procedure experience. As of today I feel disoriented, nauseous, imbalanced, lack of appetite, increased tinnitus and fullness ---- everything but vertigo. I realize everyone is different but it would help to know what I might expect in the next few days, weeks, months, (years?) I thank you in advance for sharing your experiences.
0 likes, 14 replies
Guest benjamin80326
Posted
Hi. I have not had that procedure but I had much of what you are describing after my sac decompression. I did, however, have vertigo episodes for the month after that procedure. It took about 3 months for things to start settling down. I can't say that all is perfect but is somewhat better than before. My balance has improved quite a bit. I would like to know more about your experience when things settle with you since I don't know what's in store for me with this horrible disease.
Best to you.....
benjamin80326 Guest
Posted
Hello. I was very much optimistic after the sac decompression. My younger brother had the procedure done for his meniere's and he has lived vertigo-free for more than 15 years now. My procedure lasted no more than 18 months before the vertigo returned. Perhaps you will be as lucky as my brother has been. I think all us meniere's disease sufferers deal with the disease the best way possible and knowing this brings faith to all. Thank you for your note.
wendy45166 benjamin80326
Posted
Hi Benjamin,
I had the Laby done June 2018. Let me first say that I can only attest to my experience, as we know everybody is different as to how they respond to a treatment. I can tell you it was the BEST decision I made and I don't regret one minute of it. Yes days 3-4 were awful with the nausea, but again part of the process. Doctors kept me on a compazine/zofran regimen while in hospital and it helped. Once I was discharged the ride home started off a little ruff but I layed back in the seat and did fine. I believe the first week I was at home I stayed with the nausea med regimen as I was adjusting to the environment (even though I was at home) and didn't want to take any chances of getting sick. After that I really didn't need the nausea meds unless I got in the car and rode. As far as balance, once I was at home for a few hours I did fine and didn't even use the walker. I pretty much stayed in the house. The 2nd week I started venturing out on the patio and front porch and let me say its a whole new environment, but after a couple of days doing that I was good and was able to walk up and down driveway. Now saying that I took it slow and would at times teeter but would just stop regroup and start again. I did go to out patient vestibular rehab and it helped ALOT. I would certainly recommend that. I would say after about 2 weeks I was fine at home and moved around just great. Four weeks after surgery I was doing things I hadn't done in months! I am happy to report by 3 months I was back at work, driving, shopping, went to a concert, took the grandbabies to the zoo! I have had no issues. Prior to surgery I would maybe get 2-3 hrs of an entire day of not spinning and puking. Now I will say that by the end of the day when I am getting really tired my brain says no more... will not compensate for left and I start teetering and my words get a little jumbled and I know its time to put it down and either rest some or go to bed. I have had times where I was at work (as I work 7pm-7am) and by about 2-3am after running around crazy (I work in Labor and Delivery) I would lay down for a couple of hours and get up and go again and I was fine. Please DO NOT get discouraged about the nausea and balance. Remember you lost a major function on the left side and the right side has to learn what to do for the left. It takes just a little time. You will notice a difference each week of things you can do and how much better they get. I still have a small of amount of humming/ringing and the fullness but doc said I will probably have that forever. I will say mine is very minimal and it doesn't even bother me. Compared to what it was before it could be louder and I wouldn't mind it. I do notice still with barometric change it does get fuller and a little louder but again compared to before its NOTHING! I finally have my life back and able to enjoy it! I did purchase the Phonak hearing aids and am adjusting to those. It has taken some time to get use to them. I actually like not wearing them. I don't hear things as well obviously but that is just my preference. I do have to wear them at work and its hard sometimes to tell where sounds are coming from as everything seems to come from my right side (hearing aids take everything on the left and transmits to right ear.. hence the reason all sounds sound like they are to my right) Please feel free to email me if you have anymore questions or issues. I still have all my out patient therapy excercises and papers if you would like me to scan them and email them to you. You do these excercises at home and they are simple and will help you tremendously. If I can answer anymore questions please feel free to contact me. I will help in anyway I can. again have PATIENCE and DO NOT GIVE UP.
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Ali_is_my_name wendy45166
Posted
I am happy to see things are good for you now, could you please tell what sort of rehab excercises you do? any youtube video link?
wendy45166 Ali_is_my_name
Posted
Hello there. I started off looking at an eye chart. I was to shake my head left to right keeping my vision fixated on the clearest line. Do this excercise 3 times a day for about 15 min. You will notice to get it from becoming blurry it will be small steps. I tried at first moving my head left and right in a normal fashion and realized I could not do that. I had to slow down. It took a couple of weeks to master it, but I did. Next get a ball and hang it with string in the air. Write letters of alphabet on it. First make it swing to and from you once again keeping your eye fixated on one letter. 3 times a day. Next take the ball and make it swing side to side. again keep eye fixated on one letter. Next take the ball up to the left shoulder and release it down and follow it. then again with the right shoulder. This exercise will typically take about 2 weeks to master. It sure helped me alot with motion. I sometimes would have some motion sickness but again it didn't bother me enough to have to go back to taking any medications. Start with those and we can go from there.
Wendy T
benjamin80326 wendy45166
Posted
Hello, Wendy. Thank you for sharing your very comprehensive, positive experiences after your labrynthectomy. You certainly went through a lot, but as you say it was the BEST decicision. I'm beginning to believe that mine was the best decision as well. It's been a week since my surgery, and though my head is still in the "clouds" the sun shines more and more every day. I tried braving driving three days post-op but had to stop and have someone take the wheel. It was too much of a dizzying experience. I'll have to wait up on driving for a while until I feel a bit more confident. I have had vestibular therapy before so am applying many of the same exercises that was taught me then, e.g., staring at object while moving head up/down, back/forth, tandem walking with focusing on object and moving head back and forth. I also go on the treadmill twice daily for 10 minutes walking without holding on to sides, very slow of course. I'm positive I will be in better shape when I see my excellent doctor for my post-op follow up next week. Already 80 I look forward to a few more good years, God pray, vertigo-free. It'll be nice to go visit my family in Hawaii again without the fear of flying with vertigo. Wendy, once again, thank you for sharing your experiences. They bring hope. God Bless. Ben
Guest wendy45166
Posted
HI. I Very happy to hear about you successful outcome. Did you have the sac decompression prior to this procedure?
wendy45166 benjamin80326
Posted
HI Benjamin!! I have been watching to see how you were doing!! I am so glad to hear you are feeling better! I had the fogginess for about 4-6 weeks. It will get better eveyday! Once again just waking everyday knowing no vertigo is worth millions. I am glad to finally be back up again living life again! Best wishes to you sir!!!
wendy45166 Guest
Posted
Hi Rubye,
Yes I did. Did not work for me. I have started with the dexamethasone injections, then salt diet, then added the lasix, then did sac decompression, added scolpamine patches (which did help tremendously however has side effects of blurred vision and dry mouth. Vision got horrible, and got dehydrated so had to stop the scolpamine patch, last was the gentamicin injections. Only thing I did not try was betahistamines as I see several people have been on those. I myself and doc opinion my disease was progressing so rapidly that the above regimens were to late. I was good off and on for about 5 yrs with just dexamethasone injections. All the other came within a yr and it progressed quickly to the vertigo. I spent the last 9 mo with vertigo starting maybe 1-2 a week about 15-20 min a day to full blown wake up in the middle of the night spinning and lasting about 8-10hrs...daily! Hence the reason for the Labyrinthectomy.
Guest wendy45166
Posted
Hi Wendy,
Thank you so much for sharing. As I was reading your response, I had to remember to breath since it sounded so much like my plight to date. I have the same treatments. I also tried betahistine but it caused things to get worse for me. It was prescribed after the sac decompression.
I am following the labrynthectomy discussions because I am still navigating this process. I remain hopeful that I can get a period of relief after the sac decompression but I am still adjusting. No vertigo for 4 months but the residuals are tough. I am still off balance at times, involuntary movements of head, floating feeling, etc. Any pressure in the ear causes the sensation of an impending vertigo attack. Feels like it's barely contained. Barometric changes does not help.
Your story just opened up hope for me in the event that I have to go down that path.
wendy45166 Guest
Posted
Rubye ,
I hate your having so many issues. I will tell you I weighed all the pros and cons for me and it was the right decision. There is a 25% chance the disease can go to the other ear and if so, not a whole lot that can be done due to decision of laby on the left side. I had to look at it as I had no life couldnt work, and wasnt able to really function. If I didnt do the procedure then I knew 100%what life was going to be. If I did the procedure I was guaranteed 99% of no more vertigo and could resume a normal life again. No guarantees how long as unknown if it will go to other side, but I was willing to take the chance and live while I could!! You are never promised tomorrow. That's what made me feel confident in my decision.
Guest wendy45166
Posted
Thank you. Great advice. I totally agree. I believe in the quality of life without question. I feel blessed that my left ear is working well.
wendy45166 Guest
Posted
Rubye,
I will say some extra prayers for you this morning as I always pray for all those effected by this life altering disease! Please keep me updated as to how you are doing.
Guest wendy45166
Posted
Thank you. Will do.